Autism Everyday: Exploitations & Misconceptions (Part I)

If you've ever read my blog, you probably know I'm not a big fan of Autism Speaks. But, in case you don't know, I take issue with the "Autism Everyday" video.

It disgusts me the way the children in this video are exploited. I am sick at how careless the filmmakers were and the message this video sends out. I've written previously about Alison Tepper Singer and how she was applauded for her bravery when she admits to contemplating killing her autistic child. That is by far my biggest grievance with the film. Here are some more...

The way the parents force their children to hug or kiss them. The effect of despair that comes from parents repeatedly saying "I love you" and not getting a response. It all comes off as very gut-wrenching. How bewildering it must be to be a parent to an autistic child, and never feel your love reciprocated. Guess what? My daughter can be very affectionate, at times and on her own terms. If a film crew, strangers with strange equipment were in our home, I highly doubt she'd feel much like hugging or kissing me. There is a chance she would cling to me for dear life; but I highly doubt we'd see the sweet and charming child I know her to be, in the calm safety of her home. No, with strangers here, following her every movement, she would have meltdown after meltdown, run and try to hide anywhere, it would be a nightmare for her.

I do not and will not ever force my child to hug or kiss me. For quite some time, the closest we would get to a hug, was an arm that would quickly wrap around our leg and then let go. That later turned into a brief half-hug near our back if we were sitting down. And now, we get full-fledged bear hugs! She will come up to us and squeeze us with all the love in the world! We are careful to ask her if we can get a hug, before we approach her. I am aware of her delicate sensory system. A hug at a certain time, and if she is unprepared for it, may not feel good to her.

Kisses often aren't something my child enjoys. You know what though? I can name you several alternatives to kisses, and they are all just as wonderful. We sometimes touch foreheads, chins, or noses to each other's. Recently, we've discovered our daughter is okay with "lipless" kisses. We press our lips against her cheek or forehead, and she smiles. She now says "no sound!" when she wants this type of kiss. If I forced her to hug on demand or kiss her with my lips puckered, she would pull away. What good would that do?

The majority of times that we say "I love you" to our daughter, we do not get a response. I've yet to cry over this. I won't ever cry over this. I realize that a lot of times, my daughter really doesn't hear us, especially if she is enthralled in an activity, television, etc. So, why would I get upset and take it personally? There's no reason, unless I wanted other parents, people with fat wallets, to feel bad for me and donate to my charity. Another discovery we made was that our daughter likes to sign "I love you." Even though she is verbal, and capable of uttering the words, "I love you," she prefers to sign it. It's a beautiful sight. I'll never demand she answer me when I say "I love you," nor will I want sympathy from others if she doesn't reply.

If these parents would simply throw out the criteria they have for what a sign of love is, be it a hug, kiss, or verbalization, they'd pity themselves much less. They need to quit taking it all so personally. Find alternatives. Meet your child somewhere in the middle, where he or she is comfortable. Doors will open, and I promise you, the new ways you discover to express love, will be even better than the "old" standbys.

My Little Fighter

When I first viewed the video I posted in the previous entry, it brought back so many memories of my daughter's infancy. I thought of how she never made eye-contact, something that actually troubled me when I would nurse her. She startled at every little thing, yet appeared deaf at other times. Dancing, making silly faces or noises, even clapping in front of her, and she would still have a blank stare. She held her body in odd postures. I had to remind myself not to take any of it personally. It sounds silly to say that, but no matter how level-minded one is, when your own baby doesn't respond to you, it can be heartbreaking. Most days, my daughter would prefer to sit in a swing, car seat, anywhere but in someone's arms. But, we continued to hold her and try out new ways that she felt more ease. We realized what she liked--swaddling. We swaddled her until 9-10 months old. I also discovered she preferred being held in a sling, instead of someone's arms. She also liked motion, I'd rock her, hold her while gently bouncing on an exercise ball, etc.

By around 8 months of age, I donated my "What To Expect The First Year" book as by then I could relate to very little of it. We watched our child, month after month, struggling to meet any of the usual milestones. So often, she seemed to be in her own world. All of those experiences, have made every gain that much more amazing. I remember how difficult it was for our daughter to roll over. She has what is now thought to be considered a typical "autism" roll. Every movement took so much out of her, so much effort. I remember her trying to crawl. For months on end, she would squirm a little while on her stomach and then just lay there. And then, one day, the squirming transformed into an army crawl meets fish flopping style movement. And with each day, she would move further and further. It took so much out of her, but day after day, she'd try again and again. She's been a fighter like this in every area of her life.

It honestly breaks my heart a little when I think about it. No child, no baby should have to work so hard and struggle so much for even the littlest of gains. I will never take any of my child's milestones for granted. When I think of how far she has come, and how from the moment she was brought into this world, she's had to fight, I know that forcing her into a certain mold (to be like everyone else), is simply not right. It would not be fair to put those expectations on her. That, over time, has come to me. I have accepted this completely. I no longer look to the charts as to what she should be doing or make comparisons. Sure, when I see NT children her age, the differences are evident, and my heart may pang for a second or so. That is natural, and I've learned to just feel that emotion and move on. That's simply the way it is.

Others will not be so fair or understanding toward my child. I do not know what she will be like at 15 or 25 or any age down the road. No one can say for sure what her abilities will be, what challenges or issues she will face, how independent she will be, etc. We will help her every step of the way, and feel strongly that if we advocate for her, she will be able to make a wonderful life for herself. But, I do realize there will be opposition. Other people will not be so accepting of her differences. We will work every day to hopefully change society's distorted view of autistics.

Christschool Video: Autism at 10 Weeks of Age

Another Great Video From Christschool...

I wanted to share this video, mostly for what is written in it. I agree wholeheartedly with what Christschool says here. His son is so adorable, and so it's also a sweet video to watch. I too am of the belief that autistic 3 year olds were also autistic 18 months olds, autistic 2 months olds, and autistic in the womb. At least, I should say, I feel 100% that my daughter has been autistic from the moment she was conceived. Every autistic individual has their own journey, their own traits. As a whole, scientists and doctors have summarized many common features that are a part of most autistics. But, it's important to remember, each person will have their very own unique experience. I do feel that a lot of regressions are simply autistic traits becoming more evident to parents.

At any rate, almost everything, from pregnancy to delivery and onward, with our second child was completely different than our first. I was extremely nauseas, lost weight until I was 5 months along with my second pregnancy. My youngest daughter moved, often erratically, in the womb. I even joked with my husband that she would pull an "Alien" (the movie) on us & pop out of my stomach. She was delivered, blue and not crying. She had issues from day one, some birth defects, many digestive issues, and developmental delays evident by 6 months of age. Had she not have the cumulative amount of issues, or the severity of each was less, perhaps doctors nor us parents would have been concerned until she was closer to 3 years of age. Certainly, had I not had my first child to gage various milestones, I would have been far less worried about my second.

I think this is something all parents must really understand and think about. I also like the comparison Christschool makes with this "phenomena" to that of eyewitnesses. I studied eyewitness testimonies in school, your mind tends to compensate and "make-up" details, often subconsciously. I think this happens a lot, unintentionally, with parents of autistic children. Despite everything going on with my daughter from Day One, I was very skeptical of an autism diagnosis. I remember during her evaluation, I told my husband that I thought she was making so much progress and doing so great, there's no way she'd get a diagnosis. He looked at me in such surprise, he even laughed. We had a long discussion, and I realized I was sugar-coating my daily reality with my child. Partly, the meltdowns, mood swings, and other behaviors were becoming typical, despite them being very atypical. The other part, was all the love I have for my child. It felt at times that speaking about all the negative things we were dealing with, was complaining about her or degrading her. I had to understand that we were discussing these things to help her. It was not a whine-fest or pity party, I had to look at this in a concrete manner. I almost had to remove myself from my emotions, and view what was going on in my child's life more as an outsider. I viewed several videos of my other child at that age. These perspectives, and my husband's reassurance, helped me greatly. I can understand how parents can unknowingly tweak their child's history, remember things inaccurately.

I think if parents can realize or admit that their child's autism is a part of them, not something separate, they will learn to accept their child, all of their child. Hopefully, they will then focus on ways of helping and accommodating their child, supporting them, and preparing for their child's future--with autism. Instead of pouring all their money into fake cures and dehumanizing treatments in hopes of getting rid of their child's autism, they may focus their attention on their child's life, and making the most of each day (again, autism and all!).

A Letter Worth Learning From...

Must be the day, I seem to keep coming across worthwhile stuff, from parents:

This is a great letter, from a parent to her autistic daughter's kindergarten teacher. It's helpful for other parents, full of ideas on how to help a child through their school day. It is inspiring because you can tell this mom cares about & believes in her child, and is willing to offer any help and support for her child. These are easy accommodations, and I think the general public could stand to learn a bit from this type of letter as well.

"Celebrating Autism" Article

"Celebrating Autism" article on Gather.com

I found this today & wanted to share. I LOVE when I come upon more parents who are celebrating their children. Also, great to hear some of the comments people left. It really gives me hope and it's great to see OUR word getting out. FINALLY!

If There Were A Cure...IAN Poll

IAN POLL

IAN (Interactive Autism Network) recently put a poll on its website. As of the minute I write this post, here are the results:

Adults with ASD: If there were a cure, would you take it?
(total votes: 255)

Yes
8%
No
81%
I'd wait and see what happened to others
5%
Don't know
4%

Is it really shocking to any of us? Well, at least to any of us who ever spend anytime with adult autistics? And, once again, yes Jenny & Larry, they do exist! I've yet to meet an adult autistic who says they'd jump at the chance to be cured. The overriding thought is without autism, who am I? Autism is a deep-rooted part of an autistic, just as brown eyes are to me. Yes, they say, living with autism can be very difficult. But, along with the difficulties come great gifts. All of the adult autistics I know fear that if a cure existed, what would be lost along with the negative aspects of Autism? Who would they be?

I think all parents need to remember that. I think parents damage their children's self-esteem and self-worth when they speak of curing their child or ridding them of autism. I fear to think of what a child must feel when their parent constantly refers to autism about the evil thing, how much they hate it, how it really is an ass-kicking. Unfortunately, most of those same parents feel their child is lost, has been kidnapped, is without a soul, etc. They feel their "damaged" child is incapable of having feelings, either for themselves or others. If their child is nonverbal, they typically think he or she is closer to a zombie than a human being. So, how do we ever get through to these people? I do not know, but I hope I find the answer one day.

These same people will look at a poll like this, and completely disregard the results. They'll come up with some type of crazy conspiracy of who completed the poll and why it's a bunch of b.s. But, for those of us who see and treat autistics as people, due all the same civil and human rights as the rest of us, we will see the obvious truth in that 81%. In fact, I see it rising to even much higher than that. If you have doubts on this poll's results, go speak to adult autistics (on all areas of the spectrum). Get ready to have your eyes opened WIDE.

Katie Wright Speaks Out

Katie Wright on Autism Speaks' Grants

A new post on "Age of Autism" from Katie Wright that I stumbled upon. I found it somewhat interesting to hear what her views & feelings toward Autism Speaks. Nothing earth-shattering, she still hopes AS will start pushing the whole biomedical crap, blame vaccines, etc. etc. But, something that may be worth a read. I for one like to keep Autism Speaks, curebies, and others on my radar screen, you know how the saying goes "...keep your enemies closer."

I can't help it, but I find some pleasure in this big divide that has formed (& is growing!) between the curebie-biomedical-mercury bunch and Autism Speaks. I find it so interesting that all these groups claim to want to "help" children with autism. Yet, together, they've done practically nothing to further the acceptance of autistics, assist teen and adult autistics with regard to career or vocational opportunities, living arrangements, independence, etc. They've done little to nothing to create solutions on changes in schools, the workplace, and in public that would benefit autistics. They have promoted the beliefs that autistics are missing a soul, hopeless, violent, and suffering. It appears that in the end, it will be TACA and Autism Speaks in the ring, fighting one another, parents on either side...and not a single autistic adult benefiting from the millions of dollars each organization blows through.

If you're interested in reading the article, click here.

The Latest No-Link Study

Okay, yesterday's news & I meant to blog on then (but eyes are bloodshot & tearing up like crazy...hard to see!). Anyway...wonder what everyone will think of this study? Will they throw it out the window like others with similar findings? What will certain bloggers say--will they commit further to the fact that docs are pushing prenatal flu shots chock full of mercury in order to increase autism rates to deter from the vaccine-induced cases? Or, whatever insane theories some people have...

A California study finds no link between the increase in autism diagnoses and thimerosal in vaccines. Follow link to read entire article, as featured on the Wired.com blog. Here are the first & last paragraphs, important highlights as I see it.

The CDDS data is considered a gold standard for autism epidemiology, and the study is more convincing than a CDC study published in September. It may be the most conclusive argument yet that thimerosal and autism are not strongly, or even moderately, connected.

The autism-thimerosal link appears, for public health purposes, to be dead. But rather than mocking the understandable anger of confused parents trying to grapple with early and imperfect science, critics ought to be grateful that vaccine carelessness didn't wreak havoc on the mental development of a generation.

Well said. Only time will tell, however, if this study has any impact...

CAICA & Hating Autism: What Is Going On Here???

UPDATE HERE: PLEASE READ!!!
The material has been REMOVED!!!

It was brought to my attention through the Autism Hub that the website for CAICA has several blog entries from the "Hating Autism" blog. I was honestly rather shocked that such an organization would post anything from this blog. The Coalition Against Institutionalized Child Abuse (CAICA) is a website I often refer to to spotlight the abuse that takes place everyday against children in institutions, hospitals, "treatment" centers, boot camps, etc. I have found it very helpful and informative. I was disappointed that they would actually print anything from a blog that often spews hatred, and furthers the type of stigmatization and discrimination against autistics. These beliefs are what leads to the abuse of children, the same children that CAICA is supposed to be fighting for.

The biggest issue here is that when you visit the page where this blogger's postings are listed, you have no clue who he is, what his experience is, etc. One may well think he is some sort of expert, and therefore take his information as fact. This is very dangerous. The page can be found here. It's troublesome to me that they kept the post's title of "Autism don't screw around," for their web page title. That is something else to ponder regarding CAICA and their views on Autism. Some of the more startling statements I came across on this page are here...

I believe the reason that the flu shot is pushed on pregnant women is because they need to cause more autism. Causing more autism when everyone is being told that the mercury is out of the vaccines is a great way to make the uninformed public agree that mercury could not have caused the epidemic. They have to cause more autism because, if autism suddenly disappears, it will help prove the case and the vaccine manufacturers stand to lose over a trillion dollars. The manufacturers don't have a trillion dollars which is why they have paid politicians to change the laws to prevent most parents of autistic children from filing lawsuits.

If anyone is reading this who knows someone whose child has not tried biomedical intervention, please ask them to read this. And, tell them to get in touch with Generation Rescue to learn how to save their child.

It's easy for parents to get frustrated and give up. The only chance our children have is for parents to keep going to beat this son of a bitch named autism.

The object of any professional who works with autism should be to get rid of the autism. Settling for some half-assed improvement is far from professional in my book. Teachers need to learn that they can do their jobs a lot more effectively if the children they are teaching are receiving the medical treatment they need to remove the poison that caused the autism.

A link to his blog (yes, with the title right there, "Hating Autism" for all to see) is on the bottom of the page. It is perplexing why CAICA made the decision to post this hateful, paranoid ramblings, plus a link with such a title. Seems very much against their Mission and Purpose Statements. I have written them, asking they remove the postings, and hope they find more alternative, accurate, informative, and positive material to have on their site. I really hope that if enough of us rally together, as was done with the Ransom Notes campaign, we will once again have success.

Please join me by contacting CAICA at info@caica.org. Thank you!

My Ransom Notes Letter...

I meant to post my letter last month...but we were all sick here and the holidays turned things upside down as usual. So, finally, here is what I sent to Dr. Harold S. Koplewicz at the NYU Child Study Center.

Dear Sir,

I am writing to voice my concern regarding the ransom note campaign that your Child Study Center will be running. I am the parent of an autistic child, and I myself have had to deal with depression, ADHD, & OCD. I do not think this campaign will be helpful to anyone. It does not help parents identify signs or symptoms, if a teen or child reads the signs it will surely make them feel more hopeless.

Furthermore, each ad stigmatizes the diseases and disorders. The themes of possession and kidnapping do nothing but spread the idea that those who suffer are inhuman. As a child and teenager who required fairly intense medical intervention to overcome some serious issues, I know how society judges and treats the mentally ill and the disabled. The public doesn't understand. Ads like this push the public into further misunderstanding, and promote stereotypes. It was my understanding the goal of this campaign was to spread awareness and end the stigma surrounding these conditions. I feel this campaign is doing just the opposite.

As an artist, I do see the attractiveness and creative angle of these ads. They are also eye-catching and thought-provoking. Unfortunately, they lack accurate and helpful information. They tend to be more of an ad to promote fear and hopelessness. I sincerely hope you will reconsider these ad campaigns, and further ads will be of a kinder, more accurate, and more helpful nature.

I wish I'd had the time to post a celebratory post a few weeks ago when this all came down...I'm thrilled to see the great change we all created. It surely has refueled me, and also made me feel like real change can happen. I think more & more voices are being heard each day, and while we have long road ahead, it is more possible than ever for us to achieve all we are fighting for. I am filled with hope for the New Year.

Happy New Years!

NYU Child Study Center: Ransom Notes Campaign

I just opened the email from the NYU Child Study Center regarding their campaign for "public awareness" for childhood psychiatric disorders. This is their intro before they show the posters.

Don't let untreated psychiatric disorders take your child.

The NYU Child Study Center's "Ransom Notes" public service campaign is designed as a provocative wake up to create awareness and spark dialogue about childhood psychiatric disorders, one of America’s last remaining silent public health epidemics. Twelve million American children and adolescents face daily battles with psychiatric disorders. Untreated, these children are at risk for academic failure, school dropout, substance abuse, suicide, unemployment, and imprisonment. Children who do receive appropriate treatment, however, can learn to function and thrive.

"Ransom Notes" may be shocking to some, but so are the statistics: suicide is the third leading cause of death among young people ages 15 to 24, and serious emotional problems affect one out of 10 young people, most of whom do not get help. The strong response to this campaign is evidence that our approach is working. We acknowledge the challenges faced by individuals with these disorders and their families. We hope to both generate a national dialogue that will end the stigma surrounding childhood psychiatric disorders and advance the science, giving children the help they need and deserve. We want this campaign to be a wake up call. Please join the dialogue.

There is nothing here that I find wrong. I hope every child suffering from depression or who is suicidal receives help. I think there does need to be a national dialogue, better information for parents and teens, training for educators, etc. I do feel more needs to be done for teenage depression and other similar issues. It breaks my heart that children and teenagers are affected by this. As a teen, I too battled depression, and was suicidal. This led to inpatient care at a facility, years of counseling, and medication. When I see myself as a teenager, I wish so much I never had those feelings & that I had accepted and appreciated myself. I wish I had one shred of self-worth. I had issues with self-esteem, anxiety, OCD, & also ADHD. I remember feeling like a freak. I remember the awkwardness of returning to school after being hospitalized--I had missed the first 2 months of school. Thankfully, I was accepted by my classmates. This is a rare exception to the rule. I was blessed to attend a school with (for the most part) very grounded individuals. Overall, we didn't judge and the various "cliques" all hung out with one another. Thank God for that--I can't imagine being stigmatized for my personal issues, especially at that time when I was very fragile.

So, I hope a day will come where other kids & teens who are dealing with emotional or psychological disorders will not be judged or criticized. Most often, it's the parents who have issues. Either they're upset their child is "not normal," or they blame themselves, or they are ashamed and don't want neighbors, friends, or even family finding out what their child is going through. It's something that is whispered & shamefully admitted. You shouldn't feel ashamed if you are having emotional or psychological problems. I am all for an ad campaign that would promote awareness and acceptance. I think some parents do miss the signs, while their child suffers. Ads that would alert parents to the obvious & often-missed signs would be helpful.

The NYU Child Study Center claims its aim is NOT to stigmatize childhood psychiatric disorders. However, after reading these ads, I was disturbed. I honestly feel they are doing that which they intended not to do. For one, I'm not entirely sure why they grouped together Autism with Depression, etc. If their concern is depression & suicide, address that. Whether someone is autistic or not, help their depression. Why were the posters for autism put into this campaign? They seem like the odd man out.

First & foremost, the majority of families who have a child with Autism, Asperger's, or ADHD often are obviously aware of it. An ad campaign like this--supposedly geared toward teenagers or parents of teens, does nothing to help parents or autistic young children. So, to make posters like these--which once again, creates a stigma that people on the spectrum are inhuman, is pointless & harmful. The words that are used are: "possession," "detriment to himself and those around him," "destroying," "life of complete isolation," and then the Autism poster which is a long sentence of hopelessness & despair.

The posters are inaccurate, further give weight to existing false & hurtful stereotypes, and, again, DO NOTHING to help either autistic children, teens, or adults, or their parents and family. So, what is the point?? Is there a connection here to Autism Speaks that I am missing out on? Or is it simply that this Child Study Center sees how successful Autism Speaks has been with their fear & dread campaigns, that they want to rake in the big dough too??? I'm so sick & tired of these "foundations" preying on the fears of parents & basically using my child to make a lot of money. A lot of money that will do NOTHING for my autistic child.







So, with these posters, who are you helping? Are you really making parents aware? Odds are, this type of "awareness" campaign will not help parents. Their children will most likely get a diagnosis, if they truly have ADHD or Autism. So, who are these ads for then? They are the same propaganda that Autism Speaks sells--Autism has stolen your child, he is not human, he should not be afforded civil rights.

How about a poster about how people who fidget or don't make eye contact or may have difficulty in social settings be accepted? How about identifying these people as valuable members of society? How about respect? What about teaching kids it's not right to bully someone, simply because they are different. This center had an opportunity, obviously they had the funds, to make a campaign that would de-stigmatize Autism and the psychiatric disorders they are talking about. But, they neither achieved the ability to create public awareness nor truly help the people they are supposedly advocating for.

I have a little less negativity toward the posters on OCD & depression. I'm not offended by them as I am by the ADHD & Autism ones--those are highly offensive, in my opinion. I do have issues with them, however. With regard to OCD, typically, if someone has it to the extent that they need help, it will be fairly obvious. If a parent doesn't recognize the signs, that is a result of poor or absent parenting. All the posters in the world will not improve that. I used to count everything, and I mean everything. I hated public restrooms. For years, I never touched a doorknob--either I'd have someone else open the door, or I'd cover my hand with fabric. I had many rituals. If you spent a 1/2 hour with me, it would be very apparent. I did need help, and because it was obvious and affecting my life, I received the help. Honestly, if your child is not washing their hands until they are raw, would you realize they had OCD from this poster? It breeds fear with the last line of, "This is only the beginning."



The fear-mongering continues with the depression poster. While I do agree the statements made in the poster do depict what depression can do, I do not like its delivery. What does this poster do to make someone aware of depression? Would I realize my teenager was depressed after reading this? The only parents this will help, are those who are well-aware their child is depressed. Perhaps it will prompt them to get more help. But, to be honest, this is a very small minority. I hid my depression very well from my family. I'm great at putting a smile on my face & hiding all of my emotions. I was a cutter. I hid that well too. It was not until I was to the point of killing myself, that my family became horribly aware of the reality of my situation. A poster like this would not have had an affect on my family. So, again, who is this helping? If I'm a teen who is depressed, reading this, would most likely make me even more depressed and feel more helpless.



Along with my boatload of problems mentioned above, I've also had issues with food & diets. I've starved myself and binged and purged. To be honest, the bulimia poster is the only one I don't really have a problem with (& by that I mean, this poster alone would not lead me to write this blog entry, call & write the center and its sponsors, and email everyone I know about this ad campaign, and how to fight back...), as far as its content. Again, the delivery sucks, and I hate all the dark, fear-inciting, kidnapping theme. They really think it's not stigmatizing?? The problem also is, again, who is this helping? The parent who is aware their child is bulimic or anorexic, may be prompted to get more help after seeing this. But, for the vast majority of parents who are clueless to their child's eating disorder, this does nothing for them. How about listing some signs of what to look out for? You could have this same poster, but be sure to show what to look out for. Marks on their knuckles, going to the bathroom right after a meal, dental issues, hair falling out, etc. There are PLENTY of signs to make parents aware of.



So, overall, I give this ad campaign a big fat failing grade. Not only does it not promote awareness nor help parents, it stigmatizes & promotes stereotypes about ADHD, Autism, & OCD. I wonder the price tag on this venture. I wonder all the good those types of funds could have done, if put in the right hands. Posters & pamphlets for parents, with pertinent information. Posters & pamphlets for children and teens that promote acceptance, discourage bullying, and let affected kids know they are important and valued.

Please, be informed:
http://www.autismability.com
http://www.autisticadvocacy.org

And, get involved, voice your opinion:
NYU Child Study Center:
Dr. Harold S. Koplewicz
Phone: 212-263-6205
Fax: 212.263.0990
Dr. Koplewicz's E-mail: Harold.Koplewicz@nyumc.org
Communications Department:
Beth Rowan, Director of Communications
212.404.3757
Beth.Rowan@nyumc.org
NYU Child Study Center
577 First Avenue
New York, NY 10016

Also, check out:
http://autisticbfh.blogspot.com/2007/12/held-for-ransom.html
http://djdialogue143.blogspot.com/2007/12/follow-up-from-yesterday-my-letter.html


And...a DELAYED update, but a great news update none the less:
http://www.autismvox.com/ransom-notes-campaign-is-over/

Down Syndrome Moms and Autism Moms: Holland and Beirut

The stark difference between the two is amazing. I know a few families who have children with Down Syndrome. Never once have I heard any of these moms complain about the self-help delays, speech issues, behavioral troubles, etc. Sure, they may, in confidence, discuss these topics. But, their tone when they do, is out of concern for their child--not themselves. It seems to be a common thread amongst Down Syndrome families to accept, love, & support their child. It also is apparent that these families do not allow a diagnosis to predict one's future success or happiness. These families go about their life, good days & bad, and prepare their children for life in the real world. They are hopeful about their children's future.

Quite a change from so many Autism families. The talk is often how tedious & tiring the autistic child's delays and behaviors are. The families so often speak of their "battle" against autism, and how their child will never achieve anything great. It is curious to me, how these sets of families can be so different.

A friend sent me "Welcome To Holland" early on, when my daughter was thought to possibly have a progressive brain disorder. It gave me hope, it's been hung up near my desk since. It wasn't until I was on an autism message board a while back, that I ever thought anyone might take issue with it (an inspirational & uplifting poem, not a political speech!). The mothers there, for the most part, took it apart & stomped on it. Someone posted this, which, according to them, was much more accurate for "us" Autism moms, "Welcome to Beirut." Interesting how even in poetry, a Down Syndrome mom chooses "Holland" to describe her life, an Autism mom chooses "Beirut."


And now just my free-write-babble (please do see article & video below!):
The mothers I know who have children with Down Syndrome, we have a lot in common. For one, my daughter's physical health issues & birth defects are common in children with Down Syndrome. Aside from that, we can relate to the developmental delays & behaviors. From the way I see it, Autism & Down Syndrome have a lot of similarities. Unfortunately, how so many families are perceiving and reacting to their child's autism is much different. I fear this may have been how Down Syndrome was perceived 40 years ago. Then came genetic testing, and in time, 90% of the Down Syndrome population never came to live. Was it then that people realized their importance in this world? Or was it something else? I am rambling & wondering. I fear that the research being put into Autism Speaks & the like, will lead to a genetic screening. I see genetic testing as a slippery slope, and often far too close to eugenics and Hitler. If you were wondering, I am neither pro-life nor pro-choice, I honestly haven't come to a decision yet. I have a lot of unanswered questions about both sides of the argument. But, just so you know, I am not coming at this from an anti-abortion perspective. No, my p.o.v. is "who the hell decided we should pick and choose what humans are acceptable to live with us?" And, when will it end?

I came across this article on Amanda Bagg's blog, which I came to while I was doing more research on eugenics. Thought I would share it:

"I am a person, not a disease."

&, this video:





If you have time, go to the page for this video to read the comments:

I see similarities here too, & perhaps the drum is beating louder now for an autistic movement such as the one for Down Syndrome.

Scary Huge Dora Doll (Cute Story)

I am going to try and add some personal stories and some funny bits to this blog. I want to not only be a "mom on a mission" but also to celebrate my child, and let the world in on what my vast reality is. Just an fyi... :)

So, the other day, my daughter and I are at a department store (or the "market" as she refers to it). We are walking up and down the toy aisles, as this is something she enjoys, second only to the produce section. Many things are catching her eye. I happen to look up & see an extremely large Dora the Explorer doll. When I say large, this doll is 34" tall, with a massive noggin. This picture just doesn't do it justice:

So, I tell my daughter to look up. She jumps & smiles, shouts "WOAH!!" She can't get over this large creation. I laugh, as the doll is ridiculous, and my daughter's reaction is priceless! My daughter continues to jump and walk all over the aisle, eying the big doll, making all sorts of noises. Passerbys are smiling at her. She assures me "no want dat!" Later she adds, "dah fuh montuh!! (that's for a monster!). She gets so extremely excited over this Dora doll. Minutes passed as we stood in that aisle, this gigantic doll gave my daughter and I such joy on our little shopping trip. Who would have ever guessed?

My Autism Everyday

Where is Lauren Thierry when ya need her?

My daughter has tantrums, some are like any other child her age, most though, are major meltdowns, like you've seen on that film. They've been a fact of life for quite a while for us. I can't tell you the last time I've really spoken to anyone about them. In the beginning, we were dumbfounded and were not sure what was going on. Now, we know, it's simply a part of the whole picture. I don't gripe to our family, friends, or neighbors about them, I'm not looking for sympathy. We have learned to just deal with the meltdowns. My husband and I have our game plan pretty well laid out. We try like hell to avoid them altogether and we try our best to fizzle out the fit when we see it starting. But, most of the time, it is out of all our hands. Then we are on defense. Our daughter's room has had all furniture secured to the wall, and there is nothing heavy she can pull down. That's not to say I'd recommend going in with your guard down--there's no guarantee that a train engine or wooden block won't speed past your head! In general though, we've put the safeguards in place so that she won't get hurt when the world just gets to be too much for her.

She can go to her room, get the rage, confusion, pain, whatever it may be, out of her system. I wait down the hall or at her doorway, making sure she is okay. Some days, she simply needs to cry and work it out. Other times, she will allow me to pick her up and hold her. We will rock together and I hold her close to me, nice and secure. Sometimes, we head to the front porch, where we have rocking chairs, chimes, and a fountain. All of these things have been proven to be a great investment, they really help calm our little one. My heart does ache--for my daughter. I can't imagine how she must feel during these meltdowns.

At home, we just roll with them. When we are out in public, we've also gotten pretty good at managing meltdowns. I will admit, when it's just me, it is a lot tougher. Today was one of those days. We were on a sidewalk, my daughter had already hit me twice and was screaming. She pulled away from me. I had to squeeze my hands with all my might around her wrists to keep a hold of her. Her scream was blood-curdling. My heart was pounding, one slip and I know she'd have taken off. I was able to finally pick her up, although I felt sure any onlookers would think I was kidnapping this thrashing child. This drama continued to unfold as I attempted to get her into our car, and then buckled. She was slapping, kicking, and throwing whatever she could get her hands on. A perfect scene for Autism Everyday, I thought to myself later on.

When we were safely buckled & locked in the car, we headed for the closest drive-thru. She was still screaming, as I placed my order, repeatedly into the speaker. When I arrived at the cashier's window, he asked me how I was. I smiled and said, "well, we've been better," as my daughter continued to yell from the backseat. He warmly smiled back and gently said, "Don't you worry, everything will be alright. It will be alright."

I hold onto simple moments like that--a kind person, saying the perfect words at just the right time. I took comfort in this exchange, a stranger who took the time to say something nice--who says this world is so doomed? Minutes later, everything was alright. My daughter was happily munching on chicken nuggets and happy as can be. When we arrived back home, I set up our Christmas train. My daughter, the screaming, hitting, crying child who had fought me hours earlier, sat next to me. Smiling, she took my hand in hers (something she only has ever done when trying to pull me somewhere) and started rocking side to side. I did the same. She then began to sing, a song never sung before--a whole new carol! There we were, Christmas train circling the tree, my child and I rocking and making beautiful music.

This is what I am remembering and smiling over as I get ready for bed this evening. I have an amazing daughter who held my hand and serenaded me--this life is extraordinary! That wonderful memory is what remains from this day. That is my reality. That is my Autism everyday.

Bending A Little...Gaining A Lot

I've learned a lot in this life. The most important lessons I've learned come from my children. I've come to realize that being a parent is, by far, the hardest job in the world. I've learned that hearing your child cry in pain can literally break your heart. I know now that much of what you read in parenting books and magazines won't always mesh with your life or your child. It's not the end of the world if your child is not potty-trained by a certain age. The supposed "experts" do not have all the answers. The biggest thing I've learned, is that sometimes, you have to bend a little.

We've had to alter our preconceived notions, the ideas we had about much of life. We've realized that hearing the words "Mommy" or "I love you" are not the most important thing in life. Seeing your child sign those words, or point to a picture card to express those sentiments, is simply beautiful. I've literally had to remind myself early on that my child is not rejecting me or disconnected from me because she doesn't want to hold her mother's hand, or give a hug, or play pat-a-cake. As an infant, my daughter would just stare off toward the windows, or just off into an abyss. To be honest, there were times it did hurt me. I felt I must be doing something wrong. How could my baby not laugh at me doing a silly dance? Why won't she react to me playing peek-a-boo? What does it mean when your baby never stares longingly in her mother's eyes?

We had wonderful doctors, and so our education and understanding into developmental disabilities began at our daughter's 6 month well-baby visit. We knew very early that our daughter had delays. I knew instinctively that my child was different, before any professional told us. I would read notes from doctor's appointments, see test results, and go over her diagnoses. I understood them. But, when you are a mom, and especially when you've had those early bonding experiences with another child, the day to day things affect you. All those 'missed' moments can bring you down.

For some time, I had to constantly tell myself that this was not a personal insult. I was not a bad mom. My child was not a bad egg. I just had to try more, try better, try differently. My daughter liked fans, I bought a small toy fan. My daughter liked lights, I bought toys that lit up and spun. She then liked what I had. Little by little, I learned what steps to take to get involved with my child. I never expected her to just "snap out of it" and be like her sister. I knew I had to approach this entire experience, raising our youngest, in a whole new light.

Those early lessons and realizations have continued. They change, and as my daughter gets older, I know they will continue to do so. But it's still about meeting my daughter somewhere in the middle. Not trying to alter her or force her into something that would make her uncomfortable. No, it's about finding what works for her, and trying new things. I still feel at times, that my parenting "bag of tricks" that I had for my older daughter just doesn't work with her sister.

When you learn to throw out the ideas you may have previously had, your life will get better. When you start to bend a little, the gains just may be huge. My daughter usually does not enjoy being kissed. Sometimes, she may give you a real kiss. But, often, she'd prefer neither. So, we've come up with alternatives. Of course, high-fives and thumbs-up are big ways for us to "kiss" in our own way. Lately, she'll enjoy our lips brushing her cheeks. A new "kiss" is simply pressing (unpuckered) your lips against her head. This works. It's great. It's a kiss. It's a unique kiss, and it's wonderful.

We have never made our child look us in the eyes. When she talks, we try to have her toward us, simply so we can hear. We do this by asking her "can you turn to me?" just as I would her sister. We often crunch down to her level, so we can hear her. I will never forcefully pull her chin up or demand she look me in the eyes. I do not think she would ever speak, if we treated her in this manner. We don't force her to wear very fancy clothes, lace and frills drive her crazy. Most outfits are soft cotton, nice & comfy.

We don't scold her for stimming, rolling around, jumping, or screeching. We have found ways for her to ease her sensory system and ways to work out some extra energy. We encourage her to use a sit & spin, her spinning chair, slide, trampoline, bouncy ball, etc. We have sensory toys, beanbag chairs, a tent, all sorts of things around the house. To us, there is no other way. I can't imagine anything other than accepting my child, and giving her a loving, caring, & fun environment that suits her needs. I'm not being a super-mom, I'm not a saint, I'm not doing anything above and beyond the call of duty (in this case, being a parent). I'm being a mom, I'm loving my child. It's simple.

I wish, above all, that other parents will see that this is Autism everyday. And it is a beautiful...

Random Thoughts on Acceptance, Parenting, and Love

My husband and I have approached every chapter in our children's lives with "what do we need to do?" And, then we tackle the problem or situation head on. Behind that question, is always the idea that the end goal is for our children to be happy, to feel comfortable, to flourish--in their own, unique way. This holds just as true for my autistic daughter as it does for her sister.

Perhaps my husband and I are just built much different than most (and to be honest, that wouldn't surprise me!). It just seems we are of a minority group--parents who don't have preset expectations and goals for their children. I personally do not want to live vicariously through my child. I want to watch in amazement & joy as I see this being, who once resided inside of me, grow and blossom. I watch with astonishment as little by little my children come into their own (in each, again, their own unique way). I cannot wait to see all the world has in store for them. I will respect & support whatever life goals they have. I will enjoy seeing them get to know themselves, embracing their true self.

Yes, I said "them." I have the same mindset for both of my children. I don't feel like my autistic child will not have goals or dreams, I know she will. They might be different than what I'm accustomed to. It may take some time and creativity to figure them out correctly. But whether it's something she takes interest in next week, next year, or 10 years from now...I will support her in any way I can. Autism has not stolen anything, especially dreams and future plans, from my child.

I don't get what is so hard about realizing that your child is their own individual human being. You do not own them. They are not possessions. You teach them, guide them, hug them, support them. But, you must let go. They are not you. They are most certainly not the you you always wanted to be. They have nothing to prove to you.

It rattles me hearing so many parents of autistic children pity themselves and all that their child will never do or won't be. It's pathetic. If, at the end of the day, my daughter is content and feels safe, I've done my job. What more could I want for her?

Normal People Scare Me

I really couldn't think of a better title! I am ordering this dvd, & really excited to see it in full-length. I know this YouTube piece has been out for a while, but I just came across it. So, figured I'd share, in the event someone else missed it too.

So much of what we, the general public, see of autism is very negative. The majority of news pieces and interviews done feature parents, researchers, therapists, and doctors--very rarely autistic people. The conversation generally involves searching for a cause or a cure, controversial treatments, the financial and emotional stresses felt by families, and all too often, autistic children are portrayed as wild, out of control, and completely disconnected. Their parents cry and talk about how painful it was the day their child was diagnosed, and they speak of the daily anguish they feel, living with autism. Many times, the talk becomes even more hopeless. Some parents describe autism as having "stolen" their child's soul, that it's as if their "child was kidnapped," they compare autism to cancer, and some have even admitted contemplating killing their child.

I have no doubt that if the topic was something other than autism, the public would not stand for this type of hate speech. If the parents of diabetic children came out and said that the day their child was diagnosed with diabetes, they felt like their life was over. People would be appalled if these parents continued on, complaining about the cost over medical care for their child, how time-consuming checking blood sugars was, and how stressful it is to maintain a special diet. If they said it was as if their child had been replaced by some other child, that this just wasn't the same child they had before diabetes, people would have to pick their jaws up off the floor.

Can you imagine...

An ad campaign for juvenile rheumatoid arthritis, a father declares:
"I didn't choose this."

On this year's MD Telethon, parents shake their heads, saying:
"You just keep being disappointed."

The father of a child with cerebral palsy:
"I really hope I'm not changing his diaper by the time he's six and a half."

The next St. Jude commercial:
"I actually contemplated putting my child in the car and driving off a bridge."

The mom of a child who is in recovery from leukemia, when asked if she was going to have any more children:
"I'm done having children. I always thought I'd have at least four or five. But I got my a-- kicked."

I am pretty sure these parents would be advised to get psychiatric help. Perhaps in some cases, child protective services would be called in. There would be no excuse for any of these parents to make public statements like the ones above. Yet, the ones above were made and continue to be made by parents of autistic children. And no one says a word for. It is unforgivable. Stop the hate speech NOW.

Support & promote videos such as the one above. If you truly care about what kind of life your child will have in 5, 10, or 20 years, this campaign of shame and blame needs to end now. How do you expect anyone to offer a job, or services, or living arrangements to someone who for years has been portrayed as being inhuman, wild, disconnected, soulless? Personally, I don't want my child to have to fight the public and their cruel misconceptions her entire life.

My Life, My Child

Life with autism is not a bowl full of cherries (neither for the parent or the child). It is stressful. Days are long. Nights are often longer. There is screaming. There is crying. There are IEP's and school issues to contend with. There may be therapy and doctor appointments. Yes, life with autism can be difficult. But autistic children do have souls and they have not been kidnapped. They will not die from autism, and no one should ever announce repeatedly in public that they have considered ending their autistic child's life. Autistic individuals deserve the same respect and rights afforded to every other human being.

The most important thing I feel I've done on this leg of my journey (autism that is) was to reach out to adult autistics. Today, with online communities, autism blogs, and published books, reaching out to autistic adults is rather easy. These adults have given me valuable insight into my daughter. They tell me their own personal stories, what they have gone through, what helped them growing up. Mostly, they gave me a whole new view of autism. Their stories and advice are priceless, and have changed our family and our outlook so much. I would suggest to any other parent to connect with the adult autism community. You will feel empowered and hopeful, for sure.

As a parent, especially when your child is first diagnosed, you pick up nearly every book on the the subject and then (of course!) you Google autism. Without fail, Autism Speaks is one of the first you will come across. I remember visiting it early on and reading their material. I watched a movie they had produced, Autism Everyday. I saw lives out of control. I saw children out of control. I saw horrible tantrums, parents who were desperate. I saw so much of my life in that film. I cried as I watched it. I could relate to a lot of it. For most parents, the next step is trying to find a cause, and therefore a blame.

For me, our daughter has had health issues since birth. She never had a regression. So, for me, it's apparent our daughter's autism is genetic. I feel she was autistic in the womb. Now, whether all cases of autism are genetic, I do not know for sure. I do think it's possible some children have an immune response to vaccines (I don't think it's mercury) and I don't think it would hurt to look at how we vaccinate our children (perhaps less shots at once, maybe). I believe the children who make almost overnight progress by dietary changes, probably did not have the same type of autism that my daughter has. It is possible that these children experienced behavioral and psychological changes due to allergies and intolerances. I never needed to find something that I could point to and say "YOU did this to my child!" For me, I just don't think that would be helpful.

Trust me, I have felt sadness. I have felt bitterness. I have felt desperate. I have felt heartbroken. I have those moments. I cry. I allow myself pity parties from time to time. I will cry, I sit and talk to my husband, I speak to other parents, I journal, I blog, I listen to music. I let myself feel those emotions, I identify them, and I deal with them. And then, and most importantly, I move on. I have chosen to focus on the positive. I truly don't think those experiences and the emotions I feel are unique to me, my situation, or to autism.

Life with autism has joy. There is hope. There is laughter and smiles. There is music and dancing. I made a choice to accept my daughter--all of her. I can't even say it was a choice, it was natural, she is my child, my flesh and blood. No matter what, I would love her and always will. Autism, or any other label or diagnosis, would never, could never change that! Making peace with autism sets you free to enjoy your life and your child. I do not feel like I've been cheated, not at all. My daughter has changed me, I find such beauty in the details. The little things, in life with autism, they are so significant and endearing. My children are both unique gifts and truly the greatest of all blessings. I would not change my life for anything.

Newsflash! Autism Is NOT Cancer!

I hear from time to time, some parents compare autism to cancer. They are somehow able make many parallels between autism and cancer. This, honestly, embarrasses me. I have friends and family members who are fighting cancer, I know parents who have lost their children to cancer. Cancer kills. Cancer is an evil disease. We need to find a cure for cancer.

I can't imagine going up to one of my friends & complaining to them about my child's autism, and how it's so much like their son or daughter's fatal tumor. I'm sick to think of a conversation comparing the chemotherapy and medications their child had to take (to save their life), and of all the treatments and therapies I might have tried to "cure" my child. I wonder what my friends would think if I were to bitch about my sleepless nights, how my child just wouldn't quit stimming, and how hopeless life with autism was...when my friend is up all hours pacing the hospital room, or their child was so sick from cancer that his body could no longer handle even the smallest of movements, or how their family remained positive and never gave up until the moment their child died.

No, any such conversations would sicken me. I can't believe anyone truly buys that garbage. It blows me away that someone would ever make such a comparison. For me, I see absolutely no connection to cancer or any other life-threatening disease. There are some minor commonalities one could draw between autism (any other disorder or condition that can be stressful on parents or a family) and any disease that also causes stress. But, beyond that, the parents of an autistic child, who has typical autism (i.e. classic, really anywhere on the spectrum), cannot and could not relate in anyway to having a child with cancer or any other fatal (or potentially fatal) disease.

The way I see it, parents who make this argument don't know the difference between an inconvenience and a utterly life-altering, horrible, tragic circumstance. To them, autism has wrecked their lives. Their plans of little league and a walk down the aisle have been destroyed. They are irritated and aggravated. Their life has changed, and to them, this is a nuisance. Autism is an inconvenience for these parents. Cancer is a tragedy. Cancer causes physical pain and symptoms, cancer is heartbreaking. Children who have cancer must undergo surgeries, infusions, injections, pills, and more in hopes of saving their life. Families are devastated. Cancer treatments and hospitalizations create major financial debt for these families. They do not have a choice as to whether or not to try a treatment. The alternative is certain death.

No parent of an autistic child (who only has autism) has ever had to live through that. They've never gotten on their knees and begged God to save their child, and by save I mean keep their child here on Earth. They've never cried so much they were certain they had no more tears, because of how heartbreaking it was to see their child lying in a hospital bed, connected to dozens of wires and tubes. They've never felt sure they were about to vomit up their insides because of the unbearable stress, fear, and hell they felt when the doctor tells them the treatment was unsuccessful. They have no clue what that pain feels like. They have no concept of being a parent to a child who has cancer, or any other life-threatening disease.

I feel safe to say that any of my friends who visit a cemetery on their child's birthday would gladly switch places with me--on any given day. They would move heaven and earth to get their child back, and trust me, if part of the deal with God was that their child would stay alive but be autistic, they would not need even a second to shout YES absolutely!

This phantom connection that some parents try to make between their autistic child and a child battling cancer will never make sense to me. Cancer is not a nuisance, not an inconvenience, not a different way of being. Cancer is heartbreaking, it is torture.

Cancer kills.

Autism doesn't.

End of story.

Autism Acceptance: What It Means To Me

Autism acceptance, to me, does not mean that a child cannot have speech therapy or help with sensory integration. It doesn't mean that a parent shouldn't seek out support groups. I'm not saying you can never cry or have the occasional pity party. What it means is that first & foremost, I love my child. I see past any disability or difference, and see that she is my daughter. She has talents & gifts, she has likes and dislikes, and she is a joy. At times, it may be harder to discover those things, but they are there. She may require more patience, more time. Living with my daughter, and raising her, I've had to learn new parenting skills. I've had to think differently, react calmer, and be more creative. To me, all of those things have made me a better parent and a better person.

Autism acceptance to me, doesn't mean I deny that autism can be and is often disabling. It doesn't mean I look at autism with rose-colored glasses. I believe that autism is a neurological (with many psychological symptoms and/or disorders occurring as well) condition, one that most likely is genetic (and perhaps metabolic in some form as well). I also believe that a lot of what we (NT) see as autistic symptoms are sometimes simply a different way of thinking, reacting, or being. Not every aspect of autism is a symptom or needs to be "worked on." Also, so many believe that autistic children won't develop or change, that with time, they will not gain skills. Many feel like they have limited time to 'fix' their child, that they are in a race to save the child they once had. This is simply not true. Every autistic person I know of, specifically those who have not been giving supplements or other supposed cures, they gain skills & develop with time.

Autism acceptance means that I choose to focus on the good. The difficult things, are not the focus or the center; they are not all that my daughter is. The challenging parts are instead looked at as speed bumps or hiccups. And, trust me, some days are a LOT bumpier than others!!! I am a realist. We have moments that make my head spin. I feel helpless at times. I pray for answers and strength. I don't pretend to think that our life is a piece of cake, nor that it will be easy as the years go on. I listen to the doctors & professionals, I read books, I'm well aware of the possible challenges our daughter may face. I know that she may always live with us, or require assistance in her day to day activities. I'm not sure what her physical or neurological health will look like in 5, 10, or 20 years. I do know that wasting time & energy on worry helps no one. Especially not my daughter.

Autism acceptance means I have actively chosen to focus on the good. And, there is plenty there. Sometimes, you just need a new persepective to see it. I have had plenty of that persperctive. And, that perspective came from things in our life other than autism. In fact, they were way larger & scarier than autism could ever be. I hope to tell others that it's okay to accept autism & fully embrace their child. You are not hurting or harming them. If you give love to your child & allow their self-esteem to blossom, and show them acceptance, you have done nothing wrong. Your child has not lost their soul, your life is not hopeless, autism in nothing like cancer.

It's okay to want your child to be able to communicate--it may just not be the form you are accustomed to. It may be through sign language, picture cards, or a computer. It's okay if your child needs therapy to help with motor skills or sensory processing or speech, just be sure it's therapy that is respectful to your child, advocate for your child, ensure that he is being treated kindly by the professionals in his life. It's okay to want your child to be able to deal with sensory input easier. But, realize, your child may always rock, bob, or sway, they may always flap a bit or grunt at times. That's okay too. There is plenty of room in society for people to bend and alter how they perceive and judge others. We can all lend a hand in that, and really make a difference.

The minute you stop seeing all the negative, stop focusing all your time, energy, and money on fixing or curing your child, and instead embracing them, finding the joy, and accepting your life, the better for all. I think we all owe it to your children--regardless of skill, ability, or diagnosis.

What Autism Acceptance is to me....


Some parents I meet are downright offended when they hear "Autism Acceptance," and anything related to it. They have many false notions about this movement, and those of us involved in it. For one, they presume we all dance around all day like a bunch of nutjobs, thanking the heavens that our children are autistic, never having a moment of sadness or stress. They assume that because we have accepted autism & find joy in our life, then we don't encourage our children to communicate or groom themselves or develop in any way. That is just the beginning of their insane views on those of us who are part of the Autism Acceptance 'movement.' They have no clue that we tend to treat our autistic children very much like our NT children. They simply can't graspe the concept of looking past the "big bad Autism" & seeing just our child. They don't understand why we're willing to "accommodate" our child by offering alternative forms of communicating, quiet time, avoiding certain places, etc.

I have never said that life with autism is a complete round-the-clock blast. Life raising any child has it's fair share of ups & downs. People assume because I am able to find joy in my child & in our life, & thus, in autism, that my child is "less affected." This is a common argument they will throw at me & others. Where they get the term & how the interpret "less affected" is something I've yet to figure out. If you truly are autistic--whether it is classic autism or aspergers--indeed every aspect of your life is affected by autism. And, I don't know how one would ever get a clinical diagnosis if they were "less affected."

That aside, myself & others like me are often "accused" of having a child who is "less affected." That, we are in a separate realm of the spectrum than their (these other parents) miserable existence. That I just couldn't possibly relate to their life, their stresses. My child must be "high functioning" or "aspergers," they say (and, again, those two are apparently cake-walks). Because, there's simply no way, that if my child had the "real bad, shitty autism" (their words, not mine) that their children have, I could ever feel any joy in my life.

I've stayed away from specifics with regard to my child, as much as I can. I will say that her diagnosis is autism, and she's not considered 'high functioning' or as having aspergers. Again, I have come to know people and children with these various diagnoses of autism, and I've yet to come to the conclusion that any one diagnosis is easier or defines someone's future or their abilities. So, my daughter has autism, just like most of their children, and this tends to upset them.

It amazes me, each time I hear these parents speak, how quick they are to debate other parents. Time and time again, the parent who chooses to be bitter and see no joy in their child or their life, they will attack and belittle any parent who believes in the idea of acceptance or who has a child they feel is "higher functioning." They especially get infuriated with us who are finding happiness in our lives, autism and all. I have seen and felt this firsthand. My child is now verbal, but has the very typical communication issues of people with autism. But to them, the fact that my child can speak (& they want no part of alternative communication for their children often), this makes them bitter. I can't understand their pain, because I hear my child speak. They all promote that lie of someone who cannot speak, obviously has nothing to say. It makes them--these parents--feel better.

My child has sensory issues, she stims, she lines up objects, she hits, kicks, & bites, she has meltdowns, tics, a tremor, seizures, major feeding difficulties, developmental delays, self-regulation issues, etc. Need I go on? I could devote my life to only those details. I could look at my precious child & only see those things, only see what was wrong or different. I could, as these parents do, see only what was missing, what was broken, or what was lost.

Equally, I could look at my other child. I could say she talks way too much, has problems focusing, is overly-sensitive, is clumsy, and has sleep disturbances. She was slow to potty train, she is a very picky eater, and she still has trouble tying her shoelaces. Would people think it odd, if this was all I spoke about with regard to my child? If all I did was complain or stress over her inadequacies, her challenges, wouldn't those around me take issue with that? So, why the double standard? Why is it we have free license to bitch and moan over our autistic children? Why is it okay for us to not see any good and only focus on the negatives?

I choose to see the amazing things. I embrace the little things. How her laugh is the greatest music in the world. The kick I get out of her organizing the products on the grocery shelves (no, she doesn't work there!). The way she bounces up and down when she is happy. Yes, when she is happy. I do get stressed out, I have sleepless nights, I cry. But, to think about and only focus on the challenges, I would miss the big picture. The big picture is that my daughter is an individual, a person, and I never want to disrespect her. She is a gift.

My Rant: Message Boards & Parental Pity Parties

I cringe each time I read an entry in a blog or message board, in which a parent bemoans their autistic child. They pity themselves, about the raw deal they got & how their son will never play Little League. They make statements like "well by the time he's 15, I'm sure he'll be in a residential center" and "God, she drives me absolutely nuts, I can't stand it & honestly don't know how much of this I can handle." It goes on & on.

If I thought that all of these parents were simply venting & making an anonymous statement so that they could better handle their daily life, that would be one thing. Unfortunately, in every case, these such ideas and statements are not just rants or exhalations. Sadly, autistic children are murdered each year. Society accepts these homicides, because the over-riding thought in the public eye is that raising an autistic child is so damn unbearable. That naturally, a parent would sink so low, and be capable of killing their own child--who wouldn't, with autism being so horrible? So, I can't simply read such things & brush them off. They hurt, and they spread this idea that autistic children & people deserve less. That we can bash them & disregard their civil rights because they are autistic.

Communication: More Than Just Spoken Words!

"Not being able to speak is not the same thing as having nothing to say."

I really wish everyone would read this quote & really take the time to understand and accept it. I'm saddened by the amount of parents I come in contact with who are desperately hopeless because their child is nonverbal. They presume therefore all sorts of terrible things. One is that their child is not capable of much, including ideas or opinions. The other is that their child will ultimately be institutionalized. Another is that their child is unaware of what's going on around them, what is said about them, and also what is written about them.

So many people honestly think that if someone cannot speak, then there is nothing go on inside. They also assume that if someone walks around grunting or stimming or twitching, that they can't possibly be thinking of much. So many of these parents are tragically ignorant, and most aren't willing to open their eyes to this. They would prefer, I think, there not be a possibility that their child or the autistic adult is capable of higher thinking.

I hear time & time again, parents saying "if only I could hear him say 'mama'" or "it breaks my heart that she won't say 'I love you.'" I feel for them, I do. Before my daughter had words, I remember falling into that belief, that if she couldn't speak or say "mommy" that we just wouldn't be able to connect. Our neurologist is amazing & early on, he recommended sign language. We used sign language & picture cards. I yearned to hear my daughter say "ma." I thought that would be the most amazing thing. I was wrong. The day my daughter signed "daddy" was one of the most wonderful things ever. A few weeks later, she would sign "mommy" and then further down the road, it was "I love you." Seeing those signs, that was so beautiful. Those personal experiences, really made a permanent impression in my mind on this whole nonverbal issue. Being nonverbal, does not mean a child or adult doesn't have thoughts, feelings, or desires.

Parents are so close-minded to what communication really means. Often, they seem to take personal offense if their child cannot verbally communicate. They feel a 'normal' parent-child bond or connection can never be achieved because of this. Verbal speech is not the end all be all for communication--far from it. In this day in age, with technology, the options are seemingly endless. PECS cards, ASL, laptops, writing boards, etc. While our daughter is now verbal, she still uses PECS & signs, and I imagine when she gets a bit older, she'll use typing quite often too, as a form of communication. I'm excited for that. Speaking is very difficult for her, she tires easily, and is often very hard to understand. So, I'm excited for when she will have yet another option for communication, and I can't wait to 'hear' all she has to 'say.'

On Jenny McCarthy's TACA Video

Oh Jenny...

Not sure what was more annoying--her hair constantly falling in front of her face or her atrocious muscle tank. Very appropriate for a video to supposedly raise awareness on autism & help parents.

Some one-liners that really stood out:

"Oh my God...my son is gonna be like Rain Man."

"Find a DAN! Doctor..."

"No hope, no cure."

Changes to black & white when Jenny talks about her son banging his head, flapping, spinning, screaming. Same old film tricks these groups use time & time again...black & white, slow-motion, or quick, dramatic cuts.

States "it's bullshit" if someone tells your child with autism can't be helped. Wow, that's classy for a national organization's video.

Do I really need to write anything else here?? Here's a great video, that really makes all my points:

New name too.

Yeah, the last "Me By The Sea" was just one of those, song-was-on-the-radio and I-can't-think-of-a-blog-name moments. And hence that became the title of my blog--having little, okay nothing, to do with what I typically write about. I do love the beach...but I'm not blogging on hot surf spots. So, anyway...

The thought behind the new title is (yes, it's a spin on the Tylenol commercials, I would be nowhere without the greatness of Tylenol, so perhaps that's why inspiration struck there!) for people, especially parents, when they hear "autism" for them to just take a second (Stop.), and think (Think.)...take a deep breath & realize it's autism (Autism.) not the end of the world. Hopefully it makes sense to others outside of my head. ;)

Yikes--how long has it been?

About 8 months if my math is correct. I happened to look around, & have sadly found that a lot of the other bloggers who have commented on here & I'd read, are now gone (perhaps changed blog or user id's??). Anyway, that is sad. But, I understand. I needed a break. Around the time I last blogged, my daughter was having an increasingly more difficult time with meltdowns, and we had a school evaluation, and just life with kids, dogs, etc. Then came summer, which was wonderful, but also busy. And, all the while, we were in IEP mode, need I say more? I've got lots to gripe about. Lots indeed.

While I was absent from here, I have been to 2 message boards for autism. I stayed neutral early on, hoping to get support there. And I did. Lately, however, views which I am adamantly opposed to have been aired out repeatedly. So, I have spoken up. After weeks of this back & forth, honestly, my head hurts. I'll bitch on that a bit too I imagine in the coming entries. This whole autism thing--how us parents treat each other--is absurd at best.

I get more & more depressed when I think of the world my daughter will be an adult in. At this rate, it will be rather bleak & I can only hope to have found a magic immortality pill by then. People suck, in general. And the campaigns against autistic people continue, and very few are doing a damn thing for the adult autistic population. I suppose they're just hanging on that hopefully a "cure" will be found, and that God willing, this "cure" would be "successful" for my child, and then, thankfully they won't have to deal with her at age 21, 30, 45... Makes me just go nuts when I think about it. All the dollars being pissed away at finding some supposed cure--meanwhile how many children on the spectrum become adults on the spectrum each day? I'd love to see that stat. Then I'd love to see what is available to them--job training, life skills support, safe independent living arrangements, etc. I'd love to see the dollar amount going into this...then stack it against the "searching for a cure" funds that Autism Speaks, DAN!, and whoever else is on this mission to "stomp out" autism is using.

Well, this was going to be a short "I'm still alive" entry... So much for that. I've got plenty more to rant & rave on...and also to embrace & brag about. Stay tuned.

Inspiring...


Please visit "What Are They Thinking?" blog: www.survivingmotherhood-mom26children.blogspot.com

A great blog, an amazing family, & valuable insight into the realities of raising six children, FIVE of which are autistic, and all the JOY that EACH of their kids bring. Their mom has written some really incredible entries. They were on Extreme Makeover-Homeowner's Edition last night & wow! To see the family, their struggles, but mostly their HOPE was inspirational. It was a great episode, and YES finally, a very positive show on T.V. dealing with autism. Cheers to Jeanette & family!!!

NeuroTypical Entitlement

Since when did we, as parents, become owed a certain spec of a child? Are we obligated to get a 'normal' kid, maybe even a blue eyed, blonde haired darling who will undoubtedly either be hero quarterback or bubbly cheerleader? That seems to me what so many of these parents feel. Those who are so steadfastly 'fighting' to cure their child. I can't even fathom the amount of money, time, & energy these parents spend on trying to normalize their children. Their assumption is that they lost their child. In their mind, children 'with autism' have had their souls stolen from them.

The basic undertone I hear time & time again from these parents is that this kid is not what they signed up for. They dreamed of a child who they could easily take out to restaurants, have fun in playgroups, have a big group of friends, and certainly never have to 'explain' certain behaviors while in public. They whine about how their kid can't ride a bike or how they always wanted a son who would play Little League. As if any of that is the end of the world. It seems as if they thought they were guaranteed some sort of "NeuroTypical Entitlement" & are pissed as hell the deal was not followed through on. How dare they not have a 'normal' child? What will their family, friends, neighbors say? How ever will they explain this 'situation' to others? I see so much resentment toward their children.

All of that hatred toward life & how unfair it can be spirals into blame & anger. They find causes to point their fingers at--vaccines, drinking water, french fries, the list goes on & on... They band together to form armies to alert others of the terror that lies from these so-called causes. Websites, support groups, organizations form to warn & scare other parents. Don't vaccine your kid or they'll end up like mine! All of this, I suppose, let's them sleep better at night. If there's outside blame to lay, something to point to & get angry at, well, there's some peace to that. It's comforting to not have to look at yourself or to simply accept something that you cannot understand at first glance.

I imagine that had I spent the last few years angry & bitter, devoting much of my time to assigning blame & focusing on a 'cure,' my child would not be thriving as she is. Instead of looking at her & seeing someone who was lost, and feeling as if I'd been jipped, I got on with it. I saw through the things my child wasn't doing, and saw what she WAS doing. Yes...even the kids who are sitting alone, staring out a window rocking, they are doing something. A lot of these parents don't see it. Look past the walls we as parents often feel locked out of.

Let go of whatever guilt, shame, fear, embarrassment, and anger you have. When we become pregnant or adopt a child, we are in no way entitled to a 'normal' just-like-everyone-else-kid. There is a slippery slope of wanting a 'normal' kid & not a disabled one. Naturally, no one wishes or hopes for a disabled child, I doubt anyone dreamt of having an autistic child either. It's not exactly what goes through your mind when you're picking out a nursery theme. But, what defines someone as being disabled? And, what would that spectrum of disability look like? Who decides? Who decided Down's Syndrome was too tough on parents? As more & more people look to "cure autism," it is a fine line they walk. Hitler wanted a nation where everyone was 'perfect.' I can't help but see the connection when it comes to the autism debate. We as parents have to make sure that our children are accepted & not ostracized in the years to come. None of us are 'owed' a certain child, love your child--however it is that they are.

God's Will: The Church vs. Autism???

I was reading Kevin Leitch's blog where today he writes of DAN! doc, Jeff Bradstreet and his endorsement of exorcism. DAN!, it has been discovered by Mr. Leitch, has many interesting connections to some religious groups involved in cure autism campaigns. Dr. Bradstreet (cringe that I do have to refer to him as a doctor...) has even been known to promote exorcism as a reasonable way to cure autism.

I will not link the next two groups, in the comments section of Mr. Leitch's blog, you can find the links if you choose to check them out. The groups are "Glory Of Zion" and "Children of Destiny," on both websites are links to more sites. It appears it is one group of people fronting for several churches & charity groups. They strongly promote finding a cure for autism, blaming mercury, and encouraging the use of biomedical crap and a slew of other quack cures. I just checked out both sites and became very queasy.

I find it interesting that these people quote the bible in an attempt to further their profits & promote DAN!, HBOT, et al. They make statements that would lead one, namely a vulnerable parent, feel they are failing not only their child, but God as well, if they don't try to cure the child of Autism. As if it is God's will...they apparently are experts on God's will.

Here are some bible passages that would seem more helpful to parents, especially when first receiving the diagnosis of Autism:

James 1:12
God blesses the people who patiently endure testing. Afterward they will receive the crowns of life that God has promised to those who love him.

1 Thessalonians 5:16-18
Always be joyful. Keep on praying. No matter what happens, always be thankful, for this is God's will for you who belong to Christ Jesus.

John 9:2-3
..."Neither this man nor his parents sinned," said Jesus, "but this happened so that the work of God might be displayed in his life."

I suggest these people refer to the story of Job. A man who lost everything & yet still praised God. He felt it was God's will & he ACCEPTED it. From Job 2:3-10 "But Job replied, 'You talk like a godless woman. Should we accept only good things from the hand of God and never anything bad?'"

While reading these websites, I am sick to death of people claiming to be doing God's work, ripping people off. My heart breaks for the children who have died at their hands, and at those who are being mistreated right now. Many are to blame, it is just especially sad when religious groups are the culprits.

I believe it is our duty to accept our children, offer them love & comfort. Have hope & faith--God is not demonizing your child. Accept the beautiful child you have been given & have trust in your God. I feel strongly that is God's will.