April 16, 2011 by Marj Hatzell
I’ve been thinking for a while about how to write this post because I didn’t want to offend anyone or anything and I tend to want to keep things upbeat. And this is a topic that is tough to keep upbeat because, well, it sometimes makes me a wee bit angry. I’m talking about expectations for your special child. Self-fulfilling prophecies. If you don’t shoot for the moon you’ll never see the starts. You dig?
Too often I hear excuses for autism. You’ve heard them too, I’m sure.And when I hear them, I cringe for the child because they are worth SO MUCH MORE. They can do SO MUCH MORE. Too many times a day, I hear:
“He can’t do it. He has autism.”
“She can’t help doing that. It’s her autism.”
“He is sick a lot because he has autism.”
“She doesn’t have friends because of her autism.”
“We don’t get to go out much because of autism.”
Look, y’all. Let’s place credit where credit is due, shall we? Autism is a LIFE ALTERING thing. I’m not trying to make it sunshine and rainbows, even though I’m a sunshine and rainbows person. It’s tough. It changes lives. It makes day-to-day living challenging. But it is not an excuse.
I bring the boys out in public. They don’t stay home all the time because of their autism. They learn to behave in stores and restaurants. We expect them to sit properly in the car. We don’t let them get away with being cheeky and rude and we teach them manners. We constantly seek out ways for them to be with children their age.
Are we perfect parents? AWWW HELLLZ NAW. But we expect, we demand, that they act like children and not heathens. I can’t tell you how many people I know let their kids “get away” with not doing things. Perfectly able-bodied kids. Kids that cannot do things for themselves. So-called “Typical kids” who can’t clean up after themselves, clean their rooms, remember their homework. And it makes me angry because we spend every minute of every day pushing towards the goal of making my kids function like “typical” kids. And some of the typical kids we are trying to be like? Can’t do (or won’t do) anything for themselves. It makes me want to cry.
Look, y’all. Bugaboo has some pretty significant issues. But he’s learning to wash his own hair (and does pretty well), brush his own teeth and dry himself off. He can wash his hands. He can put his shoes away and hang up his backpack when he arrives home. He can feed himself. He can unload silverware from the dishwasher. He can run a vacuum. He can put his dirty dishes in a sink. He dresses and undresses himself. He is mostly independent on the toilet (we are still working on bowel movements, but since he has major bowel illness, it might take a little longer). What’s my point?
Kids need to learn to do things for themselves. As soon as they are physically able.
My kid will be an adult in the blink of an eye. He needs to be able to care for himself. And even though he might never be totally independent? He will function as well as he is ABLE. He will behave in a restaurant. He will wait in line patiently (even though this is difficult for him, he still does a decent job). He will not eat like a wild animal at the table (still in progress). He won’t scream and throw tantrums in stores. Why? Because we have expectations for him. We EXPECT him to behave like a child. A well-behaved child. He can learn. His autism doesn’t define him or limit him. And as severe to profound as the doctors think he is? Poppycock. He can still learn. And he will learn. Because when folks expect him to be low functioning and never amount too much? Then that’s all we will get out of him. But if we strive to have a child who can function independently, work at a meaningful job and take care of himself to the best of his ability? That’s what we’ll get out of him.
The same goes for medical issues. Too often I’ve heard, “He has tummy issues because autistic kids have tummy issues. He has seizures and headaches because autistic kids have seizures and headaches. He behaves that way because autistic kids behave that way.”
NOT ACCEPTABLE TO ME.
Autism is not an excuse. Just because he is autistic and has tummy issues doesn’t mean that’s the only cause. And I won’t stop until we figure out why he has those issues. Just because he has behavioral issues doesn’t mean we throw up our hands and say, “Oh well! Autism!” That’ unacceptable to me. It’s my job to get to the bottom of them and make him the best he can be in every sense of the word.
Even though it’s challenging.
Even though sometimes I get pretty darn tired of it.
Even though sometimes I want a break and cry.
Even though it’s really, really hard.
I expect more for my child. I will NOT give up. I will NEVER give up. Because I expect that someday he will be an adult that will be valuable as a human being and will contribute in some way to society. I expect that he will have quality of life. I expect that it will be a tough road to get there. And that’s fine with me.
It’s my job.