Thursday, June 12, 2008

Beyond THE FUTURE: Kristina Chew at Autism Vox

Thank goodness for RSS feeds because Kristina Chew at Autism Vox is one prolific blogger. Also a college professor and mom to 11-year-old Charlie—a charming, sushi-loving boy I enjoy cheering on every time I read about his many triumphs—Kristina provides ongoing, fascinating insights into her life with a dynamic child with severe autism.

In a Good Morning America feature that ran earlier this week, Kristina was interviewed regarding her “controversial” choice to accept Charlie as he is. Some parents, Kristina notes, do not believe vaccines cause autism and prefer to concentrate on helping their children and advocating for others rather than placing blame. While I enjoyed seeing Kristina in the interview, I was miffed at the GMA stance (voiced by Diane Sawyer at the end of the piece) that Kristina’s point of view may simply be an out-of-touch option for coping with heartbreak.

All of Kristina’s writings are very practical and her points are based on scientific studies rather than celebrity-fueled emotions, but the interview sections that were aired did not cover any of this. I have no trouble with the longer schedule of vaccinations in babies and young children proposed by those in the Green Vaccine movement, but I’m very fearful the simmering anti-vaccine frenzy is already resulting in a return of various awful diseases such as measles, diseases that children in this century just should not have to worry about or endure.

Rather than representing a “controversial” point of view in the face of calls for green vaccines and autism cures, Kristina presents a calm call to attention. What we need now, she asserts, are programs and services designed to help parents of children with special needs, help these children enjoy and reach their potential in school, and provide adults with autism and other special needs safe living arrangements with proper care as well as occupational opportunities that challenge their abilities and contribute to their overall well-being. That all makes perfect sense to me.

Kristina has been writing more lately about her concerns regarding Charlie’s future, when her boy has grown into an adult and she and Charlie’s dad are no longer able to care for him. I wish the folks at Good Morning America had opted to emphasize her overall message of the dire need for more attention and resources directed at the lack of services for adults with autism in most states as well as the lack of training in our schools for teachers and other caregivers. Kristina advocates for caregivers who are “properly trained and supervised,” for an emphasis on the proper use of “non-violent methods” to keep a child and those around him safe; for increased understanding of the need to understand why certain kids might get upset and to work with them “with dignity and compassion” so injuries to any child’s psyche or person can be completely avoided. I found this late 2007 Autism Vox post especially revealing:

“Teachers used a basket hold frequently when Charlie headbanged and they were trying to stop more headbanging—but their efforts often only made things worse. The teachers had been insufficiently trained in this sort of crisis management, and had little support from anyone with any expertise. There are simply better ways to help a child at such moments; best of all is to teach a child when he or she is not upset about dealing with feelings of anxiety and frustration.

“Strategies that Charlie’s teachers now use [include] teaching him to ask for breaks before he gets upset and knowing where there’s a mat in the classroom that he gets out on his own to lie down on when he needs to. The teachers themselves know Charlie and how he communicates [my emphasis; this is so, so important] very well from careful and thoughtful interactions. They can sense him getting upset, and accordingly change the pace of how they are teaching. They remind him that he can ask for a break (there is a flashcard on his desk that he can point to). These teaching methods communicate some important messages to Charlie: (1) We believe—we know—that he can learn ways to let us know how he feels; (2) We’re not afraid of him getting angry or mad or crying out; we know he knows how to help himself; (3) We can help him do this in ways that are minimally physical and maintain his dignity as much as possible.

“I’ve come to think that the basket hold and other restraint procedures are overused because of fear. There is fear that ‘I won’t be able to handle this large child;’ there are wishes that a child was a young toddler and something like regret gets communicated to the child that he or she has gotten bigger. To me, this is an unfortunate message: Of course our kids get bigger. Of course they grow up and become pre-adolescents, teenagers, and adults. I understand why people have their fears but I think these can lead to mistaken practices like physical restraints and to the overuse of physical restraints.

“Steady and patient teaching—…always with an emphasis on flexibility, on building an interpersonal relationship between Charlie and the therapist, and on the belief that he can learn—has taught Charlie to communicate his anxieties and worries more and more.”

“Acceptance, to me, is the beginning of hope,” Kristina is quoted as saying at the end of the GMA interview. Why acceptance, understanding, and compassion are considered controversial, I’ll never know. Maybe they simply aren’t trendy enough.

Photo of “Merrill’s Autism Service Dog, Hunter” © Tihea on Flickr


Blogger Lisa said...

“Acceptance, to me, is the beginning of hope"

How much better the world would be if we could apply this philosophy in all situations.

9:54 PM  
Blogger Sustenance Scout said...

I'm right there with ya, Lisa. That quote says it all.

10:01 PM  
Blogger kristina said...

I am beyond honored to read this! Thank you so much----hope is good.

11:32 PM  
Blogger Mary Ann said...

I wonder if Diane Sawyer has any idea how many people she alienated with her closing comment.

2:35 AM  
Blogger Sustenance Scout said...

Mary Ann, I'm afraid Ms. Sawyer is pretty out of touch with a lot of things these days. I thought ending the entire piece on that note was irresponsible.

Kristina, you deserve all this and much more! Thanks for all you do! And yes, hope is very very good. K.

6:40 AM  
Anonymous Anonymous said...

Thanks, Karen, another great post! And thank you Kristina for all you do, for staying on the front lines, and for being a voice of reason in what is often an unreasonable world.

4:36 PM  
Anonymous Anonymous said...

I know little or nothing about the subject of autism.

Not too long ago we had next-door neighbors with an autistic child. At first, he seemed afraid to interact with us. Later on, he would speak with us, and seemed unafraid (especially when we were dog-sitting the kids' extra-sweet golden retriever). His parents were amazingly loving, and never exhibited outwardly any "woe is me" attitude. I know they had issues with his schooling, and had to change schools.

Neither family lives in that neighborhood now, and we've lost touch.

5:00 AM  
Blogger Niksmom said...

Wonderful post, Karen. Too bad Diane Sawyer has lost touch with her ability to see more than what her media peers perpetuate. I lost a lot of respect for her when I heard her closing comment.

I couldn't help but wonder how Charlie Gibson would have handled it instead...

11:38 AM  
Blogger Sustenance Scout said...

Kristen, if it weren't for you I'd still be pretty clueless about all this. Thanks to YOU for all you do!

Gerry, any issue with schooling that requires a change in schools represent a whole lot of stress and anxiety for any family, any parents, any child. I hope your old neighbors are doing well. Maybe some day every family will feel welcome in every school that's supposed to be designed to help them and support as well as educate their children.

Niksmom, I felt the same exact way. Any respect I might've still harbored for Diane Sawyer flew right out the window at the moment. Ack. I've always loved Charlie though the debate debacle a few months ago certainly didn't help his image. You've got to wonder sometimes what's going on behind the scenes to make some people say/do some things on camera! K.

2:03 PM  
Blogger Pam said...

You know, being the mother of a child with autisim, as well as one with Down syndrome, I could very easily place blame for the way things have been dealt to us on the enviorment, or vaccines, whatever.

It just simply isn't that way. These people who are not vaccinating their children are putting my medically fragile child at risk for getting a severe childhood illness that could take him from us.

I have always been current on his vaccines, except for when they had to be delayed for his heart surgery. During that time all I did was think OMG, he is totally going to catch something.

It happens people, quit trying to blame something that is out of our control on things that we THINK we can control.

Take what you have been dealt and and your child, and the rest of your family.

Thank you for this post. I have felt so strongly about this for so long, but just kept my mouth shut.

Okay, off my soapbox now. :)


5:56 PM  
Blogger Barrie said...

I wish I'd seen the GMA segment.Sounds so odd. I'm off to check out Kristina's blog. Thanks!

10:12 AM  
Anonymous Hattie said...

I know two people with mild Asperger's. They are both brilliant but unable to live on their own or hold down a regular job. But neither they nor their families seem upset by their situation.
On the other hand, I once knew a severely autistic little boy who was literally unbearable to be around. He would obviously have needed a good deal of professional care, and yet his mother was getting no help at all but instead was stigmatized as a bad mother. She was half insane from stress. His father had disappeared and left her to struggle with the boy on her own.
That's how it used to be and I imagine still is for many.
The Sawyer clip really irritated me. What's with the piano music, which, I imagine is supposed to be some kind of code for compassionate caring? All that sentimentalizing and fake empathy does people who need real help no good at all.

12:57 PM  
Blogger Sustenance Scout said...

Hattie, thanks so much for stopping by. I'm right there with you on your read of the Sawyer segment of that report. I could tell halfway through the way the piece was skewed, but she put the finishing touches on it. Blech.

I also know families with kids who are severely autistic. Maybe that's why I'm so impressed by parents like Kristina and her husband who work so hard up front and benefit not only their children with special needs but their entire (including extended) families in the long run. It takes years of effort and devotion. K.

1:15 PM  

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