Читать книгу We Said, They Said - Cassie Zupke - Страница 15

If you tell someone that your child has autism, there's a good chance they'll give you advice. Depending on how much they think they know about the subject, it may be a little, or it may be a lot. A whole lot. They don't have to know you well or know your child at all—they've got answers, and they want to share them.

The advice is kindly meant. They want to help me and my child, and bless them for that. But sometimes the advice just adds to my confusion, and sometimes it's downright insulting. Some of it assumes that simple parenting skills, which I apparently lack, will fix my child. And heaven forbid I don't actually follow the advice people give me. They've handed me the solutions that will help my child, and I'm ignoring them. What kind of terrible parent does that make me?

When my son was little and not talking, I was told many times, “If you would just make him ask for things when he wants them, he'll start to talk.” Well, I was already doing that and it wasn't working. Human communication is a lot more complicated than just expressing wants, even for a 3-year-old. School districts must agree with me, or they wouldn't be spending all that money on giving kids speech therapy.

Apparently, spanking your child is also very effective for curing autistic traits. I'm not sure how spanking affects brain development, exactly, but from the suggestions I've collected at the grocery store, I've learned that “knocking some sense” into kids not only takes care of autism, but it puts an end to all kinds of behavioral difficulties—even those caused by other neurological conditions. Or so I'm told.

Once I was informed by a doctor that it was obvious my child was depressed because he wasn't making eye contact. But, for only $5000 worth of treatment (which was not covered by insurance), this doctor could cure my son's depression and his autism, too.

Parents of other kids with autism tell me that my child can be cured. They've got lists upon lists of therapies I simply must do, no matter what they cost or how little evidence exists to prove they work. If my son still has autism, I'm to blame, because it means I don't care enough about him to do what it takes to give him a happy life.

A lot of people have told me that the schools can fix my child, but they don't want to because it's too expensive, and teachers don't like kids much anyway. But, they say if I hire the right lawyer or advocate, they can make it happen. There's just no way my child will get into quality programs unless I file due process against the school, even if I like his teachers and even if my son is showing good results with the programs they provide.

My child's doctor said he should take medicine, but people on the Internet say it will hurt him, so instead I should give him copper, magnesium, supplements, Epsom salt baths, and this really great stuff that you get at the health food store. It comes in a purple bottle and the lady behind the counter says it really works great and is completely safe, no matter what other medicines my child is taking or what his diagnosis is. I don't think so.

I've been told my kid belongs in special-education classes. I've also been told he should never ever be in special-education classes. I've heard it's okay to start him there and work toward including him in regular classes, but you have to watch the school really carefully to make sure they don't just leave him in special education and forget about him. Some people tell me the schools never want to include our kids in regular classes because it costs too much to pay for aides and supports. Others say the schools want to shove all our kids in regular classes because it costs less. They also tell me that the school will lie about the best placement for my child and that the main goal of teachers is to kick out the children who aren't “good enough” for their school. The one thing everyone agrees on is that if I let the school put my son in the wrong class, then I'll damage him forever.

I've heard that instead of sending my child to school, I need to homeschool him, or else attending regular school will harm his psyche irreparably because that's what happened to the child of someone they heard about on the Internet. On the other hand, everyone knows that if my son doesn't go to school with other kids, he won't learn how to get along with his peers and he'll be weird all his life.

People have told me that to help my child I have to take away the things he loves best—that I should never let him play with his trains again, even though he really, really likes them. But a doctor once told me I have to make him take his trains wherever he goes so he'll build up an aversion to trains and never want to be around them again and that this will cure his obsessive nature. They all agree that the sooner we make him give up one of the few things that makes him happy, the happier he will be.

My son is in special-education PE, but I've been told that since he can catch a ball, he doesn't need it anymore and that I absolutely have to move him to regular PE. But someone else told me that in regular PE he'll be exposed to a lot of bullies, especially in the locker room, and by the way did you hear what happened to that kid three states over when his mom put him in regular PE? Another someone asked me how my kid is going to learn to deal with the jerks if we always protect him from bullies? And also, don't bother reporting bullying incidents to the school because they don't care if your kid gets hurt.

Let's not forget that wonderful professional who once explained to me that I had caused my child's autism because I didn't play with him enough when he was a baby. She firmly believed the “refrigerator mother” theory, even though it was disproved more than 30 years ago. Her advice was that it was too late now to fix my child. I should keep working on it, of course, but I shouldn't get my hopes up.

Over the years, I've gotten a lot of advice. Each person who's offered it has given it out of the kindness of their heart, because they wanted to help me and my child. Each person knew they had found the answer to our problems, and if only I followed their guidance, my child's life would be better. Most days I can thank them for their compassion, even if from where I stand, their advice is useless to me. But some days I can't. Some days I'm lost in the forest of demands, emotions, exhaustion, information, and decisions that autism brings, and my politeness slips. It's not okay that I'm rude, but sometimes I am.

It's fine that you offer me advice. Getting advice is an important way we gather information so we can help our children. Sifting through that advice to pull out the nuggets of wisdom is part of my job as a parent. I may use your ideas, or I may not. Or I may tuck them into my pocket, and someday when I'm really at my wits' end, I'll remember them. So please don't push me. I may not take your advice today, but I may use it tomorrow.