Stop. Think. Autism.

Happy New Year! (Yes...I am still here...)

2008-12-28T18:15:00.000-08:00

My apologies for having fallen off the map here. I've had some personal issues going on, and finding the time and energy, let alone the thought process, to blog has been nearly impossible. It is my hope to be back up and running (well, writing!) at some point down the road. I am going to make a true attempt at reading my fellow blogger's pieces (as I've not done so lately and I miss reading all you have to say!).

I want to wish everyone a Happy & Healthy New Year. It is my hope that 2009 brings about great change for autistics, change that leads to acceptance and services and open minds.

Take care,

S.L.

Remembering Katie...

2008-07-21T20:00:00.000-07:00

Tomorrow is Katie McCarron's birthday. This loving and cherished girl would have been 5 years old. My own words simply wouldn't be adequate to celebrate Katie's life, so I shall honor her with the words of her loving Father and Grandfather. Each time I write an entry on this blog, I think of Katie. Every time someone asks me why I blog and why I am so passionate about these issues, I think of my own sweet daughter and also of Katie. So many of us have been eternally affected by this adorable little girl, taken from this world far too early.

From Katie's Grandfather, Mike McCarron on AutismVox:

I would like to say something about Katie. Some newspapers have reported that this was done to end Katie’s pain; let me assure you that “Katie was not in pain”. She was a beautiful, precious and happy little girl. Each day she was showered with love and returned that love with hugs, kisses and laughter. Katie loved music; she would fill in some of the words in children’s songs as my wife would sing along with the CD that would be playing, their own version of “karaoke” . She liked to dance, she loved to do the “hooky poky”. She loved being in among flowers and tall grass. She would say “I like grass”. She enjoyed the zoo and because of all of the drills and flashcards she could identify the animals. Which I thought was pretty amazing for such a young child. She was also the only little child in her non-autistic play group that could identify an octagon. My wife and son had a party for her the day they heard that from the teacher.

She enjoyed having her grandmother dress her in new little outfits and dresses, and I think this is important. We have four grand-daughters, my wife loves to buy them frilly little dresses. When my wife went into a store she would never ask for three normal dresses and one autistic dress. I think we need to be very sensitive to the special needs of these children but at the same time not be oblivious to the numerous typical traits that are also developing. Katie was first and foremost a little girl, she enjoyed people making a big fuss over how pretty she looked. My wife would take her to the beauty shop to have her hair trimmed. Katie enjoyed going to the mall and looking in all of the stores and windows. These are female things.

She went to special schools everyday, the staff at those schools cherished her. I can not say enough for the staff at Mariposa. They were so very much more than professional therapists, they adopted her and loved her deeply. Katie was so lucky to be with them everyday.

There is also another young lady in North Carolina who worked with Katie during non-school hours. The bond that she had with Katie was unbelievably deep. I am amazed that a single Mom working to raise a son by herself could find so much extra love. Maybe love is one of those special resources, the more you give the more is given back.

Katie loved the park, the swings, the slides and being outside. She played with her dolls and toys; she loved “teletubbies” and brought joy to all of those that had actual contact with her. Yes, she was autistic. Developmentally she was behind other children. But her small victories would create unbelievable joy for those who loved her. I can not describe the ecstasy of having her little arms around my neck or of watching her and my son roll around on the floor playing in shear happiness.

Each day I ask the Lord if I could take her place, and perhaps He could return Katie to the loving arms of my son and my wife. So far that prayer has not been granted. But in the meantime I can assure you that no one will describe her murder as “understandable” or devalue her in anyway without my personal challenge to them and the organizations they represent.

I must apologize for the length of this post, please know that I keep each of you in my prayers.

Katie's father, Paul McCarron made this public statement earlier this year:

"If the measure of a person's life could be quantified by the number of people that loved them, then Katie, in her brief 3½ years, achieved well beyond all of us," Paul McCarron said...

"I ask all parents, and especially those of children with disabilities, to always love your children and be proud of them," Paul McCarron wrote in his statement. "Cherish every moment you have with them. Love, patience and tender efforts are the best therapies."

Kev has also written ever so eloquently here, "Dear Katie."

We remember, with a smile and prayer, beautiful Katie.

A Savage Side Note

2008-07-21T14:14:00.000-07:00

I must add--as you may have read previously in my blog--I agree somewhat with Mr. Savage to the point of over-diagnosis. I've even contemplated if Jenny McCarthy's son possibly has other diagnoses, and not autism. I wonder if a lot of the so-called "recovered" children were never really autistic to begin with. I have seen allergies wrongly labeled as ADHD and behavioral problems. This does happen. There are also parents, a very small amount, who essentially "shop" around for an autism diagnosis. I would feel comfortable saying there probably are children out there labeled as autistic, who in fact are not. But, surely, no one would even ponder that 99% or anywhere near that number, of those said to have autism really don't (and furthermore, that they are brats).

I will also say that I feel we have become a society who wants only instant gratification, and that includes forcing pills down your child's throat so they behave more appropriately. To put a child on medications (especially say a 2 or 3 year old) first, without attempting therapy and other help, should be strongly discouraged. And, to medicate a child just so they are more docile, to prevent stimming (which is not self-injury), and so forth (and not because the child has severe issues, is harming themselves, severe mood swings, etc.) really should not be an option. All too often, autistic individuals are drugged to near-coma states, locked up, and forgotten about. This should not be tolerated.

I also feel for Mr. Savage, apparently his brother died in a NY mental hospital. That has to be awful, to go through that first-hand. I don't know much of his experience, other than a brief statement I found. But agreeing with Mr. Savage on his views regarding medications for children and sympathizing with him over his brother, does not excuse the ignorant and inappropriate statements he made.

Savage Ignorance

2008-07-21T13:20:00.000-07:00

Unless you've been hiding under a rock (or on the road traveling like me), you have heard of the ridiculous comments made by radio talk show host Michael Savage about autism.

From several sides, his comments are offensive--and very flawed. Let's start with this claim that in "99 percent of the cases, it's a brat who hasn't been told to cut the act out. That's what autism is..."

Really? That has got to be one of the most ignorant statements I've heard with regard to autism (and trust me, I've heard plenty). So, Mr. Savage, you mean to tell me that only 1% of the children who are diagnosed with autism--who attend special programs, therapy, etc. for their autism--only 1% are actually autistic? Based on those odds, it's very likely that in his mind, my daughter or anyone of her classmates must not have autism, or the kids who attend the same therapy center, most if not all, are not autistic. Right, that makes perfect sense Mr. Savage.

Then there's the fact that he views autism as a "fraud, a racket." I'd love to hear how exactly he concluded this. Is my daughter acting, putting on a show? Are we as a family gaining something from some sort of sham, from "faking" autism? Exactly what kind of "racket" do we have going on? I'd love some explanation--but again, these are some of the most ignorant and nonsensical statements about autism I've ever heard.

He spirals even further downward, placing blame on the fathers (which is an interesting twist, typically it's us moms who get the blame from misguided people). Apparently, Mr. Savage also is unaware of girls like mine, who are also autistic. His rant centers around the idea that boys are not being yelled out by their fathers, and that's why they are being diagnosed with autism. Fathers, according to Savage, should tell their sons:

"Don't act like a moron. You'll get nowhere in life. Stop acting like a putz. Straighten up. Act like a man. Don't sit there crying and screaming, idiot."

This was especially disturbing to me. Not too long ago, autistic children were called many horrible names by the medical community. Today, sadly, there are too many in society who still refer to our children with vicious insults. The words "putz" and "moron" (and "dummy" which Mr. Savage also said later on) were bad enough, but "idiot" really enraged me. Years ago, my child would be labeled an "idiot savant." She has an extremely high IQ, uneven skill sets (splinter skills), yet her social, adaptive, and communicative skills are rated in the very low to low range.

I never thought much about the word "idiot," it easily rolls of the tongue of most people. But in the last few years, it's had new meaning to me. Our neurologist first said "idiot savant" following our child's first IQ test, explaining how a person could have a genius IQ along with developmental delays, etc. We were utterly perplexed by this concept. Our neurologist said "the outdated term you may be familiar with is 'idiot savant'." I know how society used to treat "idiots" and "idiot savants." I also know how history has a way of repeating itself. This is not a word I would ever use in reference to autism or autistic individuals. Shame on you, Mr. Savage!

I would invite Mr. Savage to come stay with our family for a week, or even a day. Then perhaps he could enlighten me on how we were benefiting from this autism "racket," and how my child was really just a "brat." Maybe he could show my husband how better to berate my child, so she wouldn't act the way she does. I wonder what Mr. Savage would say to the neurologist, psychologist, developmental specialists, pediatrician, special ed teacher and para, and multiple therapists who see my child, have diagnosed her, and so on. Are they all in on this sham too? I am curious to hear this man's recommendations.

Savage's comments are, at best, a big fat waste of breath. I considered not even writing about them. They are ridiculous, and not really worth my time. However, Mr. Savage has a huge following (upwards of 10 million listeners) and therefore his words can alter millions of people's views on autism. That can be dangerous. The last thing we (autism families, autistic individuals, and society as a whole) needs is more stigmatizing, stereotyping, and mocking.

On Vacation...

2008-07-13T17:55:00.000-07:00

Hi all,

Just checking in to let you know I am on vacation. It's a long one this year, just about 3 weeks. We've traveled quite a bit (plenty of stories to write about in the following weeks!), visited with family & old friends, and, as always, hopefully are changing others' ideas of Autism every day. I have lots to write when I get back. For now, it's too hectic for me to find time to blog. Which is a good thing, it means we are having fun. Thanks for stopping by.

If this is your first visit to my blog, hello and welcome. Here are some of my personal favorite posts:

Autism Knocked On The Right Door
Autistic and Proud
High Functioning? Then Shut Up!
More Inspiration (From Joshua Eisenstat's Family)
My Autism Everyday
Where Is All The Autism Awareness?

I've written extensively on Jenny McCarthy as well:
Is Jenny Really An Autism Mom?
Yes...she still is very much into the whole Indigo & Crystal thing, plus it seems she gets her vaccine advice from an entity known as Kryon, and there's more I've compiled here.

For the next week, I most likely will not be blogging. But, check back after 7/24 for new entries.

Thank you,
S.L.

Attention Autistics & Fellow Family Members: ABC Wants To Hear From Us Again

2008-07-06T17:45:00.000-07:00

I'm not entirely sure what this presentation will turn out like, what the focus will be, and so on. I thought I'd send this along though, hopefully we can ensure that our voices can be heard (once again).

ABC News Seeks Submissions for iCaught: OnCall+ Autism
Thursday, July 3, 2008
By: Carin Yavorcik

Share your stories via video

ABC News is presenting an opportunity for you to share your personal experiences as part of a special hour on Good Morning America Now: "OnCall+ Autism." You can also send a question about autism that may be answered by a top medical expert in the field.

ABC News is looking for video submissions on the following topics:
1) Your thoughts on living with autism or with loved ones with autism
2) Any questions you might have on autism to be answered by our medical
experts

Most digital cameras now have a video function that allows the user to record 30-second to 1-minute videos. Once recorded, you can upload the video to your computer the same way you'd view digital snapshots. ABC News is specifically requesting 15- to 45-second videos.

How to submit:

1) Via cell phone:
Record a 15- to 45-second clip and email it to: icaught@abcnews.go.com

2) Via the web
Click on the red "RESPOND NOW" button
Videos submitted by the end of July may appear on ABC News NOW!

Gabriel Poirier - We Cannot Forget

2008-06-27T04:09:00.000-07:00

I wrote about the death of Gabriel Poirier the other day, but this article was emailed to me, and I wanted to post it here. I wanted to write more about Gabriel, for one because many (like myself) had not heard about his death until this week (he died in April). Also, and most importantly, because I don't want any of us to forget him--a nine year old boy, innocent, simply attending school. We have to remember Gabriel, and his parents. Please visit this article by Graeme Hamilton at the National Post.

MONTREAL - After nine-year-old Gabriel Poirier was discovered lifeless in his classroom last April 17, his parents were told their autistic son had stopped breathing after hiding under a heavy therapeutic blanket.
Now a coroner has revealed that Gabriel's teachers had tightly wrapped him in the buckwheat-stuffed blanket, leaving only the tips of his ears sticking out, as punishment when he became disruptive. They left him unsupervised in a corner for 20 minutes, returning when a timer sounded.
Gabriel was unconscious and blue in the face. He was rushed to hospital, where he died the following night surrounded by his family.

It's pointed out in the article that weighted blankets can have therapeutic benefits. Our eldest happens to use one, it helps her sleep issues. Our youngest has used weighted lap pads, backpacks, and utensils. She also enjoys being "squished" by two pillows, bean bag chairs, etc. It is very calming. But, as Gabriel's father points out, what this school did to his son was not therapy, it was abuse.

"He was only 53 pounds, he was so small," Gilles Poirier, the boy's father said at a news conference yesterday. "How can they wrap him up like that in a 40-pound blanket? How can this treatment be tolerated?"

Not only was he wrapped four times by such heavy weight, but his entire face was covered, and obviously, he was trapped. Even more disheartening were the lies the school told the media and to Gabriel's parents. More from the family's lawyer, Jean-Pierre Menard:

Mr. Menard said the parents were surprised to learn Gabriel had been placed in the blanket as a punishment. The school board had initially said it was a natural death and that Gabriel had gone under the blanket on his own.
"The principal said they found Gabriel under the blanket and he wasn't breathing. The parents thought that something had happened while he was sleeping and that was how he died," Mr. Menard said. He said the school board later told the media that Gabriel had hidden under the blanket.

How a school could lie about Gabriel's death is beyond me. I hope they will be held accountable, and that real change is made regarding restraints. The article ends with this:

Mr. Poirier said he cannot understand why his child was placed in a restraint. "He was a very gentle boy," he said. "Sometimes he was loud, but he was never aggressive or violent. I just don't understand how this happened," he said, tears streaming down his face.

We can't sit idly by while such tragedies occur. My heart goes out to the Poirier family. I have not seen a picture of Gabriel, but there is a picture of his parents here--I feel images are so crucial to making an impact. We have to vow to never forget Gabriel.

Where Is All The Autism Awareness?

2008-06-26T09:47:00.000-07:00

This is a new story, yet the theme is nothing short of disgustingly familiar. Another autistic child being kicked out, this time from an airplane. We've seen this play out time and time again, with children being booted from school, church, the movies, and Boy Scouts. Where is all the Autism Awareness?

Here we are, trying to live our lives with our children. And all too often, the treatment we receive from those in society ranges from rude to cruel. The stares, snickers, and whispers are one thing. But lately, it seems the job of parenting an autistic child and that of simply being an autistic person has become increasingly more difficult. The message that we, and our children, are an inconvenience and need not be tolerated is becoming quite clear. There was a time when it was thought community was where you turned to when you needed assistance. The idea of reaching out--whether to your church, your school, or other community groups, seems more difficult for autistics each day.

Now, I will say, I look at things on both sides. In fact, prior to my experiences with my youngest, I may have agreed with the airline's position. I may have believed that kicking this mother and child off the flight was the only option. And to any who feel this way, I say walk a mile in our shoes. I have seen time and time again, the intolerance toward autistic people, and people with disabilities in general, is shameful. I am not surprised that this flight crew was forceful and abrupt, and that they did not attempt to work with this mom and her son. It was only a few weeks ago, that AutismVox wrote about an incident in the security line with her son. What more is needed, for society to become tolerant of our children? The sad truth is, most would prefer we keep our kids away.

With all this "autism awareness" everywhere, I ask you this: where is all the understanding? Does it matter that someone knows what autism is, or the figures 1 in 150, or that Jenny McCarthy "recovered" her son? No, obviously it doesn't. It's gotten us nowhere. Proper care is still very limited, we are still lacking in options for teen and adult autistics, services are frustratingly limited. Autistic children and adults are being abused and killed, as I wrote about recently. Autistic individuals, and their families, are discriminated against. All of the money raised in the name of "autism awareness," all the signs at Toys R Us, the pretzels, the CNN coverage...and where has that gotten any of us?

Here We Go Again: Autistic Boy Kicked Off Of Flight

2008-06-26T08:28:00.000-07:00

I have to tip my hat to society--if it weren't for its' continued intolerance of autistics, we'd never hear "autism" uttered so frequently by every news agency in this country. The last several weeks have brought on a barrage of stories about autistic individuals. Some have been more positive, sadly, most have been about autistic children being excluded (or much worse).

On Monday, two and half year old Jarett Farrell and his mother were on an American Eagle flight, on their way to visit family in New Jersey. Jarett, who is autistic, was having a tough time and was upset. It it should also be pointed out--many young children have difficulty on an airplane.

His mother says she was doing all she could to calm the autistic boy, but got no sympathy from the flight crew.

"If they just would have been a little more understanding I think that none of this would have been a problem," Mother, Janice Farrell said.

Instead, it only got worse:

"She kept coming over and tugging his seatbelt to make it tighter, 'This has to stay tight'. And then he was wiggling around and trying to get out of his seatbelt. And she kept coming over and reprimanding him and yelling at him," Farrell said.

One of the pilots came back to the cabin with a stern warning and Farrell says the frustration level escalated.

The pilot turned the plane around, and the mom and child were "escorted" off the flight. And, just to ensure no one would be confused about what was going on:

"The pilot made an announcement that there was a woman and her child on the plane and the child is uncontrollable. And at that point I just broke down," Farrell said.

We are taking a family vacation this summer. After much discussion, we decided to travel by car. This decision will take much longer, be more costly, and we still are not certain how either of our children will handle it. However, when we thought about flying, and the many delays and cancellations my husband has faced, it seemed we were better off driving. We'd also heard of at least one other child whose flight made an emergency landing, because she was crying. Friends of ours recently had an experience where a flight attendant placed her hands down on their son's (who is not yet 3) legs, trying to force him to sit in his seat (they were about to land, and he wanted to sit in his mother's lap). Other passengers were outraged, and made complaints over this crew member's behavior.

We thought long and hard about our daughter, at the airport, on the plane, and so on. What if our flight was delayed? How would she handle long security lines (this story in particular was concerning)? What if we were stuck on the tarmac? What would happen if she had a meltdown mid-air? All of those questions and concerns made us lean toward driving.

Yes, our decision to drive (which we made almost 2 months ago) was our own. I feel better knowing we will be in our familiar car, and not have to deal with strangers and others who may interfere or do otherwise should our child have a meltdown. Knowing how the airline companies have handled other situations, I was honestly anxious thinking of flying with my daughter.

I have to wonder though--if society (including airline crews and airport staff) was more tolerant and these stories weren't so common, would I still feel the same?

Jennifer Lopez Sings for Autistic Students (Video Clip)

2008-06-23T19:37:00.000-07:00

I found this news clip about Jennifer Lopez's performance at P.S. 37 in Staten Island. I wanted to share, it was a joy to see the kids dancing, and being so happy.

Another Senseless Tragedy...

2008-06-19T16:15:00.000-07:00

People who prefer to find blame in vaccines, often look at us who embrace neurodiversity as being unrealistic. We even are accused of not having our children's best interests in mind. First and foremost, after years of studies continue to find no link between vaccines and autism, why is there still a debate? Why is anyone wasting their breath on this? All the money and media mention--for what?

Those who hold onto the hope of a cure for autism and support pouring millions into such research, also look at us in this same light. Let's be brutally honest here: there will never be a true "cure," not in the traditional sense of the word. What will come in the next several years, most likely, is a prenatal screening for well-documented "autism genes" or other markers for autism. Then, just like we've seen with Down Syndrome, pregnant women will be counseled to abort their fetus based on the positive autism test. A secondary "cure" would most likely be a combination of medications and supplements. There will never be a "magic pill" or procedure to "rid" someone of autism.

So, with all of that in mind, these same people continue to attack those on the ND side of things. We are called every name in the book. There is plenty of confusion as to what Neurodiversity means (as well as what Autism awareness should be), and what so many of us are fighting for. For me, and for most of the parents I know, we are fighting for better services for our children. We want programs created and funded now for teen and adult autistics. We demand better teacher training, employer seminars, first-responders' awareness on autism. We see a dire need for better options for autistics and their families: living arrangements, vocational and education programs, and so on. We also desire our children to be accepted by society, and at the very least tolerated in our communities. We want the world to embrace our child, and see all the gifts we see (for all our children, all over the spectrum).

Our concerns stem not only out of the love we have for our children, but from our fears that arise hearing about stories of abuse. Talk about intervention and treatments (that are respectful to autistics), yes. But how can any of us spend another minute blaming vaccines and promising cures, when our children are being abused, neglected, and killed?

Gabriel Poirier was nine years old when he was suffocated to death at his school. The details of his death are horrifying, and we yet to have all of the facts (like, why the teacher thought this was a viable option?). From The Gazette:

On April 17, Gabriel began to disturb his class with loud sounds. After being told repeatedly to calm down by a teacher, he was rolled in a weighted blanket. With his arms by his side, he was left on his stomach for over 20 minutes with only his toes exposed.
When the teacher went to check on him, he was "listless and blue in the face," the Coroner's report said. The teacher called 911 but the boy was already in a deep coma and passed away the next day in the Sainte-Justine hospital.
"He was a very gentle boy. Sometimes he was loud, but he was never aggressive or violent," Gilles Poirier, the boy's father, said today.
The parents' lawyer, Jean-Pierre Ménard, said vulnerable children like Gabriel need better protection.
"We're asking Minister Courchesne to implement a legal framework to regulate how these children are handled," Ménard said.

To think of how terrified Gabriel must have been as he gasped for breath, and the pain his parents are feeling--we cannot look the other way. My heart goes out to his family and friends. We must all learn from Gabriel's story, and not let his death be in vain. This is yet another wake-up call: our attitudes toward autism and autistics needs to change. What is it going to take to for all of us, autism parents and society, to come together and ensure such a tragedy never happens again?

In the words of Gabriel's father:

"Things, or action should be taken to prevent this, to never happen again."

For more information on how you can get involved, please visit these sites:

End Abuse of Children in Residential Programs: ACT TODAY!

APRAIS - The Alliance to Prevent Restraint, Aversive Interventions, and Seclusion

CAICA - Coalition Against Institutionalized Child Abuse

Jennifer Lopez Sings For Autistic Students

2008-06-18T18:04:00.000-07:00

This is a pretty cool story:

NEW YORK — Students at a Staten Island, New York, elementary school for autistic children sure like the way Jennifer Lopez moves.

Teacher Kathy Amati and a paraprofessional showed the video for Lopez's "Let's Get Loud" to the students at P.S. 37. The children liked it so much, they wanted to watch it every day.

They learned the lyrics and the dance moves from the video.

With their teacher's encouragement, they wrote to Lopez, hoping for pictures or an autograph. Instead, she asked to come to their graduation.

On Tuesday, the singer-actress performed "Let's Get Loud" for a group of eight 10- and 11-year-olds at their graduation ceremony.

I applaud Jennifer Lopez for giving those children such a wonderful graduation gift! I also salute the teacher & para who brought music--singing and dancing--to these kids. Sounds to me that these are the types of teachers we need teaching our autistic children (perhaps something other educators could learn from). Also, it's nice to read a positive story on both school staff and autistic students.

I was so pleased to find out my daughter's school has weekly music therapy. That is probably one of her most favorite things from school. And, nothing fills me with more joy than seeing my little one sing and dance...

High Functioning? Then Shut Up!

2008-06-16T08:21:00.000-07:00

That's the message sent loud and clear by nearly every autism organization (in the media spotlight: TACA, Autism Speaks, et al.) these days. They don't care what you were like as a child, what your struggles were, or the issues you face now. If you are able to speak to reporters or blog or live independently or hold down a job, they don't need you. Rather, they'd prefer you just shut up and go away.

Oh, but wait...but they do need you. Sometimes, at least.

A lot of the comments from the ABC piece were, as expected, the same regurgitated message we hear lately. The idea that those with Asperger's (or that are "high/er functioning" as they put it) can't possibly be on the same journey as those with classic autism. Don't listen to them. That's not the autism my child has! Those people have no right to speak for the autism community! And yet, it's amazing who they do want to represent the "autism moms" of the world. It's also interesting to see how these people determine what "high functioning" is and what it isn't. It's also curious to learn their criteria, if they have any, for "Autism Recovery."

This group (typically the anti-vaccine and pro-cure folks) presumes that an individual living with Asperger's has not faced any struggles. That they don't have sensory issues, meltdowns, social or communication issues. Basically, in their eyes, they have no business being on the autism spectrum (hello?!). They apparently have never been bullied, don't have problems at school, have no trouble living independently, and all can easily find jobs. Anyone who knows an Aspie or someone who is (as others would classify as being) "higher functioning," can attest, this is not the case. Not to mention, the now-Aspie adults who were previously diagnosed with classic autism as a child. Unless those individuals can be used to further sell their "cures" and you agree to be exploited, labeled "recovered," they don't want to hear from you.

They treat us parents who find joy in our autistic children in the same manner. We are crazy, foolish, and even sometimes seen as harming our children. Really--harming them by not injecting them and not forcing supplements down their throats. Harming them by not subjecting our children to needless and harmful chelation and a myriad of other "treatments." Harming our kids by letting them know we respect and love them? We parents who are not suffering, we are a major inconvenience for these organizations. The parents and autistics who believe in and promote neurodiversity, are even described as being "radical."

Neurodiversity is about real civil (and human) rights. People all along the spectrum are being abused, discriminated against, and are not given equal protection. Many have to fight (and sometimes lose) in order to get the right to an education, to work, and even to participate in our culture--and that is the entire spectrum.

It's interesting to me--those who are seeking a cure (and are disgusted by acceptance or "neurodiversity"), are very quick to use the "1 in 150" stats, and employ them to make a case that there is indeed an "autism epidemic." Yet, they continually discredit adult autistics. When autistics speak, they are the first people to dispute what is being said.

The "1 in 150" includes the entire spectrum. You can't pick and choose how you interpret that number (the one that points to an "epidemic"). You can't use a certain subset of autistics only when they, as a number or statistic, suit your needs.

I had drafted this last week just following the Neurodiversity segment on TV. I read Joy of Autism last night, where this myth along with others are brought to our attention:

4. Biomed autism advocates like Jenny McCarthy's TACA group need and use "higher-functioning" autistic people in their statistics to try to prove there is an "epidemic" on the one hand, while stating on the other that they are not "severe" enough to speak for autistic people.

These myths really need to be addressed by all of us, and especially by groups like TACA, Autism Speaks, and so forth.

Days of Our Lives, With Autism

2008-06-13T08:11:00.000-07:00

Yes, autism once again comes to daytime soaps. "Days of Our Lives" will have an autism story line, starting June 24.

BURBANK, CA (June 10, 2008) – The growing autism crisis – which has recently drawn increasing national attention -- is addressed in a personal manner beginning in the June 24 episode of NBC's daytime drama “Days of our Lives” in an insightful story based on the experiences of the series' head writer, Dena Higley...

...Dr. Lexie Carver (Renee Jones) and Commissioner Abe Carver (James Reynolds), are told their 3-year-old son, Theo, has autism. The news of Theo's diagnosis is understandably hard for the couple to comprehend, but through the love and support of family and friends, and the love for their son, they learn a lot about their family and how to cope with this tremendous, new challenge.

Higley is married to Mark, her husband of 21 years, and together they have raised four children -- two biological and two adopted. Their eldest, son Connor, was diagnosed with autism at the age of 3. Now 19, Connor drives his own Mustang, has a black belt in Tae Kwon Do, recently graduated from high school and is preparing to go to college in Florida in the fall...

You can read the full story here. It's complete with words like "emotional trauma" and "autism crisis." Oh, they do mention "hope" and "achievement" as a "possibility." As if it's something that may happen. I think the story of Connor Higley (an autistic individual who has a black belt, drives, and is on his way to college) has potential to show the world another side of autism. But I won't hold my breath.

This may be the last happy family portrait for the Carvers, knowing Autism Speaks' record. The early days of diagnosis (and perhaps all of childhood) will be dark and depressing we can assume. I wonder if there will be any silver linings, if they'll show any good from Lexie and Abe's day with their autistic child. One has to hope that at the very least neither Abe nor Lexie say they are pondering driving off a bridge with their autistic child.

I guess we can breathe a sigh of relief, since Autism Speaks has yet to fall to Katie Wright's belief in that autism is caused by vaccines and that biomedical intervention is the only way to go. Phew. Could you imagine TACA or Safe Minds taking this on? You'd have a child who was talking, smiling, giggling on the day the receive their vaccines. The next morning, the child is "in his own world," and the mother cries out "somebody took my son!" They are angry and devastated. Doctors lie to them, say there is nothing wrong, then ultimately diagnosis this child with autism. Desperate, they find their way to a DAN! doctor, spent thousands on various tests, and have their answer. The story line could be "vaccine injury" or "mercury poisoning" etc. They would show the child's treatments: GFCF diet, 20+ supplements, B12 injections, and chelation. Over the weeks, the child would begin speaking and "coming back" to the family. Ah yes...what a soap opera that would be.

On a side note, there's this study using soap opera (yes, soap operas) as therapy for autistic individuals.

Warning: This Is Nothing To Laugh At

2008-06-11T23:12:00.000-07:00

If someone feels they are an Indigo and they believe in this concept, that is one thing. I don't agree, but who am I to judge? However, if your beliefs are in any way detrimental to children, I take issue. Major issue. Here is the start of my concerns over the Indigo concept.

From here, it is suggested that "vibrations" will interrupt seizures, among other startling claims:

From vibrations sounded mentally that will interrupt seizures and stabilize brain function to attitude adjustments which free mind and body from long-standing, stagnation-producing concepts to the mental and emotional state of the comatose, the research is astounding and deserves to be noted, explored, and utilized more widely.

This site offers ill-advice for a febrile seizure:

If a seizure occurs, keep your child upright if possible and make sure she is breathing well. Reassure her. If she vomits, turn her on her side.

As a mother of a child who has seizures, this is awful advice. We have always been told to immediately put our child on a safe, flat surface (it would be impossible, at least during my child's grand-mal/tonic-clonic seizures to sit her up). If she begins to vomit, we turn her slightly on her side so she doesn't choke. Here is what NINDS advises:

To prevent accidental injury, the child should be placed on a protected surface such as the floor or ground. The child should not be held or restrained during a convulsion. To prevent choking, the child should be placed on his or her side or stomach.

I fear that there may be children out there who are not being properly treated for seizures (thankfully, it seems Jenny does take her son's seizures seriously and he is treated medically for them, but others may not be so wise). It seems likely that a child diagnosed with ADHD, autism bipolar, etc. whose parents feel s/he is a Crystal, may not be afforded all available help or treatments. There are people who, despite the best efforts (at alternatives like talk therapy), they need antidepressants or anti-anxiety medications. Without, they can be at risk for suicide or other negative outcomes.

As I read more into the Indigo concept, I couldn't help but draw even more similarities to Scientology. The dangers that have come from Scientology's stance against all things psychiatric have been widely, and tragically, documented. I came upon this, and it would seem that New Earth Magazine looks highly upon L. Ron Hubbard (founder of Scientology):

As an aside, L.Ron Hubbard of Scientology says that the more they can avoid the indoctrination of the school system, the better off they are in this world.

I think extreme caution has to be used when a group disregards medically-accepted diagnoses and treatments. They continually dispute scientific studies, promote conspiracy theories, and regurgitate the same information and sound bites over and over again. When this group storms Washington, D.C. and promotes an ongoing campaign to alter the (historically substantial and successful) vaccine system in the U.S., it is concerning. When this same group and its bombshell messenger employs tactics in an attempt to oust a government official, we need to take note. When they are given nearly free range on the media, to push their propaganda, we cannot sit idly by.

I've mentioned my concerns previously with regard to Ms. McCarthy and her message. Personally, I have nothing against her as a human being. I can relate to her, when she speaks of her son's seizures. However, the reality I face is that there is a startling lack of services for teen and adult autistics. My daughter is still rather young, and I do have time. However, I know plenty of other families and individuals who are in great need of those lacking services NOW. And, it's clear that unless major initiatives are made soon, we'll face the same issues with our daughter in a few years.

Jenny, despite what some will claim, has done nothing to further this effort. She continues the stigma that autistics have been "kidnapped" or her personal favorite, "hit by a bus." She focuses on recovery, telling the world she doesn't know of any adult autistics (so why bother creating any new programs?). Her loud cries that she would never vaccinate a child again and that she feels you should alter a proven vaccine program, is risky.

I worry for what the future will bring my child--will she have proper assistance? paths to independence? acceptance? And now I fear if I can protect her from outbreaks of whooping cough, measles, and the like. It's clear that this disturbing message will sink even further from my goals. We have no time to waste, to get programs created and funded for teen and adult autistics. This is all a huge distraction, one that unfortunately, all of the public is listening to.

You now know where this is headed. There is nothing funny here at all.

Today Autism & Recovery, Tomorrow Crystals & the New Earth

2008-06-11T17:44:00.000-07:00

These previous writings have led to this. There has been talk amongst the autism community as to whether Jenny still believed her son was a crystal and she, an indigo. Her Indigo Moms website disappeared without explanation overnight. Many had wondered and assumed she had left these beliefs behind, and her focus was on autism recovery and vaccines.

Well, we now have an answer. As you learned from the previous entries, much of the Indigo/Crystal belief system revolves around the idea of over-diagnosis and overuse of medication with regard to Autism and ADHD. Not to mention messages from Kryon himself that say we give too many vaccines today. So, Jenny's new message actually isn't much different from her Indigo identity.

The Phoenix has another view on the Indigo thing. For those who have missed her Indigo Moms website, have no fear, it shall return soon. And, it seems, Jenny's next book is self-described as an "Indigo book." She is leading a movement alright. But perhaps not the same one that thousands (1,500-8,000 strong--depending on your source) of her "followers" believe in. It seems that her mission is to come out with the autism/recovery and anti-vaccine message first, and all of this will slowly lead into full-blown indoctrination of Indigos and Crystals.

To listen to this interview from The World Puja Network, you have to log-in to this site. It's a quick sign-up procedure. The show is called “CosmiKids' Inspired Parenting” with host, Sandie Sedgbeer. I have emphasized in bold the terms and words related to Indigos. The interview begins around roughly 26:00 minutes, it took place a couple of weeks prior to June 1, 2008 (it's air-date). The highlights (my rough summary and amateur transcripts):

JM: "I believe that without a doubt, Evan's vaccinations triggered his autism."

She then expands on other "triggers" of autism such as environmental mercury, pesticides, herpes, etc. Not surprisingly, zero mention of genetics. She clarifies with,

JM: "But the major one that's playing the biggest role right now are the vaccinations."

Talk continues on about the number of vaccines given compared to previous years. Discussion of the GFCF diet and supplements. Jenny says that sentences came after GFCF diet, recovery from autism (became "fully conversational" as she puts it) after treating her son's yeast issue.

JM: "It's like a ticking time bomb of you know and I...you know what a really good scenario is--is these kids,these kids with autism are really the canaries in the coal mine, you know, they're the ones that are showing us the effects of what is happening around us and they just happen to be more sensitive to it. And we can either take their warning and do what I did, and alter my lifestyle to a healthier one, or you can, you know, go down with the ship or be stuck in the mine with no oxygen. It's really them "tweet, tweeting" I keep saying. These are our canaries, and everyone needs take a look, listen to the messengers and let's start doing something about it."

We heard Jim Carrey declare the "canary in the coal mine" metaphor at the Green Our Vaccines (now also known perhaps as "Kryonize Our Vaccines") rally. Expanding on this generation of parents (the moms who follow their intuition and don't just sit around and let things happen to our children), Jenny says:

JM: "We're definitely the Indigos, you know, breaking down these walls so this, you know, New Earth behind us can happen."

I had honestly missed most of the "Indigo" language, until this point. I heard "Indigos" and was rather surprised at that. When I listened again to write it down, I heard "New Earth," but it didn't mean much to me, until I learned it's a part of Indigo (see Children of the New Earth) After the following statements, I looked into the Indigo "concept," and learned what those terms mean. Now realizing the significance of those words, it's clear that Jenny is still well-immersed in the Indigo/Crystal deal. At 45:34, this question is asked:

SS: "You mention the word Indigo. What happened to your Indigo Moms website?" JM: "You know I had to take that down and I was so sad to take it down, for a while anyways, it'll be coming back up. People got really confused because I was coming out with Evan's autism at the same time. And, they thought that I was healing Evan through Tarot cards instead of biomedical treatments.

So I realized I had to separate my messages and I had to take down one message which is the indigo and crystals, for now. I said, 'oh the world is getting confused with these two different paths,' you know. I consider them to be one. But people aren't quite there yet and I kinda had to, not lower my vibration, change my vibration to focusing on the world hearing that message. Hearing that biomedical treatment does help these kids.

And then, slowly, you know I can put it in my speeches. and then in my last book I talked about the indigos and crystals. And I'm just like, I'm really following source, kind of I felt the need to do that, I'm just kind of dribbling it here and there until people, you know, have that spiritual awakening of spirituality."

Either immediately after this statement, or later on, she reiterates this,

JM: "I was definitely feeling that from source."

When speaking about her new book, JM says:

JM: "It's really an Indigo book."

The interview ends with Jenny's message to the listeners:

JM: "The parents...the parents. It is time to take back your power. It's time to remember your power. Go within. Remember you have a voice. We are the seekers and doers of change and it is possible as long as you believe it. So join me in this collective awakening, in this new world, so we can have a perfect world for our kids."

And they call us radical? This last "rally cry" could just as easily be found on any Indigo site or message board. This same type of language and message are seen time and time again by the Indigo/Crystal believers.

So, I pose this question: How will the anti-vaccine group be altered once Jenny goes all-out with her Indigo message? Since it's apparent that Kryon and the Indigo concept is against most vaccines, at least that message will remain the same. But will the entire group get behind her, and also believe in the Indigos, Crystals, and Kryon? I wonder how many of those who follow the DAN! protocol and are against vaccines already believe their child is a Crystal?

Kryon On Vaccines

2008-06-11T17:42:00.000-07:00

Yes, Kryon, the entity behind the Indigo child concept. Here is what he says, apparently having been channeled, on vaccines:

QUESTION: Dear Kryon: I've read and heard information for and against immunizing against various diseases, particularly those that affect children. Can you help me understand immunization? There are many options for immunization now. Are all necessary for children?

ANSWER: This is good science and was brought to you early so that you and your children could extend your lives. The original "mixture" for immunization that was created for the few basic diseases is still good for you and your children. However, there is now a tendency to increase the immunization to include over 17 different targets (or more). There's a problem with this, and it has already shown itself, but is not yet understood.

Ask for the original mixture if you can get it. It's the safest and most viable.

QUESTION: Dear Kryon, I have a new grandson. He's going for his first vaccination in the next few weeks. If we're beginning to transmute toxins with reconnections to our endocrine system through our DNA, then what happens to our babies, who by law have to be vaccinated? What are your thoughts on this subject?

ANSWER: First, know that vaccinations are a God-given science that humanity earned. They're a tried and proven homeopathic method that have been with you for years. You were probably vaccinated yourself, and it worked.

We have three answers: (1) God is not in a vacuum. Even the vaccinated Human Being who's older can modify and rework their DNA. So there's no time limit, and there are no rules that say "Once vaccinated, you're ruined." (2) The Human who is of the age of awareness can say, even as they are vaccinated, "Let nothing inappropriate enter my chemistry." This is a conscious instruction given to your "intelligent cellular structure" (the same one responsible for kinesiology and homeopathic results). This will result in your cells only using what they need and casting away everything else. (3) Finally, about babies: There has been a push by your science lately to vaccinate against many things at the same time. You'd be advised to seek out a doctor who will only vaccinate your child for only the basic diseases that have been known in the last 40 years. Eliminate the vaccinations for the new ones. This leaves you with approximately seven or eight - the very ones that have been used for years. What your science is not appreciating yet is the results of combining all the vaccination substances together. There's a problem that will show itself in time. Stick with the basic ones.

Now, it becomes more clear perhaps what Jenny means when she and her followers state "too many too soon" and "change the schedule!" Perhaps "Kryonize Our Vaccines" just didn't flow as well as "Green Our Vaccines."

Indigo Mom's Insights?

2008-06-11T17:13:00.000-07:00

These are some questions and answers from Jenny McCarthy's interview with Doreen Virtue, from "An Indigo Mom's Insights - September 2006." Keep in mind, Jenny's son was diagnosed in 2004. The complete interview can be found here. It was on the Indigomoms.com website, which (for the time being) is defunct. You really need to read it in its entirety, you will learn about the schools that Jenny wants to open up, how McDonald's is the reason your child is hyperactive, alternatives to Ritalin, learn about crystal children's nightmares, and what the future will look like. Here is just one exchange, trust me, read the rest!

Doreen: When I go to Australia, I cry, because those Indigos, they ask what do I do? And I can’t tell people what to do. Their angels have to tell them. But they’re so ready. The Indigos of the world need a leader. They need a Joan of Arc.

Jenny: I’d talk to them.

Doreen: They do, they need a Joan of Arc to say, “follow me!”

Jenny: I will. I will be doing national news next May with my new book.

Doreen: Great!

Jenny as Joan of Arc? More from Jenny as an Indigo Mom:
June 2006
July 2006
August 2006
September 2006

Autism Acceptance: The Indigo & Crystal Way?

2008-06-11T16:26:00.000-07:00

On one hand, the Indigo movement (or whatever you want to call it) claims to "embrace" children with differences, and that crystal children should be respected, that their "differences" are meaningful and are gifts. Crystal children, it seems, are essentially kids who have sensory integration issues, autism (or autistic symptoms), ADHD, gifted children, etc.

When I further "researched" the Crystals and such, I was surprised to find some similarities between them and those who speak of acceptance for autistics. For one, this group of people are very anti-medication. Many members of the Autism Hub, feel medication is overused. Most of us hold off on medication except for seizures, self-injury, debilitating anxiety, etc. We don't simply put our child on drugs because they are diagnosed with autism. And we are certainly against autistic individuals being drugged and locked up in institutions. Another similarity was the belief that these "Crystals" are a further step in "evolution," and somehow a higher state of being. I have heard more than one Aspie speak like this. Very controversial, for sure, but another correlation between these two groups.

From the Starchild website:

In my book "The Care and Feeding of Indigo Children", I wrote that ADHD should stand for Attention Dialed into a Higher Dimension. This would more accurately describe that generation. In the same vein, Crystal Children don't warrant a label of autiem. They aren't autistic! They're AWE-tistic!

These children are worthy of awe, not labels of dysfunction. If anyone is dysfunctional, it's the systems that aren't accommodating the continuing evolution of the human species. If we shame the children with labels, or medicate them into submission, we will have undermined a heaven-sent gift. We will crush a civilization before its had time to take roots. Fortunately, there are many positive solutions and alternatives. And the same heaven that sent us the Crystal Children can assist those of us who are advocates for the children...and its a good direction!

So, I find it even more interesting that the belief system, if you will, that Ms. McCarthy holds near and dear, has such a theme of acceptance. They promote the idea that diagnoses like ADHD and autism are wrong, and given too often to these "crystals." Which further begs the question to Jenny: is it really all these Crystals being misdiagnosed--and not really a rise in autism or ADHD cases? Or is it the vaccines? I'd be interested to get her take on that.

I find it odd that in one breath, McCarthy speaks so highly of the Indigos and Crystals, and one would then think she would be accepting of her son's uniqueness (i.e. autism or autistic traits). And yet, the message of Jenny McCarthy is one of "fixing" and "altering" these children (with the goal of recovery, i.e. being indistinguishable from their peers). She tells us that her "perfect child" was "all of a sudden" gone. She now proudly declares she "recovered' him and that he now is no different than his peers.
Kryon's statement on Autism can be found here (click on "Autism). I must admit, I find myself agreeing on at least two of these statements, the first that Autism is genetic or at least something that a child is born with, not something they "catch" later (I have said before I feel my daughter was born the way she is, that it is a core part of who she is--not something separate nor caused by toxins, etc.). The second, is the last statement in the answer:

Perhaps it’s time Humans moved a bit in their direction, instead of teaching them how to exist in yours?

The Indigo and The Crystal

2008-06-11T14:30:00.000-07:00

I've gathered some information, a primer if you will, on the Indigo and Crystal belief system. You will find these terms and definitions helpful for my next couple of entries. I have opted to not make an outright judgment call on the believers in this, except for how it may interfere with autism (and ADHD). Checking out the Skeptic's Dictionary is also helpful, there is a lot of background information on this.

Terms/Definitions

"Source" also known as "Spirit" as in:

"The color associated with the Crown chakra is white or deep purple and its function is the direct connection to Source or Spirit."
"They are so directly linked with Source that they can easily understand and tap into the Divine resources."
"We can in turn heal our children of imbalances by going directly to Source and filling our hearts to be healed with Divine love and light."

The New Earth, as mentioned here:

GOLDEN AURAS, HUMAN ANGELS AND MULTI-DIMENSIONAL CONSCIOUSNESS

The Indigo and Crystal children that come to the planet are known as "starchildren". Often this is because their souls are more at home in the stars, and they have not incarnated on Earth before. They come at this time as a "special assignment" team to assist Earth and her inhabitants with their transition and rebirth as a higher dimensional "New Earth".

Many Indigo and crystal children are already almost at this point of awareness, if not fully within it. As are many of the Indigo-Crystal adults who have made the transition to this state. It is these new beings, able to claim both their human and angelic inheritances, who will create the New Earth.

For Human Angels there is work to do. Creating a New Earth that will bring Heaven to Earth. And since "heaven" is not so much a place as a state of consciousness, these Human Angels must work to bring the higher dimensional states of consciousness to the Earth plane. Once this is achieved, then a planetary culture will be birthed that will respect all beings as manifestations of the Divine Essence. And this culture will reflect that respect in its peace, harmony and creativity.

Indigo and Crystal Children

Indigo
Indigo children usher in a new energy that is transforming the planet around us. They are groundbreakers, creative rebels and independent thinkers, people who will go their own route and leave people and things around them changed.

Crystal
Crystals instinctively channel healing energy. Their crystal nature enables them to pick up energy and aura colors from the people around them. They are acutely sensitive and are even more likely to become healers and lightworkers than indigos, but need space to themselves and a lot of care.

Many crystal children are born autistic or die in infancy because they are so remarkably sensitive. It has been suggested that the indigos are here to transform the world to one in which the crystal children can survive and do their work.

More "facts" on Crystal children can be found here.

Vibrations, further explained here:

They are called higher vibrational because of the way their auras work. All colours (and all things, for that matter, since everything is made of some kind of energy) vibrate at different levels. The higher an object's vibration, the less connected it is to this physical world. Colours such as Red, Green, Orange, and Magenta are low level vibrations and so they associate more closely with the physical world. Yellow, Tan, and Lavender are examples of Central colours (between a low vibration and a high one) and Indigo, Crystal, Blue and Violet are known as the Higher vibrations.

Just as the lower vibrational people are connected to the physical world, higher vibrational people are connected to things outside of our reality. Although they all vibrate at a high level, each colour has a different level at which they reverberate. This makes each one different.

Perhaps this is another "rebranding" that Kirby himself can reveal when he's ready to change his beliefs, yet again:

The trouble comes about when the Crystals are judged by medical and educational personnel as having "abnormal" speaking patterns. It's no coincidence that as the number of Crystals are born, that the number of diagnoses for autism is at a record high.

One other note, on where the "Indigo child concept" was born:

"The Indigo child concept was first publicized in 1999 by the book The Indigo Children: The New Kids Have Arrived, written by the husband-and-wife team of Lee Carroll and Jan Tober. Carroll insists that the concept was obtained via conversations with a spiritual entity known as Kryon."

*For clarification, because my husband asked this question and I don't want anyone else reading this to get confused: The spiritual entity involved in the creation of the "Indigo child concept" is known as "Kryon." Not a "Klingon."

Accomodations vs. Exclusion

2008-06-11T07:46:00.000-07:00

Sharon left a comment on this earlier post. This is her reply:

It's a double edge sword. It's great that AMC is accommodating.

But it sucks that we have to go to a "special" time because most people don't understand and are not willing to accept.

I think what she says is so true. I was hesitant to comment that my initial reaction about these "special move showings" was very mixed. I too think it's nice when businesses (as well as schools!) make accommodations, and this is no exception. There is a theater about 40 minutes away who also offers such showings. We've never gone, because of the drive. Also, for now, the 2-3 times per year we go to the movies, things have gone fine. I was startled reading this article, as my child has gotten up and danced around, jumped, scooted up and down the steps. So far, and I guess we are lucky, no one has complained. We try to go to shows that are less crowded, prepare my daughter ahead of time, and always have an aisle seat.

I suppose if my child were kicked out of a movie, I would drive the extra distance to the special showing. However, at the same time, I think I would take extreme issue with the theater. I would certainly let my views heard, to say the least. I have been in the movie with a baby crying (and not just for a second, I mean repeated crying, and this was in an R-rated movie). We all see the obvious "turn off your cell phones!" messages on the big screen--and yet, phones ringing is still an issue. Plenty of adults are annoying in the theater--critiquing each part or just talking aloud. In every children's movie I have gone to see, there's always been at least a couple of children speaking or whispering, laughing louder and longer, etc. The point is--whatever movie you are seeing, chances are there will be some distraction. You are in public, people. What do you expect?

It would be nice if the public wouldn't simply point at our children and say their behavior is unacceptable. It's a double-standard. If you truly cannot sit in a public theater and put up with some noise or distraction, then I suggest you stay home and rent a movie. The same goes for you if you are at a family restaurant (I'm talking about say Chili's, Friday's, etc. not Tavern On the Green!) and a child is "annoying" you. Stay home! If you go out into public, you must be tolerant of others, plain and simple.

One the flip side of that, I do appreciate special accommodations. My child happens to do fairly well in theaters, but I can see the benefit of lower sound, altered lighting, and no trailers. I can see this as being the only way for some families to attend the movies together. There is something to be said about being in a comfortable environment, where everyone understands your child. I know that when we get together with families from my daughter's special ed class, it seems to be an easier, more relaxed time. None of us need to explain or feel judged if our child behaves a certain way. No one stares if our child stims or has a meltdown. We've all "been there, done that." It is so nice to be with a group that you can relate to, and who relates to you. It feels safe, and I suspect our children feel the same way.

It would be nice if our children would all be accepted, and society would be more tolerant. I think, as messages like this come into the mainstream, we will get closer to that. For now, it seems like a nearly unattainable Utopia, and as such, our only option may be separate programs (in some cases) for our children. I do push strongly for inclusion, no doubt. But, I do see a place for special accommodations--even if that may mean exclusion some of the time.

Their own day at the movies...

2008-06-11T00:14:00.000-07:00

By Karen Nitkin |Special To The Sun

It all started because Meaghan Ross wanted to dance.

Last summer, Meaghan's mother, Marianne Ross, took her to see the movie Hairspray. Because Meaghan has autism, and Marianne knows she can get excited during movies, she chose an early-in-the-day showing, when the theater would be nearly empty.

During the show, the Elkridge 8-year-old was so enchanted by the upbeat music and energetic dancing that she began to move her body. She wanted to dance in the aisles, but instead she was asked to leave the theater, her mother said.

"She got kicked out because she can't really sit still," said Ross. "She flaps her hands and gets really excited. ... I was just so upset when she was kicked out. She was just the picture of pure joy."

Pure joy--that's often how I describe my daughter in those moments. Those times when she is dancing, jumping, flapping, and giggling. I'd never think my child would get in trouble for being happy. Go figure.

Meaghan's mom was amazed that the AMC general manager agreed to her request: create a showing just for children with special needs. The first movie had 300 people in attendance, and they've had them monthly since November. The movies are at 9:30 in the morning, there are no trailers, and special care is taken with regard to the sound and lighting. AMC is considering adding this to other markets. I've heard of similar programs at other theaters. I think many of us can relate to what these parents have to say:

"It's just ... everybody understands," said Ross. Before the show starts, the lights are adjusted until "everybody is satisfied," she said. The sound is likewise adjusted, and during the movie, people often move around or talk. "Anything goes," she said. "We're all in the same boat."

"The world is so cruel to people who are different," said Michele Schwarzman. But at the AMC films, she said, "we can sit in the theater and nobody will comment."

This story was in the June 6, 2008 Baltimore Sun, you can read the complete article here.

End Abuse of Children in Residential Programs: ACT TODAY!

2008-06-10T18:34:00.000-07:00

I received this from ASAN and wanted to spread the word. Please call your Representative and urge them to support and vote yes on H.R. 5876!

Grassroots Action Needed for Approaching Vote

June 10, 2008-After swift approval by the House Education and Labor Committee
on May 22, The "Stop Child Abuse in Residential Programs for Teens Act of 2008"
(H.R. 5876) appears headed to the House floor for a vote next week.

The bill is a welcomed response to thousands of allegations of child abuse and
neglect at private residential programs (therapeutic boarding schools, wilderness
camps, boot camps and behavior modification facilities) for teens with emotional,
behavioral or mental health needs, reported by the Governmental Accountability
Office (GAO).

Although some parents find such programs helpful, protections are needed
because too many children are being abused and nobody is watching. H. R. 5876
would make available information to help parents make informed choices about
their children's care in these placements.

H.R. 5876 was introduced on April 23 and is sponsored by committee chairman
George Miller (D-CA) and Representative Carolyn McCarthy (D-NY). It would:

Keep teens safe with new national standards for private residential programs.
Prevent deceptive marketing by requiring disclosure to parents of qualifications,
roles and responsibilities of current staff and of substantiated reports of child
abuse or violations of health and safety laws. Programs would also have to
provide a link to or web address for information on all private residential programs
kept by the U.S. Department of Health and Human Services (HHS).
Hold teen residential programs accountable for violating the law by requiring
HHS to conduct unannounced site inspections at least every two years.
Civil penalties up to $50,000 would be levied for every violation of the law and
parents would have a federal right to sue program operators that violate the
national standards.
Ask states to step in to protect teens in residential programs by providing grants
to states that develop their own standards that are at least as strong as the
national standards and inspect the programs in their state at least every two years.

Under Chairman Miller's leadership, this issue has garnered much-needed
attention. The Committee's website has links to testimony from an April 24
hearing, where the GAO and other experts testified and presented a follow-up
GAO report.

Please Act Today!

Urge your Representative to support H.R. 5876 today and to vote yes when
the bill is considered on the House floor.

Call the Capitol switchboard at 202-224-3121 and ask for your Representative's
office. You can also call your Representative's direct lines, available on his
or her website through www.thomas.gov/

Now is the time to end abuse and neglect in private residential programs that are
intended to help teens with behavioral, emotional and mental health problems.

Autistic and Proud

2008-06-10T12:29:00.000-07:00

If you missed the piece this morning on Good Morning America, you can find it online here. There were some wonderful moments, both from Ari Ne'eman and Kristina Chew. I was delighted that ABC included the Ransom Notes campaign, and how our community came together and dissolved it. Transcripts from the show are also available on ABCNews.com as well.

Ari Ne'eman said this early on in the interview, when speaking about a cure for autism, and why some parents are upset over this:

"I think that one of the key issues to remember is that anti-cure doesn't mean anti-progress," he said.

That is so important. People hear "acceptance" and they assume ignorance and even laziness. Accepting my child, accepting autism, does not mean I sit around and allow her to struggle through her life. What it means is that first and foremost, I see her and treat her as the unique, beautiful individual she is. I respect her and love her. I have learned so much from her, she is a gift, and I really am lucky. I do all I can to help her, to ensure she has the skills she needs to reach the next step (realizing it may take a long time to get there, and there may be hurdles along the way).

"Where does disability come from? It comes, in many respects, from a society that doesn't provide for an education system that meets our needs. From people who often discriminate or bully or even injure us, and from a society that is largely intolerant," Ne'eman said.

Society is very intolerant, we see that time and time again. I have always thought of my home as refuge from the world--and now for my youngest, refuge from a society that can be very cruel. I see it in stranger's eyes when she is having a meltdown in the store (the "can't you control you child?" or "what is wrong with you?" stares and glares). Or the perplexed look on another child or even parent's face if she is struggling to do something (a milestone achieved by children younger than her) or when she is hyper, spinning in circles or making odd vocal noises. You don't realize how judgmental the world is until those moments. I always had such hope for the world, it's easy to become jaded when you are in my shoes. Judge me, that's one thing. But, I never dreamed society would judge a young child. It's disgusting.

Lenny Shaffer, a writer with an autistic son, says of the movement, "You're a handful of noisy people who get a lot of media attention, but you don't represent a broad swath of the autism community."

Ne'eman believes history is on his side.

"I can't think of the civil rights movement throughout history that hasn't been faced with resistance and misunderstanding on the part of its detractors," he said.

I really have to disagree with Mr. Shaffer's perception of the "Neurodiversity" or autism acceptance or autistic pride (or whatever else one may call it) movement. I see our numbers growing each day. I see it most apparent out in the world, with parents of other children in our community. To be honest, most of the parents who I know who feel as I do, they simply go about their day and their life. They aren't seeking media attention or attending rallies. They have no beef with the government or with vaccines or anything else. They focus on helping their child, dealing with the schools, and just with living life with autism. Those who feel it is wrong for us to "accept" autism, they tend to shout louder and love the camera. But, I honestly feel that we are a rather large, and growing, part of the autism community.

"We really try and understand him on his own terms," she said.
That is her advice for parents dealing with a child's autism diagnosis and feeling hopeless.

I couldn't agree more with Kristina. I'm grateful for having (by coincidence and luck I suppose) known a few parents of older autistic children just prior to and around our diagnosis time. They gave very similar advice. There was always a lot of optimism in their message. I have never forgotten their words. My daughter has made tremendous progress, I credit part of that to the fabulous doctors and therapists we have (and knowing she was delayed and needed help before age 1). The other part, and I strongly believe this, is that she has a loving place of acceptance to live in. We do not force her into how we think she should be. We realize she often finds comfort in rocking, flaps when she is excited, and has her own "brand" of play. We understand that eye contact can make her uncomfortable. We do our best to prepare her for social outings, changes in routine, etc. We follow her lead, in many ways. I don't think she would be where she is today, if we focused on changing behaviors or actions that society perceives as odd. She is so connected to us, and each day opens up more to us. We'll be able to help her so much more, because she will know we are trying and that we respect her.

The interview ends with Kristina saying this, a beautiful message that we all should remember:

"Acceptance, to me, is the beginning of hope," Chew said.

I want to thank Ari Ne'eman and Kristina Chew for their wonderful interviews. I truly feel these messages are what will lead to change for our children and for adult autistics. I applaud ABC, along with Deborah Roberts, Michelle Major, and Jonann Brady for doing this piece. I hope it is only the beginning of many more.

TUNE IN!

2008-06-09T21:15:00.000-07:00

I'm very much anticipating this one! Will you be watching too? And, really, it should air TUESDAY, June 10!!!!

Tomorrow, Good Morning America will air a segment discussing the neurodiversity movement, featuring comments from myself, Kristina Chew of the Autism Vox blog and Dr. Thomas Insel of the National Institute of Mental Health. Please tune in between 8 AM and 8:30 on ABC. Click here for local listings.

Regards,
Ari Ne'eman
President
The Autistic Self Advocacy Network
1101 15th Street, NW Suite 1212
Washington, DC 20005
http://www.autisticadvocacy.org
732.763.5530

Inclusion

2008-06-09T18:39:00.000-07:00

Following the Alex Barton story, the topic of inclusion was one many were discussing. Friends and family have talked to me about it. I think, first and foremost, inclusion has a place and should be available to every child. I'm a big believer that not only do disabled students gain from an inclusive setting, but that the typically developing peers gain a enormous amount (tolerance, understanding, to name two) as well. I also feel that inclusion is not always the answer, not all the time. Some children do better in a small classroom setting. Some need more supports and services only available in a special education class. The bottom line is this: inclusion should be available to every student. "All qualified persons with disabilities within the jurisdiction of a school district are entitled to a free appropriate public education." For some that will mean a (separate) special education setting, for others mainstreamed with typically developing peers, and still for others, a mix of both. Whatever the individual outcome or placement, the goal should always be in finding the most appropriate setting for each child.

My daughter is in a special education program at this point. Our district, and truly our state, is not one that has wonderful services for autism (or anything else under the special education umbrella). I don't even know if I could call the services "bare bones," as that seems like giving them too much credit. We have talked seriously about moving, especially when our child gets older, to have more services (specifically ones catered to her needs). I would say only about 60% of her needs are being addressed and met in her program. We supplement with private therapies and accommodations (provided by us).

There is discussion of mainstreaming her in a year, that is the goal for this upcoming IEP. Part of me is excited to have my child in that setting--in the event she is supported and it is a positive experience. Our school primarily opts for pulling children out for services, and is not quick to offer a para to a child. For parents like us, we are left having to decide whether we risk our child having a negative experience (too many students, lack of routine and understanding, not enough supports, etc.) in a regular classroom or if we are holding her back by keeping her in a special ed class. We should have more options available, but sadly, there are not. So, we begin to focus our thoughts on inclusion and making it work.

I have found some websites that look to be helpful (I've only spent a bit of time on each):

PBS Parents - Inclusive Communities "Learn about improving the overall quality of life for children with or without disabilities by promoting inclusion and respect for differences."

Paula Kluth's Inclusive Classroom Site
"Toward more inclusive classrooms and communities"

Inclusion Connection
It is the mission of the Inclusion Connection to advocate for persons with disabilities, supporting them in realizing self-determined lives, educating families and promoting inclusive communities.

Celebrating All of Us

Operation Respect "The inclusion of children with special gifts and needs in a compassionate environment that allows peer recognition of the unique character of each child or adult produces what can only be viewed as an island of humanity, caring, respect, and peace." - Peter Yarrow, founder of Operation Respect

Positively Autism has some information on inclusion, including this study:

Positive outcomes have also been reported for children with autism who participate in inclusive programs. According to a review of research conducted by Levy, Kim, and Olive (2006), the presence of typically-developing children in educational programs for children with autism was reported to have positive effects on social skills and behavior for the children with autism. In a report on an inclusive preschool program by Jan S. Weiner (2002), it was reported that one-hundred percent (nine out of nine) of the preschool children who completed the inclusion program (three of whom have autism) went on to attend a general education Kindergarten classroom, versus a separate special education classroom. This is a very small number of participants, so we do need to keep in mind that these results may not be typical for the larger population, but I think that the results are encouraging. Additionally, three out of the four preschools that participated in the project elected to continue their inclusion programs, even after the research funding ended.

Lisa Jo Rudy points out that inclusion just may not work for everyone. That's something many of us can relate to. I think each student should be looked at as an individual. Simply carrying an autism diagnosis should not pigeon-hole that child into special ed. Likewise, just because another autistic child was successful being mainstreamed, that does not mean it will work for every other student.

It's interesting, I've known parents on both end of the battle: those who are wanting more special education services for their autistic child and those who are pushing for inclusion. I think schools need to start with a clean slate each time a new child enters their district. The administrators and those who play a role in the student's placement should be free of prejudices and the stories of past children. History can play a nice role as far as recommendations, though. For example, "this" worked for another student and we wonder if it is a good option for this child. Aside from that small use of past experiences, it's important for schools and parents to come together, and devise a child's unique plan for educating each autistic student (hence, the name individualized education plan!).

Is Jenny Really An Autism Mom--and Why Should We Care?

2008-06-08T16:00:00.000-07:00

Why am I concerned as to whether or not Jenny's son really is autistic? Why have I bothered to spend a few hours researching various conditions for these related posts? There are several reasons. First, I am not attacking Ms. McCarthy, I am simply trying to put some pieces together and ponder some possibilities (perhaps even offer insight). She herself has said several times now that her son no longer has autism, and that neurologists tell her he never had autism.

If this is the case, then we autism moms/dads and the entire autism community have to ask: Why she is still putting herself in the public eye as "THE" autism mom who represents each and every single one of us? It is one thing to be an actress or other celebrity and use your fame to bring attention to a cause (child abuse, drugs, medical conditions like cancer, etc.) and/or raise money for reputable charities. It is entirely different to do interviews, public appearances, be in magazines, and write books about autism, when or if your child doesn't actually have autism. This is a matter of ethics as well, since profits are being earned.

Most concerning is that her message is one of "recovery from autism," proclaiming that she "healed" her son. Why should parents pay attention at all, and even gain hope from, her son's supposed recovery in light of her now saying a. he no longer is diagnosed as having autism and b. doctors now say he never had autism? If you maintain that a certain treatment or diet "recovered" your child, there had better be zero doubt that this child has that which you claim to have recovered him from.

How can Jenny McCarthy claim to be an "autism mom" or to have "recovered" her autistic child, if there's any possibility her son never even had autism? Why should any of us, and anyone in the public, listen to her? I think these are legitimate questions, and ones we all have the right to ask.

Is Jenny Really An Autism Mom? (Part 3)

2008-06-08T15:00:00.000-07:00

On Autism and Diagnosis:

A final point on whether or not Jenny's son truly did have autism is on how his diagnosis came to be. Apparently, he was diagnosed by the "best doctor" in town or some such. Even the best doctors can make misdiagnoses, and even mistakes. Part of this depends on the information he is receiving, either from the parents or from other physicians. The other part is the doctor's own experiences through his education, training, and with other patients. Evan may very well have appeared autistic in this physician's office. He was lining objects up and flapping. With such an observation, combined with a history of speech delay and seizures, it's not hard to see how the diagnosis of autism could be reached.

However, I feel it's important to note that this was a second opinion. Ms. McCarthy wasn't happy with the epilepsy diagnosis she had received from a previous doctor. It's possible that autism clicked with her (she herself says "this man is right," see below), an autism diagnosis made more sense to her perhaps. It was a diagnosis that tied up those loose ends she was concerned about (the stimming, the language loss, etc.). I know we felt a certain sigh of relief when given particular diagnoses for our daughter. It was a "oh, now I get it" reaction. There was information to be given, some resolution, and sometimes more resources. It may seem odd to people who don't have children with health or developmental issues, why a parent would feel an ounce of relief from a diagnosis. But, as a parent, we often see a new diagnosis as something that wraps our concerns up in a nice, neat package. It almost makes the issues we are facing easier to consume and easier to understand.

From Jenny's interview on Oprah:

Two days later, a doctor diagnosed Evan with epilepsy. "[The doctor said], 'There's got to be someone with seizures on your side of the family.' I said, 'No, actually I know every branch. I know what's going on. There's nothing. No one [with] epilepsy," she says. "And they discharged us." Jenny says every instinct she had was telling her that her son was not epileptic—so she went for a second opinion. After spending 20 minutes with Evan, a neurologist gave Jenny what she describes as a devastating diagnosis—Evan had autism. "And boy, my mommy instinct said, 'This man is right,'" she says.

I realize there are doctors so familiar with autism, they can apparently look at a child and give a fairly accurate diagnosis. That being said, do you want a "fairly accurate" diagnosis for your child, or a diagnosis based on hours of observation and information gathering? Our daughter had been followed by a neurologist for almost 3 years before we went for the official autism evaluation. She already had many diagnoses (apraxia, sensory processing disorder, developmental delay, static encephalopathy, and so on), and was receiving therapy for her needs. However, it was apparent her social and behavioral issues, combined with everything else, warranted an autism evaluation (to give us an answer, and to assist her in receiving proper school services, etc.).

With a rather hefty folder filled with records from our child's pediatrician, multiple specialists (including neurologist and geneticist), and her therapists, we headed into the psychologist's office. This psychologist was one of two "autism experts" in our area. She is one of those who can look at a child, and fairly accurately say autism or not. Still, she insisted on asking my husband and I questions, have us fill out surveys (together and separate, with her and at home), reviewing our child's extensive records, and interacting and attempting to play with my child. This was clearly a responsible thing to do. She was better able to educate us on autism (and specifically what that meant to our daughter), intervention and school recommendations, medications, and so on.

We went for 3 hour-long appointments, over the course of 3 weeks. And then, at the end of the month, we went back for our last appointment. We were handed a multiple page document, and the doctor reviewed her diagnosis (moderate autism, with a history indicative of moderate to severe autism). I have to say, I'd prefer to commit to 4 hours of testing and discussing to come to a diagnosis than 20 minutes of observing and asking questions.

Since a third opinion was never sought, it seems, we can't know what yet another physician would draw from Evan's case. Would the next doctor feel that his severe seizures had affected his language, and that perhaps he did have other neurological manifestations? We can't say for certain, but again, it could be a possibility.

*Disclaimer: I do not have any personal knowledge of Jenny McCarthy or her son's medical history, other than that made available to the public (via media outlets, et al). These are simply questions I feel worth raising, and ideas worth investigating.

Is Jenny Really An Autism Mom? (Part 2)

2008-06-08T13:00:00.000-07:00

A Look At Auditory Processing, Allergies, and Autism:

Aside from, or in addition to, the possibility of epilepsy being the cause of developmental delays (and hence leading to a wrong diagnosis of autism) in Jenny's son, we can also look at auditory processing symptoms being similar to those of autism. In addition, a child suffering from food intolerances and/or allergies can have behavioral issues (or what looks like behavioral problems, from pain, discomfort, etc.). In recent interviews, Jenny has said her son continues to have some "auditory processing" issues.

More on Central Auditory Processing Disorder:

Early Signs & Symptoms:

* Difficulty following verbal directions.
* Echolalia (repeating back words and phrases without comprehension).
* Re-auditorization (repeating back what was heard, and then showing comprehension).
* A child who says "huh" or "what" and requires more repetitions of verbal input messages.
* Speech sound discrimination difficulties, especially in noise.
* Highly distractible/active.
* Unintelligible speech, but with adequate vocal inflection and gestures.
* Difficulty with memorizing names and places.
* Difficulty repeating words or numbers in sequence.
* May have speech or language "delays."

Nearly all of the CAPD symptoms can be seen in autistic children (specifically those with speech delays or language impairments), but again, there is more to the diagnostic criteria for autism than the symptoms listed for CAPD. Doctors really need to use caution when they throw out an "autism" diagnosis, especially when language and speech disorders can mirror symptoms of ASD's. I've seen this type of "warning" on speech apraxia websites, cautioning that there are some similarities with autism. So, is it possible that Jenny's son's proper diagnosis could be CAPD, with epilepsy?

With regard to allergies or food intolerances causing or worsening behavioral or psychiatric issues, we can look at this study (Untreated Celiac Disease and Development of Mental Disorders in Children and Adolescents):

The two adolescents described in these cases had suffered fromepisodes of major depression and other mental disorders beforereceiving a diagnosis of CD. The subject in case 2 had severepsychiatric symptoms years before adolescence. Soon after commencementof a gluten-free diet, coinciding with a decrease in circulatingIgA antiendomysium and IgA antitransglutaminase antibodies,both youngsters considerably improved without any specific psychiatrictreatment, and both remained in remission for at least 1.5 yearsof follow-up. Although the possible role of unrecognized psychosocialfactors in explaining the remission cannot be excluded, it seemslikely that in these cases major depression and severe behavioralproblems, along with their improvement, were causally relatedto CD and its treatment with a gluten-free diet.

Since unrecognized CD may predispose the sufferer to seriousmental disorders and behavioral problems, it should be takeninto account in differential diagnosis in all age groups. Themechanisms involved in the etiology and pathogenesis of mentaland behavioral disorders related to CD, and even to celiac-typegluten sensitivity, remain unresolved.

Certainly not direct proof of food intolerances (or in this case specifically Celiac Disease) can lead to or cause psychiatric disorders, but enough information to consider the possibility. So, again, if Jenny's son is a child with epilepsy (and associated delays) along with CAPD and/or food intolerances, all of that could add up to what looks like autism. It also would further explain this so-called "recovery" and why such improvement (apparently in speech and behavior) supposedly followed a switch to the GFCF diet (keep in mind, it may have been the epilepsy treatment helping the speech).

JUST MORE HYPOTHETICAL FOOD FOR THOUGHT...

*Disclaimer: I do not have any personal knowledge of Jenny McCarthy or her son's medical history, other than that made available to the public (via media outlets, et al). These are simply questions I feel worth raising, and ideas worth investigating.

Is Jenny Really An Autism Mom? (Part 1)

2008-06-08T00:00:00.000-07:00

A Look At Epilepsy, Speech Delay, and Autism:

THIS IS ALL HYPOTHETICAL FOOD FOR THOUGHT. Jenny proclaims herself as the "Autism Mom" who speaks for all other "autism moms" and the "autism community." But, what if her son never really had autism? It's a fair question to ask, as Jenny herself has said in recent interviews: neurologists who see him now for epilepsy say he never had autism. What if, instead, he had a culmination of other disorders, that appeared similar to autism? Suppose a physician gave the "autism" diagnosis without really absorbing this child's medical history? Then what? Can anyone really consider Jenny an "autism mom" or as someone to "represent" anyone in the autism community? She has made quite a bit of money off of autism and out of promoting "recovery" for autistic children. Perhaps that is why she dismisses the neurologists who now tell her that her son was never autistic?

Okay, let's go back and review some medical history (as we know it, by Jenny).

We know that Jenny's son has epilepsy, he had at least 2 very serious seizures (to which I do absolutely sympathize with Jenny, I have seen my daughter turn blue, foam bubbling out of her mouth--those seizures are horrible to witness and scary as hell). Seizures, especially one that causes a child to go into cardiac arrest can cause neurological damage. Perhaps, that damage resulted in some "autistic-like" symptoms? It is very feasible that the epilepsy led to speech delays. Look at this study (that is very similar to the story of Jenny's son):

A 2-year-old boy presented with an early form of benign partial epilepsy with centro-temporal spikes (BCERS) and a severe speech delay. Family video analysis revealed an early regression of babbling and stagnation since the age of 12 months. Complete recovery occurred with anti-epileptic treatment. The deficit corresponded to a transient speech apraxia attributed to an epileptic disconnection of networks coordinating speech articulation. This observation is, to the best of our knowledge, the first demonstration that delayed emergence of language can be due to an epileptic dysfunction interfering with prelinguistic skills and therefore mimicking a developmental delay.

Bold for emphasis by me, specifically the regression, stagnation, and "recovery" following proper seizure treatment. Interesting when we know that Jenny's son is/was treated for seizures (have not been able to confirm whether he is still on a seizure treatment). Also important to note, not every seizure medication will work for every patient with seizures. It is often trial and error until the correct medication and dose is found. Some patients have to try several drugs before properly controlling, and therefore treating, their epilepsy.

Jenny's son had adverse reactions to at least one seizure medication, so who knows how long it took for the anti-epileptic treatment to begin working (and when his "recovery" began). It's also unclear if her son still takes seizure medication. On CNN, she did say that "seizures, we still worry about" Now any parent with a child who has seizures, especially those as severe as Evan's, understands that their child requires epilepsy medicine (typically for at least 1-4 years following the last seizure, depending on type of seizure(s) and patient's history). So, certainly, her son is still on medication--if she, and the neurologists, still worry about seizures (again, especially with a history of such severe episodes).

I've seen many statements about Evan being misdiagnosed with epilepsy. As if, the autism itself explained the seizures, and erased an epilepsy diagnosis. It is true that a percentage (around 30%) of autistic people have seizures, but seizures are not part of the criteria for autism. My daughter has a seizure disorder and autism, adding "autism" to her medical records did not make her seizures an unnecessary diagnosis. I wonder why it seems Jenny is quick to say that the epilepsy was a mis-diagnosis, but the autism was an accurate one?

Moving on, epilepsy occurring at the same time as speech delay in young children is not that rare. And, it's well accepted that young children with speech delays can present similarly to children with autism. There may be some red flags in those children. Physicians need to be very skilled in diagnosing autism, and also in pediatric epilepsy and speech delays, in order to help differentiate between the them (and understand what a combination of any of those might present as). There is a definite link between some types of epilepsy and developmental delays:

Certain types of epilepsy can be linked with learning, behavioural and speech and language difficulties. This is increasingly recognised and the risks are greater if epilepsy occurs before 2 years of age. Parkinson found that from a small study of children referred for assessment of their epilepsy, 40% had undiagnosed language impairment of varying degrees of severity.

Epilepsy can cause temporary loss of function in one or more parts of the brain. If these parts are involved with understanding, organisation and communication processing difficulties in using language can result. These difficulties can be severe, causing general delay in language development or a disordered pattern of language abilities.

The following epilepsy syndromes have associated language difficulties. They include:

• Landau Kleffner Syndrome
• ESES or Tassinari's Syndrome - now called CSWS (Continuous Spike Waves of Slow Sleep)
• Lennox-Gastaut Syndrome
• Temporal Lobe Epilepsy

Sometimes the disability can be extremely subtle - such as high level language impairment disorder. They may have pragmatic difficulties and, therefore, will not have a clear understanding of language use. They can appear socially inept and can misread others' intentions. In these cases the child may exhibit bizarre or socially unacceptable behaviours or the child's language may appear to be 'odd' in an inconsistent way. They may have poor turn taking skills, excessive or restricted topic maintenance, and poor skills in greeting, questioning, seeking the attention of others, describing or commenting.

Some children may have episodes of slurred or disfluent speech. These episodes can occur suddenly and be unconnected with stress or other obvious 'trigger' factors. They can be caused by changes in medication and/or as a result of epileptogenic activity i.e. electrical activity in the brain which does not necessarily manifest itself as an obvious epileptic attack.

It appears there's more than just a little evidence out there to suggest a child with epilepsy can also have developmental delays (specifically in areas of speech). It's clear that children with developmental delays can sometimes have "autistic-like" symptoms, and can also have sensory integration issues (which can lead to stimming and restrictive or repetitive movements, play, etc.). I would dare to say that there are more than a few children out there who were at one point diagnosed with autism, when in fact, they had epilepsy along with developmental delays.

Lastly, Dr. Fernando Miranda pushes for more EEG's and MRI's to be a part of the autism diagnosis process. He has apparently found children at one time diagnosed with autism to have various epilepsy disorders (and more than likely, not autism). I for one am thankful that my daughter has had an MRI and several EEG's, the information gained can sometimes be invaluable--both to rule out or rule in various conditions.

*Disclaimer: I do not have any personal knowledge of Jenny McCarthy or her son's medical history, other than that made available to the public (via media outlets, et al). These are simply questions I feel worth raising, and ideas worth investigating.

Whooping Cough, Again...

2008-06-06T20:33:00.000-07:00

Whooping cough has again made the news in recent weeks. The subject has hit closer to home for me, as there have been cases in an elementary school not far from where I live. I have contacted that county's Department of Health--as thus far the media nor the county's website have spoken of these. I do have confirmation (letters from the school officials) however that there are indeed cases. Will update as I receive more information.

So often, people who are anti-vaccine tout that measles and whooping cough really aren't that bad. They tend to cite a child they knew who got one of the diseases and is fine. As I've mentioned before, whooping cough nor measles are anything to take lightly. And, certainly for the parents who have lost a child due to either of these diseases, these diseases are an absolute nightmare.

Last month, the East Bay Waldorf School in El Sobrante, California closed down due to a whooping cough outbreak. As the writer, Matt Keller, notes in his article, this entire event, and the whooping cough is "easy to avoid with a simple vaccine." An unknown writer at the San Francisco Chronicle ends his May 28 (2008, on page B-8 of the newspaper) editorial with this,

The Waldorf school closure offers some perspective: There is a risk in any medical decision - including the decision not to act. In this case, the choice of each parent became the shared infection of an entirely preventable disease.

There's also this report out today, that reminds us of the importance of booster shots. And, at the very least, of ensuring those who work with the youngest in our population are immunized against these diseases (and, also trained to realize symptoms and to not continue work when symptoms may be related to whooping cough or other serious, fatal diseases):

NEW YORK (Reuters Health) - Public health officials investigating a 2004 outbreak of whooping cough, or pertussis, among newborns in Texas identified the source as a health-care worker where the babies were born.

Staff members at a children's hospital in Texas noticed that six infants admitted with whooping cough had been born during the first half of June at the same general hospital.

A review of records uncovered a total of 11 such infants, on average about a month old, whose symptoms included cough, congestion, vomiting and arrested breathing. Nine infants had to be admitted to the hospital, including five treated in the intensive care unit.

According to their report in the Morbidity and Mortality Weekly Report, published by the Centers for Disease Control and Prevention, J. L. Hood and colleagues identified a 24-year-old health-care worker who had symptoms of cough, which brought on vomiting, and difficulty breathing while working in the newborn nursery from early June until mid July.

During that time she directly cared for 113 infants, including the 11 who came down with whooping cough.

All the babies recovered after treatment.

The health-care worker in this case had been fully immunized against pertussis during childhood. However, the CDC points out in an editorial note that the Advisory Committee on Immunization Practices recommends that health-care workers with direct patient contact and adults who have close contact with infants should be given the Tdap (tetanus toxoid, reduced diphtheria toxoid and acellular pertussis) vaccine.

SOURCE: Morbidity and Mortality Weekly Report, June 6, 2008.

I wrote yesterday about "Do Vaccines Cause That?" One of the sections that really stood out was regarding pertussis (whooping cough) and outbreaks that occurred following concerns over the vaccines. It is startling. And one can only wonder, when will we learn from history?

Because of the concerns about whole-cell pertussis vaccine, immunization rates had dropped in 1978 from 80% to 30% in the United Kingdom—and whooping cough epidemics soon followed. Indeed, between 1977 and 1979 the United Kingdom experienced 102,500 cases of whooping cough with 36 deaths...

Bold for emphasis by me, of course. Does that register with anyone who doesn't give their child the pertussis vaccine? 102,500 cases in 2 years, 36 deaths. Are you really willing to gamble your child's life?

In Japan a national debate resulted in the Ministry of Health and Welfare changing the recommended age for immunization because of concerns about the whole-cell pertussis vaccine’s safety and claims that it was no longer necessary to immunize because pertussis was not present in the community any more. Vaccine coverage for infants fell from about 85% in 1974 to 14% in 1976.4 Then, in 1979, a whooping cough epidemic resulted in 13,105 cases and 41 deaths. In the early 1980s Japan re-introduced pertussis-containing vaccines—using the newer acellular pertussis vaccines that cause less fever and local reactions—and the number of cases of whooping cough went down.8

Sweden had a similar experience. After discontinuing pertussis vaccine, rates of whooping cough returned to the levels seen in the prevaccine era. Of 2,282 who were hospitalized for whooping cough in 1981–1983, 4% had brain injury from the illness.4

Again, figures put in bold by me. 13,105 cases in one year, with 41 deaths in Japan. In Sweden, you have 2,282 children hospitalized, 4% of those have brain injury. Again, I ask--are you willing to gamble your child's life? To hold onto a belief that cannot be supported by any scientific data (that vaccines cause autism), and make serious (possibly life or death) decisions regarding your child's health is at best utter ignorance and selfishness, at worst, child endangerment.

Still feel whooping cough is no big deal? Watch this. And don't turn it off after 2 seconds, thinking your unvaccinated child is somehow "immune" from this. Watch the entire video. This is what whooping cough is. This is what a non-immunized child could sound and look like if they catch this horrible disease.

EDITED: I altered the time on this, as I wanted it to be the lead story for the day (not Jenny on TV)

Jenny McCarthy: On The Record

2008-06-06T19:31:00.000-07:00

Well, I have to say I'm rather disappointed by this interview with Jenny McCarthy. Greta Van Susteren is typically (as far as I have seen) a good interviewer, challenging her guests and asking tough questions. This was nothing more than a fluff piece. It was a "autism is horrific" and then Jenny spatting her lies. Too bad.

Some of the falsehoods:

*That this rally was "for people to see the true faces of autism"
*11 shots contain mercury, again suggesting your child is receiving 11 shots with mercury
*Conspiracy theory: government is lying, the same old story from these folks
*"too many too soon" an idea that remains completely unproven
*Jenny says she uses a "great analogy" for autism, it's like "getting hit by a bus"
*Hannah Poling...government has conceded that "autism was triggered by vaccines" UM NO!
*8,000 people from across the country

Some rather questionable statements about autism from Greta:
"terrible for the child and the family if you're on the bottom range"
"how horrible"
"completely disruptive to the family"

To which Jenny asks us to imagine "having a perfect child" and "then all of sudden that child is gone before your eyes." She also says many mothers liken autism to having a spaceship come and steal your child. I absolutely detest those statements. How could a parent say their child lost their soul? Further lack of respect toward autistics.

Jenny continues to say, "us moms aren't treating autism", they are treating a "vaccine injury." First, let me say, I'm glad to hear it's the moms who are "treating" their child's "condition." Okay, fine. Your children have a "vaccine injury," mine and the rest of us in the "autism community" you claim to represent, our kids have autism. So, go rally for your so-called "vaccine injuries" and leave our children alone! You are only harming the future for our kids, for those who won't "recover" and doing nothing to help autistic children, teens, or adults.

Jenny confirms what I questioned in my recent post: neurologists are now saying that her son never had autism. He is not autistic. She argues this by saying he was diagnosed by the state of California and doctors (at UCLA, I believe). Well guess what Ms. McCarthy? Doctors make mistakes. You'd think the one who claims the government and doctors are "poisoning" children would be the first to think that doctors might have messed up. Really though, many doctors will tell you that an autism diagnosis at a young age (I believe Evan was around 2 1/2, more on this in an upcoming entry), may not remain accurate as the child gets older. For that precise reason, our neurologist advised us to wait for the evaluation until after our daughter was 3. She already has several neurological diagnoses (and recognized developmental delays), and he always assured us that regardless of diagnosis, we were doing all the right things. Again, I will write more on this shortly.

The interview (rather brief) ends and they give a statement by the AAP.

From earlier:
Okay, due to breaking news, the Jenny McCarthy interview by Greta Van Susteren is being a bit delayed. However, on the GretaWire blog, you can add comments now and throughout the show. Thus far, I've seen many "I love Jenny & finally this message is getting out..." and so on. Make our side heard!

Here's what I've written so far, I imagine I'll be adding more as the interview & so on airs:

Honestly, why should a woman who admits she's never even met an autistic adult be the chosen representative for autism? She does not represent me (and yes, I AM an autism mom). My child was born with autism, she never had any reaction to vaccines. She has not improved with any special diets, and due to medical concerns, pursuing the GFCF or DAN! Protocol is not feasible (nor could I see shoving 20 pills down her throat along with injections, none of which is proven to be of benefit).

So what is Jenny doing for my child? She won't "recover," she won't be the child I can parade in front of others getting credit for "fixing" my child. My daughter is precious, and yes we have ups and downs, and life can be extremely rough--but first and foremost she is my child (not kidnapped or soul-less), and I love her. The public perceives autistics (due to these cure & recovery message) as unteachable, unworthy, and even unlovable. They are not respected--wherever they fall on the spectrum. I fear for what the future brings for her. Will society change by then?

Currently, there are extremely limited adult services (including independent or semi-independent living situations, vocational or career programs, etc.) and help for teens is difficult to attain as well. The public views my child and others like her as damaged, not worthy of civil or human rights, something to be gotten rid of. What is Jenny and Jim doing to help change that???? Have they done anything incredible to raise public awareness on this dire need? I fear for when my daughter reaches adulthood--what services will be there for her? Yes, she will make progress, as she continues to do so. But, we still don't know exactly how much assistance she will need. What happens when we can no longer take care of her? That is what keeps me up at night.

I refuse to waste my time, and my daughter's, by believing in some PR guy's claims that the government is "damaging" our children via vaccines. Do your research, read REAL scientific studies (done across the globe), and realize there is ZERO proof of any link between vaccines and autism. Even in the case of Hannah Poling. If you do not understand the science of that particular case, do not even bother discussing it. The government did not concede that vaccines gave her autism. Also, learn the difference between causation and correlation.

I advise you too, read the Omnibus proceedings of the last few weeks--then let's see how much faith you have in the DAN! docs' "heavy metal screenings" and "treatments." It's amazing what these docs must admit while under oath.

FYI: Jenny On Fox Tomorrow Night

2008-06-05T19:26:00.000-07:00

Jenny McCarthy will be on Fox News' On The Record with Greta Van Susteren tomorrow night (10pm E/9pm C).

The Autism Whisperer Cometh

2008-06-05T17:57:00.000-07:00

From Jim Carrey's speech during the "Green Our Vaccines" really.

Autism is everywhere. It's on every street, in every town. It's a warning from the universe that there is a serious imbalance in our environment and that immediate changes must be made.

Woah--almost sounds like some of that new-age Indigo type of talk. I wonder if he is a crystal? He continues on,

To quote Burton Goldberg, an expert on the new age of medicine, 'autism is the canary in the coal mine.'

Bev at Asperger Square 8 has a different take on the canary metaphor (which apparently is also popular with a one Dr. Bryan Jepson). Dr. Burton Goldberg, I feel it should be noted (since we are referencing autistic children, vaccines, and other medical-related issues) received his Doctor of Humanities Hon. from a Capital University of Integrated Medicine (it may also be of interest that this school closed down in June 2006). He is a publisher, and the self-proclaimed "Voice of Alternative Medicine." That's right--he is not a medical physician.

Mr. Carrey continued on with the importance of trusting a mother's instinct, not trusting the government, and bashing the drug companies. He then adds, in reference to the pharmaceutical companies:

...they are far too busy fighting the scourge of restless leg syndrome.

Roars of laughter, hollering, and applause. He continues,

Also known as lazy ass disease.

This also is met with screams and yelps and more laughter. I loved it the one time when I was at a fund-raiser for cancer research, the speaker cracked a joke about people with diabetes. It was hysterical! Oh, wait, that never happened. That would never happen--would it? No, I think only people with the mindset that autistic individuals (along with any person with a neurological or mental difference, disability, or disorder) are not afforded the same respect or rights as others would say such a thing.

There is making light of one's differences, and then there is outright bashing. This was not funny (although it appears the audience was rather entertained), and certainly not amusing to the people who really do suffer from Restless Leg Syndrome. My mother has it. She is not on one of the new medications for it, but on some nights she does take Ambien. It is something that has plagued her for as long as I can remember. She simply has had an official name for it in recent years; but she stayed awake many a night well before a name existed for this condition. I simply can't imagine making fun of someone else in such a manner, at such an event. But, then again, we are speaking of the same group of people who time and time again present themselves as less than professional (see below for more on that!).

Jim Carrey does actually say that "these children have a purpose" at the end of the speech. However, the tape shifts to Jenny's speech. So, I'm unsure what he perceives as the purpose of "these" children. Is it to be a part of society, respected and welcomed? Or is it to make some great change via the "greening" of vaccines?

Jenny goes on to speak, and describes herself as a mom of a child "who had autism." I wonder if she's changed her mantra--which used to be that he'd never be "cured" of autism. In every article, they define her as the mother of an autistic child. I believe my favorite Jennyism from that day was this:

"...and the ingredients like the freakin' mercury..."

What class. Once again, please don't group me in with the "autism community" and the "autism moms" you, Jenny, claim to represent.

Can someone who has watched the YouTube video posted here, please explain what the headless child sculptures are at the end? Please, please, tell me that is in no way related to this rally or to autistic people.

Neurodiversity on Good Morning America?

2008-06-05T17:35:00.000-07:00

I ran across this today and wanted to share. I'm awaiting confirmation via email as to whether this is something ABC really is doing.

From "Good Morning America":

Good Morning America is doing a report on autism activism and neurodiversity. As part of the story, we'd like to include a photo montage of those who are a part of the community. If you or anyone you know is a part of this community and would be willing to be shown in the photo montage that would appear on Good Morning America, please send us your photos. The photos will provide a visual example of the diverse group of people behind autism activism celebrating the voices of autistic people. Please send the photos to Michelle.d.major@abc.com Thank you!

Edited to add:
Thank you to Angela and Camille for the confirmation. Bravo to ABC, let's see how it turns out when the cameras actually roll. Updates to follow...

Do Vaccines Cause That?

2008-06-05T13:08:00.001-07:00

That's the title of a book I recently read and strongly recommend for those who have questions about vaccines. In "Do Vaccines Cause That?" the authors Martin G. Myers, MD and Diego Pineda, MS explain every facet of the vaccine debate. To be honest, I was skeptical about this book prior to reading it. Part of it was that I dreaded reading what I thought would be a whole bunch of science jargon, the other part was that I figured it was all old hat. I obviously have an interest in vaccines (specifically with regard to autism and the ongoing debate), and so the title greatly interested me. After reading this book, I'm happy to report my prior skepticism was unnecessary.

The authors have written this book in such a way that every reader can fully understand the material. They use realistic examples, cite many studies, and speak to their reader in a clear, concise manner. As a busy mother, reading this book late at night or in between errands during the day, this approach was greatly appreciated. I've always felt we made the right decisions with regard to our children's vaccines. And after reading "Do Vaccines Cause That?" I was fully affirmed in my beliefs. This book is very timely, even including the case of Hannah Poling.

For the most part, how the media reports (and often sensationalizes) the vaccine-autism issue is far from objective journalism. Too frequently, parents are basing their decisions off of emotional portrayals of a family's story, and from journalists, lawyers, or physicians profiting from the anti-vaccine movement. This book breaks down both sides, something that's been needed for a long time. To dispute cold, hard facts (science) simply because of how a journalist or celebrity portrays this debate is inexcusable.

Making the decision to not vaccinate your child should come from real scientific evidence, not from the innuendo and hype often found in magazine articles, message boards, or other agenda-driven sources (including journalists, politicians, and celebrities). Parents need to fully and completely understand the realities of vaccine-preventable diseases, the very real risks that exist today, and the dire consequences of not vaccinating your child. Recognize and comprehend the risks of such diseases, the risks of vaccines, and realize there is zero scientific evidence to link autism to vaccines (on the contrary, countless studies in various countries continue to outright disprove such a connection). Only then can a parent make an educated decision on whether or not to vaccinate their child.

Maybe It IS Easy To Be Green?

2008-06-05T09:38:00.000-07:00

As Kristina at Autism Vox points out, the message of "change the schedule!" is rather diluted, and fairly innocuous. We never saw a difference post-vaccines with our child. She was diagnosed with developmental delays by 6 months of age, likewise she had issues at birth. So, we would opt to have our child get fewer pokes. Also, as Dr. Chew points out, this also amounts to less doctor visits and fewer co-pays as well.

That being said, anyone who opts to space them out (vaccines), I don't have much issue over that. I would feel rather different, however, if this "spacing out" of immunizations included complete avoidance of any specific vaccines currently available for our children. This is often the rallying cry, to not "expose" your child to the MMR (although let's all remember that the MMR never contained thimerosal, and I'm unsure what they believe is truly achieved by splitting it up). I'm fairly certain Ms. McCarthy has said publicly if she had to do it again, she would not vaccinate her child (or at the least, she'd avoid the "autism shot" as she refers to it; she'd prefer measles to autism remember).

Perhaps further down the road, we'll get a more accurate definition of "Green Vaccines" by Jenny, Generation Rescue, TACA, or others. At this stage, it sure sounds like amongst the antivaxxers, this term means many different things to many different people.

The Whole Green Mess...

2008-06-04T23:41:00.000-07:00

I've been busy lately. You can tell, as I've been absent from my blog. I had even forgotten what today was. We were headed to Speech Therapy when the ABC radio reporter issued a brief statement about the rally. I called my husband to see if he had seen any coverage on the T.V. This evening, I searched and searched, but could not find a single morsel. The majority of the coverage was on the presidential race.

This particular clip of the whole "rally" seemed utterly surreal (it's from ET Online, go figure). That's all I'll say, you judge for yourself.

What I heard Jenny say was how 10 vaccines still have mercury in them (in the guise of thimerosal, Big Bad Pharma at it again). She said how it's right there on the FDA website. I had to immediately check it out (TEN vaccines??!!??). Well, this is, I presume, the page she refers to. I'm baffled. It's late, so I could be wrong...but I don't get how it adds up to 10. Well, I take that back. Yes, there are several vaccines that contain trace amounts of thimerosal (which, would then contain trace amounts of mercury, so in the vaccine, you are getting trace amounts of trace amounts of a preservative). However, it's declared as if your child is getting TEN vaccines with mercury. No, that's not the case. If you look at Table I, you will see that of the "vaccines routinely recommended for children 6 years of age and younger," only one particular brand of DTaP (Tripedia) contains trace amounts (≤0.3 µg Hg/0.5mL dose) and that the other vaccine is for influenza (which, has thimerosal-free versions, FluZone thimerosal free and FluMist). Both vaccines are available in thimerosal-free formulations. There is a second table, with a list of additional vaccines, such as Japanese Encephalitis (containing 0.007%), that our children do not typically receive. On that table, the highest percentage of thimerosal content was 0.01%. Startling. I thank Jenny for sharing such a valuable resource with all of us.

There was also this picture, courtesy of the Chicago Tribune. Now, I'm all for showing affection for your sweetheart. And, I love my husband very much. But I can state with 99.9% certainty that if we were ever at a rally (say for funding for programs aimed toward autistic teens and adults), we would not be making out. Sure, we may hug, but a passionate kiss? Leave it at the hotel room people. This seem to be a theme for Jenny, being less than professional (ex. shouting bulls**t on Larry King Live) while on this "crusade." You are celebrities, people are taking your picture, act accordingly--if you want your message to get out. I wouldn't want an image like this to be one of the first few listings on Google (c'mon, Jenny, you have your Google degree, don't you?) for a rally that was of the utmost importance to me. Just my two cents, a little advice for Jim and Jenny.

It also appears that the turmoil is bubbling over with regard to Jenny's public messages on vaccines (that she is NOT anti-vaccine at all, just for safer, more spaced out, yada, yada, yada). The anti-vaxers are angry with her, and upset that the rally today was apparently not open to those preaching a total anti-vaccine message.

To be honest, the ABC link I mentioned previously is the only substantial mention or article I have found. For the most part, the media is clinging onto the celebrity factor (and even more, the celeb-couple factor). This may have been a big, fun story for ET and Extra!, but as for making a real impact and being treated as a serious issue, it seems to have missed its mark.

Apparently 8,000 people showed up today. I'm not sure if that is more or less than what anyone anticipated. I for one was a bit appalled at the message to parents about how to do whatever they can to get to D.C. Borrow from family, do fund raisers, etc. Here's the thing, the majority of us "autism families," don't have bundles of extra cash stowed away to fly to a rally (or for anything else!). I could never, would never, ask anyone for money so that I could attend a march (of any sort). My family would surely think I had gone over the edge entirely. Please give me money so I can fly to D.C. for a rally. Yes, I know I have medical bills. Yes, I know my child has therapy. Yes, I know we may need to hire an advocate to get better school services. But, this is really important! WHAT??? Outrageous! Again, I see a disconnect from celebrities and the rest of us. Flying or driving anywhere these days is awfully expensive, I can think of a hundred ways that money may be better spent for a family like ours (and, like many "autism families," I suspect).

Edited to add: From reports, it appears that 8,000 figure may have been rather inflated. It seems the numbers were more like 500-1,000 people in attendance (and, apparently, half of those were children).

Is it autism--or isn't it??

2008-06-04T23:11:00.000-07:00

This one from ABC News especially caught my eye. The article itself isn't anything earth-shattering, but I was impressed by the link to the National Network for Immunization Information on the bottom of the article (above the TACA link, and in bold no less). Kudos to ABC for being balanced on this. What really struck me, was the video of Jim and Jenny's interview from Good Morning America. This particular part, when Diane Sawyer is narrating how Jenny's son "recovered" from autism:

"but doctors now say he was likely never autistic to begin with. Undaunted she remains an advocate fighting for Evan and other children..."

I wonder--is it doctors that ABC consulted with for the story, or physicians who are familiar (as in face to face) with Jenny's son? I think we are owed clarification on this. This idea, of children being wrongly diagnosed with autism is something I've visited before in the comments at Autism Vox here (and my other statement). I think there are children who have dietary sensitivities and allergies, who have some autistic-like (or ADHD-like) symptoms. Perhaps they get prematurely diagnosed, when really the issue is something else. Now, I will say this, in an environment of acceptance and love, a premature diagnosis doesn't necessarily do any harm to the child. I don't think there is any child who would not benefit from, say, speech or occupational therapy, etc. Harm can occur, however, when parents (and Jenny is not alone on this one, far from it) claim that this diet or this treatment "recovered" or "cured" their child.

As in the case of Jenny's son, he apparently had significant changes when the GFCF diet was started. Perhaps his issue was sensitivities to foods and gastrointestinal problems. My daughter has had her fair share of G.I. issues. We have managed them rather well, our physicians are incredible. Had we not been on the ball with her tummy troubles, or had our doctors made wrong diagnoses, I imagine our child would be in tremendous pain much of the time. Luckily, most of her issues were addressed before she was two. For a child who cannot verbalize at all, or only limited, how does that pain get expressed? Through screaming, self-injury, etc. If a child has a speech delay plus gastrointestinal issues, this could very well look like autism.

But let's make one thing clear: having autism and having something "else," are two very separate things. There are children who may exhibit autistic-like symptoms or signs, as well as signs of ADHD, etc. when really there is a food intolerance or other sensitivity. For those children, diet alterations will make all the difference. For a child with autism, you cannot assume that dietary changes will add up to speech or any other drastic changes, let alone "recovery." I've yet to meet one parent in real life who has said "we started the GFCF diet, and weeks later my child was doing X." I have heard some parents say they think they've seen some small positive changes, and in one case, a mother felt her child's sensory issues were "a little better."

I'm not bashing the GFCF diet. I've known several people with Celiac Disease who are thriving due to it. I think it has its place. I also feel that if your child and your family can stick to such a diet, and if some positive comes from it, then go for it. Strangely enough, a lot of our foods are gluten-free (we shop at Whole Foods and such, these cookies are awesome!). However, it so happens that my youngest will not consume any of those foods (she eats about 5 different foods regularly, that's it). A few of the parents from my daughter's school also say they too are unable to follow the diet. Their child, like mine, may eat only one fast-food brand of chicken nugget, or a specific brand of frozen pizza, etc. Some of us have worked for years to get our child to eat anything resembling a meal. For us, if you simply present a new food on our daughter's plate, it will send her into a rage. She barely eats as it is. So, if anyone can realistically offer how to switch her to GFCF, be my guest. But, for some, if not many, of us, this diet is not feasible. And so I beg of you, do not point your finger saying we are failing our children by not following the diet--or any other "treatment." As the saying goes, walk a mile in my shoes...

Let me also say this--I'm happy that Jenny's son had so much improvement once he began the GFCF diet. That is fabulous. I hope he continues to do as well as he seems to be doing. I don't think there is a single parent out there who wouldn't love to give their child certain foods and within two weeks have that child be speaking. The world is a nicer place when you abide by what they have declared as "normal" and "typical." Don't we all want our kids to have an easier time in society? I have never and will never seek a "cure" for my child. That's not to say we haven't worked tirelessly on providing her with all she needs, on keeping on top of the school to ensure they are helping her, and seeking out the best (for our daughter) doctors and therapists. We don't want our child to have meltdowns, to gag at the mere sight of a certain food, to injure herself (or others), etc. And, yes, if it was as simple as altering our pantry, and my child would not have the struggles she currently has, I'd jump at that.

But my daughter's "autistic-like" symptoms are actually autism, and that's a major difference here. She isn't acting a certain way because of a belly ache, or allergies. The reality is that a lot of our kids are square pegs (and we embrace every side--even those sharp edges) and society constantly tries forcing them into round holes. For many of us, the answer isn't in diets or supplements, it is in parenting and working with our child, loving them unconditionally, and perhaps along the way, even rounding those corners just a tad. But more importantly, it is our duty to accept who they are, and work to make this world a friendlier, maybe even more square, place for them.

I am saddened that Jenny's preachings on autism and recovery make my battle (the one of acceptance for those on the spectrum and for the creation of programs for autistic individuals, especially adults) much harder. If you are going to represent the "autism community," let's be 100% certain your child is indeed autistic first though. And, I would also caution, as I have before, that when we describe an autistic child as "recovered," there comes great responsibility. Responsibility for those who never "recover" and the issues that stem from that (at best you are left with parents feeling like they messed up, kids feeling that they're never quite good enough). Responsibility for your child who you claim to be "recovered" when in a few years may no longer be able to wear that label. Many parents will tell you that the teen years can be very difficult for autistic kids. So, the child who seemed to be "doing so much better" can suddenly be a child requiring much care and services as a teenager. There's just a lot of burden that does, and should, come with announcing your child is "recovered," and especially at such a young age.

Society's Sad State

2008-06-03T19:34:00.000-07:00

I was reading Odd One Out in the days immediately following Alex Barton's reprehensible ousting from his first grade class (a la Survivor). I was so deeply affected by the post on this inexcusable act. Primarily on the comments that Lastcrazyhorn had compiled and was writing on. I was outraged and then very saddened by the bias and ignorance I was seeing. Suggestions like this child just needed some discipline, or that his behaviors were due to poor parenting, or commending this teacher for bringing order back into the classroom, honestly make me wonder what country we live in and exactly what year it is.

The case of Alex Barton has done two things. For one, it has brought Autism, inclusion and mainstreaming, and special education into the public eye (at least temporarily). All the major news stations covered the story in some form or fashion. Furthermore, the story has brought bloggers together all across the world. I've seen bloggers who have no connection to autism writing on it; others whom I have many disagreements with are just as passionate about this child's rights. It's been amazing to see us, once again, all come together to make change. We do have to remember that this is far from over--both for Alex and for the rest of our children. So, we need to keep writing those in the government and making our voices heard.

The other thing this case in particular has done is clearly brought forward how a great many in society truly feel about autistic individuals: put them away. The vast majority of us parents speak about how relieved we are to be living in a day where we do raise our children. Gone are the days that we are forced to (or strongly advised by our physicians and others we trusted) institutionalize our children (well, in most cases: please read about Nate Tseglin). However, it seems that a number of people would prefer we do just that. They don't want our kids interfering with their child's education. They speak of our kids as if they have some rancid, contagious disease. One that if our kids area allowed in their child's classroom, will seep through and infect the whole school. They claim it's unfair for their child to be in a room with our child. Unfair? Why? Because our child may help your child learn about tolerance and acceptance? Because they may learn to not judge a book by its cover, once they get to know our child? I'm sorry those lessons are so appalling to these parents.

I hate to break it to you who think my child will so horribly disrupt your child's education that she should be dumped somewhere else: my kid isn't the only one having issues in class. Have any of you spent time in a public school classroom? In Vanillaville, USA, you are going to see a SPECTRUM of children in any given room. You will have kids of varying intelligence and skill sets, children who have learning disabilities, health issues, and those that are gifted. You are going to have kids who are poor, kids who are rich, and all those in between. There are going to be adopted kids, foster kids, kids whose parents are divorced, and so on. You may want to point the finger at my child and say she is the one affecting your child's education--but really, can you prove that none of those other children do?

My oldest child is in fact labeled "gifted and talented" based on an evaluation (IQ score, plus various tests of knowledge and ability). She is in a classroom with children of varying abilities, and all those differences I mention above. Do I sit and whine that any of those kids is disrupting my kid's education? No. She is in public school, that's all part of it. She does have a few children in her classroom that receive special ed services. I've witnessed a meltdown by one of her peers, another child who is literally unable to sit still, and another who has significant trouble with reading. Shall I begin a protest to take these students out of my child's class? I would never. School should be a place where children learn to be good citizens. That is still a part of today's lesson plans, right? I want my daughter to acknowledge and accept children who are different from her. I don't want my daughter to judge a peer based on their skin color, family situation, physical appearance, or so-called "behaviors" ala Autism.

If you feel that my autistic child, or any other autistic, disabled, or different kid is so horribly affecting your child's education, guess what? You have a choice. Go to private school. I'm sure there are some better-suited schools out there--you know, ones where only blue-eyed, blonde-haired, strong, "neurotypical" children are accepted (I wonder if there are any schools who support a program like T4, that may be more your liking). People will say I'm crossing a line, that these views of society in 2008 are nothing like Hitler. I beg to differ. I think many would agree that if and when a prenatal genetic screening for autism is available, abortion will become common place, as in the case of Down Syndrome. We have professors speaking--and smiling--at universities, about eugenics.

This is the state of our society today. In this country, it is touted that we are the land of the free, and that each citizen has the same civil and human rights. This is not the case when it comes to disabled persons. What have we learned from history? Why are so many unwilling to give our children and autistic adults a shot? Why is there such intolerance and ignorance? It is my hope that through Alex Barton's horrible experience (and, sadly, many others) that a dialogue can begin. I want real change, for my child, for the many other individuals I've come to know on this journey. I can only hope that society is ready to listen.

Response to Comments: Alex Barton & Inclusion

2008-06-03T19:00:00.000-07:00

I received this comment by Eric (you can watch the interview here):

"This child needs special attention for his disability- he should not be in a class room with children of a normal performing level. After reviewing the interview from "The Early Show" http://www.breitbart.tv/html/103693.html the child looks extremely disruptive and probably is a distraction in class. Placing those with disruptive disabilities in normal classrooms detracts from everyone else's education and occupies too much of the teachers time. The classroom is better off without him."

Yes, he does need special attention. His mother was meeting with school officials, this teacher included, to make such provisions. From what I understand, he had an IEP in place, and most likely a BIP (and if not, the school was indeed failing him well before Wendy Portillo's disgraceful actions). He should be in a class with "children of a normal performing level" (whatever that is in kindergarten!). For one, it is the law. Alex, just like my child, just like your child, has rights. You're not saying that autistic people don't deserve the same rights as other citizens, are you? Please read about Least Restrictive Environment, and perhaps you'll better understand why Alex deserves to be in this class. A side note, when you say "normal performing level," I wonder what that means. Are you talking about behavior, academics, or IQ? Odds are, Alex has a rather high IQ and is very capable of keeping up with (or soaring past even) his peers in academics (when the right supports are in place). What would be your definition of "normal performing level," do you have a specific criteria a child must meet before being allowed in a classroom?

I watched the interview. Can you tell me exactly which behaviors were so deplorable that Alex should not be in his classroom? You state he "looks extremely disruptive." Really? I can't imagine how my eldest (the gifted one, remember) would act in front of a camera. Actually, I bet she'd act out in ways I'd be mortified about! I don't even think I could get my youngest to sit on my lap or be anywhere near the camera crew and those spotlights (to which I greatly applaud Alex!). You can't base how a child acts, in front of bright lights with odd sounds and such. I personally did not see any behaviors indicative of Alex being a nuisance in class. Perhaps it's because I spend 24 hours a day with two very quirky kids, but I saw an inquisitive child. He didn't seem much different than any other child I've seen on T.V. while his parent is being interviewed.

With regard to the behaviors of this child in school, no one denies that Alex wasn't having difficulties. That is part of autism, at least for every autistic child I know. There are steps in place for schools to help a child with this. IEP's and BIP's help, as does open communication with teachers, counselors, and therapists. It sounds like not all was being done to help Alex, that could be done. I sincerely hope that now that he has an official diagnosis, steps will be taken to help him out. He may benefit from having a para or other support services.

How would you define "disruptive disabilities?" Is it just the autistic children? A child with ADHD? Does this include a child in a wheelchair? A child who stutters? The child with emotional issues due to their home life? I have actually seen so-called "neurotypical" children in the classroom be more "disruptive" (although I feel that word is rather harsh) than an autistic child. A child with ADHD may have a hard time focusing or sitting still. Yet, I don't think anyone would suggest placing a child with ADHD into a special education class. A child in a wheelchair may require more time going to and from the classroom, and certain class activities may need to be adjusted to accommodate his/her needs. The child who stutters will take longer to read a sentence aloud. A child with emotional issues may get into fights, may have trouble concentrating, may cry or act out. Would you argue as strongly for those children to be in a separate classroom as you do for Alex (and apparently all autistic children)? In any given classroom, there's plenty of distraction. It's not just Alex or my kid who may require more of the teacher's time on any given day.

The last sentence is the one that really felt like a punch in the gut. The idea that Alex's classroom or any other autistic kid's class is "better off without him" is so disturbing. It is the same barbaric mindset that once institutionalized our children, giving them no hope of any type of life, our kids were seen as having no value. This same senseless thinking leads to these very crimes, and disgusting preaching like this. This is why we fight, this is why we are so passionate, this is why we rally. Until society sees our children as human beings, as individuals with the same rights as anyone else, and accepts them for who they are, we will not be silent.

Another reply I received:

"anon So, lets see here, this little kid in Florida was being a t*rd and the rest of the kids voted him out of the class? whats the big deal? He's probably the same kid who gets picked last or doesnt get picked at all for any team sports. It's amusing to see the mothers cry out in harmonic outrage for their little precious bundles of stupid reject. Your kids are t*rds. Deal with it"

This comment deserves no response, and therefore I won't give it any justification. I do want to have it up here, just so that those people who may be unaware of what we, what our children, what autistic individuals, and what disabled citizens face day in and day out. These hateful, ignorant viewpoints are everywhere. Prejudice is very real in our world.

"I'm Not Special"

2008-05-24T17:07:00.001-07:00

Those are the words that Alex Barton has come to say repeatedly to himself. He screams in the car when his mother drops his sister off at school. He's refusing to eat and unable to sleep in his own room. Alex was recently kicked out of his school, by his classmates--after his teacher took a vote on it. Alex is thought to have Autism (currently being evaluated for Asperger's). He is also just five years old, in kindergarten at Morningside Elementary in Port St. Lucie, Florida.

Remember Kindergarten? That time of our lives when we are supposed to be taught to be good citizens, to learn social skills, to learn how to "get along," and how to obey the school rules. We're also supposed to have fun, play, and make new friends. Kindergarten is supposed to be the foundation upon which our next 12+ years of education will rest upon.

And yet, in Alex's classroom, the lessons being taught by Wendy Portillo appear to be ones of prejudice, intolerance, and outright cruelty. Alex's peers learned from their teacher that if someone is different, and you have a hard time understanding their habits, actions, delays, etc., then you simply dismiss them. Get rid of them. Kick them out. Take a vote, and out the classroom they go.

And, before you do, you might as well tell that person what you think of them. Five year old obscenities like "disgusting" and "annoying." This is brutality, no doubt. Melissa Barton (Alex's mother) reports that Wendy Portillo confirmed that this indeed happened. If that is the case, this teacher is cruel and inhuman, a person who has no business being in the education sector. She is teaching innocent, naive five year olds a lesson of hatred. A lesson that these children will not soon forget. We can only hope that these kindergarteners' parents have enough sense (and compassion) to explain to their children how wrong this is. It's far better to teach their children tolerance, acceptance, and understanding, and it's my wish they realize that.

If these reports have been confirmed, I see no reason why this teacher still has a job. She should have immediately been fired, no questions asked. One can't help but wonder--if this child wasn't autistic, what steps would the district would have taken? Had this been any other child in that classroom, all hell would have broke lose. There would have been protests, and no doubt, due to massive political pressure, this teacher would have received her walking papers STAT.

We've all seen how autism continues to be portrayed on television--as children who are violent, angry, withdrawn, and out of control, who were "kidnapped" or "lost their soul." The parents desperate and depressed, their lives "spiraling out of control." So, when the public hears that this child has autism, and was having "behavioral issues," most say "well, I can understand why you wouldn't want a kid like that in the classroom." They presume to know Alex all because of what they've seen or heard, these biased reports in the media. Society doesn't want to understand (let alone accept) autism or autistics--at any age. They're being constantly fed these ideas about recovery or a cure, not ever about the dignity or acceptance of autistic individuals. The message that those lives are not worthy of our respect or our time is what the public hears.

So again, when an autistic child is kicked out of class, they don't much care how or why it was done. They think nothing of the ramifications, not only on the autistic child, but also of the other children in that classroom. We are living in a culture of un-acceptance. We all must fit into the public's cookie-cutter mold, or we are just not good enough to be an equal member. Our society likes to preach a lot about being diverse, and about supporting those with disabilities. Yet, when it comes down to it, in the real day to day stuff, society would rather look the other way.

When people ask me why I cringe at a celebrity bragging about her "recovered" child or a politician working to "prevent and cure anything along the Autism Spectrum" or a grandmother declaring that "Autism knocked on the wrong door," I don't need to look far for my reasons. The case of Alex Barton clearly shows us that this propaganda reaches far and wide, not only into our homes, but even into our schools and churches. I want the Barton family to know that they have my full support, along with many others. I was grateful to read this, and learn that Alex's mother, Melissa Barton is a very strong woman, who will not let this slide:

“He has many of the symptoms of Aspergers” says his mother. “The teacher knew that he was under evaluation even having a part-time assistant just for Alex, and she decided that the best way to handle him would be through humiliation from his peers. I cannot imagine how he must have felt as his teacher encouraged the other students to bully Alex by telling him he is disgusting and they do not like him among other things. This is abuse and discrimination among other things; I will not soon let this go” says Melissa Barton. “The moment he needed me the most, I was at work. I do not know if he will ever trust teachers again, I do not know if I will ever trust the Port St Lucie School District again. I know it will be a while before I can convince my little boy that learning is fun. I am deeply sorrowed by the pain my child suffered at the hands of his Port St Lucie school teacher.”

Mrs.. Barton went on to say, “This is a sad day for parents of disabled children across the USA. I am now seeking the help of a physiatrist for my son as he refuses to eat, sleep in his own room and other problems that arrived directly after the abuse."

Make your voice heard, tell the Port St. Lucie school district that this type of discrimination and hatred will not be tolerated.

CONTACT INFO:

Morningside Elementary School Principal:
Mrs. Marcia Cully
cullym@stlucie.k12.fl.us
(772) 337-6730

St. Lucie County Schools Superintendent:
Michael J. Lannon
4204 Okeechobee Road
Ft. Pierce, FL 34947-5414
Phone: 772/429-3925
FAX: 772/429-3916
lannonm@stlucie.k12.fl.us

St. Lucie County School Board Chair:
Carol Hilson
772-519-0397
hilsonc@stlucie.k12.fl.us

Vice Chair:
Judith Miller
772-528-4545
millerj@stlucie.k12.fl.us

The Autistic Self Advocacy Network is asking all those who write to express their outrage to cc: info@autisticadvocacy.org so that ASAN can keep track of the strength and sources of the response. They also advise us to be mindful that abusive messages hurt our cause--please be respectful in your comments.

A special thanks to Bev at Asperger Square 8 for bringing this to my attention.
Others who have blogged on this:
ballastexistenz
Whose Planet Is It Anyway?
Whitterer on Autism
Maternal Instincts
The Joy of Autism
LeftBrain/RightBrain
Action For Autism
Along the Spectrum

If you read nothing else today...

2008-05-21T07:40:00.000-07:00

It should be this! Kev (LeftBrain/RightBrain) continues to do an outstanding job reporting on the Autism Omnibus hearings. Specifically today on Elizabeth Mumper's (medical director for DAN/ARI and founder of the Rimland Centre) testimony.

Some highlights: If you are testifying & referencing a study for a statistic (to support your beliefs), make sure those statistics are actually in the study! How accurate is the Porphyrin test (especially with regard to results in both autistic and non-autistic children), and does it detect mercury in the brain? Do not miss this!

Something interesting I came across was this: Dr. Mumper states she has never treated a child for mercury poisoning. Which, is somewhat startling to me, seeing as she is a DAN! doctor. I came across a few things that made her statement all the more puzzling. Here, from a vaccinetruth.org:

Chelation Use in Autism Spectrum Disorders

The role of heavy metals such as mercury in autism has been heavily debated, and many parents are turning to chelation as a potential treatment. Dr. Elizabeth Mumper presented her findings from treating children at the Advocates for Children Pediatric Clinic in Virginia.

She reports that she has treated 280 children with autism who showed altered metabolism of porphyrins in blood and urine. She uses this disruption in porphyrin levels as an indirect marker for heavy metal exposure, and in addition noted that these patients show a disruption in the methionine synthase pathway, also measured in urine and blood. In addition to chelation therapy, children receive vitamin supplementation to compensate for possible loss of essential metals lost during succimer treatment.

Although no statistical analyses were conducted on the effectiveness of chelation therapy in children with autism, Dr. Mumper has cited positive responses from parents who report an improvement of symptoms following oral succimer chelation therapy as part of the DAN! protocol.

And then here, on the DAN/ARI website, scroll down to the box at the bottom and read the "Treatment Options for Mercury/Metal Toxicity in Autism and Related Developmental Disabilities: Consensus Position Paper." You will see that Dr. Mumper was one of the signed physicians on this paper.

So, let's see--it would appear she believes in Mercury/Metal Toxicity, has treated 280 children who she claims had markers for "heavy metal exposure," and that these children's parents have "cited positive responses" from her treatment. I'm curious if all of those parents realize that Dr. Mumper was treating their child for a "diagnosis" (heavy metal exposure) based on a test that she now states does not provide any evidence that mercury is in the brain.

I also wonder if all of those 280 sets of parents (or the many more that have been "treated" since) believed their children were not being treated for mercury poisoning. This idea, of mercury poisoning, is plastered throughout the DAN/ARI and Generation Rescue websites. In fact, many of the parents and activists affiliated with DAN, Generation Rescue, et al refer to autism as "mercury poisoning."

Jenny's New Book

2008-05-19T07:55:00.000-07:00

I was checking out Amazon.com when I stumbled upon Jenny's new book. It is entitled, "Mother Warriors: A Nation of Parents Healing Autism Against All Odds," and is available for pre-order, with a release date of September 23, 2008. Mother Warriors? Really? That title is hefty, it's sure to raise more than a few eyebrows. I assume Ms. McCarthy got the "Mother Warriors" from Oprah. On her show, she said to Jenny and Holly Robinson Peete (and perhaps to all us "autism moms" or maybe just the ones who are fighting autism?), "You're mother warriors is what you are." I've heard Jenny use the "W" word before, but I'm not sure if it was before or after her appearance on Oprah.

I have no doubt this will be another bestseller. Good for Jenny and TACA. Bad for us. I've written on my concerns of such a book previously. I'm curious to see what the criteria for being "healed" from autism is? Is there a set of tests or surveys? Are the families profiled subjected to testing, if so with what and by who?

Bigger than my doubts on what "recovery" from autism is, is the issue I have with this mentality. The idea that "recovery" is within every autistic child's reach, and that we as parents (or more often, as mothers) are staring down some doom and gloom timeline to "fix" our kids. We have seen parents who feel they have done all they were "supposed" to do, they had tried everything, and still had not gotten "rid" of their child's autism. Children have been murdered by their parents (and other carers) or died during chelation and some of these other so-called treatments. This idea that your child needs to be cured, that it's like they've been "hit by a bus," and that we should try various treatments (keeping in mind that like chemotherapy, these treatments won't help every child) until they are "recovered," can be very dangerous. Nobody, especially the media, wants to tell this side of the the cure autism movement.

Celebrating only the autistic children who are able to supposedly be "healed" or "recovered" only devalues the life of autistic individuals. It distracts society from the dire need for adult services, and blurs the reality that autistic children do really grow up to be autistic adults (yes, Jenny, once again--there ARE autistic adults). It also further burdens parents who do not see the same progress in their child--especially if they bought into the propaganda and tried all those supposed treatments. This growing mindset, and a book such as this, can be very dangerous.

Ramblings this week...

2008-05-14T21:12:00.000-07:00

The other day, I was flipping through the channels. I missed most of the interview (which, I can't say I was upset about!) with Deirdre Imus on Fox News. The banner on the bottom of the screen read, "Parents trace link between mercury in vaccines & autism." What they fail to mention in that headline, is that this link has no scientific basis. Once again, Mrs. Imus, just like Jenny and others, denies the possibility of a genetic link to autism. This perspective is somehow held onto by these people, despite real, hard evidence of various genes related to autism. Twin studies are very interesting to review. Here's what Deirdre had to say:

"...no such thing as a genetic epidemic & autism is an epidemic."

It was a brief piece, at least what I caught of it. What's unfortunate, is that Deirdre's irrational points, along with that ridiculous headline about a "link" between vaccines and autism, all got the last word. I was surprised the phone wasn't ringing, family and friends asking "did you see Don Imus' wife on T.V.?" Questions about the Omnibus cases, and also, I imagine, why the heck Mrs. Imus was involved with this debate. No one did call, so I assume they all, like I almost did, missed this brief snippet. One thing is for sure, the anti-vax message is spreading. For a while, it was found only on MSNBC, and then CNN, and now Fox. It's clear to see who has all the money--and what they are doing with it. Why ever would this elite bunch, with their cash cow organizations, want to actually help autistic people with the money they raise?

Something I found strangely ironic, was a while after this autism-vaccine piece, the show featured a comedy troupe in the U.K. (doing a Facebook sketch). This troupe is called "Idiots of Ants," which when pronounced aloud is, "Idiot Savants." I imagine that no one at Fox News understands the irony. Well, based on statistics, perhaps at least one person on the production crew, in the back office, or in the studio got it, if their child is also autistic. The term "idiot savant" is no longer used, but was once how autistic savants (and in general, most savants) were referred to. Webster's defines "idiot savant" as

"a person affected with a mental disability (as autism or mental retardation) who exhibits exceptional skill or brilliance in some limited field (as mathematics or music) —called also savant"

This thought came to me tonight, amidst all this autism-vaccine hubbub. What do the anti-vaxers have to say about Childhood Disintegrative Disorder? It was first documented in 1908. The fact that the symptoms and onset of CDD is very similar to regressive autism (age being the main differential), would make one wonder if they both have the same cause. Recently, there has been some written on autoimmune and environmental factors in CDD. However, since it has been affecting children since at least 1908 (and surely prior to a doctor identifying and naming it), one has to wonder if a vaccine link to CDD is truly feasible. Surely the children with CDD in the early 20th century were not vaccinated. Curious...to me at least.

The Question That Led To Many Questions...

2008-05-14T20:37:00.000-07:00

"What is wrong with her?"

This is what a classmate of my eldest child asked, regarding B. It caught me by surprise. For one, over the year, A's class has seen her little sister. They've also heard my daughter speak about her. So, I assumed all the kids understood: she's different. I guess not. Perhaps hearing stories or explanations, and seeing a child in the special ed group is one thing. Actually spending time with and being near to that child is another.

B has great difficulty in new settings. She has a very hard time with new people, especially children. On the day this question was posed, my little one was having to tackle both. We were in a semi-strange classroom (her sister's room, which B has been to only briefly twice before) and, of course, it was full of children. The visit began with anxiety and tears, B not wanting to go in the room. However, I had to be there in the room to help out. I reassured her, and we made it into the room without anymore difficulty.

Her sister swiftly found crayons and paper for coloring (did I mention A is the greatest big sis ever?!). We sat at the teacher's desk, and she colored. The children were busy with a quiet activity themselves. The boy sitting closest to us attempted to converse with B. "Does she talk?" he asked, after getting no response from her. "Yes," I said. Indeed, she is verbal (very silent in situations such as these though). The boy continued to say "hi" and tried to get a response from her. She burrowed herself into my chest (something that becomes harder and harder as she grows and gets bigger). I told B she could wave if she didn't want to say hello, she did neither. The boy eventually got bored and went back to his work.

A while later, she was done with coloring. We walked over to the book corner. B was very hesitant, not wanting to be exposed out there, in front of the class, in front of those children. She clung to me, and we carefully made it to where the books were kept. As we were picking out a book, that's when I heard "what's wrong with her?" The little girl asked, half concerned, half aggravated. I can't pinpoint what made her ask this question. So many of B's mannerisms are now normal to me; I have a hard time deciphering what is deemed abnormal by others. Was it because she wasn't speaking? Because she stared down at the ground, never looking at the class? Was it her whimpering? Perhaps she was stimming, or was it something else?

I guess I was caught off-guard because at the time, as far as I could tell, she wasn't doing anything overly exaggerated. She wasn't having a meltdown, she wasn't rocking, flapping, or walking in circles, she wasn't shrieking or doing anything else that would make her appear obviously different. And yet, an elementary student picked up on the fact that something was different about my little girl.

I was perplexed and bothered by the question. I had assumed that these kids understood her. Sounds silly to me now, to expect that from children. I also thought that in her quiet moments, B blended (not that it's some goal of ours, just an assumption of mine). I'd even heard from people here and there when she was younger, that at first glance, they'd "never even know anything was wrong with her." I didn't have an explanation for the inquisitive girl. I told her that B was okay, and for her to get back to her classwork.

"What's wrong with her?" It echoed in my mind and really bothered me. I felt sad for my daughter. I've felt this before. The times people have asked "why does she do that?" or "what is she doing?" And when other children have given her odd looks. I've even heard kids ask A about her sister, "why doesn't she speak?" A common response is "she's very shy" or "she's really excited." It's easier to say that, to people who you'll never see again and when you've only a moment to speak. If I do have more time, I have explained autism, sensory issues, feeding tubes, etc. I certainly didn't know how to give a child an answer to this particular question.

And, in this moment, I realized this was only the beginning. In the last year or so, the differences between B and her peers have become more obvious. The questions, the looks, the curiosity of others increases. Aside from the social, sensory, and other issues, her motor skills are pretty delayed. So, even when simply playing at the park, my child struggles. Well, I see her struggle. To B, it's just her body--it's how it's always worked, she knows nothing else. So, I don't know if I can say "she struggles." She has to work a lot harder, falls a lot more, and isn't able to do some things that kids her age can do. But again, it's not like she sits there thinking "if only I could..." as she never has. I don't know what level of self-awareness B has (if it's any less than other kids her age or not), but she isn't very interested in most other children (especially those she doesn't know--like the ones at the playground, she has a very hard time interacting and even observing them). So at this point, I don't think she worries about what her peers are capable of doing versus what she can do.

I suppose the other reason why this simple, even innocent, question affected me more than I would have expected, was because I didn't want my daughter to hear it. As with her gross motor delays, I'm not sure how these comments affect her. A part of me hopes she doesn't care about that sort of thing, that what other people think just doesn't matter to her. But what if she does? I certainly wouldn't like it if I heard "what's wrong with her?" or "why is she like that?" and so on, wherever I went. It would surely, at the very least, damper my self-esteem. I hope my child doesn't understand what's implied in these questions. Hopefully, she is busy thinking of better things and focused elsewhere when these comments are made. In time, I imagine I will learn if and what B hears, if she cares, and how it may be affecting her.

Until then, a girl's simple question leaves me with more questions of my own.

Mother's Day

2008-05-05T19:30:00.000-07:00

A mother understands what a child does not say. ~ Jewish Proverb

(Breakfast In Bed ~ Mary Cassatt)

This is from Elaine Hall (aka "Coach E") of The Miracle Project (Autism: The Musical):

My mom used to say that Mother's Day was just another day. She still needed to make the bed, straighten up the house, wash the dishes (especially after we'd made her that fabulous breakfast in bed and turned the kitchen into a splattered mess!) Though my mom didn't always show it, I know those cards we decorated and the little gifts we made in school warmed her heart.

For us "Special Moms" it can be a little different. Our kids can't always express how they feel towards us in traditional ways. They may not be able to verbalize how they feel, or they may not be able to draw or write their name on a card. But know, when you dig down inside of your own soul, you can hear their voices.You can sense their appreciation. You can know that you are their lifeline; their advocate; their way in to the world.

She continues on with a poem and some words of wisdom for other moms. You can read the rest of her Mother's Day message here. I love what she says, about how your child may not be able to verbalize their feelings, make a card, or the other "traditional" ways kids typically say "Happy Mother's Day."

As I've written before, it is a learning process, to "alter your preconceived notions" of what love looks like, how it is expressed. Do not focus on what your child isn't doing (saying "I love you" or hugging you or blowing kisses), but rather what he or she is doing. And, mostly, how in their own unique and special way, they are showing you that love. Those declarations of love and gratitude are often found in the little, simplest of moments. You have to look closely, and again get past all the ways you once thought love was expressed.

I've also written my feelings, on how honored I feel to be my daughter's mother and also of the very real concerns I have for the future. There are far too many "autism moms" in the media who say awful things about the life they have with their child, desperation and fear are the overriding themes. They claim to speak for all of us, all of us moms who are raising autistic children. The public perception is that we are all miserable, we have no hope, and we are fixated on curing our children. The focus remains on how to "cure" their child, not on acceptance or on preparing for their adulthood.

For new "autism moms," the task of figuring out what the diagnosis itself means, what steps they should take, and how to handle "life with autism," is nothing less than confusing. There are a million perspectives out there. As it's stated above, take a breath. Educate yourself, but be sure you know where you are getting your information from. There are also many people who have hopped on the autism boat to make a buck. I have found the greatest support and advice comes from parents who have older autistic children. They have more experience and perspective, they've 'been there, done that.' And--survived to tell about it! My best piece of advice I might give to a mother whose child has recently been diagnosed with autism: always be aware of what you choose to focus on at the end of the day. That can make all the difference, not only for you, but especially for your child.

"My mother had a great deal of trouble with me, but I think she enjoyed it."
~ Mark Twain

Kids' Autism Awareness

2008-05-03T06:36:00.001-07:00

I recently purchased this book, The Autism Acceptance Book which I think is a really great book (workbook as well). It's really wonderful for siblings, the first book that lets them "step" into their sibling's experience. For example, the book discusses that some people with autism may have a hard time talking. For each section like that, they have a "Walk in their shoes and see how it feels" part. For the talking section, they recommend this:

"Pretend you are in class and you can't talk. You have to go to the bathroom, but the rule is that you can't go unless you ask the teacher. How would you ask the teacher without using words?"

and then further down after listing examples like gestures and drawing to express this,

"If the teacher did not understand you or got impatient with you, that would be pretty frustrating, wouldn't it? Can you imagine how frustrating it would be to know what you want, but not able to say it?"

This was something that really helped my oldest. The book is very positive, and these "walk in their shoes" parts further a kid's understanding. I will add, as I've done before, that we always start our conversations on autism with our oldest as "well, you know any little brother or sister is a pain in the butt to their older sis or bro" and we recommend she just ask her (my husband and I both have older siblings) aunts and uncles about that. I think parents must be careful of "dismissing" every issue as part of autism. Granted, there are things that are, because my child is autistic or has other special needs. We openly address those. But, to harp on about how all the issues siblings may face are autism's "fault," is not proper.

The book is geared toward "being a friend" to autistic kids. At the end, this is written:

"Now it's your job to spread the word! Tell your friends and family how important it is to try to understand, accept, and include everyone."

My daughter has done more for "Autism Awareness" than most people I know. It's her simple kid-approach that is endearing to watch. It's the "yeah, my sister's autistic and has a mic-key on her stomach--so?" viewpoint of hers that is just awesome. She tells her friends "yeah, she gets really shy" explaining why her sister won't even look at, let alone speak to, any of her friends (as they all call out & wave to her). She tells them "she has a hard time eating and drinking, so her mic-key helps her do that." I have no doubt that as she goes through school and enters into adulthood, my eldest will have educated and opened more than a few minds. She is quite the advocate in her own right, and I could not be more proud of her.

April Is Over...

2008-05-03T05:30:00.000-07:00

April is officially over. And all I can think of is John Lennon's "Happy Xmas (War is Over)" song...

So this is May First
And what have you done
Another month over
And a new one just begun
And so this is May First
I hope you raised funds
The near and the dear one
The old and the young

So what have you done?

$1,402,639 was raised thus far (assuming this is final amount, as campaign was said to end yesterday, May 2) from the Toys R Us/Autism Speaks campaign. It does not clarify if that is the online donations, or a combination of in-store and online funds raised. So what will Autism Speaks do with this money? And what will they do with the millions and millions they continue to raise? I urge Autism Speaks to help, the young and the old. Create programs and services, or create separate, smaller agencies to handle the needs of older children and adult autistics. That is what's truly needed.

I was glad the other day, as I checked out of the store, that this was the last time I'd see these. At least for now. At least until next April...

I didn't feel obligated to do anything for "Autism Awareness" month. Sure, I blogged on it, I watched CNN on that day, I read some articles and studies, I watched some documentaries, I spoke to family and friends, I was inspired, and, of course, lived each day, quite "aware" of autism. We make people "aware" of autism (& also of things like seizures and feeding tubes) whenever the situation presents itself. Perhaps at the playground, a friend's house, or elsewhere. I don't feel it necessary to educate every person I come in contact with. Mostly because, I am raising two young children--a handful enough out in public. I simply don't have time to give even a mini Autism lesson to the strangers who may stare or whisper. And, to be honest, that reaction typically only comes following two things: a meltdown or if they see my child's feeding tube. Both times, I'm fully engaged in my child and don't have a moment to be concerned with others.

People generally smile, even if they appear perplexed, if they catch my child "stimming." I don't think they see a child jumping or walking in a circle or even flapping and think "autism." They most likely see an excited child, perhaps a hyper one, and usually a happy one. For some, if they know what "stimming" is, they may see that, but then they'd also understand it. So, did I do my part for the month of April? I'd say yes. But then again, I do that same "part" every month of the year. And the biggest bit on "awareness" you'll hear from me in person is the need for adult supports, respect for autistics, and the disgusting reality of eugenics.

One of the COOLEST things I came across during "Autism Awareness" month was here, please check it out.

On Disablism

2008-05-01T21:24:00.000-07:00

Blogging Against Disablism Day
Disablism is something is something new to me. Actually saying that now sounds ridiculous. It is true, I've come to realize, that until disability touches your life, most remain completely unaware of it (and yet many are guilty of it). As a parent of a disabled child, I'm slowly learning and seeing it in the world. I see it at times when other parents look at my child, I see it when some "professionals" give their opinion of her, and I even see it (although they have no clue of it) in the eyes of other kids on the playground. I am very aware that, unfortunately, this is only the beginning of my experiences with disablism. I hear from other parents who deal with it in their lives, with their older disabled children. I hear about it from disabled adults who face it on a daily basis. For those who feel disablism doesn't exist, you are sorely mistaken.

"DON'T STARE!!!"

That is what so many parents teach their children. Children are naturally curious about anyone who is different from them. Even a small infant may seem especially interested in seeing someone with glasses or with a different hair color, anything that is unlike their own parents. It is natural for a child to want to investigate. The first time they see a person in a wheelchair, for example, they are most likely thinking "wow, what is that cool chair with wheels?" Whether it is a walker, a guide dog, a wheelchair, someone flapping their hands--it's all curious to a child. So, they stare and observe. Upon noticing this, well-intentioned parents say those two words, in that tone, "DON'T STARE!!"

Most parents, having been raised with that same mindset, don't bother to explain differences or disabilities. They prefer to simply pull their child along and move on. Such a shame. A valuable life-lesson, lost. This message of don't stare, don't look, don't connect with "people like that" continues. I think often it's "innocent ignorance" on the part of parents, and how they too were raised. They're are afraid of the differences they see between themselves and a disabled person (differences are generally not embraced by society). They fear that if they ask a disabled person questions about their disability, that person will be offended. If we never open up a discussion, how will we ever understand one another? People sometimes seem awkward when my husband and I openly speak about autism, or even seizures and feeding tubes. It's not expected, we're not supposed to be open and honest about that sort of thing. This is not supposed to be dinner conversation. Except, it is. It is our life, and we want to educate you--we want to change your perception.

People have been told it's rude and improper to look, so how can they ever approach a disabled person? Trust me, there's nothing rude or improper to say "hello" to a disabled person, just as you would say "hello" to anyone else. Things like "how are you?" or "wild weather we're having" or "this line is ridiculous" and so on, will not offend a disabled person. I assure you. Granted, depending on the disability, a response may not be possible. But, have you lost anything by not even making the attempt, and by treating your fellow human being as just that--a fellow human being?

I was raised this same way. I do not fault my parents, they simply didn't know any better. They thought what they were doing was right. In middle school, I had major back surgery. I wore a cast that began just under my armpits, down my torso, and down one leg to the knee. After 6 weeks, the cast was replaced by a brace of the same size. About 2 months after that, the leg part of the brace came off. It was a months before I was without a brace. Following surgery, I slept in a hospital bed in our dining room, it had a trapeze on it so I could get myself on and off the bed. I had a commode that had to be kept in the laundry room. Our house was not friendly to me, the doorways and bathrooms were too small, my room was upstairs, getting outside required taking 4-5 steps to the front or back yards. My mother had to bathe me. I had a walker and a wheelchair. I remember being ashamed of it all--the cast, the commode, the walker. Part of it was just normal adolescent stuff. I wanted to be healthy, and to just be doing all the things my friends were doing. The other part, was that I felt I had lost my identity. People wouldn't see me--they'd see the cast (or brace), the walker, or the wheelchair. They would see what was wrong with me.

I learned many valuable lessons from that experience. I valued being able to move freely, like I never would have been capable of before my surgery, and will never lose sight of that. I valued privacy and independence, more than any of my friends could imagine. I valued my family even more, for all the support they gave me. I learned how to roll with life's punches, and make the best of it. I learned discipline, from grueling PT sessions. It took years for me to understand the emotions of that experience. I was too young to really understand it all--why I felt the way I did. As I grew up, I realized what I associated with the wheelchair, the special bed, etc. I saw it as weakness. I felt damaged. It took many years for my self-esteem to recover. Why did I feel those things?

Part of it was just my personality. I am stubborn, and I have a lot of pride. This was a challenge, one that I had little control over. I had to learn patience, and in the middle school years, let's face it--that's a tall order. The other part was, back again, to those early lessons and views on disabilities. I was the one I didn't want anyone to stare at. I didn't have a single friend come visit me--that was my choice. I shut myself in. I didn't want my friends to see the medical equipment, to see me in this big, bulky cast. I didn't want them to stare. It took a while for me to realize I was still the same kid. I still loved watching videos, playing games, and having fun. The cast or the wheelchair or any other equipment didn't change who I was on the inside.

It took that experience for me to realize that neither an ability nor a disability doesn't change who we are at the core. We're all human, we all have our likes and dislikes, we are all far more similar than we often think. It's sad to think that it was only being placed in that situation that changed me. From that moment on, I always felt a silent kinship to the disabled people I would pass on the street. I no longer stared at their equipment, at their differences. I saw a person.

I suppose my that was only part one of this lesson for me. I am now raising a beautiful, amazing, disabled child. As a parent of two children, one disabled, one not, I feel a two-fold responsibility (when it comes to disablism). My first, is to make sure my youngest child is respected, that she has the same rights as any other human being, and that she is appreciated for who she is.

For my eldest, it is to make sure I never say "DON'T STARE!" and end any communication about disability with that. I also make it my job that she learns to look past a disability. She has been "exposed" to more disabled kids than her peers, I would bet. From hospital visits, to doctors' appointments, to coming to some therapy sessions with us, she has seen many different disabled kids. I tell her that it's not nice to stare at someone, jut because they are different. Would she like it if in this world, people with blue eyes were considered "not normal" and so people often didn't talk to blue-eyed people like her, and most just stared? How would that make her feel? We are all different, I explain. Just like your sister's feeding tube, someone else may need a walker, or equipment to help them breathe, etc. That doesn't change who they are--they are just like you and I. Like your sister, they may have more challenges. But, it doesn't mean we can't be friends with them. And it certainly doesn't mean we can't be friendly toward them. You can say "hi" or wave, and you can look at a disabled child just like you would any other kid, but don't just stare, as that's rude. You wouldn't like it if someone was just staring at your sister because she is different, would you?

Growing up with a sister who has worn AFO's and has a feeding tube ("equipment," visual signs of disability) is a good starting point for my child to look past the disability. Living day in and day out with autism and seizures, offers a perspective and understanding like nothing else in the world. She and I have discussed many kinds of disabilities, with openness and honesty. This discussion will continue. I see the compassion my daughter has for her younger sister. I have no doubt that when she is an adult, she will not discriminate against disabled persons. She will see them for who they are, and value them, as she would any other individual.

I would ask every parent, next time you see your child staring at a disabled person, not to say "DON'T STARE!" If they are old enough, use that opportunity to open their minds. Don't be afraid, parents, of disabled persons. Whatever the disability that you see on the outside, look past it. They were born to this earth, same as you. Accept disabled persons, give them the respect and dignity you expect for yourself, and without hesitation, ensure that every person be afforded their human rights. Each and every human being has a gift. How sad if ignorance kept you from seeing all those gifts. Autism is referred to as a spectrum. I see the world quite similarly. It is an amazing collage, and all you need to is an open mind and willing heart to embrace all of its beauty.

Too Many Masters of Illusions...

2008-04-29T08:14:00.001-07:00

"The greatest obstacle to discovery is not ignorance -- it is the illusion of knowledge." ~ Daniel Boorstin

Thanks to the misrepresentation of facts and out of control spinning by many out there, most have not a clue about Hannah Poling's disease, its origins, and its significance. I have tried to explain it, to the best of my knowledge, having read multiple studies, having friends whose children have mitochondrial disease, and even having gone through the process of mito evaluation for my child, with Dr. Shoffner. Many bloggers have written on this, some have also written articles for various new organizations. The authors include other parents, both fathers and mothers ,(one of those moms also happens to have her PhD.), along with neurologists, scientists, and other physicians.

Despite that, people are opting to look past the facts and embrace half-truths and all-out lies. They prefer the sensationalist value of conspiracy theories and blaming the government for "injuring" our children. There are far too many masters of illusions weaving webs and indoctrinating parents into their beliefs, all for their own fame and fortune. To say that it's now been proven that vaccines cause autism (or mitochondrial disease), is beyond ignorant. Who cares if I don't have a clue about what disease Hannah Poling has? What difference does it make if she was born with this condition? I still blame the government!

The realization that Hannah Poling has a disease, one that was not caused by vaccines, and one that doesn't change anything for your own child or court case might be very upsetting to you. I get it. You were exhilarated by the Poling case (especially by those that hyped it to no end), feeling you too would be awarded money for your child's autism. Then you come to find out that Hannah, is in fact, not like your child--how disappointing for your case. I understand that. I realize it may feel better to hang onto something you have believed for so long--even when there is no solid proof or evidence to support those views. To think in new terms, acknowledge that all you had come to believe was all wrong, can be very difficult. But please, I urge you, look at the facts. Look at what the real science shows and proves, with regard to Hannah's condition. See what the real scientists, not a journalist, a lawyer, or other spin "doctors" are saying.

READ THIS, from Scientific American author Nikhil Swaminathan on what Dr. John Shoffner (a mitochondrial disease expert) has to say:

He notes that the route from the vaccine to the child's autism was by no means direct. Hannah's mitochondria were already underperforming, so when she developed a fever from her vaccine, the increased energy requirements likely pushed them past their thresholds. A fever caused by an ear infection or the flu would likely have triggered the autism symptoms if they occurred before or between the ages of 24 and 36 months, he says, which is when classic, regressive autism, which affects one third of sufferers, usually appears.

Shoffner notes that parents and advocates looking to impugn vaccines as triggers for autism—or mitochondrial disease—need direct, not just circumstantial, evidence. "If you were sitting in a waiting room full of people and one person suddenly fell ill or died or something," he says, "would you arrest the person sitting right next to them?"

Jon Poling, says Shoffner, has been "muddying the waters" with some of his comments. "There is no precedent for that type of thinking and no data for that type of thinking," Shoffner says.

So, now you know what a mito expert has to say. Not just any mito expert, but THE one who was involved in a study with Dr. Poling, and MOST significantly, the ONE who diagnosed Hannah Poling with mitochondrial disease. Now what say you?

Illusion

Pronunciation:: \i-ˈlü-zhən\
Function:: noun
Etymology:: Middle English, from Anglo-French, from Late Latin illusion-, illusio, from Latin, action of mocking, from illudere to mock at, from in- + ludere to play, mock

1 aobsolete : the action of deceiving b (1): the state or fact of being intellectually deceived or misled

a (1): a misleading image presented to the vision (2): something that deceives or misleads intellectually b (1): perception of something objectively existing in such a way as to cause misinterpretation of its actual nature

synonyms see delusion

This is an illusion:

This is not:

In the first picture the dots don't really exist, they are all an illusion. In the second, the dots are really there, a fact that is easily proven. Illusions are all around us. They are fun and novel, when they come in forms of art and imagery. However, they are dangerous when they stem from issues of medicine and science.

Questions for David Kirby

2008-04-28T21:17:00.000-07:00

I read this quote on Left Brain Right Brain, it is from David Kirby's blog on the Huffington Post. I have a few questions for Mr. Kirby. Here is the quote:

"But I have personally identified at least a dozen (and there are reports of many more) children with cases in the court who meet the exact same medical criteria as Hannah, and whose cases will almost surely be compensated as well—each time with the attendant media fanfare."

I'm curious, how did he go about "personally identifying" these "dozen" children? Can Mr. Kirby offer any documentation of these children? Are parents whose court cases are pending in vaccine court consulting with him? Exactly what criteria is Mr. Kirby using, and what records does he have access to in order to "identify" these children?

Lastly, and most interesting to me, are the children that "meet the exact same medical criteria as Hannah." I am assuming these children have had muscle biopsies and diagnoses of mitochondrial disease, exactly like Hannah. Otherwise, they could not be categorized as having the "exact same medical criteria" as Hannah. So, I would be curious to know--have these children undergone mitochondrial and genetic testing? What were those results? How did Mr. Kirby gain access to those medical records?

Is It Fever? Mercury? Thimerosal?

2008-04-28T20:41:00.000-07:00

Pick a cause, any cause. The growing list of possible causes of autism continues to grow. It could be mercury, thimerosal, ultrasound, french fries, the television, excessive hygiene, and we can't forget "refrigerator moms." Now, is fever the new cause du jour of autism?

An idea being tossed around by people commenting on this piece, is now that it's the "vaccine-induced" fever that is affecting these children with "mitochondrial dysfunction." Is this becoming an idea that is adopted by Mr. Kirby and others?

Are we to blame fever now for autism (ala mitochondrial dysfunction)? How shall we go about "greening" fever or banning it? One can easily predict that even if we "green our vaccines," fever would still be a common side-effect. Likewise, splitting up vaccines does not lessen the chance of fever post-immunization. The fever is due to our immune system's response to the microorganisms in the vaccine. So, is this idea of the "vaccine-induced" fever just another stepping stone to banning vaccines altogether?

Is it fever or is it mercury or is it thimerosal or is it vaccines altogether that are to blame? I wait with bated breath for the next autism "cause" that will be "uncovered."

More Mito Docs Speak...

2008-04-28T14:50:00.001-07:00

Finally. More mito docs are coming out of the woodwork (please read Mitochondra and vaccines - the science), and speaking out about the Poling case (even those directly involved in it). And, let me back that up by saying these physicians are highly-respected, very intelligent, experts in their fields. They spend their days and nights caring for patients with mitochondrial disease or evaluating people for possible mito abnormalities, performing studies, reading other physician's reports, and researching, researching, researching. These doctors eat, sleep, and breathe mito.

Why any parent would prefer to try and gain understanding of the complexities of mitochondrial disease (something which is a difficult task for most pediatricians and other docs to do even) from a P.R. guy, or a lawyer, or anyone other than the mito experts is beyond me. If your child has a broken bone, would you take medical advice from your stock broker? Now, your stock broker is probably very intelligent, nicely groomed, and well-spoken, but again, wouldn't you rather ask his opinion on the markets than medicine? So, why are so many parents listening to David Kirby and others like it's the gospel?

Make an appointment with Dr. John Shoffner, or Dr. Salvatore DiMauro, or Bruce Cohen, to name a couple. Let them explain the ins and outs of mitochondrial disease. Ask them if vaccines cause it. Ask them what they think of the outcries from those on the anti-vax side. Then, and only then, can real discussion on this topic begin. When you have THE experts on mitochondrial disease, saying that vaccines didn't cause mitochondrial defects in Hannah Poling, what is there to question?

I suppose the anti-vax brigade will claim that "well, they are doctors on the CDC's payroll" or some such nonsense. Take your head out of your asinine conspiracy theory for just a moment. If the running idea is that all these docs are corrupt, out to make a buck, and covert agents for the government--wouldn't they be the ones saying, "yes, kids with autism probably all have mito disease, come get tested by me."

Talk about rolling in the dough. To get a good and thorough evaluation of mitochondrial diseases and other genetic abnormalities, you are easily looking at $20,000 - 40,000. That is PER patient. If every child involved in the omnibus gets such thorough evaluations, these doctors will be millionaires in no time. So, why would these doctors state that vaccines don't cause mitochondrial disease, and therefore, vaccines do not cause the autism (or autistic features) that can sometimes occur along with mitochondrial disease?

They aren't doling out shots in their clinics, so they're not getting paid by Big-Bad-Pharma to be spokespeople for the vaccines. Why would they "cover up" a link between mito and vaccines? For no reason, that's why. There is no link. These physicians have high ethical standards, and if it was found that vaccines indeed caused mitochondrial disease, they would be the first to say it. They are striving to find a cure for mitochondrial disease. There is no reason for them to deny a possible cause to a disease they are fighting to get rid of.

**Hats off to Kristina & Kevin for their coverage on this ever-developing story!

Doctors & Scents

2008-04-27T20:15:00.000-07:00

I brought my youngest to the doctor the other day. Her regular physician was not available, so we met with a nurse practitioner. Most everyone at the pediatrician's office knows my daughter, and more importantly, how to make her feel comfortable. This NP, just our luck, was new and one we'd never met. The NP was really sweet, I think she must have gotten a primer on how to approach my daughter by the nurse (I'm not kidding!). I have to say, my little one did great, despite having never met her.

What wasn't so great, was the overpowering smell of the NP's perfume. It was very strong. I will never understand why someone in the field of medicine would wear any scent, or at least not a very strong one. I'm not sick, and it made me feel like I needed to cough.

Now, I will admit, I may be a bit biased to begin with. I have never really enjoyed heavy scents. When I do wear perfume, it is a very light scent. I myself do not wear any perfume or scented lotion if we are headed to a doctor's office.I do this generally because I consider those with asthma and other breathing difficulties, allergies, colds, nausea, etc. who are more than likely sitting in the waiting room. Another reason, is because I consider those who may be extra-sensitive to such smells, like my child.

My daughter is very much affected by smell (a super smeller and taster here!). She will gag in the grocery store, pick up on odors I never even catch, and refuses to sit by us if we are eating certain foods (plain lettuce for one, believe it or not). So, in our home, we've all taken note of that and try our best not to insult her delicate olfactory system. And also, to not be insulted ourselves should she gag or scrunch up her nose at us or our food.

I realize I can't create some bubble around her to prevent her from smelling odors. There's far too many people, food varieties, buses, and so on in this world! I do hope that one day she is able to tolerate at least some of the day to day smells--like various foods. But, it would be nice if those in the medical profession would take into account their patients' needs (and not just my sensory-sensitive kiddo, the patients with the ailments I listed above too). One would think, that those who work in hospitals and doctor's offices, would take that into consideration.

That's just my two scents...

NASCAR & Autism Speaks: Maybe Some Potential Here

2008-04-25T07:44:00.000-07:00

NASCAR Race to Benefit Student Clubs for Autism Speaks:

DOVER, DEL. (April 2, 2008) – Dover International Speedway and Best Buy officials announced today that the June 1, 2008 NASCAR Sprint Cup Series race will be named the “Best Buy 400 benefiting Student Clubs for Autism Speaks.” A variety of initiatives are planned for Dover's May 30 – June 1, 2008 NASCAR race weekend to increase awareness and raise funds for Autism Speaks. Last year's June NASCAR Sprint Cup event in Dover, also benefiting Autism Speaks, saw Martin Truex Jr. pull into Victory Lane for his first career win at the Monster Mile.

Student Clubs for Autism Speaks (SCAS) helps further the mission of Autism Speaks by creating the opportunity for students to engage and actively participate in positively affecting the lives of people with autism. Through education, awareness, friendship and fundraising, SCAS includes students at the middle school, high school and college level.

I had not heard about these clubs prior to this headline. There is plenty of information about Student Clubs for Autism Speaks (SCAS) on their website. There are a few issues I take with this program. The fact that "to fund global biomedical research into the causes, prevention, treatments and cure for autism" is part of their purpose statement, aggravates me. I've made it clear in the past where I feel this research looking into "prevention" and "cures" will end up.

Another issue, this club is essentially a mini Autism Speaks, one that's primary focus (again) isn't the inclusion and acceptance of fellow (autistic) students, but rather raising money. For example:

(a) Fundraising: All Clubs must field a walk team in their local Walk for Autism Research. Those outside of a Walk region should go to the Autism Speaks website for assistance. Other fundraising activities may be undertaken at the discretion of each Club.

What I do like is this part of the purpose statement:

...to promote an environment of acceptance for students with autism;

This should be the first and most predominate statement for such a club. Why can't we simply have a club that promotes awareness and acceptance, along with inclusion? A club that's members would welcome autistic kids, and truly become 'aware' of autism. Such a group could also be helpful for siblings of autistics. From their perspective, they could help educate the members, and it could also be empowering for them--knowing they were helping to pave the way for social acceptance of their brother or sister.

The messages that our children and teens are hearing with regard to autism will alter how they view autistics in their adult life. If your view on autism and autistics is negative, that you hate it, that it should be wiped out, you are teaching your children that when they come in contact with an autistic person they should stay away. When that same child is an adult, they won't hire an adult autistic, they won't vote for measures for support services for autistic individuals. The opposite is also true, thankfully. If you raise your child, teaching them compassion and acceptance of others, then they will reach out and say hello to their autistic peer. They will understand what autism is, and not run from it or from autistics. This child, when they are an adult, will gladly hire an autistic person, and see that services are available to those on the spectrum.

I'll have to see how these clubs evolve and change over the next few months and years, before I make my final opinion on them. From what I can tell, there are not many of these clubs nationwide--yet. It would be great if in time, the main goals for these clubs are to promote friendship and understanding between students, both on and off the spectrum. Only time will tell which direction this club, and Autism Speaks as a whole, will take (a shift and change in priorities is possible). There is some potential here.

What Is Going On In Virginia???

2008-04-24T17:39:00.000-07:00

Thanks to Ian Shapira of the Washington Post for giving this national attention. The Virginia Board of Education is trying to change their special education laws, giving even less power to the parents. I know many of us have struggled at I.E.P. meetings, not always seeing eye to eye with the school district. For some, it's an even bigger battle--one where the school refuses a physician's diagnosis, denies services, or worse still, employs use of restraints, and the list goes on. It's become common practice for families to hire advocates, and all too often parents end up in court to fight for their child's right to an education. From the Washington Post article:

A proposed revision of Virginia's special education rules is triggering widespread protests among parents of disabled students, who say it would strip them of power in negotiating their children's education.

Currently, school systems must obtain parental consent before eliminating such services as speech or occupational health therapy. But the state Department of Education is proposing that schools be allowed to suspend them without such consent. If a parent objects, the service would be maintained until the matter is settled through dispute resolution.

So now Virginia wants to make it even more difficult for us parents to have a say in the matter (of our own child's education!). These new "rules" would mean that the school can take away services without parental consent. As you take away the rights of parents, this opens a can of worms. If you don't need to have a meeting or discussion with the parents to discontinue speech therapy--who's to say the school will claim they don't need the parents' consent to use restraints? Honestly, who thought this change was a good idea? The last thing the state or school districts need are more say when it comes to our children's IEPs.

The parents in this town are protesting this new proposal. I don't blame them at all, and I certainly support them. Hopefully their voices will be heard (yours can be heard here). If you live in the area, the article lists information on public hearings:

The department, which has received 3,000 comments on the proposal, has scheduled public hearings across the state, including one from 6:30 to 9:30 p.m. May 15 at Freedom High School in Loudoun County and another from 6:30 to 9:30 p.m. June 2 at Oakton High School in Fairfax County.

The good news, for the parents in Virginia, is that their governor has answered their calls, and has many concerns with this plan:

I have reviewed the proposed regulation on a preliminary basis. ... I would like to express some concerns that I have – concerns that parents across the Commonwealth have shared with me. Virginia has long been a leader in the area of parental consent and involvement in the special education process. I have concerns about proposals in this regulation that reduce parental involvement in key decisions made about their children. These include, but are not limited to:
1. Elimination of parental consent prior to partial or complete termination of or changes to special education and related services.
2. Elimination of parental consent before providing special education services for transfer students.
3. Removal of parents from the Functional Behavioral Assessment team.
4. Addition of an option for the Local Education Agency to refuse a parent’s request for an Individualized Education Plan meeting if the LEA considers the request unreasonable.
5. Reduction in the number of regular progress reports given to parents on their child’s Individualized Education plan.
I do not currently see any circumstance under which I would approve a final regulation reducing parental involvement in these ways. I urge the Board of Education to take this and other public comments into account regarding these provisions and to act accordingly prior to submitting a final regulation for my approval.

Hopefully, the governor keeps his word, and this will be a proposal that goes nowhere. It's likely that in the end, the only harm will be wasted time, paperwork, and money. We can't forget the unnecessary raising of stress levels for the parents involved. All this, thanks to the Virginia Dept. of Education's ridiculous attempt at being more efficient. Right.

An Action Plan Worth Noting (& Learning From)...

2008-04-23T07:05:00.000-07:00

Perhaps this is something we (mainly our government) in the U.S. could learn from. I hope it is successful, and other countries will follow Wales' lead. From BBC News:

A strategy to help people affected by autism in Wales is set to be launched, with the Welsh Assembly Government claiming it to be a world first.
The action plan aims to improve services in health, social services and education - and expand into areas of housing, leisure and general society.
The assembly government has pledged £1.8m for the programme's first year.

Improvement in health and social services, education, and areas of housing, leisure, and general society. Isn't that a great place to put money?

Earth Day 2008

2008-04-22T21:11:00.000-07:00

I'm tired, so I don't have anything real insightful to post on this. Just a funny story:

In a gift shop today, my eldest alerts me, "Do not buy things that are made from animals!" I smiled at the statement, as it was only one of several declarations she made to me, on how I could be more green (most of which, I replied with "We already do that, sweetie."). I asked her why. She said "because it's from animals." I pressed her further, to see if she was just repeating what she had heard, or if she understood it it. I should know better by now. She then goes on to explain how animals suffer from it. Side note: to which I then add "well, that's partly why I don't eat meat." to which she adds, "WELL, no, that's not it, we NEED meat for that [to eat]!!!"

So, we continue walking through the gift shop. She looks down and says "THIS is animal," pointing to the rug (made from some type of animal skin). I told her "yes, it is." I distracted her by showing some of the decorations. We land on yet another animal skin rug (this store had at least 5 of them, and they appeared to be real--go figure, being there on Earth Day!). Now, she is getting angered. "Why would anyone make a rug from an animal? Don't they know they shouldn't do that????" I spoke in a low tone, assured her they probably do and maybe they were just recycling these? I also told her while it's good she has learned that lesson, perhaps this store wasn't the best place to preach on it.

She has a t-shirt declaring "Future President" and I have no doubt she will go very far. I've seen her advocate for her younger sister, debate adults on issues from politics to Barbies, and she always stands strong on her beliefs. This began very young, a few months shy of her 4th birthday, my husband and I took her to vote with us. While in line, she began chanting & singing songs about her favorite candidate. We promptly and gently gave her a lesson on campaigning at voting stations. My husband and I laughed at the thought of us getting kicked out because our preschooler was taunting other voters!

I will add--because I feel obligated to... My husband & I do all we can to be "green." We recycle, conserve water and electricity, use reusable grocery bags, buy organic and local, and so on. All of which, after today, my eldest is breathing a sigh of relief over. :)

Autism and Politics

2008-04-22T19:49:00.000-07:00

Much has been written about the current presidential candidates and their positions on autism. Clinton has made several speeches in the last couple of years, Obama's website has several statements about autism, and McCain made a now infamous remark about a connection between vaccines and autism. And now, autism has even entered into a victory speech by Hillary Clinton this evening.

"We will tackle everything from autism to Alzheimer’s, cancer to diabetes, and make a real difference."

On her website, you can find Clinton's plan for autism. And here is what she said on World Autism Day. The most significant, from my perspective, was this:

I’ll also provide funding to school districts and universities to train teachers and other health and social services professionals in how to work most effectively with autistic children, since the number of children with autism in our public schools has skyrocketed in recent years. I’ll make sure every young person has a transition plan before they leave high school. I will also ensure that both children and adults with autism have access to the services they need - including housing, transportation, employment - to live rich and full lives. In all, I will commit $500 million annually to provide services to improve the quality of life for all people living with autism.

To be fair, here is Barack Obama's statement on autism:

Support Americans with Autism. More than one million Americans have autism, a complex neurobiological condition that has a range of impacts on thinking, feeling, language, and the ability to relate to others. As diagnostic criteria broaden and awareness increases, more cases of autism have been recognized across the country. Barack Obama believes that we can do more to help autistic Americans and their families understand and live with autism. He has been a strong supporter of more than $1 billion in federal funding for autism research on the root causes and treatments, and he believes that we should increase funding for the Individuals with Disabilities Education Act to truly ensure that no child is left behind.

More than anything, autism remains a profound mystery with a broad spectrum of effects on autistic individuals, their families, loved ones, the community, and education and health care systems. Obama believes that the government and our communities should work together to provide a helping hand to autistic individuals and their families.

Here is John McCain's statement on autism:

John McCain is very concerned about the rising incidence of autism among America's children and has continually supported research into its causes and treatment. He has heard countless stories about families' hardships obtaining a diagnosis for their children's autism and accessing quality medical treatment. He believes that federal research efforts should support broad approaches to understanding the factors that may play a role in the incidence of autism, including factors in our environment, for both prevention and treatment purposes.

John McCain was proud to lend his support to the Combating Autism Act of 2006, which he cosponsored, and worked to ensure its enactment. This law is helping to increase public awareness and screening of autism spectrum disorder, promote the use of evidence-based interventions, and create autism Centers of Excellence for Autism Spectrum Disorder Research and Epidemiology. John McCain understands that despite the federal and scientific research efforts to date, the exact causes of autism are not yet known and greater research is needed to understand this disorder. That is why in November 2007, he joined with Senator Lieberman in requesting the leadership of the Senate Health, Education, Labor and Pensions Committee, which has jurisdiction over federal research into autism, to hold a hearing on federal research efforts regarding factors affecting incidence and treatment in order to help determine where research efforts can best be directed. As President, John McCain will work to advance federal research into autism, promote early screening, and identify better treatment options, while providing support for children with autism so that they may reach their full potential.

I am wanting to stay away from a political debate on this blog, but I will say I do have objections to what's been said with regard to autism by some of the candidates. I am also weary that any of them will actually do much to help autistic adults or teens. There are far too many special-interest groups in Washington, that ultimately will persuade them. I have no doubt that Autism Speaks and others will sink their teeth into whomever is elected President. The funding will go toward those lobbyists who are most convincing (which translates into those finding cause, genetic testing, etc.).

Perhaps I am cynical, but my overriding theory on politicians is that, regardless of their best intentions, get into D.C. and all those promises they made to earn your vote slip away. To be honest, I won't choose who I am voting for based (at least not solely) on their stance on autism. Part of it is because I feel so much of what they say and promise is mostly rhetoric, the other part is I feel there are other issues at hand that take precedence over autism--when it comes to picking the next President.

I wish nothing more than to be pleasantly surprised. I do sincerely hope that whomever moves into the Whitehouse in several months is truly aware of autism, and the greater needs that exist today (adult programs, on top of that list).

ADHD Meds & Your Child's Heart

2008-04-21T18:59:00.000-07:00

Press Release: Children with ADHD should get heart tests before treatment with stimulant drugs

Statement highlights:
• The side effects of stimulant drugs, like those used to treat ADHD are usually insignificant, but are important to monitor for children with ADHD and certain heart conditions.
• Children diagnosed with ADHD should receive an electrocardiogram (ECG) to rule out heart abnormalities before beginning treatment with stimulant drugs.
• Children currently taking stimulant drugs who did not have an ECG prior to treatment should get an ECG.

Read the American Heart Association's entire press release here. The parts that I found particularly important:

DALLAS, April 21 – Children with attention deficit hyperactivity disorder (ADHD) should get careful cardiac evaluation and monitoring – including an electrocardiogram (ECG) – before starting treatment with stimulant drugs, a new American Heart Association statement recommends.

If heart problems are suspected after the evaluation, children should be referred to a pediatric cardiologist. Once stimulant treatment begins, children should have their heart health monitored periodically, with a blood pressure check within one to three months, then again at routine follow-ups every six to 12 months.

In 2003, an estimated 2.5 million children took medication for ADHD. Surveys indicate that ADHD affects an estimated 4 percent to 12 percent of all school-aged children in the United States, and it appears more common in children with heart conditions. Studies report that, depending on the specific cardiac condition, 33 percent to 42 percent of pediatric cardiac patients have ADHD, Vetter said. The number of undiagnosed children with heart conditions is unknown as routine heart screening is not performed, but Vetter said that a recent pilot study she presented at the American Heart Association’s 2007 Scientific Session indicated that up to 2 percent of healthy school aged children had potentially serious undiagnosed cardiac conditions identified by an ECG.

Data from the FDA showed that between 1999 and 2004, 19 children taking ADHD medications died suddenly and 26 children experienced cardiovascular events such as strokes, cardiac arrests and heart palpitations. Since February 2007, the FDA has required all manufacturers of drug products approved for ADHD treatment to develop Medication Guidelines to alert patients to possible cardiovascular risks.

***Bold for emphasis, by S.L.

Subpoena: QUASHED!

2008-04-21T18:22:00.000-07:00

My congratulations to Kathleen Seidel. Here are the details of the "Endorsed Order granting Motion to Quash Subpoena."

Edible Awareness???

2008-04-20T19:41:00.000-07:00

Pretzels??

Autism Awareness????

Has anyone seen these yet? Better yet, has anyone eaten one? Now I'm a big fan of pretzels, but I don't think I could bring myself to eat these. From the Bachman Company website:

Our 100 calorie packs are all natural, low in fat and cholesterol free. Solve your snacking puzzle with this good for you delicious pretzel. The Bachman Company has been and continues to be a proud sponsor and active supporter of Autism Speaks we are donating 5% of our proceeds from the purchase of this product to Autism Speaks.

Interesting to note, is that Bachman lists their gluten-free products, and guess what? These puzzle-piece pretzels apparently are not gluten-free. Is that ironic or what? Kind of like when Rice Krispies was involved in an "Autism Awareness" campaign.

The puzzle pins (which, it seems everyone from actors to coaches wants to wear), ribbons, magnets, even toothpaste (another irony, since the toothpaste was apparently not gluten-free either, and also contained fluoride, yet another supposed--and unproven, cause of autism), and jewelry were one thing. But edible puzzle-piece pretzels? Seriously? Exactly what kind of "awareness" will come from this?

I can only imagine what will be next...

Again, It's NOT The Vaccines

2008-04-18T20:11:00.000-07:00

Kev at Left Brain/Right Brain writes about Pertussis (a very real, very lethal disease). If you visit here, click to listen to what whooping cough sounds like. I'm still scratching my head over those who claim a possibly fatal disease like pertussis, or say measles, is preferable to autism. On Tuesday, a 9 month old baby boy died from pertussis. Here are the risks and complications of this disease:

Pertussis can be a serious illness, particularly for babies and young children. More than 50% of babies with reported cases of pertussis must be hospitalized. Coughing can be so severe that it is hard for babies to eat, drink or breathe.
Babies may bleed behind the eyes and in the brain from coughing.
The most common complication is bacterial pneumonia. About 1 child in 10 with pertussis also gets pneumonia, and about 1 in every 50 will have convulsions.
Brain damage occurs in 1 out of every 250 children who get pertussis.
Pertussis causes about 10-20 deaths each year in the United States

I suggest you re-read those numbers. More than 50% of those infected will be hospitalized, 1 out of every 250 will have brain damage, and 10-20 will die from pertussis. The anti-vax brigade will declare that not that many babies die from pertussis. So, it's no big deal, right? I mean, what's a handful of infants dying anyway? In the year 2000, 17 infants died from pertussis. I can't imagine reading the two case studies--how the babies suffered, and not feeling pain for their families. In Oregon alone, from 2000 to March 2008, 5 babies died of pertussis. Those who claim those fatalities are nothing significant, I suggest they speak to the families of those babies. Perhaps they should ask them if it was a big deal or not.

From Medical News Today:

"While pertussis cases in all age groups have been rising, it is important to know how the disease is spread, particularly to infants who are too young to be vaccinated themselves, so that steps can be taken to prevent infections in these vulnerable infants and potentially save lives," said Annelies Van Rie, M.D., assistant professor of epidemiology in the UNC School of Public Health. "It is troubling to learn that infants are often infected with pertussis by their own family members, who are often unaware of having pertussis themselves."

Herd immunity is important to us all. You will read claims that the concept of "herd immunity" is all a sham. People will explain that since there are states with lower percentages of vaccinated populations, and there is no widespread outbreak of disease, that herd immunity is not legit. What they fail to realize is that with each parent who opts to not get their child vaccinated, those percentages dip further and further. We are on the brink of a tipping point. It's no wonder just in the last year, we've seen outbreaks of measles in Milwaukee (just this past week, reports are ongoing), San Diego, Pima County, Arizona, elsewhere, and pertussis in Mississippi, South Carolina, Colorado, Pennsylvania, Wisconsin, and Ohio. This is only a sneak peek of what will come, should the numbers of children not getting vaccinated continue to rise.

If you're unsure what the diseases that can be prevented by vaccines look like, have a look:

Make an on-line slide show at www.OneTrueMedia.com

**I commend actress Keri Russell for doing her part to get the word out on pertussis.

The Absurdity Continues...

2008-04-18T19:29:00.000-07:00

Another ridiculous "subpoena" (in quotes, because they are not the subpoenas most of us would think of, these are an abuse of the legal system) has been handed down. Kathleen Seidel from Neurodiversity.com writes today about a Dr. Marie McCormick. She too has received a subpoena courtesy of Clifford Shoemaker. The only question I have, is when will this utter absurdity will end?

From the neurodiversity weblog:

Yesterday I learned that on March 26, 2008 — the same afternoon that I was greeted at my doorstep with a demand for access to virtually the entire documentary record of my intellectual and financial life over the past four years — Dr. Marie McCormick, Sumner and Esther Feldberg Professor of Maternal and Child Health at the Harvard School of Public Health, and Professor of Pediatrics at Harvard Medical School, was subjected to a similar experience at her Massachusetts home.

Kathleen titles her piece "In Distinguished Company." I couldn't agree more. I want Dr. McCormick to know that there are many of us standing behind her, just as we do Kathleen Seidel.

FDA, Prozac, & Children with Autism

2008-04-18T08:58:00.000-07:00

The FDA has granted "Fast Track" designation for a new orally disintegrating tablet of fluoxetine (Prozac), for use in children with autism.

4/10/08: PRESS RELEASE

Neuropharm Group plc (AIM: NPH), a speciality pharmaceutical company focused on neurodevelopmental disorders, is pleased to announce that the US Food and Drug Administration (FDA) has granted Fast Track designation for Neuropharm’s program to develop NPL-2008 in the treatment of Autism Disorder.

NPL-2008, a new orally disintegrating tablet of low-dose fluoxetine, is currently in Phase III development for the treatment of the core symptom of repetitive behaviours in patients five years of age or older with Autistic Disorder.

On its website, www.fda.gov, FDA states: “Because fast track products are intended to treat serious or life-threatening conditions and must demonstrate the potential to address unmet medical needs for such conditions, an NDA for a product in a fast track development program ordinarily will be eligible for priority review and FDA may consider for review, portions of a marketing application before the complete NDA is submitted. Fast Track is intended to facilitate development and expedite review of drugs to treat serious and life-threatening conditions so that an approved product can reach the market expeditiously.”

The NPL-2008 program received Orphan Drug Designation from FDA in 1999, giving the product the potential for seven years of market exclusivity on receipt of regulatory approval. In addition the FDA Office of Orphan Drug funded a clinical study in children and adolescents at Mount Sinai School of Medicine in New York followed by a second study in adults.

Neuropharm’s current Phase lll study (SOFIA) underwent Special Protocol Assessment by FDA in 2007. The study is currently ongoing at 17 sites in the US in collaboration with Autism Speaks, the US advocacy organization, and its Clinical Trials Network of expert investigators. The results from this randomised, double-blind trial in more than 120 child and adolescent patients with Autistic Disorder will form part of the NPL-2008 New Drug Application, which is targeted for submission to FDA in Q4 2008.

Robert Mansfield, Neuropharm’s CEO, commented: “We are delighted to announce that FDA has granted Fast Track designation for our program. The point was made earlier this month on World Autism Awareness Day that more children will be diagnosed with autism this year than with diabetes, cancer and AIDS combined. Fast Track designation emphasises the importance we believe should be accorded to this condition.”

This trial will be the first under Autism Speaks' Clinical Trials Network (CTN):

SOFIA is the first industry-sponsored trial for Autism Speaks' Clinical Trials Network (CTN), and will include over 120 children and adolescents with autism enrolled across the U.S. at participating CTN sites. The study is evaluating the efficacy of Neuropharm's new melt-in-the-mouth formulation for the treatment of repetitive behaviors in autism. This study will be a crucial part of an application to receive an autism indication for this formulation of fluoxetine.

I have no doubt that for those parents whose children are presently taking Prozac or who are currently considering it, such a trial will be a relief. With the majority of medications, trials are typically done on adults. The effects of the drugs on those under 18 are often unknown (and, especially unknown when it comes to individuals with autism). Bad reactions in the pediatric community only come to light once a serious side-effect has occurred.

Prozac was approved for pediatric use in 2003 and is generally well-tolerated. A trial focused on a pediatric autistic population (for both efficacy and side-effects) will benefit many. A dissolving tablet will be much easier for children to tolerate, as well.

Mito-Autism Study

2008-04-17T19:42:00.000-07:00

Okay, I'm a couple of days late on this, but seeing as I've written quite a bit on mito, figured I must add it to the list. I've included the parts which I feel have been overlooked by many who have jumped on this study, declaring that MANY autistic children MUST have mito.

Again, the whole fuzzy math thing--read each word and realize when the statistic of 74% and 78% are concluded, that is among 41 children who were SUSPECTED of having mitochondrial disease. These were not just a random sampling of autistic children. These were children who more than likely had other health issues, along with abnormal lab results (which led them to Shoffner and these further studies).

Mitochondrial Dysfunction May Play a Role in Autism Spectrum Disorders Etiology

The statistics many are reading and running with:

Here at the American Academy of Neurology 60th Annual Meeting, a retrospective analysis of 41 children with ASD who were being evaluated for suspected mitochondrial disease showed that 32 (78%) had defects in skeletal muscle oxidative phosphorylation (OXPHOS) enzyme function and 29 of 39 (74%) harbored abnormalities in the OXPHOS proteins.

Again, I can't state it enough: this is NOT a random sample of autistic individuals. These are children who were already suspected of having a mitochondrial disorder.

More:

"Obviously, autism is not a single condition but a true spectrum of disorders. There are many ways in which the genes can go awry, and our hope is that this study will open the door to a greater understanding of at least 1 subset of this patient population with metabolic and enzymologist changes," he said.

I'm curious to see if Dr. Shoffner feels that such changes in genes comes from the parents, or via vaccines, environmental toxins, etc. as Dr. Poling & Kirby promote. His point of autism being "a true spectrum of disorders," and that this is only "1 subset" of patients, would lead one to believe he is not ruling out genetic factors (ala Jenny, who seems to feel there are zero genetic causes for autism). So, again, for the anti-vax group, this is not a definitive finding in their favor. Not by a long shot.

However, he added, further research in unselected populations of autistic patients is needed to confirm these findings.

Exactly.

Lisa Jo Rudy makes some great points on the significance, if any, of this study.

More Autism Awareness (a film, a study, and a press release)

2008-04-17T07:34:00.000-07:00

I came across these 3 interesting pieces the other day (none of which have anything to do with robots). One is about a new film premiering tonight, the second is about a new study, and the third highlights the 'other' autism awareness (you know, the one that actually tries to help autistic individuals and their families, not the "vaccine awareness" or "Autism is the worst thing that can happen to a family" or other campaigns touted as 'autism awareness' these days).

"Autism Yesterday"

The film "Autism Yesterday" (yes, obviously a shot at Autism Speaks' "Autism Everyday") will premiere tonight at The Holland Center in Minnesota. It is a Generation Rescue documentary, which "explores an emerging truth many parents are discovering: autism is a reversible condition..." The film features five families, chronicling "heart-wrenching stories of despair, hope, and recovery." You can watch the trailer here, and decide for yourself. You can read the complete article on www.bio-medicine.org.

Autism Diagnosis 15-20 Years Ago...

More support, it appears, for the theory that autism cases are not necessarily on the rise over the last 15-20 years, but rather physicians are better trained to diagnose, more services are available to identify those children, and that how the diagnosis protocol has changed. Professor Dorothy Bishop, a fellow at the University of Oxford, has completed a study worth looking into. It suggests that children in the 1980's and 1990's who were diagnosed with severe language disorders would be diagnosed as autistic today.

"We can't say that genuine cases of autism are not on the increase as the numbers in our study are very small," she says. "However, this is the only study to date where direct evidence has been found of people who would have had a different diagnosis today than they were given fifteen or twenty years ago."

You can find the article and more information on the study here.

Awareness on World Autism Day from Easter Seals.

Regrettably, I missed this on World Autism Day. It is the only press release by any major organization highlighting the need for adult services. Easter Seals has their own autism website, on there is a section entitled, "Stories of Hope." It's nice to see a charity showing adult autistics being successful and also thriving families who support their children.

In the event you missed it too, here are some snippets from their press release (full release is linked in the title above):

“World Autism Awareness Day provides us with an opportunity to help raise awareness about autism services and treatments available to families today and the need for the United States to share what it knows about effective interventions with other countries around the globe,” says James E. Williams, Jr., president and chief executive officer, Easter Seals. “There are a number of wonderful organizations researching and seeking a cause and cure for autism. Easter Seals is unique as the nation’s leading provider of services and support for children and adults living with autism.

Critical Need for Services
Every family living with a person who has autism faces unique challenges. Early detection and intervention are the essential first steps.

“There is an urgent need for increased funding and services -- especially for adults with autism,” adds Williams. “We want to help change all of this and make a difference for families living with autism today.”

Finally. Thank you.

Autism Is Treatable
While autism is a baffling, lifelong disability, it is treatable.

“People living with autism -- at any age -- are capable of making significant progress through personalized interventions and therapy; and, can and do lead meaningful lives,” says Patricia Wright, director, autism services, Easter Seals.

Treatable doesn't always mean injections, chelation, and HBOT sessions. I think they are utilizing this term, simply because that is what people want to hear (treat my child, fix them) and it is more marketable (look who they are up against for raising money, Autism Speaks, TACA, etc.). I like the point Patricia Wright makes, about how at any age, autistic individuals can make progress. So many parents see their child as an hourglass, with time running out to help them. You wouldn't believe how panicked parents are when their child is a toddler or preschooler ("if he doesn't do X by 5 years, he'll never do it," or "I'm afraid I missed all this important time, since T didn't get a diagnosis until she was 4" and so on). It's a great point, and also that Ms. Wright adds "and, can and do lead meaningful lives." Bravo.

Easter Seals + Autism
More than a generation ago, Easter Seals was front and center during the polio epidemic, working tirelessly to help children and adults with polio gain the skills necessary to live independently. And now, Easter Seals is working nationally to provide help, hope and answers to families living with autism today by delivering personalized services and treatments, as well as advocating in Washington DC to encourage Congress to finance research to improve services and supports for people with autism.

I can easily support an organization wanting Congress to finance research that will improve services and supports for people with autism (especially adults). I realize I won't agree 100% with all their campaigns or messages, but their overlying theme is that of support for autistic individuals, with a focus, most importantly, on adult autistics. What other major organization even mentions "adults" and "autism" in the same sentence? Some spokespeople for these major groups aren't even aware that adult autistics exist. So, I'll find it hard to not support Easter Seals, even if I can't stand behind 100% of their projects or partnerships. The greater good that hopefully will come from Easter Seals' campaign will benefit ALL autistics. One of the bills Easter Seals is working to pass, is the Expanding the Promise for Individuals with Autism Act of 2007.

More Inspiration (from Joshua Eisenstat's family)

2008-04-15T20:33:00.000-07:00

Thank you, to Joshua Eisenstat's mom, Selma, and his Uncle Doug for replying to my blog. I appreciate you sharing more about Joshua.

I had written on April 2 in a post entitled "The Best From Today," about Selma Eisenstat and her message on CNN about her son Joshua. In response to that post, I received two replies that further touched me. Selma herself, along with Joshua's Uncle Doug left messages. I wanted to share them with everyone, so they wouldn't be missed.

Thank you so much for honoring my Joshua on your blog. I happened to run across it today, and was overwhelmed. Joshua lives on in my heart and memory every day; and to have his influence live on the lives of others means more than I can say. I have hundreds of stories and memories that bring peace and joy to my heart. I loved my son with all of my heart, and every day I am thankful that I am Joshua's Mom. Thank you for making my day today.

Selma

And...

I'm Joshua's Uncle Doug. I was privileged to live with Joshua three different times during my life so we were very close and his death was very hard on me and our whole family. Every time I see another person that has special needs, I smile. Yes, I know its hard, but I too also know the joy. I remember one time that Joshua was having a really bad seizure and he kicked his Dad during the seizure and once he was out of it, he hugged him and said sorry.

He had that pure love as they all do. I agree with Selma, the road is hard, but it is so worth it.

Uncle Doug

I was so moved by each of their replies, and of course with the piece from CNN. I transcribed the piece for a fellow blogger who requested it (see original post, in messages section), as an amateur, so my apologies if I got something wrong. The last paragraph, Selma's powerful advice to others, is beautiful. This is something I wish every parent of an autistic child could see:

"When I hear the child being diagnosed with autism or being born with disabilities, I don't ever know if they would understand if I said, 'do you know how lucky you are?' I know it's gonna be a hard road, I know that, um, you're gonna have sleepless nights and you're gonna have many tears, 'cause I've had many tears. But, um, you get, I feel like you get a slice of heaven and a pure love in your home. You learn service and you learn, you just work together. Once you stop seeing what my child can't do, and you start seeing what they can do, it's a beautiful...I wish you could have met him, just cause I could feel your love for him."

Please visit the Joshua Eisenstat blog, for video, pictures, and more thoughts on Joshua's life. It's quite plain to see how very loved Joshua was, and how deeply those who knew him, miss him.

Moved & Inspired

2008-04-10T08:01:00.000-07:00

I watched the ABC special last night on Randy Pausch, a truly amazing human being. I typically don't watch these types of programs, but this one sparked my interest. I am so glad I watched it. To be honest, I don't think I've ever been so inspired by someone on television. I've spoken before on how the different challenges my daughter has faced, has given me tremendous perspective on our daily life, and on autism. Dr. Pausch has a perspective and a view on life, that is very rare (although, he says he's "not unique"). I was so moved by this program, by his lecture, and on this family's life.

I think for anyone dealing with any challenges in life (and that would be the majority of people in this world, I suspect), this is crucial to read or see. A lecture like this, these words of wisdom, really challenges you to look at your life in ways you may not have before. I know that raising an autistic child or a child with disabilities, is not easy. There are sleepless nights, doctors' and therapy appointments, meltdowns, etc. When you hear a man who is dying of pancreatic cancer, telling you he is happy and to not pity him, it really makes you think. I speak of "choosing" to focus on the positive, with my daughter and autism. For Dr. Pausch, that would translate into my being a Tigger versus an Eeyore. I love that!

For more information on pancreatic cancer, please visit the Lustgarten Foundation for Pancreatic Cancer Research. They are giving away 5,000 copies of "The Last Lecture" from 4/9 - 4/11 (as supplies last).

Here is the "Last Lecture," if you missed it:

We've been painting our home the last couple of weeks. After our master bedroom, it's time for the girls' rooms to be painted. We have been talking to them about choosing a color (for the older, it's between a light blue or lavender, for the youngest, it's yellow or red). I had planned on painting a mural or some fun designs on the wall. But, after being so moved last night, I think we will let the girls paint the pictures on their walls, if they want. I promise, Dr. Pausch (and I will post pictures here when they're done).

"If you lead your life the right way, the Karma will take care of itself, the dreams will come to you. And anybody who is out there who's a parent - if your kids want to paint the bedroom - as a favor to me, let them do it. It will be OK. Don't worry about the resale value of the house."

Thank you, to Dr. Pausch and his beautiful family for sharing their life, their story, and his lecture with the world.

MAE: Giggles at the Grocery Store

2008-04-09T17:58:00.000-07:00

So, I really, really, really wanted to write a cute, light post here today. Lucky for me, my daughter presented me with just that today.

We hit the local farmer's market (she does much better here--less crowded, more open space, no loudspeakers, etc.), she was in a great mood. Ya can't ask for more than that! At one point, halfway through our shopping excursion, I brushed some hair off my cheek and felt something odd on my earlobe. I touched it, and then suddenly realized I had those fake stick-on earrings on both my ears! Earlier in the day, my daughter had come up to me and stuck them on my ears. It was such a cute gesture, I left them there...and completely forgot I had them on! I can only imagine what the other shoppers thought (who, by that point, I had come in contact with more than a handful!). One was a light pink heart, the other an orange star--and both were prismatic, and very shiny.

I laughed so hard in the aisle after realizing this. My daughter got upset as I took them off, so I assured her I loved them and would put them on later (thankfully, she forgot!). This tops the day she put Cinderella stickers on each of my nails. The look the drive-thru cashier gave me was priceless when she spotted my 'manicure.'

I can only wonder what the next Mommy Makeover will be...

Giving Credit Where Credit Is Due...

2008-04-09T08:06:00.000-07:00

I can't believe I'd ever be applauding an act by either of these two gentlemen, but alas, here I am. David Kirby and Dan Olmsted don't agree with Kathleen Seidel's subpoena, and apparently have even urged Mr. Shoemaker to drop it. The two clearly support Ms. Seidel's First Amendment Rights, and I applaud them for coming forward and speaking out. You can read their entire reply on Respectful Insolence, following Orac's Open Letter to David Kirby and Dan Olmsted.

Left Brain/Right Brain and Natural Variation have posts on this as well.

Can We Agree On This: Your Child Does NOT Have Autism?

2008-04-09T00:24:00.000-07:00

So, I've been milling over this for a few weeks now. I realize some of my friends may disagree with me on it. I wonder if we are able to get past this hurdle, that perhaps those who are working for adult services can move forward, with real change?

Can we agree that perhaps, there are forms of autism--or perhaps something completely else (not autism, but rather vaccine encephalopathy or something like that?), that are either caused by or worsened by vaccines? Perhaps there are a very small number of children who have something going on with their mitochondria or their immune system, and it makes them susceptible to autistic-like features post-vaccine (or illness, allergen exposure, etc.). For those whose doctors can prove their child is such a case, step aside. I am not for the rebranding of autism ala Kirby, but for cases like these, I say call what your child has something other than autism.

Step aside, stand on a soapbox with a name other than autism. I realize you parents are passionate about your children, and about how you feel your child "became" autistic. But, what you may not realize, is that all the time you are in the media, writing, and visiting message boards spreading stories of so-called recovery and cures for autism, you are taking away from our message. Those of us who have either tried biomed treatments and had no success, those of us who have been tested for and found a proven genetic link, and those of us who feel strongly our child was born autistic--we are fighting for rights and services for our children when they become adults and for the many adult autistics living in the world today.

Every time someone goes on television or writes an article, telling the world that autism is reversible, or that an autistic child can be recovered, you are telling the world that there is no need for adult programs. If the message is that autism can be "cured," then why would anyone want to support or create services for adult autistics? if we can make a distinction between what your child has (not autism) and what my child has (autism), we can all move along further toward our (very different) goals.

Ethically, I have many disagreements with how autistics are often referred to by those who are adamant about recovery. I am saddened that so many parents have great difficulty seeing the gifts that their children are, and I also fear that such beliefs can pull some over the edge. But, for the sake of my child's future and for the benefit of adult autistics, I would be willing to overlook this for now. Allow us to make real change for our children--those who won't recover, and who will need some type of support throughout their adult years.

I am so tired of trying to fight the massive media attacks on vaccines, the profiles of those who have "successfully recovered" their children, and all the viciousness I feel from those who disagree with me. I want to blog and discuss all areas related to autism. However, lately it is those who are attempting to rebrand autism and find blame that are consuming the autism world. I'd love to move past this. Changing the diagnosis is the only way I can think of to make progress.

This is what I wrote when I was feeling much more stressed (& and frustrated, among other emotions) the other day:

TO THOSE WHO FEEL THEIR CHILD'S "AUTISM" WAS CAUSED BY MERCURY, VACCINES, ENVIRONMENTAL TRIGGERS, AND SO ON:
CAN YOU START CALLING YOUR CHILD'S CONDITION MITO DYSFUNCTION OR VACCINE INJURY OR SOMETHING OTHER THAN AUTISM? THEN YOU CAN PACK YOUR BAGS AND LEAVE THE ISLAND. MY CHILD HAS AUTISM, NOT FROM VACCINES OR ANY OTHER ENVIRONMENTAL FACTOR. PERHAPS ONE DAY, IT WILL BE PROVEN THAT SOME CHILDREN HAVE AUTISTIC-LIKE FEATURES OR SYMPTOMS BECAUSE OF ALLERGIES OR SOMETHING ELSE. FINE. GET YOUR DAN TREATMENT AND 'HEAL' YOUR CHILD. BUT, DO NOT SPEAK FOR ME OR MY CHILD. DO NOT POUR MILLIONS OF DOLLARS INTO THIS VACCINE FAR-FETCHED THEORY. YOU ARE NOT HELPING US. YOU ARE NOT DOING ANYTHING FOR MY CHILD. WHEN MY CHILD BECOMES AN ADULT, YOU WILL HAVE DONE NOTHING TO HELP HER. YOU WILL NOT HAVE CREATED ANY NEW PROGRAMS OR SERVICES FOR ADULT AUTISTICS. MY CHILD WAS NOT HIT BY A BUS, SHE WAS NEVER MOWED OVER. SHE WAS BORN WITH AUTISM. SHE IS DOING WONDERFUL, AND I LOVE HER MORE THAN WORDS COULD EXPRESS. I NEED ASSURANCE THAT THE FUTURE WILL BE A HOPEFUL ONE. I WANT OPTIONS FOR HER, AND I WANT SOCIETY TO RESPECT HER AND SEE HOW TRULY AMAZING SHE IS. YOU DO NOT SPEAK FOR ME, I AM NOT PART OF THE SO-CALLED AUTISM COMMUNITY YOU CLAIM TO BE REPRESENTING. GO FIGHT YOUR FIGHT, BUT DO NOT CLAIM IT AS MY BATTLE TOO.

I Am Also Kathleen

2008-04-07T12:06:00.000-07:00

I haven't had the proper amount of time needed to truly digest the subpoena of Kathleen Seidel at Neurodiversity.com. Many others have written incredibly about it, and I have linked to them below. What I have been able to conclude about the subpoena, is that some people enjoy wasting paper, and worse, wasting the time of free citizens as well as judges. I have the utmost respect for what our founding fathers fought for--our freedoms, and I hold them dearly. I detest frivolous lawsuits, and I can now add ridiculous subpoenas (Kathleen is NOT being sued) in addition to that. Aside from seeking to silence and intimidate Kathleen (along with the long list of Autism Hubbers mentioned in paragraph #5), this subpoena also attempts to threaten her freedom of religion.

This subpoena is so far-fetched and has utter disregard to an American citizen's rights (freedom of speech, freedom of religion, to name two!), and is truly a fishing expedition, that at first glance one would assume it was a joke. Sadly, it is not a joke. Kathleen is having to take time out of her life, time better spent with family, friends, a hobby--whatever she chooses. She is forced to respond to the subpoena, and then wait to see what comes of it. There is a possibility she could incur major expenses as a result of this subpoena. This is very real, and the requests that Mr. Shoemaker makes are very absurd. I often felt that at least some on the DAN! side of things had a touch of conspiracy theorist in them. One needs only glance at a biomed message board to pick up on that. Lately, it becomes more obvious that the vast majority of them do, and it's not just a touch. So many appear to be full-fledged conspiracy theorists, having zero trust in any government agency or pharmaceutical company. They freely (without subpoenas) author blogs, books, and articles in newspapers and magazines. They are seen on various talk shows to speak on this distrust, promote their beliefs, speak out against vaccines, and increasingly appear in mainstream media's news coverage.

Somehow, they've connected the dots, and decided that we on the Autism Hub are all covert agents of the government, pharmaceutical companies, et al. They so hate that we are speaking out, that our children are thriving, and that we are finding joy in our life (autism and all!). They don't understand us parents, our autistic children, or the many autistic adults who are blogging. I imagine it is mostly fear over the dollars they are not getting from parents like me who have never been to a DAN! doctor. When we speak out, they may fear, perhaps others will follow suit, and that means dollars lost to the biomed industry. I can't think of any other reason for the complete paranoia they have over the Autism Hub, other than money. Especially when you consider that none of us have had the press (see above) that David Kirby, Jenny McCarthy, the Polings, and others have had. The one thing I keep wondering about is this: if they really are making such progress, in proving that the CDC is pure evil and vaccines are giving all our kids autism, then why the need for a subpoena like this? If "the tide is turning," then why are they all still so indignant, irrational, and suspicious?

Here's some wonderful writings I came across.

I took the "I Am Kathleen" from Stranger Than You Can Imagine. I think it's brilliant.

Orac has An open letter David Kirby and Dan Olmsted about the Kathleen Seidel subpoena, which I too would like to see Kirby & Olmsted's response. But, I won't hold my breath...

The Voyage has it ALL covered, nearly all the blogs that are talking about this are listed here.

What Is Autism Awareness?

2008-04-06T20:04:00.000-07:00

I wonder this, seeing as we are now about a week into "Autism Awareness Month," and a couple of days following "World Autism Day." How will such awareness affect my child, and other autistic children and adults throughout the world? Will new support services, better educational and vocational programs, beneficial extracurricular activities or anything else of real benefit come to this population of individuals? Will a day of special programming on CNN, fund-raisers at Toys R Us, etc. truly educate the public and make others "aware" of autism (and more importantly of autistic adults and their needs)? Will other parents be more understanding when my child has a meltdown in the grocery store? Will children be more likely to engage with their autistic peer? Will anyone gain anything from all this supposed awareness?

AutismVox has a wonderful post entitled, "Vaccine Awareness from David Kirby," in which Dr. Kristina Chew ends with this:

If we’re going to be “aware” of autism, it’s not vaccines that should be focused on, but on autistic children and autistic adults themselves and their needs, and how we can best teach, help, and understand them.

I couldn't agree more.

In Kirby's piece, he speaks out against the CDC, as well as pediatricians in general. Blaming your physician for giving your child vaccines is like blaming the McDonald's cashier for your being overweight. You have the right to educate yourself on the fat content in a Big Mac, just as you have the free right to investigate vaccines. You can easily opt to not go to the drive-thru, just as you have the right to discuss your concerns over vaccines with your physician. You have the right to opt for your own "vaccine schedule." If your child's doctor disagrees, or will not support your preference, simply switch doctors. I've had to switch doctors once for my daughter. Her first G.I. doctor was just not clicking with us, I felt like he wasn't hearing us out and preferred a lot of invasive testing over more obvious issues. So, we switched, and found a fabulous stomach doc for my daughter. It was my right.

Our pediatrician is nothing like those that Kirby says have emailed him, irate over having to take more time to discuss vaccines with their parents. I remember very clearly, my daughter's 18 month well-visit. At that point, my daughter had been diagnosed as "developmentally delayed" for a year, she had been in therapy for nearly that long as well. By 18 months, she had several diagnoses, both neurological and physical, as well as the description of "autistic features." I had read tons of information on autism by that point.

Once the exam was done, we had our questions and concerns discussion with our doctor. Then, came shot time. My physician presented me with a choice, "Do you want to go ahead and have her receive the MMR shot today? I'm going to give you a choice, given all that is going on. I feel she should receive it, but it is up to you." I told her I had read about shots, autism, etc. and felt that for my child, receiving measles would be a real risk. Maybe I am a rare case, and just lucky to have a fabulous doctor. There's a reason why we drive nearly 40 minutes for her. The bottom line is that we do have the option of picking new doctors, of driving distances to find people we trust to care for our children.

There are plenty of physicians who do not bully their patients' parents into getting vaccines. And, ultimately, it is our responsibility as a parent to do what we feel is best for our children. And, how we come to that position, of what we feel is right for our kids, should come from factual, scientific evidence. We shouldn't be basing our decision on vaccinating our children on a journalist's or actor's point of view.

A Measles Primer For Jenny

2008-04-02T23:33:00.000-07:00

"Give my son the measles. I'll take that way over autism any day."

"In a heartbeat," she adds later on.

Perhaps Jenny hasn't used her Google PhD to look up measles yet. Maybe she could ask her own pediatrician, Dr. Jay Gordon. On his own website, you'll find this:

Measles still causes a million deaths worldwide even though a very effective measles vaccination program in the United States has just given us our third year in a row with fewer than 100 cases of measles in our country.

Has Jenny ever read about measles in developing countries? This blog, Nigeria Health Watch, discusses another outbreak there in December 2007. The author asks, "How many children will have to die from measles in Nigeria?" After reading that entry, Jenny may want to visit KidsHealth where she can read this information:

A child who is diagnosed with measles should be closely monitor for fever and other symptoms to detect any complications. In some cases, measles can lead to other health problems, such as croup, and infections like bronchitis, bronchiolitis, pneumonia, conjunctivitis (pinkeye), myocarditis, and encephalitis. Measles also can make the body more susceptible to ear infections or other health problems caused by bacteria.

My child is prone to croup and bronchitis, she has been hospitalized for RSV, and for a bacterial infection called pseudomonas (which she caught during a hospitalization for surgery). I can't imagine ever saying I'd prefer measles, or pseudomonas, to autism.

Further information on measles, and the importance of vaccines, Jenny may want to visit the World Health Organization (WHO). WHO offers some startling facts:

Measles remains a leading cause of death among young children, despite the availability of a safe and effective vaccine for the past 40 years.
In 2006, it was estimated that there were 242 000 measles deaths globally: this translates to about 663 deaths every day or 27 deaths every hour.
Vaccination has had a major impact on measles deaths. Overall, global measles mortality decreased by 68% between 2000 and 2006. The largest gains occurred in Africa where measles cases and deaths fell by 91%.

Some people need images, to let it all sink in. Here is what a "measles eye" looks like. And there's these pictures too:

I hope many will come forward and speak out against Ms. McCarthy, and this outrageous statement she made. I also wish Jenny would study up on measles, and realize how ridiculous she is to ask her son be given measles, any day, over autism. It is ignorant, and even offensive (to those who have suffered and died from measles, to the 27 mothers who every hour lose their child to this disease, and to autistics who are here, alive on this earth).

Stop. Think. Autism.

Happy New Year! (Yes...I am still here...)

Remembering Katie...

A Savage Side Note

Savage Ignorance

On Vacation...

Attention Autistics & Fellow Family Members: ABC Wants To Hear From Us Again

Gabriel Poirier - We Cannot Forget

Where Is All The Autism Awareness?

Here We Go Again: Autistic Boy Kicked Off Of Flight

Jennifer Lopez Sings for Autistic Students (Video Clip)

Another Senseless Tragedy...

End Abuse of Children in Residential Programs: ACT TODAY!

Jennifer Lopez Sings For Autistic Students

High Functioning? Then Shut Up!

Days of Our Lives, With Autism

Warning: This Is Nothing To Laugh At

Today Autism & Recovery, Tomorrow Crystals & the New Earth

Kryon On Vaccines

Indigo Mom's Insights?

Autism Acceptance: The Indigo & Crystal Way?

The Indigo and The Crystal

Indigo and Crystal Children

IndigoIndigo children usher in a new energy that is transforming the planet around us. They are groundbreakers, creative rebels and independent thinkers, people who will go their own route and leave people and things around them changed.

CrystalCrystals instinctively channel healing energy. Their crystal nature enables them to pick up energy and aura colors from the people around them. They are acutely sensitive and are even more likely to become healers and lightworkers than indigos, but need space to themselves and a lot of care.

Accomodations vs. Exclusion

Their own day at the movies...

End Abuse of Children in Residential Programs: ACT TODAY!

Grassroots Action Needed for Approaching Vote

Please Act Today!

Autistic and Proud

TUNE IN!

Inclusion

Is Jenny Really An Autism Mom--and Why Should We Care?

Is Jenny Really An Autism Mom? (Part 3)

Is Jenny Really An Autism Mom? (Part 2)

Is Jenny Really An Autism Mom? (Part 1)

Whooping Cough, Again...

Jenny McCarthy: On The Record

FYI: Jenny On Fox Tomorrow Night

The Autism Whisperer Cometh

Neurodiversity on Good Morning America?

Do Vaccines Cause That?

Maybe It IS Easy To Be Green?

The Whole Green Mess...

Is it autism--or isn't it??

Society's Sad State

Response to Comments: Alex Barton & Inclusion

"I'm Not Special"

If you read nothing else today...

Jenny's New Book

Ramblings this week...

The Question That Led To Many Questions...

Mother's Day

Kids' Autism Awareness

April Is Over...

On Disablism

Too Many Masters of Illusions...

Questions for David Kirby

Is It Fever? Mercury? Thimerosal?

More Mito Docs Speak...

Doctors & Scents

NASCAR & Autism Speaks: Maybe Some Potential Here

What Is Going On In Virginia???

An Action Plan Worth Noting (& Learning From)...

Earth Day 2008

Autism and Politics

ADHD Meds & Your Child's Heart

Subpoena: QUASHED!

Edible Awareness???

Again, It's NOT The Vaccines

The Absurdity Continues...

FDA, Prozac, & Children with Autism

Mito-Autism Study

More Autism Awareness (a film, a study, and a press release)

More Inspiration (from Joshua Eisenstat's family)

Moved & Inspired

MAE: Giggles at the Grocery Store

Giving Credit Where Credit Is Due...

Can We Agree On This: Your Child Does NOT Have Autism?

Indigo
Indigo children usher in a new energy that is transforming the planet around us. They are groundbreakers, creative rebels and independent thinkers, people who will go their own route and leave people and things around them changed.