Susan Senator

Chairman of Special Olympics Tim Shriver’s eloquent and forceful take on what “We the People” can mean for our country and perhaps the world. Read it here.

Fast comfort.

The top of the roller coaster.

A little danger stops my breath. Lifts my blood. My head floats near my neck. Legs orbit endlessly around their pedal planets. Highest gear feels like lowest. The world turns upside down. The best of childhood, like jumping off a swing at the scary point.

The hill.

It varies me daily though always the same. Yesterday: burning lungs, smooth muscles.  Today: short gulps of breath, burning pull of thigh.

Why? Still, if I stare only at the ground, submitting to my tire’s steady insistent seduction, if I remain mesmerized by my struggle, I don’t see what’s left ahead.

The summit.

Now, I am there, searing pain that I have anticipated in almost sexual certainty; it explodes in my throat, a supernova of satisfying pain, glorious but now dying down so quickly. I listen for it to give way to vast open air. The harshness softens and I breathe.

Soon, soon, the heart wakes up after its brief post coital sleep and relinquishes my blood. The red blanket covers me, calms my lungs with a mother’s hands and I am warm.

At last, in balance.

Today, while getting a root canal, I had a lot of time to think. A friend had told me to listen to music while it was going on, and so I brought my tunes along. I knew that would be risky because I am susceptible to music mush, where I hear a song and it takes me right back to a memory, kneading my heart like bread dough. But I have never been one to avoid certain emotional swamps, and so I went, because it would be better than watching bits of my tooth dust fly out of my mouth.

I say I am an emotion explorer, but that is actually not always true. Sometimes I avoid like crazy, so much so that I turn to stupid destructive behaviors and make them the problem, just so that I don’t have to sit with a bad feeling. An example we can all relate to: eating junk food. And that’s just the start of it, that’s the vice I can admit to. See, people think they know me because I write right from my gut but the fact is they don’t. There is so much inside me that I don’t even know because I can’t deal with it.

Lately I have not been able to write at all. One big expository kidney stone. So I decided now that the only way to relieve this is to just start typing. I have been having a very hard time since September. And while yes I do suffer from depression and also the opposite, I feel that this terrible sadness that has plagued me on and off, mostly on, since the fall is about change. Nat is in his house, Max is back at college,  and Ben is at the high school. The three of them are flying. They are launched. I am that familiar cliche: emptying nester. I’m a mother most of the time without children, children I’ve been plugged into, umbilically almost, for 23 years.

Roll that tape back a few sentences.  Let’s not skip over all three boys like some kind of long-memorized rosary prayer. Each of those beads is a world unto itself. I’ve shone so much light on that first bead, that gem, that diamond in the rough. My Nat. But this fall, it is the second bead that is sticking in my windpipe. Max is back at college. That is where my feelings alight, like scary bats at twilight who finally find some filthy hole to dive into. Max. I wasn’t sure until I was in that dentist chair today, and on came Sugar Mountain.  You know, you can’t be 20 on Sugar Mountain. And even though Max is 20 and no longer on Sugar Mountain, he’s in Greenwich Village in New York City studying film, and that’s pretty close to being in an amusement park.

I miss him so much I can barely even mouth it. But I can type it. I remember once when we watched a baby film of Ben, Max said to Ned, “I didn’t hug him enough.” That’s exactly the feeling I have now about Max. I didn’t everything enough. I still don’t. When he’s here, I want to do and say so much but I don’t know what. I want to hold him, but it’s not like holding that fat little baby, of course. It is a bony, muscular man who is a head taller than me, so it isn’t quite the same. He gives a quiet little chuckle whenever I lean in to kiss him. Why does he do that? Is he uncomfortable? I guess. It’s always been that I don’t want to overwhelm Max with all my emotion because — I don’t know why.

So I sit there looking at him and smiling because my mouth just does that when he’s around. He walks into the room, and there seems to be a big general exhale going on. Everyone is relieved. We all know we will feel good now. He brings with him his laptop, so we hear his music. Never obnoxious stuff that has to prove something. Sometimes whiny female stuff, sometimes ugly White Stripes cacophony. But mostly, feathery guitars and interesting lyrics. Light yellow stuff that makes you feel like everything is okay. That’s Max.

I know he wasn’t put here on this earth to make us all feel alright. It just happens. He’s not always happy, and when he’s not, he finds his way to me. He’ll surprise me, in the middle of a gulp of coffee, with some big raw cut in his young fleshy life, and I will drop everything, do anything to heal it. Out of nowhere, out of the deepest parts of myself, comes this clarity — for him. Things I just know. Ideas I have for him of how to look at it, what he might try. It’s alright. I make him feel alright. Every now and then, I can give him his own gift, and it lifts me like a balloon, softly into a light blue sky.

I received this internship posting today, and I was reminded of what my grandma used to say about my brief visits to her down in Florida: “It’s only a crumb, but I’ll take it.”

First of all, let me say that the Lurie Center, who offers this posting, is an excellent, forward-thinking bastion of autism knowledge, compassion, support, training, and all the things we families with ASD look for. But the fact of this offering got me thinking about portions and crumbs, and having a seat at the table.   

JOB INTERNSHIP PROGRAM for young adults ages 18-30 on the AUTISM SPECTRUM offered at the Massachusetts General Hospital’s Aspire Program.

Internships are at established companies in the Boston area.*****9-week or 17-week placements with pre-internship preparation*****

This is an opportunity to refer students or graduates with Asperger’s syndrome and related challenges: The program’s goals are to:
* Offer interns work that is interesting and useful, where they apply job related skills that will help them to be prepared for future employment.
* Help participants learn the social aspects or “soft skills” needed to succeed in the workplace.
* Provide a Job Coach for on-site support and weekly off-site training and peer meetings to ensure interns have a successful experience.

First internships starting at the end of January. Sites are at established companies in the Boston area including three placements at Mass General Hospital’s finance and facilities management depts.
Internship Program
www2.massgeneral.org

So I deduced from the careful, thoughtful layout of the opportunity described that it is a rare enough kind of thing that an autism organization attached to a major research hospital has to offer it.  But opportunities like this one should be common, should be offered everywhere!  For example, isn’t every employer required to accommodate in the manner described above, if prospective employees need such training? If we have to build ramps, shouldn’t we also be building in Job Coaches and soft-skill training?

It reminds me of the finishing schools around here that some autism families have to send their graduated kids to (for big bucks) because the school system did not train them adequately, or simply ended too soon for them to acquire the skills they needed. Why do autism and ID families just accept this kind of educational approach? Shouldn’t the school system be required to job-train and independence-train (sorry about the syntax). Shouldn’t that family instead be allowed to take their IDEA funding elsewhere, say to a community college who offers the education they need?

My question is this: is it really so complicated to job train people with Intellectual Disabilities and ASD? Okay, maybe someone with a history of aggression; but ask Peter Gerhardt about how he has worked with many, many aggressive people on the Spectrum and guess what? They ended up learning how to work. For every person, there is likely a job out there that they can do. Every person. For a good analogy, look at Special Olympics. They take any guy with an Intellectual Disability and they get him/her a sport. In Nat’s case, they taught him three sports. They just do it, withNikes or whatever. Volunteer coaches, and rarely do they even have one-to-ones. It’s not rocket science, it is human relating.

Or ask the organization I work for, the Community College Consortium for Autism and Intellectual Disabilities, (CCCAID) about their community college programs that not only job-train, soft-skill train, but also independence-train, and the businesses themselves pay, and the students often end up working at these places after they graduate. At least, that is the plan. CCCAID has a partnership with Thompson Hospitality now which will provide a certification, a bona-fide working experience while its students with ASD and IDs are in their community college programs, and these students will have certificates that were vetted by the industry employers themselves. You’d come out of the program being able to do exactly what Thompson Hospitality Corporation wants its employees to do. Now that is what I call an opportunity. Especially because you are training people to do work that you need. It is not an act of charity. It is a business arrangement.

We shouldn’t be made to feel like Oliver when we ask for more. We are not biting the hand that feeds us. We — families of those with Intellectual Disabilities ASD and potential employees with Intellectual Disabilties and ASD — should be demanding accommodations in the workplace. A place at the table. And I don’t mean the kids’ table.

Here is a workshop up in Danvers, Massachusetts that would really benefit families with disabilities. Jewish Family and Children Services is a branch of Combined Jewish Philanthropies, and they do excellent presentations, very pragmatic and down-to-earth. They also have day programs and they create housing all over the state. Betsy Closs, who is leading the workshop, is a dynamo, who knows everything about housing for our guys. They are limiting the workshop to 12 so RSVP quickly.

Even if you don’t go to the workshop, you should consider contacting them to learn about their many helpful programs.
Understanding Housing and Support Options for Adults with Disabilities
On Monday, February 11, 2013, Betsy Closs, MSW, Director of Services for People with Disabilities at Jewish Family and Children’s Service, will provide an introductory workshop titled Understanding Housing and Support Options for Adults with Disabilities.

This workshop will provide a basic overview of housing and residential services for adults with disabilities. Special attention will be paid to supported housing options for those who will not receive DDS funded residential services.

Where: JF&CS North Shore Office
175 Andover Street, Suite 203, Danvers

When: Monday, February 11
6:00 – 8:00 p.m.

There is no fee for this workshop, but an RSVP is required. Please call 781-647-JFCS (5327) x3004 to register. Space is limited to 12 participants.

I was talking to an autism mom the other day while our sons practiced on their Special Olympics basketball team, when I realized I had three other parents waiting to talk to me. Suddenly I’m a wise woman simply because my autistic son is now an adult. We have passed through the Inferno gate of Adult Services but unlike Dante’s, we have not abandoned hope.

But hope was in short supply that Saturday morning. Hot anxiety rose from these parents like steam from a kettle. They rifled through their bags and pockets for something to write on, to take down what I was saying. Every few sentences, one of them would stop me and say, “Wait, what does that mean?’ And every so often, they would stop writing, stare out at the crowded gym and say, “Oh, god, this is so overwhelming. I don’t even know what to do next.”

I could tell her what to do next: everything. Even though her son is around eight, she needed to be planning for his future: job, housing, caregivers. I don’t just mean creating a Special Needs Trust; I mean learning about all the adult services and resources that are available and how to access them.

Just speaking those words makes me go bleary and looking for my bed. But as many autism parents learn early, sleep is something you learn to do without. From the typical sleepless nights of infancy, to the more autism-related sleep disorders that so often develop, to the worry, if you have a child with autism, you think of sleep as a precious gift, not an entitlement.

So I knew these friends of mine would understand it when I told them that in adulthood, there is only one entitlement for our guys: Day Habilitation, also known as DayHab or what it often is, Adult Daycare. The other thing they needed to know is that all roads pretty much lead to Medicaid.

This means you need to know about DayHabs and you need to know about Medicaid. The following is my understanding of Medicaid and how it is used in Massachusetts. Take it with a grain of salt, some of the details are probably incorrect. But if you understand the overall gestalt of what I’m saying, you have mastered the first lesson in Autism Adulthood 101. For the second lesson, you will have to ask specific questions about what you’ve just learned, to adjust my errors, my take on it. So leave that for the second lesson and just learn the first today:

Medicaid dollars are used differently state by state, but by and large they provide services either directly, as in the case of DayHabs which bill to Medicaid as therapeutic programs, or indirectly, as in the case of waivers channeled through the state agencies. In Massachusetts, the waiver money is harder to get, because the state agencies are all competing with one another for this pot of money that goes to the Executive Office of Health and Human Services. Whereas with the DayHabs themselves, the funding is more directly accessed, from program to money source. So families have to choose a DayHab, but they don’t get to choose which office of EOHHS they are assigned to. And they don’t get any say in how much funding their child receives — if any.

We have to assume that getting funding is going to be a battle. For one thing, there is the increase in numbers: while Nat’s peer group with autism numbered 2 in 10,000 just a decade before him, the two decades after him have seen the number increase to around 1 in 100. So, as hard as it was for Nat to get his funding, it is going to be exponentially harder for the up-and-coming families because there are so many more kids in need! For another thing, the budget is tighter. Some in the Federal Government want to cut or reduce the Medicaid program, strained as it already is. This is largely conservative Republicans, who believe that we autism families, veterans, elderly, homeless families, mental health patients — can all do without. I am so worried about that. I don’t see how this would work. I think it means mostly that families would care for their adult children until they died. Then if they have not been able to find or fund caregivers, the adult child is handled by the state — which means costly institutionalizing. Or worse — living on the streets. But some people have had one experience with someone living off the government who didn’t deserve it and that’s enough to sour them on these programs.

Others, largely Democrats, want to raise revenue to keep Medicaid going. I don’t know if taxpayers who don’t understand the plight of the Medicaid-dependent will feel about that. “Take care of your own,” some say. We do. We try. See above, sleepless nights. Broken families, traumatized siblings, depleted bank accounts. (And don’t you accuse me of bad-mouthing people with autism. I am bad-mouthing the difficulty of doing right by them with so little guidance.)

There will have to be compromises on both sides in order to come out with anything the two agree on. And this means there will likely be less for families with autism.

So parents of younger kids have to figure out now what they can do (and can’t do). They have to plan, like we did, for the worst-case scenario of no funding, and of only some funding. They have to understand that they must advocate with the state agencies while realizing that is the tightest place to go. So just like in an IEP, you go in knowing what are your non-negotiables and what you can live without. Nat needed good caregivers so that was our non-negotiable. Then I would take on the DayHab. I would do what I could to make his days worthwhile, but I was determined that he have his own place to live, with roommates and oversight. I had already seen how he fell apart living here, and the toll it took on my family, Ben especially. I knew that we would not live forever, and I wanted him to be with roommates, and we with other families, to have some kind of net underneath him.

What can parents of non-adults with autism do right now?

1) Find out who your Department of Developmental Services liaison is and make them know you and your kid. Google the number, find out, call.

2) Go to ADDP.org and find DayHabs you want to visit. Get aquainted with what they are like.

3) Learn about Medicaid-funded programs like Adult Family Care (AFC)

4) Get your kid on Section 8 (subsidized housing) waiting lists.

5) Do what those parents did with me: find each other and exchange knowledge. Parents are pretty much the only ones out there who will be glad to help you.

6) Acknowledge that you are going to feel overwhelmed by even just one of these items. Feel it, but then dive in a little bit again.

Rinse and Repeat.

We all have to eat, so I figured I might as well make it fun. For Chanukah, Max had given me the Game of Thrones Cookbook: A Feast of Ice and Fire, and so far everything I’d made from it has been delicious. Our whole family loves the HBO series Game of Thrones, and Max and I have read all five of the George R.R. Martin books and loved them even more.  In case you have been living somewhere far away, like across the Narrow Sea, you must know about the phenomenon that is Game of Thrones. It is a fantasy version of the Yorks vs. the Lancasters, set in fictitious Westeros. The loyal and true Starks and the scheming and fascinating Lannisters are great houses, as are the beautiful, powerful, and oft-mad Targaryens and the, well, the Martells. (The Martells are the Hufflepuffs of Westeros). Each of these houses and lesser families also intertwine in a tale of passion, intrigue, journeys, treachery, and growth.

At first, however, I did not quite understand why I liked GOT. Max raved about it and finally got us to watch it with him, in — of all places — his dorm room at NYU. There I was, lying next to Ned on Maxie’s bed with friends of his on the opposite bed, feeling like we were back in college, but better. When Max loves something/someone, he does it with his heart and soul. His loyalty is Stark-like and everlasting. He still has his Blue Blankie from his Day One. He cried when Ben lost his (Ben’s) favorite Superman toy. He loves the people in his life and truly shows up for them.

I think my GOT obsession is wrapped around my love of Max. I saw the story through his eyes, almost literally that first night in his room. And when I read the books, he would Instant Message with me from college to find out where I was in them and what I thought of what was happening in the story. When I finished Book V, we talked and talked about what it all meant, what was to come (there are two books still to be written), how did this relate to that, and so on. I never felt quite finished with these conversations; I wanted to talk and talk to him but I could not articulate the longing I was feeling.

Tonight, I realized that this was likely the last dinner we would have in a while as the original five of us. Max was going off on his adventures and then back to school pretty soon; Nat had his various social outings. Ben is here but he does not enjoy eating dinner that much — except tonight was different. I made a beef and bacon pie; the top was a bacon lattice which Max lovingly made. I baked two round loves of oatbread, and finished up with corn fritters drizzled in honey. This is an authentic meal from Winterfell, the North, the land of the Starks.

Max was with me, sauteing while I chopped and stirred. The smells of cooking filled the downstairs: the bakey smell of bread, the hot buttery smell of bacon, the bubbly brown of stewing meat. Nat flitted back and forth, watching what we were doing. At one time he seemed alarmed by the unusual combinations of food (steak bits and bacon, pie dough filled with meat, not apples) and he put his hands to his head and said, “Spaghetti. Pot.” I reassured him that he would like this dinner.

When the food was ready, I ran upstairs and put on an old midnight blue velvet dress I’d bought 20 years ago from Laura Ashley. I pinned up my hair and when I came down, Ben complimented me by calling me a total dork. “Welcome to nerddom, Mom,” he said. My heart swelled with pride because I could tell he approved. I motioned us all over to the table, which I had set for a Medieval-style feast, in Stark colors of white and gray. Ben made the Stark sigil  of the wolf, and hung it in the window. We lit candles, and Nat said the Hebrew blessing for candles. Ned got out the music from Game of Thrones, which his brother CB had bought me for Christmas, and Ben pronounced it, “epic.”

We ate and ate. Everything went well together: the slightly sweet, oaty bread; the honey and corn fritters, the dense pie. Ned and I shared a goblet of wine (my sister Laura had bought the wonderful goblets for us years ago), and ate off of my grandmother’s china. I was swathed in velvet, surrounded by my  grown-up sons, my handsome husband, the shining silver, swelling music, and hot delicious food. I think we all felt it, this crystalline moment in time, suspended in a different world, and yet, grounded by love, the simplest and most splendid of emotions.

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From Dictionary.com:

The other day in my favorite bookstore, I came upon a paperback by Dr. Simon Baron-Cohen, The Science of Evil. I have not read the book, but in the New York Times Book Review in June of 2011, Katherine Bouton writes: “The Science of Evil, by Simon Baron-Cohen, seems likely to antagonize the victims of evil, the parents of children with autism spectrum disorder…” Baron-Cohen is in some ways the Bettelheim of the Modern Autism Era (1989-present) because he is the one who coined the term “MindBlindness” and developed the Theory of Mind. I believe that these concepts have likely done more harm than good, at least in the hearts of autism parents. I can’t speak for people on the Spectrum, but I assume that some of them don’t like it being said that autism = inablility to empathize. But this is essentially what Baron-Cohen believes and has researched. While I see how he came to those conclusions, I do not understand why he has not moved beyond them. His theory when applied to autism is flawed because he is attributing flat affect and perhaps communication errors and neurological mix-ups to an inner lack of empathy. In other words, just because someone with autism can appear not to care about or understand another person’s mind, doesn’t mean that is the truth.

I don’t believe that in autism, empathy itself is broken, as much as is the mechanism for interpreting social signals and cues. Nat, for example, may smile at a moment where smiling is basically wrong. That doesn’t mean he is sadistic. I believe it means that he doesn’t know not to smile. But he might be feeling the “correct” emotion. Smiling may mean something different to him than it does to me.  Baron-Cohen and those who use the term Mindblindness are reading the autistic’s signals wrong.

In the wake of the violence in our nation of the last few years — the killing rampages in Columbine, West Virginia Tech, and Newtown — and the speculation about the diagnoses of the murderers (the media asked questions like: Did they have Asperger’s? Did this have any relation to the deadly behavior?) it is absolutely necessary for us to unhook autism spectrum from explanations of evil. And if people continue to believe that autistics have no emotions or empathy, then autism is going to be blamed for crimes that actually have nothing to with it.

My experience with autism spectrum is very different from the misconceptions in the media. People will still ask me if Nat has special brain powers. My guess is no, but he is particularly gifted in charming people. Just today, I had wandered upstairs to my room, where I was suddenly experiencing an awareness of depression, dripping all over me like cold rain. Nat was in my room, on my bed. I knew he’d leave because I had come in. That’s what he does.  He doesn’t like to stay in a room with someone else, if he has previously been in there alone.

I was looking in the mirror, thinking, “why?” as I often do when I’m depressed, as if coming up with the reason will somehow make it go away. I heard Nat walking around near my room. He was near my door and I said, “Nat, I’m starting to feel really sad. I don’t know why.”

“Yes,” he said, and stopped his pacing. He paused a beat, and then he came quietly into my room, settling himself on the bed. He stayed a while, watching me in the mirror, looking intently at my expression, my tears, my eyes — with simple yet complete presence.  And after what seemed to be a decent amount of time, he left. But for the rest of the day, I could still feel him with me.

New Year’s Rezzies:
1) Stop doing that bad thing
2) Start that hard thing
3) Decide to become that other thing
4) Work on that dream thing

–Susan Senator 12/31/12