We Can't Look Back, Only Ahead

I will never forget sitting at my desk in my office at the University staring at the ultrasound pictures of my first two babies. Baby A had such a perfect profile, but there was something off about Baby B's slightly sideways profile.

We would later learn that Baby B would be born with a cleft lip and palate, something that we much later learned was caused by a deletion in one of his chromosomes. I beat myself up for a while for not pointing out my suspicions to either my husband, an oral surgeon, or my OB/GYN.

But what would it have changed? Nothing.

Our beautiful little Baby B would still have been born with a complete bilateral cleft lip and cleft palate. Looking back would have done no good. Only looking ahead would help him . . . and us.

Sometimes I feel that way about Slim's autism diagnosis.

By the time he was four years old, we noticed some strange behavior. He would begin every day by running in circles around the house. Or he would be watching television, get excited about something, and would have to run laps around the house.

There were the plastic play spoons he would always have to carry and his obsession about sharks. There was the way he would walk the perimeter of a room at a party or a new Gymboree class.

There was the way that he would memorize and parrot back commercials, television shows, and books. The way that he didn't really interact with other children his age.

And there was the way that he didn't really hug you; he just "leaned in."

He was enrolled in an Early Childhood Special Education Preschool program with other children who had speech issues for various reasons. Some had autism. I didn't want to believe that he had autism. After all, he talked to us and other adults all the time, he looked us in the eyes most of the time, and he didn't have some of the other severe behaviors that autistic children had.

But I asked anyway. I asked the preschool teacher and the pediatrician and the speech teacher. Then I asked the kindergarten teacher and the first grade teacher. Everyone said no, he's not autistic.

Though it was the answer I wanted to hear, something kept nagging me. Every time he said something that we didn't know how to answer or had a meltdown about something that we didn't have a strategy to handle or every time my heart broke watching other kids faces as they looked at his strange behavior, I thought: This isn't fair to any of us. 

They all said no until one day we accepted yes and they agreed. And we were relieved.

Only now I am mad and sad and upset. I am mad that no one saw it sooner. I am sad about all the time that has been wasted on the wrong kinds of therapy and treatment plans and all the times his Dad and I have yelled at him for being HIM. I am upset at myself for not demanding it sooner, for not "Google-educating" myself on how to better handle some of his quirks a long time ago.

Looking back, I wish we had started autism therapy so much sooner. Maybe things would be different. Maybe they would be better.

Slim knows that he has autism, and he has been reading up on it. He probably knows more about it than his dad and me combined. In fact, he said something very profound the other day about it and let me share it on Facebook.

He's eleven, and he talks of acceptance - something his fortyish-year-old mother cannot do. In the struggle to accept what is,  I must place myself firmly in the present with my eyes to the future because those are the only things that I can change. I can work on those, make those better.

April is Autism Awareness month; though some people would prefer it to be called "Autism Acceptance Month." That makes sense to me. I believe every parent in America knows what autism is and what the characteristics are. We all trained ourselves to look for those characteristics in our developing children.

We also all know an adult who is a little odd, but we never knew why. According to autismsociety.org, more than 3.5 million Americans live with an autism spectrum disorder, and that it is never too late for an adult to be diagnosed with ASD. We often look at people we think are strange and talk about different things and want to distance ourselves from them.

I want to share a story with you. My sister-in-law works on the campus of a major university in our town. She was walking across campus the other day in a hurry to get to a meeting. As it was a gorgeous afternoon and she is such a friendly person, she saw a young male student on his way across campus as well and commented to him about the lovely day.

And this young man stopped and began to tell her many details about the barometric pressure in the air and the exact weather patterns that aligned to make this a perfect weather day. She contemplated smiling and moving on as he was talking; but then she realized that she was looking at our very own Slim, a mere decade into the future.

So, meeting tardiness be damned,  she stopped, turned to the young man, and really listened to what he was saying. He stopped himself abruptly and said, "Oh, I'm not supposed to go on and on like this. You must have somewhere to be." She smiled and said she'd love to hear more about something he was obviously so passionate about.

And there we had a glimmer of Slim's future. A look ahead, past acceptance and straight on to what things will look like once his therapies get in place.

No use looking back. We can't change that. We can only look ahead and have hope for good things in the future - learning, practicing . . .

. . . and accepting.

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