Susan Senator

Last Thursday I went to a conference in Rhode Island held by Community Autism Resources, an advocacy and support organization connected to Dr. Barry Prizant, one of the creators of the SCERTS model of autism education. Temple Grandin was the first speaker. I had heard Temple speak years ago, but having just seen the Clare Danes movie, I was eager to hear her again.

Temple talked a lot about different types/manifestations of autism and how to tackle the various issues associated with them. She spoke in terms of "brain problems," rather than attempting to use traditional diagnostic terms like dyslexia, ADHD, or even autism. Her point was to make clear the fact that understanding the specific learning style of each brain you meet helps you relate to and educate that particular brain. You can't get "locked into labels," she said.

Temple discussed comprehension and learning styles by making three basic categories: those who are visual thinkers; those who are pattern thinkers; and those who are verbal thinkers. Of course there is a lot of migrating in between the groups. Visual thinkers would be "poor at algebra but can do geometry," Temple said, because of how they think in pictures (the way she does). They might be industrial engineers. Pattern thinkers would be good at music and math, or playing 20 questions; they can't show their work, either -- which made me think of Benj. And Verbal thinkers would have no speech delays. They might become journalists. They are word people; they think words.

Right away I could see something revolutionary here because nearly all Nat's life I have heard about how "autistics are visual learners," and it always struck me as a broad generalization and not entirely true when applied to Nat. Nat learned to read by spelling, not by images. I never felt that Nat needed the Meyer-Johnson symbols to understand things; he did so well when I sung things to him or even spelled out loud. Not all the time, of course; some of Nat's learning is indeed visual but the point here is that people have so many variations in their brains that we do ourselves and our children a disservice by assuming one-size-fits-all. Obvious, but then again, easily forgotten.

Temple talked about how some autistics cannot see and hear at the same time. Their central auditory processing is "messed up." They have problems discerning detail in sounds. In some cases, hard consonant sounds disappear; the quicker sounds "drop out," and yet the same person will test perfectly for hearing. "Slow down and enunciate," Temple advised.

"Then you have the echolalic kid who hears fine if [things are] repeated exactly the same." You would teach him that words have meaning, using hundreds of flashcards, with the word and the picture. He would need many, many examples of things to understand their meaning and then generalize to their category. But it can be done. "Explain enough--they'll get it," she said.

Next Temple described those with "attention-shifting slowness," whose ability to focus and then refocus is affected tremendously by distractions. Interruptions in conversation may mean utter breakdown in comprehension. "Give them time to process," she advised.

Further, there are those whose "visual systems are messed up." Their eye exams would be normal, but images break up. They learn through hearing(!). People who have this problem may see print jiggling on the page, and therefore their reading ability will lag. Temple advised pastel-colored lenses to correct this. They're available in Target, she said, and she felt that if people don't try this, something this simple, they're idiots.

Temple calls 'em as she sees 'em. No mincing of words. Her approach is to identify the brain problem and then find the strategies that will apply. Don't waste time on changing the world; put your energy into simple corrections and techniques and stay focused on problem-solving. For example: Supermarket fits? Probably sensory -- bad lighting. Not always behavioral, but sometimes it is. Find out which it is. If the behavior is not sensory but rather is about attention and pushing people's limits, then you should not tolerate it--like rudeness at the dinner table. As Temple put it, "Autism is not an excuse for having a fork in your hair."

Building on her theory that not all autistics have autism in the same way, and that we are talking about individuals with their own particular set of challenges, she brought up the "break it all down into small parts" approach. This is one of the most common forms of instruction for kids on the spectrum. Small steps, small parts. Discrete trials of learning, built one step/layer at a time. Temple blew my mind when she said that actually some folks on the "lower end of the spectrum" do not do well with things broken up like this. With some, you should "use one continuous movement, and it will get through. He must see it all." She talked about one person she knew whose mom realized this; she had to show him how to get dressed by slowly pulling his shirt on in one connected action, not by doing first arms in sleeves, head in neck hole.

Temple's basic approach to understanding autism and life is based on common sense, observation, and experience. A mixture of intuition and scientific research. Her overall philosophy seems to be to figure out your kid's learning strengths and deficits, and work within that configuration. Eventually you will identify learning styles, preferences, and then you can help find hobbies and perhaps one day employment that goes with his particular kind of brain. "Don't de-geekify the Geek," she warns. The differences in brains are the sources of our problems and our suffering, but also, of our individuality, our genius and our creativity. After all, "Who do you think made the first stone spear? It was some Asperger off [alone] in a cave..."

The point being that we don't need to work to change/fix people but rather to help them become the best they can be given their particular issues. Temple's humble, common-sense approach doesn't even presume to know how to change/cure. She blows you away with her humane attitudes and by implication, her compassion.

The most wonderful thing about listening to Temple was that even though she is an Aspie, her philosophy and findings are not just applicable to that end of the spectrum. As she spoke, I could apply much of what she was saying to Nat and many of his peers, all up and down that huge spectrum of theirs/ours. Her underlying message is that there is no big mystery here, just a set of problems to identify and solve. Although she did talk alot about therapies, both alternative and traditional, (GFCF diet, sensory integration, medication) and how many are worth trying for one-three months if they are not harmful, she was not focused on a cure, but rather, on how to work with what you've got. Something we could all use.

Chapter 6. Moving beyond "You and Me against the World:" Getting Help from Others

...Unfortunately, it’s a common experience for most autism
parents, at one time or another, to feel humiliated by strangers.
Or, if it is not humiliation, then we might experience just
plain lack of understanding. Paulette, who calls herself my
twin sister in Alabama, told me of the challenges she faces
going into public with her daughter Punkin. “Punkin and I
have had some good experiences and some bad experiences.
I really understand other autism parents when they say how
proud they are just to be able to go places and it’s normal.

I am invited to go and see The Nutcracker ballet for Christmas.
I have decided that Punkin will not be going. Everyone
wants to know why I am not taking her when my best
friend is taking her girls. I find myself getting defensive.” Paulette
has a long memory of her experiences out in the world
with Punkin, and it makes her think twice about going any-
where with her, just like I still do with Nat. “This summer,”
she said, “when it was just the two of us and the meltdowns
were happening on a regular basis, I couldn’t get anybody to
help me—but they are still quick to criticize my decision not
to take her to the ballet.”

Paulette continues, “They just don’t know how much I
would love to take her, but this is going to be a trip that I take
just for me. Most of the time when we go places, I say, ‘This
is for Punkin,’ and if I have to spend a little time in the restroom
calming her down, it’s OK because I am doing it for
her. But when we get up because she needs to go somewhere
else to calm down, nobody gets up and says, ‘Do you need
any help?’ Yet they still want to criticize.”

...Probably the most helpful happiness strategy for an autism
parent is finding lifelines. Lifelines are the people in our lives,
outside of our spouses or partners, who truly understand our
children. Lifelines are the people who “get it,” as many autism
parents say. You can leave your kid with a lifeline for a period
of time—an hour, a weekend, it can vary—and you don’t
have to worry about it. These are the folks who let us escape
and rejuvenate. Lifelines help our children, too, because they
provide them with bonding experiences beyond Mom and
Dad and help them to develop more independence...

My Maxie is 18 today. About to hear from colleges, a man with his own life and his own secrets, his own mind. I loved him the moment I saw him. With Max it was easy. He is, knock wood, my easiest child, and special in so many ways. Mostly I love his serenity and kindness. Plus he's damned gorgeous.

Happy Birthday, my darling young man!!

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>>>march
	Saturday, March 6, 5pm Judith Warner - We’ve Got Issues: Parents and Children in the Age of Medication Judith Warner (Perfect Madness; the columnist of the New York Times’ “Domestic Disturbances”) spoke with a cross section of parents, psychologists, psychiatrists, pediatricians, researchers, and therapists over the course of five years to find out how meds are affecting our children. The enlightening result is a wake-up call.
	Tuesday, March 9th at 7:30pm A free event presented with and at Temple Kehillath Israel (384 Harvard Street, Brookline) Nancy Kehoe - Wrestling with Our Inner Angels Nancy Kehoe is a nun and psychology clinician. In her first book, she makes a compelling argument for faith as a means to make decisions and order one’s life. With great empathy, she shares stories of the troubled people she has helped and writes of the way religious feeling has shaped her own choices. “Remarkable,” says Cokie Roberts.
	Wednesday, March 10, 7pm Sam Lipsyte - The Ask “Sam Lipsyte can get blood out of a stone” – Edmund White. If the Booksmith has prayers, they’ve been answered: the funniest writer in America is coming to Brookline. Sam Lipsyte (Home Land, Venus Drive) has written his third novel, The Ask, a screed against university development, capitalism, artistic leanings, and the middle classes. Après Lipsyte, le déluge.
	Thursday, March 11, 6pm Small Beer Press presents: A Fundraiser to Benefit Franciscan Hospital for Children with Holly Black, Cassandra Clare, & emcee Kelly Link In the Readers' & Writers' Room at the Booksmith Tickets required - $5 A discussion with the co-creator of The Spiderwick Chronicles, the person behind The Mortal Instruments and the author of Pretty Monsters? Don’t mind if we do! The Booksmith presents a YA extravaganza to benefit Franciscan Hospital for Children. All ticket sales and 20% of their book sales will be donated to the hospital. Email your questions for the authors to hollycassandrakelly@gmail.com. Click here for additional information!
	Monday, March 15, 7pm Now Write! Nonfiction Write-in with Sherry Ellis, Leah Cohen,& Marcie Hershman Have you ever wanted to write nonfiction? Learn how at the Booksmith’s first-ever writing workshop! Billerica-based writing coach Sherry Ellis (Now Write, Illuminating Fiction) celebrates the release of her latest writing guide, Now Write! Nonfiction with a writing class. Joining her will be fellow teachers Hershman and Cohen. During this workshop you will have the opportunity to start some of the writing exercises included in the book. Bring paper and pen! RSVP and book purchase required. Email events@brooklinebooksmith.com or call 617.739.6002 to RSVP or for details.
	Wednesday, March 17, 7pm Elif Batuman - The Possessed Follow Stanford professor Elif Batuman as she visits Tolstoy's estate to investigate a possible murder and loses Isaac Babel's family at the airport. Batuman (Harper’s, The New Yorker, LRB and n+1) has literally walked a mile in the footsteps of her heroes in a sharp, funny, personal literary history that takes us from California to the Caucasus.
	Thursday, March 18, 7pm An Evening with Ugly Duckling Presse Jon Cotner and Andy Fitch - Ten Walks/Two Talks With Damon Krukowski and Matvei Yankelevich Ugly Duckling is a Brooklyn-based nonprofit art and publishing collective. Join them as they celebrate the release of Ten Walks/Two Talks, a book Time Out describes as “philosophical, formally innovative and fascinating." Also appearing are Damon Krukowski (The Memory Theater Burned, of bands Galaxie 500 & Damon and Naomi) and Matvei Yankelevich (Boris by the Sea), one of the press’s founders.
	Friday, March 19, 7pm The Breakwater Reading Series The Breakwater Reading Series features fiction, non-fiction and poetry by writers from UMass-Boston and Emerson College MFA programs. Join us on the third Friday each month to hear these extraordinary emerging voices. For more information, please contact Angela: breakwater.reading@gmail.com
	Tuesday, March 23, 7pm Clea Simon -- Grey Matters Local mystery maven Clea Simon’s second Dulcie Schwartz mystery picks up a few months after the end of Shades of Grey. Harvard doctoral student Dulcie Schwartz finds the body of a fellow graduate student on her adviser’s front step. The ghost of Mr. Grey, her deceased cat, returns to offer his usual cryptic advice, leaving Dulcie to try and find the real murderer before the killer finds her.
	Wednesday, March 24, 7pm Sonya Chung - Long for This World Sonya Chung teaches writing at NYU and the Gotham Writer’s Workshop. Long for This World centers around a Korean family in America. Kate Walbert calls it "an intricately structured and powerfully resonant portrait of lives lived at the crossroads of culture, and a family torn between the old world and the new… a powerful debut from a young writer of great talent and promise."
	Monday, March 29, 7pm David Shields - Reality Hunger: A Manifesto Memoirist (The Thing About Life Is That One Day You’ll Be Dead, Enough About You), sportswriter (Body Politic, Baseball Is Just Baseball) novelist (A Handbook for Drowning, Dead Languages) and Guggenheim Fellow David Shields will visit the Booksmith in honor of his latest work, Reality Hunger, that left Jonathan Lethem “astonished, intoxicated, ecstatic, overwhelmed.”
>>>april
	Friday, April 2 at 7pm Christopher Moore – Bite Me The man The Onion calls “the thinking man’s Dave Barry” returns with the third and final installment of his Bloodsucking Fiends trilogy. Christopher Moore (Lamb, Fool, The Stupidest Angel) brings his patented brand of socially incisive tomfoolery to a story about an accidental vampire, his mistress and an enormous cat.
	Monday, April 5 at 7pm Molly Wizenberg – A Homemade Life Molly Wizenberg, the woman behind the wildly popular blog Orangette, made a name for herself by sharing her favorite recipes with stories about her life. A Homemade Life, her New York Times bestselling memoir, serves up a book-length portion of wit and wisdom. Join her at the Booksmith to celebrate its paperback release.
	Tuesday, April 6 at 7pm Susan Senator – The Autism Mom’s Survival Guide Writer, activist and mother Susan Senator – author of Making Peace With Autism – has written about autism for the Globe, the Washington Post and the New York Times. Her new book shares the stories of parents of autistic children to instruct and inspire, drawing upon Senator’s own experience of finding joy in the midst of great struggle.

How we made the cake:

Funny how life works. I spent the morning a bit of a wreck from a late night out last night. I was weepy and self-destructive in my thoughts. I did some basic stuff, like cleaning my car and changing the beds, just to feel like a useful human being. I thought, with a defeated sigh, that chocolate was going to figure big in my day, and the thing is, I just lost 4 pounds last month.

Eventually I forced myself to go out, with my laptop. I would pretend I was a writer. The last two Nat essays I've been working on (one for Parents Magazine, and one for an anthology of This I Believe essays) were very laborious, so I had convinced myself this ugly morning that I was no longer a writer. Even though Nat is my muse, sometimes I get tired of putting thoughts about him together onscreen. Sometimes it almost reduces him to a two-dimensional being when he is at least 3D. No glasses necessary.

I got to Peet's and found a seat by the window, the corner of the counter, where you don't have to be near anyone yet you don't have to feel guilty for taking a whole table. It was sunny, yet just the right angle that I could still see my screen. The guy who took my order was really kind. I flipped open Twilight Princess and worked steadily until my meter was almost up. A rough draft, at least a start, for a rough day.

But then, the boys started to come home, one by one. The crisp little voice of Ben. The loud, loping stride of Nat. The lazy, LOL-ish I.M. voice of Max. I had a purpose again. I know it's not good to be defined by other people, but it's the truth. I love being their Mommy. And so we worked on Max's birthday cake (the temple from Lost, Season VI). And I realized that writing about my sons doesn't come close to how great they really are. A picture is worth a thousand words, but three sons are worth a million.

It seems like a wonderful gift to those of us celebrating "Spread the Word to End the R-Word" Day that Massachusetts Governor Deval Patrick has restored residential services for 315 people under the aegis of the Department of Developmental Services (formerly known as the Department of Mental Retardation). DDS is the agency that Nat falls under. Here is the message I received from the ARC of Massachusetts. Note that this excellent development was made possible by federal funds -- increased funding to Medicaid under the American Recovery and Reinvestment Act. Yay, Obama! Yay, Deval Patrick, and Yay, Massachusetts!!! And: let's hope that South Carolina can do the same!

315 will have essential residential services spared

Fulfilling his promise to restore critical disability services if additional funds became available, Governor Deval Patrick today recommended restoring $21 million to the Department of Developmental Services Residential Budget.


Using his errata budget amendment authority, the Governor's move will save over 300 people who would have lost residential services under his original House 2 proposal.
The Governor has been able to make this recommendation (and other non-DDS restorations) because of additional federal revenue made available from increased Medicaid reimbursement included in the American Recovery and Reinvestment Act (ARRA) and a settlement related to the so-called "clawback" decision by the U.S. Department of Health and Human Services'. That decision relates to Medicare expenses associated with the federal government's assumption of drug costs for Medicare and Medicaid-eligible residents eligible.

Governor Patrick announced the decision in a phone call this afternoon to ADDP President & CEO Gary Blumenthal.

Blumenthal and The Arc of Massachusetts Executive Leo Sarkissian had been working for several weeks with the Administration on understanding the impact of the proposed FY 11 and annualized FY 10 9c residential cuts.

Sarkissian noted: "Throughout the recession, Governor Patrick has kept the needs of people with disabilities as a top priority for the Commonwealth. He is the only Chief Executive who has shown the willingness to understand the vulnerabilities of the people we serve and their capacity to serve their community."

Blumenthal stated: "Once again, Governor Patrick has stepped in to make a principled and compassionate decision saving the most vulnerable citizens of the State from losing their homes."


The Governor's restoration of the Residential Services Account now shifts the effort of ADDP and The Arc to addressing Day & Employment cuts and Family Support reductions. Mass Families Organizing for Change, DDS Citizens Advisory Boards and other groups were part of this collaboration as well.


This development is one more positive development in the Governor's support of developmental disability programs this fall and winter including:
October 2009---Governor Patrick protected the bulk of DDS programs from 9C FY 2010 cuts.
November 2009---Governor Patrick reversed a Mass Health decision that would have cut day habilitation programs by 23% and eliminated over $100 million from Mass Health funded programs.
March 2010---Governor Patrick restored $16 million to Residential Services Accounts preventing 230 people with developmental disabilities from losing their residential services.
The Arc and ADDP wish to thank the Governor, EOHHS Secretary JudyAnn Bigby, A&F Secretary Jay Gonzalez and DDS Commissioner Elin Howe (and their respective staff members) for their collaboration in making this restoration possible. In addition, we are in debt to the hundreds of ADDP and Arc of Massachusetts supporters who called the Governor and legislators to express concern regarding the need to restore funding to the DDS line items.

The budget battle is a long distance marathon, and much work remains.

The Arc and ADDP are pleased with the outpouring of support we have been receiving from individual legislators who continue to demonstrate their support of our community.

The Patrick Administration has given disability advocates solid momentum to build upon with the leaders, and the rank and file of the House and Senate.

Please join us in thanking the Governor by leaving a message at his office at 617-725-4000.