I recently read a blog entry by a fellow blogger that made me think. In the entry, the blogger said that he thought that people who say they wouldn’t change their child with autism for the world were lying. And on the surface, I can see where that thought would come from. There are many, many days that I have the thought, “Oh, I wish we didn’t have to do this…” But in the end, it’s not Squeaker that I want to change. It’s the situation. This is an important distinction to make.
Why It’s an Important Distinction
And maybe I’m just playing the semantics game here, but I think it’s an important distinction. For the love of my child, I have to make the distinction. Because I adore him. I love how he notices when I’m sad and, even though he doesn’t understand it, tries to cheer me up by making faces at me and then asking me if it’s all better. I love how he loves making his brother laugh. I love how he can be such a good helper; bringing me diapers for Big Guy or locating the pacifier. I love his little giggles, the off-tone singing he does when he’s happy, and his passion for Mini Coopers (the genuine shock and excitement every.single.time he sees one is precious).
I Love This Kid!
In short, I love everything about him. And everyone who meets him is enamored by him because he’s got an infectious personality. You just can’t help but love this kid.
The things I would change have NOTHING to do with him. And I’ve come to terms with the autism. He has it, and that’s that. So, naturally that comes with a set of issues. At five years of age, he’s still not 100% potty-trained. He bites himself when he’s upset. Sometimes he strips when he’s upset. He shows very little physical awareness of others (in other words, when he’s in a somersaulting kind of mood, WATCH OUT). His language skills are severely delayed. Yes, he can talk, but there are things he says that an outsider wouldn’t understand (for instance, if he says his belly is full, he needs to go to the potty). I have no clue what he does all day because he can’t tell me. I cannot have an actual conversation with him. He will only exchange 3-4 sentences if you’re talking about something he’s interested in. He is easily upset. He is extremely picky about what he eats. He’s difficult to dress in the mornings, etc.
It’s the Autism – Not Him
But all of those issues are related to the autism. They are not who he is. Because my boy is a joy to be around when everything is going exactly the way it should. He is sweet and loving and precious.
So what would I change? Mostly, I would change my reactions. I would like to be able to anticipate a meltdown before it happens. I would like to be as versatile in coming up with ways to calm him down as he is at changing what calms him. I would like to know the way his brain works so I could communicate with him better. In addition to changing my reactions, I would change the way the world reacts to him. I would like to see more parents educate their children on special needs children and how to react when they see one. I would get rid of bullies who pick on children who don’t know how to defend themselves or even understand what’s going on. I would change the world to make it better for him if I could.
I Cannot Change the World
Unfortunately, I cannot change the world. Therefore, as his mother, I reach out for resources to help him. Resources to help him learn to deal with his emotions. To learn how to self-soothe without self-harm. To teach us methods that actually work for him as an individual (rather than give us statements of what works for “most” kids). I advocate for him because he’s important and he deserves the best. Because he’s an awesome little dude, and I would give my left arm to see him thrive.
Bottom line: I wouldn’t change him for the world. But I would change the world for him. And that, my friends, is the truth. However, I can’t change the world, so he has to learn how to deal with the world as it is. And we will go to the ends of the earth to find him the support he needs to do that.
Originally posted 2012-01-27 03:54:00.