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.
Before I knew my child had difficulties, my goals for him were simple: to enjoy life, love, and happiness—the same plan all parents have for their children. Having wealth, independence, and a few grandchildren were in there somewhere too, because that's just the way parents are. We want our children to be able to leave the nest someday and have the skills needed to go build one of their own.
When things started to get tough, my goals changed. For a while, it was enough just to have my son live to reach adulthood. In those days of his whirlwind activity and little common sense, I was sure I'd lose him. Just let him live, I prayed. Whatever comes next I will deal with, but don't let me lose him before he's 3 years old. When he made it to the age of 3, I prayed he would make it to 5 years. And when he made it that far, I prayed he would make it to 7.
Slowly, as he grew, his life became more stable. I realized there was a very good chance he would make it to adulthood. Then what? How would my son live as an adult? Would he be dependent on me? Or (an even scarier thought) dependent on someone else? Would he be naive and unsuited for facing the challenges of the real world? Would he land himself in prison? After all, social blunders that are no-no's when you're 6 years old become criminal offenses by the time you're 20. More than anything else, I wanted to enjoy the relative safety of normalcy. If my son was “normal,” then he would be ready at some point to face the world on his own. I wanted someone, somewhere, to find a way for my little boy to grow up to be just like all the other kids. I didn't want him to have a hard life, and I didn't want one for myself either. I wanted normal.
It took a few more years for me to figure out that “normal” wasn't going to happen. My boy wasn't going to be a typical kid. Not now, not ever. He would improve and build skills and mature, but his autism was always going to be there, waiting and setting traps here and there for the rest of his life. It was a hard realization for me. My goals evaporated. As I came to understand that there was no path to reach them, I let them go. Instead, I kept my eyes on today and what was immediately in front of us, ignoring a future I didn't want to contemplate. If he could be 10 years old forever, tucked here under my wing, I thought maybe then I could keep him safe, and perhaps I could make sure he had a happy life. I replaced my goals with denial to preserve my sanity.
I hadn't given up; not really. I was taking a breather. I indulged in an emotional trip past reality so I could heal myself enough to face tomorrow, enough to look down deep and find my sweet little boy again in that jumble of blue jeans and dirty sneakers and differences. He wasn't going to be a typical kid, not now, not ever, but that was okay. He was still wonderful, even with one foot in another world. His life would be filled with challenges, but that's what life is; with or without autism, everyone has hills to climb. He had skills and talents—we could build on them. His weaknesses wouldn't be so bad if he was aware of them and had tools to work around them. His life might be difficult, but that was okay, because I could help him find his place in the world.
So what do I want for him now? Life, love, and happiness—the same hopes all parents have for their children. Wealth, independence, and a few grandchildren are in there, too, but if those things aren't in the cards for us, it's okay. Happiness and security will be enough for me.
Many people with mild autism contributed to building our country's space program. Men and women who were fascinated with computers,