An Autism Prayer: Am I Doing the Right Thing? Show Me the Way

This is Day Two of the Ali Family #AutismTruths – April 2, 2017 – World Autism Day.

Dear D,

When you were three, they gave you an Official Diagnosis of Autism, said a bunch of things to your Baba and I, put some literature in our hands and sent us on our way. You were our darling son, beautiful and so far away from us. Yet to call us Mamma or Baba with any purpose, barely paying attention to the newborn baby of a little sister who cried beside you.

I had no clue. None. Nada. Zip. Autism information on the internet was merely a blip, social media and Facebook parent support groups were years away. And, I was left with a list of schools and some basic information to try and map out a path for you.

I found you a school. We were living in midtown Manhattan and this school was downtown. You had never left me before. The first day I took you there by myself, as your Baba was doing his fellowship and simply could not get away. As I gripped your hand and walked you towards the building, a large teenager came outside in the throes of a meltdown. Two teachers came out and administered a restraint on him, stopping him from bolting into downtown New York traffic.

I nearly threw up right there as I picked you up into my arms and hurried past them into the building. This was going to be your school? My tiny, precious three-year-old boy who had never left me before. With little knowledge and no understanding, I thought every awful thing there was to think.

I walked you to your classroom, met your teacher and settled you inside with some blocks. You loved stacking blocks. You’d lose yourself in building towers – up, up, up. After a brief conversation with your new teacher, she assured me that you’d be fine and encouraged me to sneak out, which I did.

The door shut, and a wail came out of you when you realized I had gone.

I cried the whole way home on the subway – another New Yorker lost in a sea of people, crying silent tears while others deliberately tried not to notice.

For a month, I cried dropping you off or putting you on the bus. And you cried leaving me. I would come back to our apartment and nurse your baby sister, my tears dropping down on her downy head. It was anguish.

Am I doing the right thing? Show me the way, I prayed.

**********

Three weeks ago, you made what is probably your last big transition in school. You went from your classroom, where you had been for three years, to a brand-new building on your school’s campus to the Life Skills. Now you were spending time with the young men and women, learning vocational skills, self-care skills and community-based lessons.

By my estimation, this would be your last transition until the Big One – the move when school ends to postsecondary life and that cliff with the unknown drop.

A lot happened that week – the big transition in school, two of your home therapists leaving and two new ones beginning, the withdrawal of your favorite spinning beads as a leisure time activity in school and on the bus. It was a big week for you.

Your world was rocked.

That first week was extremely exhausting for you. The cacophony of your new classroom in addition to the two new home therapists who were getting to know you. You were quiet after school, withdrawn and prone to meltdowns before bedtime. On Thursday of that first week, when your therapist asked you want you wanted to do, you wrote on your Proloquetogo app:

I want to go do nothing.

I shed some tears that week, though nowhere near the waterworks of when you started school at the age of three. You shed a few as well. But we’ve both come a long way. Still, some things endure from the time you were my little boy to now, with you a tall, strong, autistic young man: It’s still anguish. It’s still joy. It’s still unbearable. It’s still love incarnate.

My dear son. My darling D – I still pray the same thing: Am I doing the right thing? Show me the way.

Love,

Mamma