I have two sons. One is neuro-typical, though legally blind, and the other is autistic. As a single mother who works from home, I have both of my children all of the time. It can be a bit of a juggling act, holding the autistic child back while encouraging the typical child to inch forward, but it wasn't until I spent an entire day with just my typical son that I realized I was doing it wrong.
One day I found myself taking one child to the doctor while the other went to school. My typical child, Tristan, had to go to the ophthalmologist, but there was no reason for my autistic son to tag along, so off to school he went. My older son, the typical child, was quite happy to spend a day just with Mommy, even if it involved a doctor, so off we went. The doctor didn't take long, so we decided on the zoo as something to kill two hours before we had to pick up his brother.
We'd been to the zoo many times before, but this was different. Always, when I had both kids, we had to be careful. Mustn't go near the seals or the little one would have a meltdown. Avoid the play structure area because it's too scary. And don't walk in the sand. Do NOT walk in the sand.
This time, however, there was an immediate difference. We didn't avoid certain areas. Tristan could wander where he would and I trotted calmly behind. He was free to explore without having me call him back because his brother couldn't cope.
And then it hit me. I was parenting down, satisfying the lowest common denominator, instead of requiring more of us all. I felt it was just more fair to say no rather than allow Tristan to do something while I was forced to keep his little brother back, possibly while having a little meltdown over whatever big brother was doing. Now, to be clear, Tristan had never once complained when I had to say no, or felt I had to say no. He's an easygoing child, one who adapts to what's thrown his way. But that didn't make it right.
I watched him at the zoo, watched his little personality bubble forth without needing to be held back, and I realized I wanted my younger son to have that experience too.
That's when I knew I'd been guilty of the same mistake parents of special needs kids have been making since the beginning of time. I was parenting to the disability, to the disorder, and not to my son. He is autistic, but he is not autism. Autism is a part of our lives, but it cannot be our whole life. If I constantly parented down, catering to the lowest common denominator, I was doing everyone a disservice.
Especially my older son. Sometimes it is all too easy to focus on the child with the most severe disability, to get tunnel vision. And we, all of us, too frequently use autism, or any special need, as an excuse. It's the reason a child doesn't go to parties. It's the reason we didn't take the family to the movies last weekend. It's the reason we didn't go camping last summer. And in catering to this, we're stifling the potential of all our children, not just the special needs children.
Autism is scary and sometimes unpredictable and frustrating (why won't you eat white foods!), and it can be difficult to not focus on it all of the time. But I knew, for the sake of my small family, that I had to try. I had to stop parenting down, and start parenting up. I had to get rid of the lowest common denominator altogether. I had to expect more of everyone, including myself and my autistic son. If I could do that, all of us, perhaps especially my older child, would have a better life.
It didn't happen overnight. As anyone with an autistic child will understand, you don't just toss him onto the terrifying sand and expect miracles. The process involved a lot of coaxing, a lot of patience, and pure stubbornness on my part. We were going on that sand. Maybe not on day one, but definitely by day three. And day four meant we were visiting the seals. My little one didn't have to like it, but Tristan loved the seals and it was about time everyone got to see what they wanted. Autism or no autism.
Yes, we spent every single day at that zoo. Then we hit the playground to repeat the entire process with the rope bridge. Again, he didn't have to walk across the rope bridge himself. He just had to not have a total meltdown when his brother ran across it. Not too much to ask.
I no longer allow the, "Your brother doesn't want to," or the, "Your brother can't do that," to be a reason for not doing something. We even went to a movie as a family, and that's not something my little one likes at all. Too much of everything going on in there. But...too bad. One movie won't kill him, and we did something he wanted to do right after. Yes, it was hard. Yes, it would have been easier not to. But easier is not right.
Tristan, my older son, matters just as much as my little one. He is a whole child all on his own, a whole person with thoughts and feelings that count. He is one half of all the children I'm ever going to have. He needs to take center stage a full half of the time.
That was more than two years ago now, and autism is still with us. There is no cure and my little one will never love the sand. He'll also never truly enjoy going to a movie. But he copes. He copes for his brother. He copes for me. And he copes for himself.
He is only one half of my children, after all. The other half deserves the freedom and joy he now experiences every day.
