Susan's Blog

Tuesday, July 12, 2011

Please Support New Limits on Aversives in Massachusetts

I just received this notice of some new legislative amendments regarding the use of aversives in autism education and behavior management.  Please use this link to write to your legislator, if you are in Massachusetts!  See the ARC of Massachusetts’ message below:

The Massachusetts Department of Developmental Services (DDS) is proposing amendments to their regulations that will end the use of aversive interventions in Massachusetts. Aversive interventions–which include hitting, pinching, and electric shock–are used in treatment plans to modify an individual’s behavior.
But aversive procedures have never been shown to be effective methods of permanently altering behavior. Their only use is as a suppression of the symptoms, not the root cause, of undesired behaviors.

Other, non-invasive methods, which pose no risk to an individual’s well-being, have been developed and are effective not only during their use, but after the their withdrawl.

There are individuals across the Commonwealth who use aversive interventions as part of behavior modification plans, and the amendments allow these individuals to continue using aversives. But as a state, we need to move forward. The amendments take the positive step of banning aversive interventions for those partaking in behavior modification plans after September 2011.

So join us in making Massachusetts a better place for people with disabilites and support the new DDS regulations that ban aversives. Take action and submit your comments support the regulations.

Sunday, July 10, 2011

Turned my whole world upside down

I was pedaling hard up a hill today, listening to Layla.  I reached the blissful pinnacle of the hill just as those first brightly colored piano chords struck, and the song shifted into Jim Gordon’s second part, so different from the first.  Where the beginning verses of Layla — Clapton’s — are passionate, lusty, angry, frustrated, the second part is pure yearning.  Maybe even a letting go, as those birds tweet twice at the very end.

The song shone in my ears and it tore my heart at its most tender spot, right where I keep Nat.  There on my bike I wanted to cry, thinking about this morning, when I had told him about his autism.  This morning, in the quiet fresh light of the early sun, I had suddenly realized that it was time.  “Nat,” I began, “I want to tell you something important, about yourself.”  His eyes were on mine, focused and interested.  “You know, you have something called autism,” I said, slowly.

“Yes,” he said, listening.

“You probably hear a lot about autism.  Bad things.  But what I want you to know is, you are not bad at all.  You are good.  But autism is a disability.”


“So that means — a disability is something that makes things hard.  You have a hard time talking.  That is autism.” He waited for me to go on.  “A lot of people have autism.  I don’t have autism.  Max doesn’t have autism, that’s why he can talk a lot.”  I paused.  “Your brain works differently because of autism, and makes it hard for you to talk.  But you are doing so well with it!  Your emailing is so great!”  I was smiling.  Ned was watching intently, I could tell from the corner of my eye, but I did not want to see what he thought.  If he was skeptical, I did not want to know.  I was not skeptical.  I feel that Nat understands, and so now I was acting accordingly.

“I write a lot about you, to tell people about how much you’ve learned.  They read my books because it makes them happy about their children.  I teach them things about autism.  Because you’ve done so great!”

He sat very still.  “Yes,” he said.  Did I see a flicker of something?  Was he sad?  Confused?  Did he finally understand why life feels the way it does to him?  Of course I don’t know.  I felt I did the right thing.

But as Layla flew upward and my bike sped downward, I wondered if I had helped Nat or hurt him.  It was so late in his life to tell him this, but it is only now that I feel he would understand.  I believed that he probably wants to know why he is different from others, even if he does not articulate it that way.  He needs to know that he is different, but not bad or inferior or broken.  He needs to know how great a person he is, how bright and strong.

But did I convey that?  Or did I just open a door to a dark and scary place for him?  Or did only some of it get through?  I know I’ll have to revisit this, often, to check in with him, make sure he is handling this news okay.

I believe people have the right to know important things about themselves, but they need to know them at the right time.  Nat, with all of his growth this year, in spoken and written communication, seems to be ready for emotional growth.  It is time he took his place in the world, as a man, and the best way to confront such a place is armed with self-awareness.

Still, my heart is hurting for him, because he is so new at all of this.  He has awakened, but it is only 3am in his life.  But just like any of my kids waking up scared, I’m here.  Tweet, tweet.

Friday, July 1, 2011

Massachusetts State Budget for DD’s (Developmental Services) Conf. Cttee

Report from The Arc of Massachusetts:
5948-0012 DESE/DDS (7061-0012) $4,600,000 $6,500,000
Disability Supports in the Balance:
Conference Committee Results
June 30, 2011

On June 30, the Conference Committee Members released the 2012 Conference Committee Report. We are pleased to report that the Committee chose to endorse the higher House numbers for the Dept. of Developmental Services (DDS). It also came close to the Senate total for line item 4000-0700 ($1,000,000 less) which holds the accounts for Day Habilitation, Adult Foster or Family Care and Adult Day Health, although it did not adopt the language which provided a 60-day notice for cuts. The governor does have the authority to stop such cuts and we will appeal to him.

  • The positives are: Family Support with $41 Million (still short $4.5 M of 2011 figure);
  • Employment with $1 Million of the $2.7 Million needed for Turning 22 graduates ($124.267 M);
  • Additionally the report avoided deeper cuts in DDS service coordination by providing the House number of $60.67 Million.

For Special Education and Children with ID’s and DD’s under 22:

  • The DESE/DDS dollars and language which was at $6.5 Million in both branches also reflects a positive for our constituents.
  • Among other accounts, we’re pleased to report that Early Intervention did get the Senate figure of $31.4 Million
  • The circuit breaker (public school funding for expensive in-house SPED programs) maintainned $213 Million overall (7061-0012)

My Grandparent Piece in NY Times “Motherlode”

June 22, 2011, 4:22 pm

Grandfather Knows Best


Grandparents. It can be comforting to know our parents are there when we have kids, with wisdom and experience to share. It can be exasperating, too, that they assume they know best. As Susan Senator, author of “The Autism Mom’s Survival Guide” writes in a guest post today, it can often be both of those things at the same time.

Especially when they are right.

By Susan Senator

When I first told my father about my oldest son Nat’s autism, Dad said, “Well, he’s still our Nat.” Our Nat. I remember being stunned by the simplicity of that response, thinking, “does he really get what I just said?” even though he is an intelligent man. For some time after that, I took many opportunities to rub his face into the rotten places autism took me to.  But his reaction was maddeningly the same: basically, that Nat was just great, and what was I complaining about?

It quickly became apparent that Nat’s autism was very severe:  unpredictable tantrums, barely functional language, a vacuum-like withdrawal. In the early days family gatherings snapped with tension and the anxiety that Nat would explode into unpredictable rage. Back then my husband and I attended any holiday or visit with fearful expectation of having to pile ourselves back into the car at a moment’s notice, but my parents always begged us to come anyway. And we forced ourselves to, and face the specter of Nat’s volatile behavior year after year. The power of their unflagging, quiet insistence would swept us along, tsunami-like, carrying all of our messy uncertainty in its wake.

But Dad’s calm confidence – bordering on denial – was mixed for me.  His attitude – and his success with Nat – made me feel at times like an overwrought, incompetent parent, and yet at other times, like a worshipful daughter. After all, his approach seemed to do the trick:  when Nat was 4 Dad started getting him to do yard work for him.  When Nat was 8 Dad helped teach him how to ride a bike. When Nat hit his most difficult phases, at 11 and then at 17, he never once did anything to hurt or scare my father.  I can’t say the same about the rest of us.

I found myself thinking about Dad’s singular skill with Nat — and his blind spot — when my parents visited us recently for the holidays.  Passover now takes place at my house, because being on our own turf has proven to be an easy solution to some of our difficult family gatherings. This was a fairly typical Passover, with Nat hovering benignly over me while I cooked, making his usual endless walking loops around the living room and dining room.  Now 21, Nat has learned, at last (and after our frequent brave forays into the world)  that he can be with people calmly, even enjoyably.  Especially if the gatherings include food.  This time, Mom brought double the amount of food that we needed, including three kinds of dessert, so Nat was especially excited.  Every now and then his self-talk would become giggles, which floated over to me and bathed me with relief and joy.

Dad came in, loaded down with dog-eared copies of the Hagaddah (the Passover story and prayer book) and his lesson plan for leading the seder, complete with index cards and notes. And this year, Dad had one new item: a Hagaddah he had adapted for Nat so that he could really follow along and participate.  I loved the idea, though when I saw it, I grew skeptical over the many chicken-scrawled cues Dad had written for Nat.  Wasn’t it a little too much hope packed into such a small space?

A few hours before the seder was to begin, Dad sat down with Nat to familiarize him with this pared-down Hagaddah. At one point I heard Dad quizzing Nat about the part of the seder where the family welcomes the spirit of the prophet Elijah into their home. Dad said, “So Nat, you open the door for who?”
“Elijah,” Nat answered dutifully.

“And you count, 1-2-3, and then ….”

“Close the door.”

“1-2-3,” Dad repeated.

At the seder he called on Nat several times, and Nat would read in his halting, uncertain voice.  ”Thank you, Nat,” Dad would say each time.  All evening, Nat remained his usually antsy self, bouncing in his chair while the rest of us slurped our soup and crackled matzah onto our plates; clearly he wanted out of there, but he has learned enough about how his extended family works to know to stay put.  And there were all those desserts to consider.

Then the time came to open the door for Elijah.  At my father’s cue, Nat sprang up and opened the door. Dad shouted “1-2-3!” but Nat had already slammed the door shut. I laughed softly at both Dad’s zeal to get Nat to do the right thing – and Nat’s equal zeal to resist.

But Dad’s smile declared victory, as if that was exactly what was supposed to happen.  Dad always has to be right.

And yet, wasn’t he?  As I watch my stubborn Dad and my irrepressible Nat, tarnished hope starts to sparkle and glow like old silver.  Why can’t Dad’s gauzy veil of denial actually be the truth?  Whose to say it isn’t?  The door was opened.  It was shut again, sure, but the bottom line is:  a door has opened.