There is a whole generation of top notch professionals at our local autism center who "grew up" with Sam. The first time he did an intense therapy session (ABA/discrete trial training) his behavior therapist was brand new and there were 3 different PhDs in various levels of "officialness." One of the entourage from those early days was Dr. K. Although she did an excellent job when she worked directly with Sam, it was something she did later that leads me to this thank you.
I'm sure there is lots you have heard about autism. Some things may be true, like the difficulties with language and social interactions. Other things may be misleading and untrue, like that individuals with autism are incapable of showing affection. One thing you may not know, or understand the implication of, is that many children with autism have feeding issues. You may be thinking that means they can't chew and swallow (our fancy speechie word for that is dysphagia.) What it usually means is that they have a very limited number of things they will eat and they eat those few things under certain conditions. What's the big deal? Nothing if you live in a hunting and gathering society where everything is grab what you like and go. But if you live in a society that intertwines eating with socializing, autism is a double whammy.
Stop and think about any major holiday you celebrate for a moment. What comes to mind? Well, Thanksgiving has it's turkey. Hanukkah has it's latkes. Remember the Who's and their Christmas roast beast? Before you watch the Fourth of July fireworks, what do you do? Stuff yourself with hotdogs and potato salad. Every gathering brings us together to share a meal. Unless your child has autism. Then you spend your holiday not sharing a meal with loved ones. Actually, you never eat a meal as a family. Ever. It also limits your choices in eating out. You can either go to McDonalds or hope you aren't asked to leave someplace that isn't McDonald's because you brought McDonald's with you.
Which brings me to Dr. K. During an Autism Society conference, I wandered into a presentation she was giving about how to get kids with autism to increase the variety of their diet. She said, start with something they eat, like fries, and change it by small degrees until it's a new food, like a baked potato. She also said to pair undesirable foods with desirable, again, using small steps. First, they just let it stay on the plate. Then they put it on their fork. Eventually, the expectation is they will eat it. Yes. It was a very slow process. But like I said, we are a society that revolves around food. Not eating, whether from stroke or autism, can be a HUGE social barrier not only for the individual, but for the entire family.
When I started, Sam ate McDonalds chicken nuggets, eggs, salami, pizza, and grapes. He was deselecting every day. There was not one vegetable he could tolerate. It took many years, lots of gagging, and occasionally cleaning up vomit during dinner, but we did it.
The best part is that Sam sat and enjoyed sharing the big 3 holiday meals this year: Thanksgiving, Christmas and Easter. He even commented on the Thanksgiving dinner by saying "Mmm, good" to my cousin, unsolicited. You the reader may not think that's a big deal, but Dr. K-G...you so know what that means to me.
For a long time after I heard Dr. K-G speak, I would send an e-mail to say "guess what he tried last night?!?!" I realized tonight that I have no more "guess what" stories because now...what he tries is no longer a big deal. Sam eats like any other kiddo. No more fighting and crying about eating at the dinner table. He no longer fights, so I no longer cry. Never thought I would see the day.
Dr. K, thank you for some very good advice about how to get my kid to eat. It has not only improved his health, it has also expanded his social circle and decreased the social isolation that can envelop an entire family.
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