Friday, April 01, 2011

5 Things I've Learned from My Autistic Son

If you’ve been reading the BookEnds blog for any length of time or have been following me on Twitter, you know by now that my 5-year-old son, Nicky, is autistic. Two and a half years ago Nicky was diagnosed with PDD-NOS (Pervasive Developmental Disorder – Not Otherwise Specified), which is an Autism Spectrum Disorder. Tomorrow, April 2nd, is World Autism Awareness Day, and I wanted to take this opportunity to honor my son and shine a light on autism, while giving our blog readers some food for thought.

These are 5 lessons my son has taught me that I thought were worth passing along to you:

No room for melodrama — My son is pretty literal. He doesn’t get into moods unless something very concrete (like a loud noise or nasty cold) is irritating him. He doesn’t intentionally exaggerate or tell fibs. With Nicky, what you see is what you get. There’s no affectation.

Since Nicky’s diagnosis, I’ve found I’ve lost all tolerance for dramatics. I have no patience for “he said, she said.” No time for petty arguments. No energy for relationships that produce more work than support. And no room for the people that perpetuate all of that melodrama. None of that feels real to me.

And there’s certainly no point to melodrama in the online community either. I shake my head at blog trolls, Twitter wars, and jealous author rants. It’s a waste of energy. Energy that would be better spent on just about anything else — like writing.

Don’t compare yourself to others — One of the most unique, beautiful, but frustrating things about Autism Spectrum Disorders is that darn Spectrum! All children are affected by the disorder in different ways and at different levels. Some have trouble making eye contact with you, but can otherwise communicate appropriately. Others are highly intelligent, but have strange tics or self-stimulatory behaviors (flapping, jumping up and down) and don’t interact with peers. Then there are those that are completely nonverbal.

Every child in my son’s Kindergarten class has his/her own strengths and weaknesses. They each have their own unique challenges, which can make it very difficult for a teacher to find ways they can all be taught together. It’s pointless for me to compare my child and his abilities to another child in the class. And even MORE pointless for me to compare him to a typical child. I can only focus on Nicky’s individual needs and celebrate his own personal successes.

But then, none of us should be comparing ourselves to others. Certainly we can be inspired by the success of others, but there’s no point in obsessively comparing our work — or our lives, for that matter — to another’s.

It’s not about me — This is the one I struggle with most. I’m one of those people that loves trying to come up with the perfect gift for someone (Jessica’s even better at it than I am). I spend sleepless nights trying to think of what book will strike my mom’s fancy, what doll will make my daughter’s face light up, what day trip will create the most lasting family memories.

Well, I have to admit that Christmas and Nicky’s birthday always bring a little bit of a letdown for me. Nicky just doesn’t react to gifts and surprises like other children do. So when his eyes don’t light up and he doesn’t squeal with glee, a little piece of me mourns. But then I remember it’s not about me. Just because Nicky’s not able to give me the kind of feedback I crave doesn’t mean he’s not happy. Giving a gift should be about the receiver.

Keep expectations high — It’s hard to admit, but I definitely underestimate my son sometimes. I don’t always ask him about his day or engage in conversation about more abstract things, because I’ve tried before and been disappointed. But every now and then, he’ll surprise me. Just last night I stepped back and discovered for the first time that he could button up his pajamas by himself. I’m not always as patient as I should be and so I often just end up doing it for him. But these little steps forward are big celebrations at our house. If I keep my expectations low, my son will never have an opportunity to rise to them.

We often keep expectations for ourselves low too. Set your goals high. You just might surprise yourself.

Books can be transformative — One of my son’s strengths is reading. Ever since he was a toddler he’s loved letters, phonetics, and all kinds of books. Nicky has difficulty putting on his own shoes, but he’s reading above his grade level — and comprehending it.

In school, he has difficulty sitting still, makes strange sounds, and doesn’t focus during his lessons. But the teacher says that the one time of day that he sits still and really listens is during story time. If the teacher is holding up a book in front of him, he’s hooked. It’s the one part of his day I can get him to recall when he gets home.

Books definitely make Nicky’s world brighter. Mine too. So keep writing! You could be changing somebody’s world.