Monday, July 13, 2009

A Fresh Start

Today I begin to blog about raising a child with Autism. My son is eight years old -- ginger red hair and grayish green eyes. For the past five years my husband and I have carried his diagnosis on our shoulders like backpacks brimming with rocks. It is not the life we thought we would have, eight years ago when he entered our lives -- a beautiful baby, slick and wet, a seal pup twisting on a scale -- a healthy 8 lbs 14 oz boy. He is our second child, all arms and legs and a flash of red hair.

It hasn't been an easy road but it's certainly been an adventure. I have had way too many sleepless nights and crying jags in grocery stores, airports, post offices, bathroom stalls -- you name it, I've cried there. Today, I don't want to be so overwhelmed by the sadness and the work. I want to be able to laugh, freely, without fear of what's ahead of me. The sad moments are too heavy. I want to explore the happier moments, the funnier moments and the tender moments.

Tender moment today. Sean is stimming in his room. I can hear him clapping and hopping. Occasionally he hollers out "Mommy?" If I don't answer him, I can hear the notch of panic in his voice, "Mommy?!"

"Yes, Sean, I'm in the kitchen."

His pressing question?? "What does January start with?"

"J", I answer. Already today I have answered that question fourteen times. It's stuck in his "loop" (for lack of a better term) and he will probably ask me this another fourteen times before bedtime.

When I open his door, he is sitting cross legged with a marker. He has managed to write squiggles all over his arms, legs and face. "What does June start with?" he says without missing a beat.

"J", I say, "Now hand over the marker."

"What does marker start with?" he says handing me the marker.

"M," I say placing the cap back on.

"M like Mommy," he says pleased to make the connection.

I nod and smile. All roads lead to Mommy in my son's world. I am his GPS who helps navigate him through this tricky world. He needs me. And, frankly, I need him. He is my compass directing me toward what matters -- what really matters.

Maybe not all people will value this little boy who has tatooed his alabaster skin with green marker. I don't know how to teach others to see how valuable he is.

But what I do know is that I don't want to be the mom that everyone feels sorry for. That is not my life. There are terrible days, indeed. But the good days? They are like nothing else. How hard he has to work and how willing he is to make the effort. He has no agenda or hidden motives. He doesn't know how to manipulate. He is a boy. A lovely boy. M is for Mommy.

M is for Mommy.


Susan said...

This blog is so great--thanks for sharing!

Linda V said...

Beautifully put. You are an amazing mom and an amazing writer. Thanks for putting into words what so many parents are feeling.

elaine said...

Katie, you have such a brilliant way of creating the best of any situation. Your writing is, as usual, wonderful. Keep up the good work.

Vern said...

Katie -

Without sounding corny...I am so moved to read your blog! Trust me, I don't get moved very easily.

I feel lucky to have had a small part in Sean's education the past few years. Hopefully, it was positive for him to see me at school. I will miss seeing "Seanuary" at school everyday. I will miss him passing me in the hallway ALWAYS greeting me, "Hi, Vernuary. What's Jacob & Grace's favorite TV show?"

Your words are powerful and I hope they help others that get a hold of it. I know it has helped my family...Jacob was invited to ride the Portland Spirit (the large boat ride up and down the Willamette) with a friend who has a form of Autism. His mother sat at brunch explaining why her son behaved the way he did to Jacob...Jacob said in a matter of a fact way that kids do, "I know about Autism, my friend Sean is Autistic. We play together sometimes. Besides, my parents have explained it to me and I am Ok with it."

Gracie still says when she sees you, "I think Katie is funny. I wish you were more funny like that." I can use some of your humor! Thanks for sharing...

Hope to see your entire family soon!

federal chickens said...

Absolutely brilliant. I will never feel sorry for you-I will just admire your strength! Krista

Jen from Portland, Oregon said...

Good for you, Katie - I love your blog!