I’ve had some people ask me what the hardest part is of having an Autistic son is and I kind of want to smack them. Don’t get me wrong, it’s a fair question but really, it’s an extremely overwhelming question.
Let’s see, we’ll start with the basics like his refusal to eat most foods, he’s never touched meat of any kind and then add on the fact that the stuff he will eat, he can’t because it makes him out of control. Then there’s his constant temper tantrums, more so a year ago than now but still happen. There’s his constant sadness as he comes home from school telling us how he has no friends. There’s the fear we have any time anyone anywhere ever has to take care of him, whether it’s family, baby sitters, teachers, sunday school teachers… anyone. Please don’t enrage him, please don’t feed him! There’s the stress that goes into every outing… right now we need to go on a week long trip, we have no idea how we’ll feed him since hotel rooms and restaurants aren’t his best situations to be in. Then there’s the financial burden, not only is there $150/hr speech therapy sessions but simple things like gluten free food cost a lot more than normal groceries. Let’s not forget that we picked up and sold our house, at a loss, to get him to a city where there’s a school that is perfect for him. That’s a good start….
On top of all of this there’s one thing that is actually harder than all of that, one thing that my wife and I have sat down and discussed many times and laid awake at night thinking about…. Cameron’s future.
I think most parents think about their children’s future quite a bit, most dream of great things and have their worries. It’s safe to say that most parents simply wish for their children to have a better life than they did themselves.
However, when your child is Autistic, you have a whole other world of uncertainty added on… one where the dreams fade a little, one where the hopes of a better life become more a matter of hope than desire. When your child is Autistic, all you want for them, is to be normal.
I think some parents pray for a savant, a child who’ll find that one truly amazing and indescribable talent that will bring the media running and make your child a prodigy… but I think most parents, like us, only want for our child to be able to grow up happy, to be able to finish school, have friends, get a good job, have a family of their own and all those good things that many people simply take for granted.
I think, for me anyhow, the hardest part is looking to the future and thinking to myself, what if he doesn’t have that? What if his life only gets harder? I mean, having no friends is hard at the age of 4 but it can make a teenager suicidal. What if he never has a family of his own? No one to love, to care for him other than his parents?
We can sell our house at a loss, we can handle the craziness when someone slips him a cookie that he shouldn’t have, we can handle the tantrums and the sadness… we can even handle having to eat mr noodles for a while to make sure he gets the things he needs… but looking to the future is something I can’t really handle. It’s something I don’t like to think about.
I’ve learned that all I can do is put it out of my mind and focus on right now. I just have to keep eating those mr noodles, keep helping him through the tantrums, keep getting him into the schools and programs he needs and maybe, just maybe…. hopefully… the future will sort itself out. Because if I spend all my time dwelling on what’s hardest, I’ll miss what is the best…. and that’s here and now.