Susan Senator

I’ll be interviewed by Voice of America tomorrow at 9am EST. Other interviews are listed on my radio events page.

Here is my Passover album on Facebook — I hope this link works. It was an exhausting but wonderful night. I made a brisket. Mom brought matzoh ball soup, tsimmes (a sweet potato and carrot mixture), the seder plate contents (roasted lamb shank bone, horseradish root, parsley, roasted egg), and cranberry sauce. Laura brought delicious (non-Manischewitz) wine. Dad presided over the seder service. All the kids participated. And Nat said most of the prayers at our seder — he even paused when he got to “shel Shabbat,” which means “the lights of Sabbath.” I prompted him: “Passover,” and then he said, “shel Passover.” He also read passages (in English) from our Hagaddah (the story of Passover that you read from at the seder table). He corrected himself when he got the word wrong, like when he read, “spirit,” as “sprite.”

Apparently the President has put on hold the nomination of Autism Advocate Extraordinaire Ari Ne’eman to the Disability Council. There has been a great deal of negative feedback to the President for his pick of Ari. You can read more about the issue here. There is no question in my mind, however, that Ari deserves the post because he is a tremendously powerful, persuasive, and articulate spokesperson for high-functioning autism.

The problem with the pick is that autism is such a broad spectrum and those most affected by it are also extremely diverse to the point of terrible antagonism in the autism community. The cracks that run in the autism community landscape are broadening to the earthquake level. Autism-Vaccine-Connectors vs. Autism-is-Genetic-and-not-an-environmental-injury is only one such divide. We also have autistics themselves vs. parents. We have behavioral-therapy-practitioners and we have relational-therapy-practitioners; we also have biomedical-interventionists and traditional-medication interventionists. And I am mostly speaking of the case of autism parents, not of those with autism themselves.

We also have the majority of the parents who are a bit of all of the above. We try many many things to help our kids perform at their best potential. That is a parent’s job — along with loving and accepting our children for who they are. I don’t need to lecture any of you on this.

It is this broad and colorful reality of the autism experience that calls for a more diplomatic choice than Ari, or for a co-representation. My thinking is that Ari represents many autistics themselves, the high-functioning in particular; so then we also need a parent (parents are arguably just as affected by autism as autistics themselves, particularly the more involved children with autism). We need diplomatic people on this council who will listen and truly represent and understand all of the plate tectonics of the many autism continents. If we are talking about autism policies and programs and the spending of money, we are talking about a serious chunk of change and energy. We therefore need the broadest and least inflammatory representation possible. I think Ari + a parent of a fairly severely autistic child would be the best representation for such a split community.

Last night, Nat was really on.

Lately, it seems that he really wants to talk to us on the phone. Here’s the latest conversation:
[phone rings]. I pick up (once I’m sure it is the House calling and no one else. I don’t like to talk on the phone, unlike Nat).

S: Hello?
N: Hi
S: Hi, Nat!
N: How you
S: I’m good, how are you?
N: Good.
S: So what’s the weather like there?
N: [pause]…sunny…
S: And who did you work with at [the House]?
N: Evans.
S: Good! And did you do any exercise?
N: Treadmill.
S: That’s really good.
N: Yes.
S: Nat, did you go to work lately?
N: Yes.
S: Where do you work?
N: Papa Gino’s!
S: What do you do at work?
N: You walk…you…put coupons.
S: Wow! So where do you put the coupons?
N: Door.
S: That’s great, Sweetheart.
N: Yes.
S: Okay, well, I’m going to hang up now. I will see you tomorrow, and you know you are going out to dinner with your social group, your friends. And then the next day is the Harlem Globetrotters. And Laura, Kim and Paul will be here. And Grandma and Grandpa. We are having our Passover Seder!
N: YES
S: Okay, bye Darling
N: Good-bye
S: Bye, I love you
N: Bye.
[they hang up]

This is a boy who could not answer “yes” or “no” when he was 4, 5, 6 — this is nothing short of a miracle. How did it happen, you wonder. I do, too. But it was just long, hard work on his part and his teachers, and growth. No magic pill, no secret anything. He’s got a disability. I respect that.

I guess he really started being able to converse at 9 or 10. Slowly. Oddly, like a person learning a new language. He swallows some letters. This may be because, as Temple Grandin says, this is how he actually hears words most of the time: some consonants are dropped. (!)

And gradually, with practice, he has strengthened his ability to think on his feet and answer questions. It’s like Temple Grandin also said, you have to give a long enough response time so that he can process every word, every letter. And what I also do is to add in words that are cues, that are bridges to his finding the answers. So I repeat the word, “work.” And “coupons.” If my question is about the weather, I emphasize “WHAT..” and “WEATHER” so that those are the words he really hears.

It seems to be working.

Here is my BlogHer interview with Blogger and Autism Mom Shannon des Roches Rosa! Enjoy!
(and Happy Birthday Ben and Laura)!!!!

My book, the Autism Mom’s Survival Guide: Creating a Balanced and Happy Life While Raising a Child With Autism will be out in stores a week from today (or tomorrow).

Chapter 8: Looking Toward the Future

…Jane, a kindred spirit in Milwaukee, is way ahead of me.
Her son, Chris, is thirty-three. “My son has been working
at Barnes and Noble and living in an adult family home
in the community for eleven years,” she wrote me. “I still
suffer from separation anxiety and miss him every day
(even though I do see him every weekend). I can tell you
that I still do not know if this is the course he would have
chosen for himself. He does not verbally indicate whether
he is happy or not (he has limited speech). We judge his
well-being via his behavior.” This has always been our
modus operandi with Nat, who so often cannot or does
not express what is going on inside.

Jane impressed me with her positive attitude and her
ability to meet difficulties head-on, despite the challenges of
being a single mother. “I was divorced when Chris was six or
seven years old,” she told me. “I really felt alone. I just wanted
to take care of my son and daughter. We all moved to Akron,
Ohio, because I had a stepsister there. It was great because we
had family; we had supports.”

The support of her stepsister enabled Jane to go back to
school and earn a degree that would help her get a good job.
After she finished her education, the three of them moved
back to Milwaukee and lived with Jane’s parents while Jane
looked for a job. Jane feels she was so lucky to have been
able to do that, as opposed to feeling discouraged about
moving in with her parents. “Those were the happiest days
of Chris’s life,” Jane said. Even now, twenty-six years later, he
points in the direction of her parents’ old house when they
pass their old neighborhood. It is Jane’s dream to buy her
parents’ former home so that Chris can live in it again.

Jane’s strong sense of what is important and her ability to
stick with that has convinced her that advocacy is the key to an
autism family’s happiness: advocacy for the child and for the
parent. “I want more for him,” she said simply. “I want to build
a better world for him while he’s alive.” Doing that is a tall
order, but Jane has learned that facing the obstacles that come
up gives her such a feeling of accomplishment. “You have to
stay on top of all the tasks related to supporting Chris as an
adult in the world. It never ends. But it’s the challenge of it
all that interests me,” she said. “If you’re negative, all the work
you’ve accomplished will cave in. It is just that simple. Chris
can sense my attitude. It affects him in so many ways.” And
being negative will affect you, the parent, as well.

Jane also discovered the value of finding trustworthy
people who understand her child. One such person helped
Jane’s son Chris to get the job he has had for eleven years at
Barnes & Noble. “Chris had a job at a public library,” says
Jane. “There was a woman there who knew how to connect
with him. When this woman left the library to work at Barnes
and Nobel herself, she took Chris with her.” Since then, she
has acted as a job coach and sometimes serves as a liaison
between Chris and the customers. But it is Chris’s ability to
internalize the layout of the bookstore that has made him
the cherished employee he is today. “He knows just about
where every book is in the store,” says Jane. “He helps customers.
He walks them to where their book is.”

Ned and I went into a Newbury Comics store today and were browsing the buttons, figuring we’d buy a few funny ones for Benj for his birthday. We were laughing at the button that said, “Ask me about my explosive diarrhea.” But as my eyes scanned the long rows of the ironic, witty, silly, I saw a button that said, “I’m retarded.”

“Ohhh,” I said to Ned, pointing at it like it was glowing with radiation. I started to pick at it, thinking I would remove it, throw it on the floor. Ned said, “Sue, you can’t do that.”
“But they shouldn’t have that,” I said.
“You can’t vandalize, though.”
I sighed. I looked regretfully at the other buttons; the fun was over.
“They shouldn’t have that,” I said a little louder, suddenly realizing I wanted the guy behind the counter to hear me. I said it again and he looked at me. I was quivering for a fight, all of a sudden.
“You don’t have to — uh, buy it–” he said. It was the argument everyone makes: you don’t like what I wrote, don’t read it. You don’t like what’s on t.v.? Don’t watch!

It was a legitimate argument. It is the anti-censorship argument. First Amendment and all that. The breath and blood of a free country. Yes, I agree, I don’t have to buy it, read it, or watch it. You start taking away that right and you are on a slippery slope.

There’s the law — and then, there’s just plain humane behavior. Newbury Comics doesn’t have to sell that particular button. They can make the choice to have one fewer button on that stand– there were so many, nobody would have missed it.

We have so many other words in this language of ours. We came up with better words — and concepts — for blacks, for Jews, for so many. There are so many ways to say something. And no one is telling the Newbury Comics dudes that they can NOT sell those buttons anymore. But Newbury Comics can decide that it’s just not all that funny anymore.

I was shaking with anger as I headed for the door. I saw a guy that appeared to be the manager, and I tried talking to him. “You know, you shouldn’t have that ‘I’m Retarded’ button for sale over there. It’s not a good word.” I wasn’t sure what to say. There are a lot of words out there but sometimes my mouth can’t find them.

But he got it. He looked at me, and said, “Hmmm. Well, I’ll be happy to bring it up with my supervisor.”

I gave him my best smile. “Thanks!” I said. “That’s great!” And I left. One down, 299 billion to go.

Each one of them made their appearance to me like the stork-brought babies in Dumbo.
The unfolding of the blanket — I could not swaddle them; the edges fell away limp and loose. It was like I just couldn’t put them away, even for a moment. So Ned did it for me.

Looking at their faces for hours, trying to figure it out. Who are you? I asked Max, laughing at his square-ball head and tiny pointy nose. Where did you come from? I talked to Nat, my lips never far from his head, my nose from his skin, like he was my food, my air.

But you — if ever there was a Changeling, you would be it. Dark, moody. Always thinking.
The worlds you draw. The words you write. Piercingly grim, achingly hopeful. Every nuance carefully shaded, intentionally subtle. All is there for a reason, everything purposeful. Angles I would never consider. Stories that make me shiver — with joy, with sadness.

And yet that is also us. Sometimes it is harder to see what is closest.

I write this because it is four days until you slipped into the world, my little B-nut, a third gift from God.

Chapter 7: Letting Go: When Our Kids Leave Home

It is as if, by leaving home, Nat has been propelled to
another level where perhaps he now feels the need to communicate
with me in a way I will understand. I believe that
he needs, more than ever, to connect and he seems to be
aware of that.

Nat is always a surprise, sometimes because he shows me
that he is just a teenage kid, and not a Disabled Teenager.
This was clear when, another time, I heard him saying, “Peeiss”
and giggling. Could it be . . . ? Yes. Nat was laughing at
body parts, just like so many kids do!

Thus I realized that the words at the end of Nat’s seemingly
senseless phrases were full of meaning. This small
glimpse into Nat’s mind felt as good to me as any conversation
a mother could have with her teenage son.

It is often difficult for me to remember that Nat’s own
particular development and progress is actually OK. I guess
I am scarred in some way since his babyhood, when nothing
went as planned. But sometimes his phases parallel Max’s so
strongly that I get a kind of flash of understanding: They are
both teenagers, after all, and they are both leaving the nest,
one way or another.

One night during the summer Nat left home, I got a call
at eleven p.m. from Max, who had gone off to Vermont for a
week with his girlfriend’s family. I had put him on a Greyhound
bus Monday morning, reaching up to hug his hard,
broad shoulders and to kiss his impassive face. It smarted
just a bit to let him go, and to see how eager he was for me to
leave the bus terminal.

I asked Max to call me when he arrived, but he forgot
until late in the evening. He was a little sheepish on the phone
at first, knowing he had not done what I had asked him to do.
But there was something else that shaped his tone, a roundness, a curl of
happiness that I had never before heard from him on the
phone, or perhaps had not heard it in a long time. What surprised
and touched me even more was the content. He kept
offering information, descriptions. He told me how cows
were “really disgusting, because they lick their noses and so
their faces are always wet with either saliva or snot,” and then
he laughed. He described the beautiful large house he was
staying in, the icy-cold pond, the “crazy stars.”

When I got off the phone, I felt happy, full. I think it was
because for the first time in a long time, Max really wanted to
talk to me. What I realized then was that even though things
were so different for us these days, we were all still connected.
My sixteen-year-old and my eighteen-year-old were both
moving on from here, but neither one had let me go.

We were sitting in the bleachers at the gym at Clark University today, in between basketball games. Nat’s team was in Special Olympics Massachusetts State Games this weekend, and we were waiting for our third and last game.

I felt as if I had just finished a large feast–tired, well-gorged, and satisfied. Although Nat’s team ultimately were 1 and 4, the second game today was magnificent. That was when they hit their stride. Unlike last year, just about every athlete (as opposed to the unified players, who are not cognitively impaired) on Nat’s team played really strong offense. Nat, G, B, S, J, and C all brought the ball down the court several times during the game where one or the other made baskets. Nat scored twice. M did not dribble much, but he has such focus that he seems to be psychokinetic; it is as if his eyes will that ball into the basket. He stands very very still and stares upward, and it seems as if he is moving in slow motion. He brings the ball up and just about every time, he makes a basket.

At Special O you are in the magnificent presence of disability. Special needs, disorder, birth defect, all of those terms that make outsiders shudder: they are in full view, right in your face. You see disability in all of its rawness, and there are moments where this fact, of the glaring, obvious, outwardly distorted and seemingly different are so apparent that your breath catches. And we don’t shudder at all. These are our kids, and their teammates. This is their moment.

It is the flawed moments when Special O is the most interesting. One moment is when a teammate forgets which basket is his and scores for the other team. Another is when someone makes a terrific shot — long after the whistle has been blown. Another is the way the team members hang onto the ball, twisting and turning away from an opponent, traveling down the court with it in their hands; or when they try to slap it away from each other, greedy and nasty. Sometimes an athlete will be pushed down or will trip and fall. I saw one stout angry guy start to hit one of our teammates, in frustration.

We clap and yell when our team makes a basket; but we also clap when the other team makes a basket. We also get pissed off when they make too many.

Another potential pitfall is underestimating an opponent. This is really the parents’ issue. Sitting there in the stands a few of us noticed this extremely short, rotund man, who did not move very fast. But — oh my God could that guy shoot. It started to get to be, “Oh, no here comes that guy!” Same thing at another game: two guys who seemed almost to be twins, short, wide, middle-aged, wearing pale gold shorts; they were a whirlwind.

Sometimes the unifieds get a little aggressive. I don’t think anyone wants to win as badly as they do. The way they jump to seize the ball — Ro is one of them. She flies through the air. She runs like Jackie Joyner-Kersee, her feet smacking the floor like thunder. She will not let the other team have the ball. She gives the other unifieds (the opponents) “the look,” and like Medusa she could turn them to stone. (Although Ro is beautiful.) (Look in the background at #7, my dear Nat, going on Walkabout all of a sudden.)

I thought I’d seen everything. Every moving, sweet, gripping, heart-stopping instance. And then, just before our third and last game was to start, this little woman walks by — bespectacled, slightly shuffling. She couldn’t have been more than four feet tall. She was probably in her thirties. She cradled a Paddington Bear against her cheek. My heart just turned right over. I wanted one, too. That was the Special Olympics moment, the reason we all go. Disability is real there; nothing hidden, and no one ashamed. It is interesting, it is poignant. We see that “they” are all human beings with needs, desires, anger, spitefulness, caginess, and every other human nuance. Paddington Lady and all the others remind us that “they” are “us.”

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!!

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.

Fantastic. Perfect for March 3d! And kudos to my buddy Tim Shriver as idealistic as they come, who produced The Ringer a few years ago. Here are some clips, a propos to tomorrow’s Spread the Word to End the Word international event. Tomorrow, be aware and make others aware of how the R-word hurts us all!

Here is an excerpt from Chapter 5 of The Autism Mom’s Survival Guide (for Dads, too!). Chapter 5 is called, “Improving Our Love Lives…Yes, That’s Important, Too!”

How do two people who are so many things to each
other (friend, partner, diaper changer, breadwinner, bread
baker, autism teammate) switch gears and go back to being
lovers? It is tough in any kind of family, but with autism in
the mix, the intimacy situation between spouses can be an
even bigger challenge. We’re worried about making it to various
appointments and are dealing with the constant educational
and therapeutic issues that crop up—everything from
learning yet again that a speech therapy session in school did
not happen to wondering how to toilet train, to getting a
child to sleep the whole night or to stop biting.
My friend NancyBea put it this way: “We are not weird
if we’re not having sex. It should be OK to admit that with
autism in the family it’s really hard to have any kind of
sex life.”

Of course it’s not weird if autism parents stop having sex, but
it’s also true that we don’t have to put this aspect of our lives on
hold either. Most of us don’t want to disconnect sexually from
our partners, but how do we prevent it, with such a lot on our
plates? We all know that a person’s sex drive can be buried under
family needs, long work hours, health and self-esteem issues,
even boredom. We also know that autism can compound any of
the above. However, once begun, sex is always worth the effort.
It is so oddly ironic that now, married and older, we think of sex
as something to work at, just as, when we’re young, it takes willpower
not to do it! Nevertheless, I do know that sex is and will
always be a key ingredient to my personal happiness, particularly
in a long-term relationship such as a marriage. But knowing
something and feeling it do not always go hand in hand,
especially with something as complex as sexuality, where there
can be many disconnects between what you want in your mind
and heart and what your body can do.

The psychologists and autism moms I contacted confirmed
that most of us are focused on just getting through
the day. In our harried lives, it is so easy just to let sexuality
go. Dr. Sharon Waller, a clinical psychologist in Brookline,
Massachusetts, says, “In my therapy sessions with autism
moms, it’s hard to get them to focus on themselves. The way
they use the time we have together is to talk about their child.
Their therapy is primarily about getting validation and support
for their decisions related to treatment options for their
child, the IEP process [Individualized Education Program],
and addressing behavioral challenges in their children. When
they do refer to their marriages, they might say in passing,
‘We never have sex anymore.’”

Dr. Waller points out that having children often strains
a marriage, whether the children have special needs or not.
“The research points to a decline in marital satisfaction once
children arrive,” she says. However, the difference autism
makes is in the frequency and intensity of the problems.
When raising an autistic child, challenges crop up again and
again, often unpredictably…

We owe it to ourselves to make sure that there’s room for
intimacy in our lives. No matter what we are up against, love
is a basic human need, necessary for our personal nourishment.
It is indeed possible to honor this need, but in order to
do so, we have to acknowledge that it is really OK , and not
selfish, to want this. So how can people dealing with autism
in their lives allow themselves personal pleasure and connection,
given their busy, demanding, and stressful lives?

The more I asked around, gently, about marital happiness
and thought about the frustrated responses I got, the more
I realized that the only way to approach these dilemmas at
all is to start with small, simple goals. Ned has often said to
me, “If you want to make a change, start with one easy thing
today.” In other words, set yourself up for success. If we go
around thinking of ourselves as “never having sex,” and if we
go right to “Oh, just forget it,” then that door will probably
stay closed longer than it has to…

[Want more? The book will be out March 30th! :-)]