Susan's Blog

Sunday, November 29, 2015

A Wonderful Housing Workshop

My friend Michael Weiner’s monthly workshops can benefit *anyone* transitioning into the Post-22 disability world — and this particular one is about a Federal program (NOT JUST MASSACHUSETTS)! Here is the infom, but you MUST RSVP to Mike if you are going! Seating is limited. But the event is free.

Our next meeting is scheduled for 12/9/15 (Wednesday) at the Wellesley Unitarian Church, 309 Washington St., Wellesley Hills. It will be from 7:00 – 9:00 PM. The topic will be the Section 8 Housing Choice Voucher program. The presentation will be led by Mr. Steve Merritt, the executive director of the Norwood, MA Housing Authority, and the Senior VP of NAHRO (National Association of Housing & Redevelopment Officials).

Here is an example of the types of questions we plan to discuss:

What is a voucher?

How do you apply?

What are eligibility requirements?

How long is waiting list, and how does centralized waiting list work?

What preferences do most PHA’s use? What is the difference between the Section 8 program, and public housing (federal and state)?

What happens if a voucher if offered?

How long do you have to use? Where can you use?

What are “reasonable accommodations” under Section 8 (i.e. higher rent and utility standard, longer search time, live-in aides, renting from relative, reinstatement on waiting list)?

What is a “family unit”?

What is FMR (fair market rent), and how is it determined?

How much does voucher holder pay for rent, and what is subsidy?

Where can you use a voucher?

What is difference between a one, two or three bedroom voucher? Can you switch from a two bedroom voucher to a one bedroom voucher?

What is the difference between a tenant based voucher and a project based voucher?

Please RSVP to Mike Weiner if you plan to attend. Thank you, and enjoy the remainder of the long holiday weekend! Michael W. Weiner Financial Advisor Special Needs Commonwealth Financial Group 101 Federal St. (Suite# 800) Boston, MA 02110 617-312-5115 (Cell)

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Wednesday, November 25, 2015

Early Praise for My New Book

Pre-order my new book! And see early praise, below!


You can now pre-order my book, Autism Adulthood: Strategies and Insights for a Fulfilling Life. And thank you, John Elder Robison for a lovely foreword, and Ron Suskind, Arthur Fleischmann, Claire LaZebnik, Laura Shumaker, and Temple Grandin for beautiful blurbs. Pre-Order here.

See what is being said by beloved autism authors:

“In this book, like her others, the wonderful Susan Senator gives voice to those who are too often voiceless — folks with ASD who seek what they deserve — lives of purpose and possibilities.” –Ron Suskind, Pulitzer Prize-winning journalist and bestselling author of Life Animated, A Story of Sidekicks, Heroes and Autism.

“There is a huge need for books to help individuals with autism make the transition to adulthood.  Autism is a wide spectrum, ranging from a brilliant Aspergers at a technology company to an adult who cannot dress himself. These individuals need very different services.  Susan Senator describes successful journeys, as well as her own with her son Nat. I highly recommend this book for parents and teachers who are guiding individuals in the middle range within the broad autism spectrum.” –Temple Grandin, author
The Autistic Brain
Thinking in Pictures

“From the introduction, Autism Adulthood: Strategies for a Meaningful Life will bring you to that dark place parents of young adults with autism fear. But just as quickly, Susan offers practical advice through story-telling and concise, how-to strategies that will leave you feeling optimistic, hopeful and back in control – all any of us can ask for. A thoroughly readable and important book.” –Arthur Fleischmann, author of Carly’s Voice: Breaking Through Autism

Autism Adulthood is a book I will be recommending to every autism parent I know. Senator is as warm as she is wise, as thoughtful as she is knowledgeable, as compassionate as she is informative.  Her rallying cry of “All we can do is love each other” will resound in any parent’s heart. Senator loves fiercely–which means she does everything she can to ensure the best life and future for her adult child with autism. This book will inspire the rest of us to do the same for ours.” –Claire LaZebnik, author of Overcoming Autism: Finding the Answers, Strategies, and Hope that can Transform a Child’s Life

“Susan Senator’s book is a must read not only autism parents but for disability parents in general. Parents need to pick up this book early and read it often to prepare practically and emotionally for the future. It is well researched from a mother’s watchful perspective. It will get you thinking hopefully about the future from the start, and is full of tips and tricks that will save you time, money and heartbreak.” –Laura Shumaker, author of A Regular Guy: Growing Up with Autism

Sunday, November 22, 2015

One Small Step For Everyone Else, One Giant Leap For Nat

There we stood, Ned and I, just behind the line of the football field at Nat’s Special Olympics championship games. We were frowning a little, then smiling, then grimacing. We had layers and layers of sweaters and coats on to guard against the raw gray air. This wet cold seeped into every thing, even though it was not raining.

Play after play Nat dropped the ball or didn’t even try to catch it, walked slowly up and down the field, and stayed away from the other team. He’d be subbed out and would smile, so I knew he was enjoying himself. But he sure does not understand the game, or what he is expected to do with the ball on any level.

Ned’s and my frustration stung as we watched his one-on-one — a unified (i.e., non-disabled) player — just kind of talking to him in a normal voice, too many words. Might as well have been French or Hindi. Nat just will not process that kind of stream of sentences, it just roars on past.

I don’t want to feel this way, this tiring tug downward. But I did. One of the parents kept catching my eye and splashing me with sympathy. I gritted my teeth and gave nothing back to her. I. do. not. want. your. messy. pity. Pity can sometimes make the other person feel shame. God damn her for making me feel shame.

Then it dawned on me. Nat is pretty much the most disabled person on his team. Yes, it’s true. The rest of them can talk, can understand the basic rules, and most importantly: they understand what they are supposed to do and they want to do it. Their comprehension buoys their motivation.

I realized next that Nat is likely among the more disabled people in Special Olympics. The diagnosis of Intellectual Disability can mean you are only slower to process, or perhaps your language is affected and hard to understand. Maybe you have Down Syndrome and so much of your disability is physical or about delays. But your social powers in all of these cases are still intact. I don’t know enough to state this empirically but I know what I see. Even those who appear very very disabled in how they move or how their faces are arranged, or how they sound, they are still able to be a teammate and they know there are rules and roles in the game. I don’t think Nat is at that level.

For some time now, I think I had forgotten about Nat’s disability. Not on the surface, but kind of deeper down. You would not have noticed. The slogan “Presume Competence,” puts forth an attitude I’ve long worked towards. Now I’m wondering if it can go too far. All Nat’s life, he has tried and tried to do what is asked of him, and he has learned over long periods of time what to do in so many areas of his life. It is not about his ability to actually do the thing, execute the task.

Nat’s disability, the black hole at the center of it, is that he does not realize his part in things. He does not realize what is behind getting the laundry up from the basement or unloading groceries for me or going on a walk to a favorite destination. What is behind these things is will. Free will. Nat does not understand in the most basic way that he can be the origin of an action, a conversation, a want, an idea.

He does not know that he is the master of his own life. Nat’s disability lies in a pathological passiveness. Not laziness, not intelligence, not physical know-how. But generating original action. That is what he struggles with the most. So it really hurts when people say, “Maybe you should show him how to type.” Or “Maybe stop prompting him.” Or “put up pictures and lists telling him what to do next.”

It hurts that people do not understand my biggest failing as Nat’s mom: I do not know how to teach him how to do things for himself because the very nature of teaching him what to do is that he learns it still hooked to my teaching role. He does not detach his own desires and acts of fulfillment from me, and others. It is a terrible paradox. I cannot say, “Nat if you want to eat, you can eat,” because to him that means “Nat, you can eat now.” The “if you want,” is cloaked behind something in his mind. It’s just like Who’s on First, but it’s not funny. It makes me so sad. It’s like when I could never teach him the correct pronouns, either, for similar reasons. I can’t say, “No, Nat, it’s not me who wants it, it’s you!”

“You want it.”

“No Nat, you mean ‘I want it.’ You, not me!”

“You want it.”

I want it. To get better. But will it? Can he make this leap, across that giant field?

Does he have to? If this is his disability, this is his disability.

But I think he wants more power in his life. I think he knows that he is on the sidelines, even in the game.



Thursday, November 5, 2015

The Utter Seriousness of Play

Sometimes the thing you expect is just not in the cards. Latest example: I co-hosted an autism-friendly Halloween party last Saturday with two other friends to raise money for a favorite cause, Mass Advocates for Children’s new Autism Center. MAC is known for helping families with legal issues, as well as their research and statewide autism advocacy. They focus on low-income and minority families who may be less able to navigate school system special education than others.

When Jude, Tere and I first sat down to plan this we were thinking primarily of the little kids with autism who might have a hard time with the typical Halloween tradition of walking haphazardly through a neighborhood in the dark, in a strange likely uncomfortable outfit, ringing doorbells of strangers, yelling “chickacheet” or some other nonsense word, choosing among candies, and then NOT BEING ALLOWED TO EAT THEM. A sensory nightmare, but my favorite holiday all year. Dress-up and candy were and still are some of my absolute happiest things to experience. As a kid I planned my costume months ahead. As I got older I figured in clever layers for warmth so that my mom would not ruin my costume with my stupid snow jacket. And in my forties I started bellydancing, so that I could always surround myself legitimately with colorful sparkly costumes.

But Nat did not get Halloween and it was a great sorrow of mine. A selfish sorrow, because did it really matter that he could not see the good in the strange rituals illustrated above? Of course not, but I had had such high expectations of the fun I’d have with my kids on Halloween. Eventually Halloween became a new behavioral task, where we aimed to have Nat wear some form of costume, say the appropriate words to the stranger who opened the door, and wait til we go home to eat the candy. Whether once around the block or only three houses, if Nat could do those things, we would, as Ned put it, “declare victory and then get the hell out.” But over the years, Nat figured out Halloween and mastered it. He always wants to be Zorro. He even shopped for his sword and hat — with a fervor I have never seen in a store — and he insists on it every year.

So planning for this party was not about Nat’s needs. I knew he’d enjoy it. This was for the kids who might like some aspect of Halloween, and could enjoy it in their own way — stuffing themselves with treats while leaping all over the yard in a tophat, getting their pictures taken in the special photobooth, jumping in the bounce house. And I was the fortune teller: a perfect way to wear a gorgeous garish costume all day long.

Visit the website of Inside Out Booth to learn about more innovative ways to make use of a photobooth.

This role was perfect for me in another way. About 20 years ago I learned how to read Tarot cards. I did not believe in them, however; I may be a flaky Libra, but I could never bring myself to be convinced that there was some greater plan for any of us, no matter how prettily or shockingly coincidental the cards shook out. I did, however, find that the cards were a good tool to organize my thoughts and feelings, to determine what it was that was bothering me at the moment, or even to figure out what I wanted to do about a given circumstance. And if nothing else, they were fun.

I removed every scary card from my deck, like Death, or The Tower, anything with sorrow, figuring that I would be reading for children who might be more literal than most. I set up my little round table with a lace tablecloth and silver tulle that glinted like diamonds in that blinding fall sun. As if planned, dragonflies kept landing on the shiny tabletop, adding their magic. I told people that I usually just deal one or two cards and somehow the kid’s fortune would always end up being something like, “Oh, wow, this shows that you’re a good student, is that true?”

What I did not expect was that most of my “clients” were the parents, not the kids. Many of these people were autism parents I know in one way or another — our community’s connectedness is international and legendary. So there I was, in my splashy, bindi-infested regalia, asking them to cut the cards in the actual Tarot fashion, and doing an abbreviated, partly made-up form of a real Tarot layout. Because these were adults and people I cared about, I found myself trying remember the basic meanings, and if not, to offer ones that made sense. The parent would listen with wide eyes, and think about each card I interpreted. Sometimes I would pause, thinking, “Oh man that sounded stupid,” but then the parent would consider it and tell me what it meant in his or her life. From that, the reading would grow more intuitive, and then, more — well, accurate. Parents were asking me if they should move back into the corporate world or work from home, or if I could affirm great love in their marriage. and I found I could help them without telling them what to do. Sometimes we’d ignore the cards and they would just pour their heart out to me.

At first I was taken aback by this naivete. I thought to myself, “don’t they know it’s just me?”

But of course they did. And the more people who sat before me, the more connected I felt to them, and my readings. I started taking it all more seriously, because they were. Somehow the quiet corner of this energetic party provided a feeling of safety for them, and the deck of cards a bridge between us. I realized something: they just wanted someone to talk to, outside of their usual life. Somehow, being me-but-not-me helped create a connection that left every single one of my readees smiling. “Eerily accurate,” a few people said. But it was not because of me. It was because of that moment in time, the day. The special gathering of our special kids, so well-loved, so weighted with our hopes for them, provided us all with a flash of time when we were not serious, or worried, but winged and light — and  utterly completely ourselves.

.Photo Oct 31, 1 51 07 PM


Sunday, November 1, 2015

An Autism Authors’ Tea

Come to a lovely Autism Authors’ Tea, featuring poet Scott Lentine, Aspergian author and blogger; Jess Wilson, famed and beloved Diary of a Mom blogger; and me! I will be giving a sneak preview reading from my forthcoming book, Autism Adulthood: Strategies and Insights for a Fulfilling Life, (Skyhorse, New York City, April 2016) At An Autism Authors’ Tea in Newton, Massachusetts, 11/8, 3:30pam!

2015-07-28 15.55.07

An Authors’ Tea To Benefit Mass Advocates for Children, Autism Center.

Scott Lentine – Poet, blogger, advocate
Scott is 28 years old, with high functioning autism (PDD-NOS/Asperger’s). A graduate of Merrimack College with a degree in Religious studies & a Minor in Biology, Scott shares poetry & prose with his blog & Facebook readers about the impact autism has had on his life. Scott has appeared at numerous events as an advocate for individuals with autism.

Susan Senator – Author, English professor, disability advocate
Susan is best known as Nat’s Mom. Susan has written two autism parenting books, a third will be published April 2016. Her work has also been featured in the New York Times Magazine, the Boston Globe, and the Washington Post and on the Today Show, NPR, and CNN. She writes a blog & posts on Facebook about autism, parenting, & living happily.

Jess Wilson – Writer, blogger, advocate
Jess shares her family’s journey raising two beautiful daughters, one of them autistic, to 250,000 loyal followers in her online communities — on her “Diary of a Mom” blog and Facebook page where she writes with humor, compassion, and mutual respect, building bridges and mutual understanding about autism.

We will enjoy readings by these three local authors
and advocates who eloquently share
their experiences and perspectives on autism.
Sunday, November 8th, 2015
3:30-5:30 pm
Newton, MA

Please register at Massachusetts Advocates for Children – Friends of the Autism Center, November 3rd.

Suggested Optional Donation: $25 * $50 * $100 * $250

Capacity limited.