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Sunday, August 19, 2012

Life without a handbook

I'm a believer in handbooks. I like to read what others advice. I am not one to jump into new things without studying them first. A trip for which I'm prepared is much more enjoyable to me than one I just happen into. So when I had kids, I read everything I could get my hands on about pregnancy, childbirth and then raising them.

It was not long at all into my first pregnancy that the books began to fail me. Although I was reading over and over how very rare pregnancy complications are, my body and my doctors were telling me otherwise. I read about the importance of exercise during pregnancy. My doctors told me at first to stay off my feet as much as possible, and then to stay in bed all the time. When William was born two months prematurely, it again threw off every book. I tried adding two months to every landmark he was supposed to meet, and still, he seemed stubbornly unable to stay between the navigational beacons. He sat and walked far later than he was supposed to, and he started saying words far, far before he was supposed to. I brushed off his clear "Daddy" when he said it at 8 months, which was 6 months corrected, until I realized he said it whenever the phone rang, as it was usually Tony calling. He just kept adding words from there, and not sitting up, and never liking the foods he was supposed to, and generally doing everything with total disregard for any guidelines.

But still---I read the books, although I was starting to suspect they didn't know all they thought they did. Freddy barely talked at 2 years. But somehow, I knew he was going to talk just fine when he was ready. I didn't worry, and I like to worry beyond almost anyone. Now, I doubt there are many people on earth as good at talking as my Fred. He's thinking of a career as an announcer, and has already gotten some offers along that line.

And then Janey. By that point, I had pretty much realized that either the handbooks didn't know much, or I just had a knack for raising kids who liked to confound me.

However, with the last few incidents of store-crying, I decided there must be something out there that could help me. I went two different routes. I looked up store tantrum advice for toddlers, and I looked for store crying advice for autistic kids.

Well, you can guess what I have to say about that. The central theme of everything I saw was explaining to your children. Evidently, if I told Janey what to expect in the store, stayed calm when she freaked out, and offered her a treat if she could keep her cool, she'd be just fine. There's a few problems with that. Janey probably understands more than we think, but she in no way understands enough to have a store experience explained to her. And the places she has freaked out are not new places, they are places she's been other times without an issue. She is not patient. She can't wait ten seconds when she wants something without breaking down. I can just picture how it would go over if I told her "don't cry or tantrum for the half hour we are in this store, and I will get you chips" She'd hear one word clearly---chips. And want them that second. And cry all the harder without them. As for me staying calm---I try very hard to do that. I might be able to, if I am in a store absolutely alone. But with every single eye staring at me, and some people feeling they must offer advice or show their disgust---well, I'd like to see anyone stay calm.

The autism-specific advice all tended toward kids with much more verbal ability and level of understanding than Janey. I can understand that. If I felt like writing some autism advice, it would be a lot easier to write it for higher functioning kids. I'm starting to suspect the truth. There is no advice that really works consistently when dealing with lower functioning kids with autism. There are stop-gap measures, like hugging her or giving her food instantly, and there are very long term measures, like having her learn more language through school and ABA. But the middle-term measures that would get us through a store trip, or a middle of the night scream---they don't exist.

And so I'm left living without a handbook. Sometimes I think I'd like to try to write one, but then I realize anything that might work for Janey might not work for any other kid "like" Janey. I put like in quotations as there is no other kid like Janey. That is true for all kids, but like how Orwell said some animals are more equal than others, some kids are more unique than others. If you are a fellow member of the club of parents of low-functioning autistic kids, you can wear that as a badge of pride. You've got yourself a kid that you are the expert on. No-one else really gets it. Whatever you are doing for your kid is most likely better already than any expert could teach you. It's taken me a lot of years of parenting to accept that I'm the expert on my own kids.

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