Emergence

By Shannon Andreson

I’ll always remember the day I betrayed my only child. I stood watching him eat his lunch, completely unaware, as I listed my con­cerns to the woman answering the county hot­line. I looked away as I continued the list and moved into the other room, desperate that he not hear me. He’s lost words. He’s not building a vocabulary. He has an unusually long attention span. Sometimes, it’s hard to get his attention.

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 looked up autism on the internet. I knew Theo showed some signs, just not a lot of them. Despite fam­ily and practioners 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 conventions, but the more I read the more I suspected that his quirks were not entirely harmless. So I stepped off the roller coaster ride and called. 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 vulnerable.

But I made the appointment. The school team was coming out. They’d do their tests and finally we’d know for sure. And eventually we did know. After tests and meetings, heartache and worry, disbelief and denial, we’ve got a label of PDD-NOS (pervasive developmental 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. We’re beginning to realize that he isn’t a label and that the stories we’ve heard and read are not his story. We’re creating our own version of life on the spectrum.

I’ve researched a lot and little that his therapists say surprises 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 boy grows up playing ball 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 would play catch with his dad out in the backyard. I expected that he’d run wild at the playground, trying all the equipment, climbing, sliding, swinging. I expected that we’d talk about everything. I’d show the world to him, pointing out fascinating sights, and he’d attend to my words. He’d absorb my knowledge, and it would spark his imagination. And I expected all this to happen naturally, without any therapy or intervention.

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 table. We’re in a 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 that, those little things we have to work so hard for.

I pick up things quickly and rarely have to work hard to succeed. Things come easily to me. 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. Now with autism, I can’t quit even though it’s hard.

Few skills come easily to my son, and he’s the 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 stairs unassisted and sliding down a slide he’s never seen before. Greeting his dad after a day of work and saying good bye 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 these tests and therapists and therapies, Theo has maintained his core personality. He is a sweet, caring boy who is quick to smile and quick to 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. It’s just that the spark is beneath the surface. And I’m slowly learning how to draw it out.