We're coming up on the 1 year anniversary of Benny's diagnosis of autism, and lately something has been grating on my nerves. Invariably there is someone in every group of people who learn of Benny's diagnosis or who discuss autism in general who says that they "just don't know how you do it". They don't think they could parent a child "like that". Now, at face value this feels okay, like a gesture of sympathy or even awe - like I am the World Champion of Child Rearing. But it feels very different when you reach the 8th time you've heard this. At least for me, just thinking about hearing this from one more person has me dreading the awkwardness of the whole thing. And what I'm hearing is, "How do you love a child who is so difficult or unlovable? Clearly, you're a freak." As usual, the next time I hear this, I will turn red and look at the ground because I don't know how to respond to being looked at like I have two heads. What I wish I could say to them is much different from what I will.
First of all, my child is not unlovable. He is no more unlovable than any other child. He is bright, funny, curious, affectionate, charming, adorable, witty, and happy. He loves animals and babies and anything with wheels. If he so chooses one day, he will make a wonderful father to some very lucky children.
Perhaps because of these qualities, his diagnosis was very hard to take, but probably for different reasons than one would expect. Instantly, there was fear. But my fear has always been based on whether or not I was equipped for the job of raising a child who needed not only the same things as every other child, but a lot of different things as well. And there was the fear that no one would see what a beautiful, wonderful person he is. Would they ever see past his diagnosis? My fear was that I wasn't qualified to be his mother. It was NEVER that he wasn't up to the task of being my son.
I have days when I don't know how I do it, either. And then he makes progress. He reads a 3-syllable word. He figures something out and rushes to tell me with a big, confident smile on his face. He wraps his arms around my neck. He giggles. He sneaks the dog the rest of his peanut butter sandwich. He sings along with the radio when he thinks I'm not paying attention. He says, "I love you, too!" And I think, "How could I NOT do it?" Oh, I'm sure there are other options, but I'm not interested in them. I'm selfish, I guess. I love my son too much to think of bailing on him because it's "so hard".
I don't want to be treated like an outsider any more than my son does. I'm just being the best mom I know how to be, the same as every other mom I know. Autism isn't a death sentence. It just requires a little adjustment and a lot of understanding. So I'm neither a hero nor a freak, and it gets old being categorized as "other" as soon as I mention Benny's diagnosis. We just want to go to the park, and maybe grab an icecream cone after. If that makes us freaks, then me and Benny are going to our own little freakish corner of the park, where we will hang out and roar our terrible roars and gnash our terrible teeth...