Today my son is eight and we are heavily enmeshed in the world of autism. But the road to get here was long. Luckily we got an early diagnosis, which is key in getting early intervention. Early intervention is the one known indicator of life-long success for individuals with autism.
It wasn’t easy to move from the typical world into the world of autism. Here is an essay I wrote about that process.
Originally published in Special Gifts, June 2007
I’ll always remember the day in January when I betrayed my only child. I stood watching him eat his lunch, so innocent and completely unaware as I listed my concerns to the woman on the phone. I looked away as I continued the list and moved into another room, desperate that he not hear me.
“He’s lost words he’s mastered. He’s not building a vocabulary. He has an unusually long attention span. Sometimes, it’s hard to get his attention,” I told her. As I looked at Theo happily stuffing his mouth with peas, I couldn’t believe I was having this conversation. One month shy of his second birthday, my son was blonde, brown-eyed and charming. He was perfect. He was beautiful. What was I doing?
That phone call began a new life for me and my family. A life that now includes autism spectrum disorder. It was the day I officially admitted something was wrong. I’d done the research. I knew Theo showed signs, just not a lot of them. Despite family and professionals telling me to “wait and see,” assuring me Theo was fine, I knew he was different from other kids.
I am drawn to people who defy convention, but the more I read, the more I suspected that his quirks were not entirely harmless. So I stepped off the roller coaster ride of, “Does he have autism. No, wait, he’s fine” and called the county hotline. When I hung up, my hands shook, and I felt nauseous. Somewhere, mothers who question their child’s perfection are punished. Somewhere, they are publicly revealed as cold, heartless traitors. I felt alone and utterly exposed.
Despite my feelings, I made the appointment. After the school team came to evaluate, after the tests and meetings and worry and denial, we got a label of PDD-NOS (Pervasive Development Disorder-Not Otherwise Specified). We haven’t had the party yet, but we’re welcoming autism into our life. We’re also recognizing its unique manifestation in our son. And we’re discovering that he is much more than that label. The stories we’ve heard and read are not his story. We’re creating our own version of life on the spectrum. And, most days with support, we’re doing it remarkably well.
I’ve done my research, and I’m rarely surprised by what his therapists tell me. But nothing can prepare a mother for grieving the loss of a child who still lives in her home. It’s the kind of grief that blindsides you when a Hallmark commercial comes on. One where the boys grows up playing ball with his dog and graduates from college.
I thought I had no expectations for my son. I refused to start a college fund, because I didn’t want to place that expectation on him. He could be a carpenter like his grandfather, a drifter/hippie like his uncle or a physicist like his father. Whatever he wanted to do was fine with me. But this diagnosis slaps me in the face with the little expectations I do have. The ones that other parents don’t even recognize. I expected my son to play catch with his dad out in the backyard. I expected he would run wild at the playground, trying all the equipment, climbing, sliding, swinging. I expected we’d talk about everything. I’d show him the world, pointing out fascinating sights, and he’d join me in exploration. He’d absorb my knowledge and wonder and it would spark his imagination. And I expected all this to happen naturally, without any therapy or interventions.
That’s not our life. I see that life all around us, on television and on the playground. Now I know we’re on a different time line. We’re in different world. I expect that my son will do all these things, but they’ll happen later, and we’ll have to work hard to make them happen. So I grieve those little things we have to work so hard for.
Things have always come easily to me and if I don’t do something well, I simply stop doing it. It’s a pattern I learned in childhood and it’s stuck in my adult life. With autism, I can’t quit even though it’s hard. Few skills come easily to my son, and he’s one thing I’ll never quit. So now I’m learning new patterns, breaking a cycle.
We work hard every day. He, more than me. And we rejoice in such small things. A turn of his head to follow a pointed finger. Following through to pick up the intended object. Going up the stairs on his own and sliding down an unfamiliar slide. Greeting his dad after a day of work and saying goodbye to his best friend before she’s halfway down the street. These are all triumphs and we celebrate them as such, sometimes with tears in our eyes.
Through all the tests and therapists and interventions, my son has maintained his core personality. He is a sweet, caring boy who is quick to smile and laugh. He’s a nurturer, like his father, and smart, very smart. As his language emerges, we learn daily how much he’s absorbed from us. I’ve learned that those cardinals and bunny tracks I pointed to last winter weren’t ignored. They were experienced, just in a way I failed to recognize. He is absorbing everything I say and show him, even though the spark is beneath the surface. And slowly, day by day, I am learning to draw it out.