I have three children and my oldest, Oliver is six. He is a big boy—tall and strong—and all boy. He climbs trees and hurtles into swimming pools. He loves nothing better than a good patch of dirt. We jokingly call him Pig Pen since he will often return from such a spot, haloed in dust, his clothes emitting puffs of dirt with each step. Ice cream cones are a full body experience. Napkins are a joke. This degree of messiness requires a washcloth at minimum. His requests to “come look at this,” often involve a worm.
These are some of the qualities and quirks that come to mind when I think of Oliver. They are so defining. And they are almost all related to sensory integration disorder. Which includes auditory processing disorder…which translates into significant language and communication delays. It also affects his motor planning. My amazing son who can walk a balance beam like a gymnast, who taught himself to swim, who can carry a full basket of folded laundry up the stairs…can’t hit a tennis ball. He can’t follow simple directions to touch his left hand to his right ear and his right hand to his left ear. He can’t process that kind of information—hear it, understand it, do it. It gets scrambled. For all of his strength, coordination and love of physical activities, he can’t play sports. Or even tag.
This can change—but it will take time. And hard work. And money. And a label recognized by the public school system.
Having a special needs child is not something I ever thought about when I was pregnant with Oliver. Everyone knows that it’s possible, but I think we tend to see that possibility the same way we do car accidents and winning lottery tickets. We know it could happen, but we don’t expect it to happen to us.
And many of us don’t even know that it’s happened to us until our children are long past the early months of worry. The more serious worries over SIDS and their “ability to thrive,” and the less serious (but all consuming) concern about sleep schedules. Oliver was two when we discovered his delays.
He was absolutely perfect when he was born. Arriving one week late and HUGE, he was 9 pounds and the most beautiful baby I had ever seen (of course!). I’ll admit that my first impression was more along the lines of “red and squashy” but after a few hours, his looks made a dramatic improvement.
He was a stinky sleeper, but I got used to that. We had two years of healthy well checks at the pediatrician. He rolled over and smiled when he was supposed to. He was walking shortly after his first birthday and loved to be with people. He would walk into any party and make himself at home. He was the baby that you could hand off to anyone—no separation anxiety or shyness. In our innocence/ignorance, we actually said that it looked like we didn’t have to worry about autism.
How could I have known that in a couple of years, he would be diagnosed with PDD/NOS—the catch-all category of the autism spectrum. My friend Sarah defines this as “we don’t really know what is wrong with your child – but there is something wrong with him…”
I didn’t know that I would have an autistic son—or a son with sensory integration disorder or auditory processing disorder…. The labels don’t matter. They all equate to the same things: fear, worry, money, meetings, appointments, guilt, and heart-wrenching hope. I didn’t know that this would be the rhythm of my day—the back beat of my heartbeat.
But I also didn’t know that I would have a son who reads my emotions better than any other person in the world. He will come to me when I’m feeling low but looking as if I haven’t a care in the world, “Mommy, are you crying? Not crying?” He understands and can see “crying on the inside.” Most emotionally evolved grownups don’t see that.
I didn’t know that I would have a son who would teach me to be a much better person. To be more patient, tolerant and compassionate. He’s taught me not to judge until I have the full story. And to not even judge after that. I’ve learned that there is never just one right answer. And that sometimes there isn’t any answer at all. That we all do our best and sometimes that has to be good enough.
I didn’t know that I could admire one of my own children so much. And try to emulate him. Oliver’s first teacher once said to me, “life is very hard for Oliver.” And it was meant to be taken at face value—life really is hard for him. Things that come easily to others—asking for something, joining a game, understanding directions—are difficult for him.
Oliver navigates the world with an upside down map. He never speaks the local dialect. And in effect, he’s learned to work hard, be his own man and give others space to have their own differences. I think we could all try to be a little bit more like Oliver.
I would be lying if I said I never experienced moments of frustration or self-pity. Don’t we all? At the end of the day though, I consider myself to be very lucky to have three beautiful, happy, healthy children. They are all full of potential—yes, even Oliver. And as much as I hope, wish and pray for them, I don’t know what their futures hold. Motherhood doesn’t come with a crystal ball. We don’t even get a compass.
But there is something to be said for this lack of certainty. Not knowing allows us to dream. And that is what keeps us going when times are tough. For every bad day, there is the possibility of a miracle on the horizon…or at least some good days. And the best we can do is learn more about ourselves and each other in between them.
I once said that I didn’t think I could be a good mother to a special needs child. That it would be too hard for me.