On being humble

One thing I think autism teaches me is humility.

Of course, there is the general public humility. "My son was accepted into the advanced basketball camp" can just not be met by my boast of "Nathan managed to make it through day camp without biting anyone but himself." No matter how excited you are, you realize that boasting about your 7yo finally getting through the day without wetting himself just makes people stop and look strangely at you.

But there is also the humility within the autism community. There is so much "this diet/supplement/therapy worked wonders for my kid, and it can for yours too!"

We've done gluten and casein free diets. We've done the specific carbohydrate diet where the kids ate no cereal grains at all and we spent 45 minutes every night grinding up apples, pears and carrots to make a egg "waffles" the next morning. That's when we started buying eggs by the case.

I spent thousands of dollars to go to DAN! conferences to become an 'expert' at diets & supplements. Supplements which I fed to my kids by the hundreds. We've had supplements compounded. Supplements made up in pill, cream, and pudding form. Supplements I've tried to hide in chocolate that I molded. The kids picked up on the off taste right away.

We go to OT for sensory integration and go to Kris' Camp in AZ for our only family vacation. I studied ABA, VB and RDI in books and conferences and spent thousands of hours and thousands of dollars on supplies for doing various therapies. We hired and trained people to come into our home to work with the kids with programs we developed. Not only did we pay their salary, we paid taxes, workman's comp and Social Security out of our pocket. We've had therapists coming into our home, evaluating our parenting and housekeeping (lacking, thank you, I was well aware, at least in the housekeeping department) for almost 10 years now. We finally decided it wasn't worth having people at our home in the afternoon and we canceled home services.

One of my kids did respond to the diet. Less stimming, more attention. It was worth it. If he had been my only child with autism, I would have been so arrogant. YES! Everyone should try this, it's worth all the effort and money. My other child, not at all. The supplements we figured were a wash. If there was a difference, we couldn't see it. After several years of forcing them down the kids throats and having them poured out in the bottom of our travel bag by TSA, we gave them up thankfully. The SI therapy does seem to help, and we really like the therapists, so we keep going.

Some kids recover, or nearly so. Certainly enough to function like an only slightly odd member of fully integrated society. Interestingly, medical studies bear this out. Some kids do get better. Is it therapy, or is it just a big blip in development that later brain growth straightens out? I would guess both. Some kids are lucky enough to have this potential. Although I may believe it in order to excuse myself for not find the perfect supplement or therapy that would cure MY kids. For the rest of us, it may help but there is no recovery.

But the other thing we've found out is that even behavioral treatment that works for Sam does not necessarily work for Nathan. They are just completely different. So when we would say "well when Sam does X, we do Y and that always works for us" 2 years later we would have to eat our words, because Y just never works with Nathan.

I understand the excitement that breeds the boasts. And the need to compare even within the autism community. But when you're on the losing end of the comparison, it sure does breed a lot of humility.


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