Susan's Blog

Thursday, February 25, 2016

Autism Adulthood, First Excerpt: Chapter One

The first clear memory I have of actually working on Nat’s adulthood was probably toward the end of 2007, when he was seventeen. I was sitting inside a stream of weak sunlight, in the playroom where I keep all my files. The usual dust powdered the reddish-brown floorboards and the windowsills. Folders were spread out on my lap and on the gold carpet under my folded knees. I was looking through papers—reports and dog-eared, hastily-scribbled notes I’d taken at some seminar or other for parents. Brochures spilled out, unopened, glossy, packed with jargoned paragraphs intended to give me hope. The letters were small and black, and they didn’t really say anything. “We’re here for you.” Or, “We’ve provided services for people with intellec­tual disabilities and their families for decades.” Or, “Our adult residences offer professional, loving care for your loved one.”

I was searching for a list, a phone number. My fingers shuf­fled through the papers like little Flintstone feet, trying to get that big stone car moving. I felt inexplicably tired. That guy . . . that person who’d called me a year or so back, about Nat’s respite funding, from the Department of Mental Retardation, as it was called then. What was his name? David something? I closed the folder and sat back on the rug and sighed.

Okay, don’t just give up now; you have to do this, I told myself. So where do I begin?

The school hadn’t told me anything about whom to call, what to see. Okay, I thought. What am I looking for in terms of Nat’s future? It can’t be that complicated, can it? He will need to live somewhere. Who helps with that? How do you get the money for it? Agencies, vendors. Which is which? My heart was speeding up again. Deep breath.

Okay. The phone book. The blue government pages. I hefted the White Pages from its dusty shelf, onto my lap and found the listings, the blue pages. A memory flickered: the government departments were called agencies. Our agency was the Department of Developmental Services, DDS, (formerly the Department of Mental Retardation, DMR). The vendors were the people who provided the actual services used—such as job coaches, transportation to the workplace from the day program, feeding and toileting assistance. Vendors are mostly private nonprofits that specialized in disability services. I breathed a sigh of relief, having solved one tiny piece of the impossible puzzle ahead of me. I found some phone numbers. I called the DDS and I talked to a woman about what I was looking for: “Well, my son is seventeen, he’s still in school, but I know I’m supposed to start planning for where he’ll live after he is done with school, so I’m calling to find out what I should do next.”

There was a pause. I think the woman actually chuckled. “He’s only seventeen? Oh, you have time.” I could feel her atten­tion receding from me. Wait! Come back! What should I do? Isn’t there something I’m supposed to do now?

But she was not interested in my son or me. We exchanged one or two more pleasantries and I hung up and put the folders away for the right time. But I knew, in my heavy heart, that she was wrong. The time was now.

Copyright © 2016 by Susan Senator
Foreword copyright © 2016 by John Elder Robison
All rights reserved. No part of this book may be reproduced in any manner without the express written consent of the publisher, except in the case of brief excerpts in critical reviews or articles. All inquiries should be addressed to Skyhorse Publishing, 307 West 36th Street, 11th Floor, New York, NY 10018.