STOP FOR A MOMENT. TAKE A DEEP BREATH & EXHALE. IT'S AUTISM--NOT THE END OF THE WORLD.
Having an autistic child is not the end of the world--far from it. It is my hope that through this blog, at least a handful of people will get to understand that. My child is amazing, she brings us tremendous joy. We have good days & bad days, but we CHOOSE to focus on the good. Our belief is that by loving our daughter, giving her the most comfortable environment we can, and by most of all accepting her differences, she will continue to blossom--in her OWN way.
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.
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.
"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.
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.
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.
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:
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.
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!
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.
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?
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?
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.
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.
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?
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...
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.
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.
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.
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?
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."
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.
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.
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?
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.
"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."
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 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.
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."
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.
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."
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.
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.
"Autism is a way of being. It is pervasive; it colors every experience, every sensation, perception, thought, emotion, and encounter, every aspect of existence. It is not possible to separate the autism from the person."
- Jim Sinclair
The views & opinions expressed on this blog are just that: views and opinions of the author. I do not, nor have I ever, worked for a drug company or the government. I am not part of any vast conspiracy. I do not receive any income from this blog, I do not have any income whatsoever. I am simply passionate about my child and her future, and about the rights legally afforded to autistic individuals.
This Way of Life
"Autism is a way of being. It is pervasive; it colors every experience, every sensation, perception, thought, emotion, and encounter, every aspect of existence. It is not possible to separate the autism from the person."
- Jim Sinclair
