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.




I need this book so bad! You just described me…J turns seventeen in May…thanks!!!

— added by Candy on Thursday, February 25, 2016 at 4:34 pm

I am curious if you get into, in the book, about group homes and why that didn’t work for Nat and why. If I recall from your blog he was in a couple of them and now lives in shared living (?) with a roommate. That is what I am interested in and will not even go the group home route for various reasons so I am hoping the shared living is detailed. Thanks for writing this.

— added by shared living? on Thursday, February 25, 2016 at 6:00 pm

Thank you for asking! Yes, I do detail shared living and how Nat got to that. I won’t let him go back to a group home if possible, but I do know of some that have worked out beautifully (I tell that story in the book, too).

— added by Susan Senator on Thursday, February 25, 2016 at 6:02 pm

Thanks Candy!

— added by Susan Senator on Thursday, February 25, 2016 at 6:02 pm

Hi Susan. Just wanted to thank you for all the hard work that you so and all the people that you help. I had spoken to you a while back and explained to you about my cousin and her son who is autistic. I had purchased your books for her as a gift, not knowing if they would help her or not. Well I again would like to thank you because she has read your books AND she also is signed up to receive your blogs.
You are amazing and you help so many people. I would just like to thank you and please continue with the excellent mentor you and Nat have become to so many people.
From your friend from the block,

— added by Sue Burger on Thursday, February 25, 2016 at 7:10 pm

Oh, Sue! What a lovely message to get. Thank you, and please tell your cousin to get in touch if she wants to: xo

— added by Susan Senator on Thursday, February 25, 2016 at 7:18 pm

You grabbed me as soon as you mentioned the age 17. My son turns 17 this May and I am concerned for his future. We don’t have any services in our country. I look forward to reading your book.

— added by Di on Friday, February 26, 2016 at 9:26 am

My Mother has informed me my son should go into a group home. That will be a cold day in…. That drives me nuts. A woman who was barely here, claiming my inability to regulate adrenaline is the kid’s fault not the lack of support I received over the years (both families and Dh). That’s what we unfortunately put up with. Dh prefers the “if I ignore it long enough” route.

Dh’s cousin is in adult foster care. We see him every so often at an event like a church dinner with the retired couple he lives with. He’s happy, socializing, and 50+ years old. Unfortunately, it didn’t happen until his Mother became to ill to care for him and passed away. Before that he wandered a local village with the neighbors keeping tabs on him. I’m hoping to arrange the same one day, long before I’m too ill to deal with it.

Although your “rules” may be different, I too will be reading it so at 17, I have some idea what to ask for even if it’s 20 years from now. I have an inch thick pile of papers I need to read too… need to stop avoiding it.

— added by farmwifetwo on Friday, February 26, 2016 at 9:46 am

Nat is in a version of Adult Foster Care, it is called “Shared Living.” He basically shares an apartment in Boston with another young man who is his caregiver and a lovely soul. I think if you can do it, this type of arrangement gives a person more attention and more of a “real” life than many group homes. Although, of course, there are some group homes that are really amazing!

— added by Susan Senator on Friday, February 26, 2016 at 11:28 am

Dear Farm Wife Two, I think we are married to the same fellow, he must be bigamist. Your comment made me feel less alone on a difficult day. Thank you.

— added by Ohio Mom on Tuesday, March 1, 2016 at 4:54 pm

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