Susan Senator

I just now drove down into the busy part of town and while I was stopped at a light I saw a man standing alone, smiling. I looked back at the red light and then quickly back again at the man. Sure enough, he was smiling still, the same full-on toothy genuine kind. I gave him another nanosecond, glanced again. Yep, still. I concluded that he was autistic. To back up my conclusion: he was swinging his body slightly. He tilted his head back, and the sudden breeze touched his hair as it breathed through the leaves overhead. He rolled his head downwards, still smiling.

A velvety pain spread through my chest, but I wasn’t sad. The closest I can come to naming this was a kind of exquisite tenderness, a protective small love, almost. Stay happy, Autistic Man. Sweet soul.

The light changed and I moved slowly, back to the small sharp sparks of driving in traffic. I thought about the man, and how purely joyful he seemed and then I wondered with a tinny pang if I was being patronizing. I know that I’m at least bumping right up against that line, assuming anything at all about him. But I don’t think so. If a broad continuous smile and enjoyment of a breeze doesn’t mean happiness I don’t know what is. Am I to assume that just because he’s autistic — and of course there’s the possibility he is not — that the smile could be anything? A sensory grimace? A meaningless arrangement of facial muscles upward? No. We humans have the power of observation mixed with intelligence and experience, and so we get to draw certain conclusions.

His easy happiness made me think about his difference. He — along with so many others who have developmental disabilities — just did what he wanted. Which is exactly what is “wrong” with him. In our society, normal means subtlety. Normal means taking an average of the population’s actions and expressions and going with that, rather than the astounding burst of unique feeling you may have inside. This guy was letting his insides show. Even though his inner joy was harmless and probably innocent, it is still socially incorrect to show it, unless the social average does that. No harm done, of course, in this case people were just walking on by. Good that they weren’t being pills about him; bad that they weren’t touched by him.

I got to thinking about how people sometimes assume that those with Down Syndrome, for example, are happier than most, and that that is the special gift they give us. “I don’t know, they just seem to love people more, they just see the goodness in them,” is what some might think. But I don’t agree with this assumption, however, because we don’t know if a given person is happier than we are. But I do think that we can look at another person and conclude that he is showing his happiness more blatantly than most.

To me, it is that ease the autistic man had with his happiness that was the gift. It was the fact that he may not have even known that you’re supposed to reign it in a little or risk judgement.  Or he was simply unable to act any different. Or that he was consciously acting different. Any one of those possibilities is a gift to me because I have a real difficulty sliding into my most natural self. I am hyper-aware of others, it’s how I was raised. I may seem to be ultra compassionate and perhaps socially sophisticated, and okay I probably am. But one thing I can’t do very well is just stand there grinning my head off in front of a bunch of strangers. If I enjoy a breeze, I am conscious of enjoying the breeze and that it is, in that instance, okay to shut my eyes and smile. Maybe laugh briefly. But it has to end soon, or I’m a little weird.

(It’s only on my bike or with Ned that I’m the most me, where I can just laugh or sing without thinking.)

The way this man stirred my heart and made me think, and feel, in an otherwise ordinary boring crawl through traffic is special. I hope he never learns to be any other way.

I came downstairs and found ur note

(on instant message, of course)

It was just I love you

Just and all

When you’re really there

Even just

lower case

In bits

I rise out of my words

to my surface

to meet you.

Here is the link to the 90 minute PBS World show “America Reframed,” which aired the documentary Rachel Is last Tuesday night, May 6, 1014. Rachel is an intellecutally disabled 21-year-old about to graduate from school. She and her mother are working very hard to find her independence in the form of housing, but it is a struggle. The relationship between Rachel and her mom often are severely strained, which is what makes this film worth watching — the honesty in filmmaker Charlotte Glynn’s style makes you stop breathing sometimes, cringe other times, and always cheer for the family. After the documentary (60 mins long) there is a conversation between NY Times Reporter Amy Harmon and me, with the host Natasha Del Toro. Take a look; the link will only be good until August! Enjoy.

On May 6, the PBS show “America ReFramed” will be airing the new and unusual documentary “Rachel Is,” about a young woman with an intellectual disability and her last year of school. Rachel and her mom try to find a good living situation for Rachel — outside of her mother’s house. Rachel’s sister Charlotte Glynn filmed this honest and sometimes uncomfortable doucmentary.

Pulitzer-prize winning journalist Amy Harmon and I are the panelists who will discuss the documentary and issues around autism, after the film (this is the America ReFramed format). Natasha Del Toro hosts. Check your local PBS listings for specific time in your area.

Nat won the 2014 Worker of the Year Award from Autism Services Association in Wellesley, MA. Here is what Dr. Joel Smith, Executive Director of ASA said about Nat:

The 2014 Worker of the Year is someone who started at ASA in 2012, and immediately applied for a job, for which he just celebrated his 2 year anniversary, at a large supermarket chain. While that job is 3 days a week, this person also enjoys volunteering his time on his days off delivering hot meals to appreciative elders in the community. That commitment just reiterates how strong his worth ethic and drive is.

This Worker of the Year is someone who brings that same commitment to his leisure activities, whether it be his love of swimming in the pool or knocking down the pins while bowling. He is well-liked by his peers, and is always willing to lend an extra hand in helping others.

So it is our honor to announce that the 2014 Worker of the Year is…Nathaniel Batchelder!

 

GO NAT!!!

There are two new developments in quality of life offerings for people with intellectual disabilities and those on the autism spectrum as well, that I wanted to share. The first is a website and the second is an initiative.

1) “Interacting with Autism:” A Wealth of Information

The website is Interacting with Autism. Here is how they summarize their resource. The very last sentence of this paragraph is what drew my attention in particular, but read it all and click on the link, please!

 The site presents the most current, evidence-based treatment information to parents, educators, health care workers, and those on the spectrum.  It was developed collaboratively by Academy award-winning filmmaker Mark Jonathan Harris, USC university professor Marsha Kinder, and multimedia designer Scott Mahoy, working with the nation’s leading autism experts as consultants.  Based on an exhaustive review of the last decade’s scientific and treatment research, it uses case histories, animation, and documentary vignettes to provide information about autism and insight into how different families cope with it. You may have seen our Sensory Overload video, which was featured on everything from NPR to Andrew Sullivan’s The Dish.   The site’s unique format provides a dynamic environment for exploration, more so than a typical text-based, didactic site. It also presents a searchable video database with over 10 hours of interviews and a section showing how autism is being represented in popular culture.  The 30 full-screen videos examine a range of topics, including causes, diagnosis, treatment, education and advocacy and present a variety of perspectives–people on the spectrum, parents, and leading researchers and therapists in the field.   It welcomes comments and discussion, and allows for users to post videos.  Information on local insurance, Medicaid and educational resources are also linked through an interactive map.

 

2) Higher Education for People Post 22 with Intellectual Disabilities and Autism

The second news is an initiative about to begin in Massachusetts. A few months ago Massachusetts’ Chair of Higher Education Committee in the State House (Representative Tom Sannicandro) put together a Task Force on Higher Education for Students with Intellectual Disabilities and Autism Spectrum Disorder.  The Task Force consisted of educators, administrators from colleges around the state of Massachusetts, advocates, government agency officials, and two parents — I was one of them. Here is an abstract from the final recommendations, which can be found here.

Findings & Recommendations

The Task Force sought ways to expand opportunities for students 18-22 as well as students older than 22 with intellectual disabilities and autism spectrum disorder. The Task Force recorded seven findings from the hearing and made 15 recommendations based on those findings. Some of those findings and recommendations include the following:

Recommendation 1a: The Executive Office of Education (EOE), in consultation with the Department of Higher Education (DHE), the Department of Elementary and Secondary Education (DESE), and the Executive Office of Health and Human Services (EOHHS) shall develop strategies and procedures to assist students in accessing inclusive higher education, integrated competitive employment, and independent living opportunities.

Recommendation 2a:  Allow students who have not passed MCAS to enroll in inclusive credit and non-credit courses. Prioritize enactment of H.1080, An Act Securing Access to Higher Education for People with Disabilities.  (Rep, Tom Sannicandro has filed portions of H. 1088 as Amendment No. 692 to the House budget set to begin debate on Monday April 28.)

Recommendation 2b: Expand the Inclusive Concurrent Enrollment initiative for students with ID/ASD throughout the state, with full participation of the Commonwealth’s 29 public institutions of higher education by 2019.

Recommendations 3a:  EOE, in consultation with DHE and DESE, shall create training materials instructing state institutes of higher education and providing technical assistance on how to apply to become an approved CTP so that students with ID/ASD who have exited high school are eligible for Federal financial aid.

Recommendation 4a: Allocate funds for comprehensive evaluation and research of the ICE initiative.

I was interviewed by Nick Savarese of Special Olympics Massachusetts, for their podcast: “Sports is the Catalyst.” You can listen to it here.

My day suddenly became very dark when I got the call: “Nat’s had an incident.” This was yesterday. He was at his most anxious, and we did not know why. He was biting himself. Yelling, stomping. Punched a wall, apparently. He had to leave the store he was in. No, Nat, no! I moaned in my head. Not after all your hard work.

Nat is 24 and has autism, alleged developmental delay, possible sensory issues, suspected processing disorders, really a whole smorgasbord of challenges and disabilities. He also has a keen eye for detail, an open mind, and he’s very, very beautiful. That’s neither here nor there, but I mention it because I hate giving a whole dirty laundry list of his troubles and casting him in that light, when truly, Nat shines in a light all his own.  Autism has been called a kidnaper, a scourge, a monster-creater, but the real truth about it is, the worst thing about autism is that it casts a very long shadow. People see it, and not the person.

But here’s something interesting: shadow isn’t a bad thing. Shadow just is. It exists because of light. Shadow and light together help us see something. But when Nat’s behavior is inexplicable and aggressive, I feel like he disappears inside the shadow and I can’t see him. I forget that shadow is a part of everything. Light needs dark. Yin + Yang. Chiaroscuro.

Ned and I took phone call after phone call from Nat’s group home manager, into the night, to let us know that Nat was not himself, that he was getting out of bed, obsessing about other people’s routines. We all slept badly. The night was long and full of terrors, as Melisandre would say. Morning came, and so did another call. The word was, Nat was not “stable enough” to go to his day program. This had never happened before, in two years.  What was it, Nat? Please, don’t go back to those days when you were 17 and biting, jumping, screaming! I didn’t even know what it was about then.

But I heard from the autism community a long time ago that we need to check these “behaviors” out. We should always get our children examined when they “act out” and be absolutely sure they are not sick. Thank goodness others know that, even if I cower under the covers and shudder that “It’s Baaaack.”

Here and there we’d been hearing from the house manager and also maybe it was the day hab director that they had asked Nat if he was feeling sick he’d said, “froat.”Naturally, I was skeptical. Because whenever Nat is asked about his health, he just seems to say what he thinks you want to hear. I always tell medical professionals that he is unreliable that way, inaccurate. Still, I take him. Of course I do.

The house manager told us this morning that he was taking Nat to the doctor, and did I want to come? Within a few minutes, I had taken over. Ned and I were going to take Nat out to Starbux and then to the doctor myself. We got to Starbux and sat on one of those bench tables, right near two women who were deep in conversation. Nat chewed his chocolate chocolate cookie and I sipped my creamy drink. Ned had a smoothie.

Nat seemed really calm. He wanted to see the doctor, that was clear. He knew that after that he was going to lunch with me and to rest for the day. An easy day. I could feel that he was soft. I felt that the crisis might be over, that this might indeed be that he was sick. Later on we would learn that he did indeed have strep. Good for you, Nat, for telling us all. I will never doubt him again. He had been getting sick, and he’d been very uncomfortable, and he had acted it. His behavior was perfectly natural, given the circumstances. But even before the affirmation from the positive strep test, I knew that “It” wasn’t Back. He was back. He’d never gone. He’d just retreated into the shadows while he was sick, like we all do.

Looking down at his cookie, he put his hand through his hair and ruffled it. I absentmindedly reached out and straightened it. The woman next to me suddenly said, “He’s got great hair.”

“Oh, thanks,” I said. I often say thank you for Nat. The woman continued, “People pay a lot for color like that, but still it never comes out like that.” I smiled. The thing that struck me was that she was talking to me. Not Nat. The way people do when they realize that he wasn’t able to respond. She knew, somehow.

I looked at Nat. His hair, thick, soft and golden like a chick’s feathers.  “Really, he’s beautiful.” The woman was just smiling at him, all googly-eyed.

“He’s lucky to have been born that way,” she said.  Ned and I grinned at each other and basked in the light of our son.

Here is an issue that most of us can probably agree on: NO MORE ELECTRIC SHOCK for “treating” autism! I have written several times about the Judge Rotenberg Center, not 30 minutes away from me, and there they are infamous for their “method” of addressing “problem behaviors.” (Air quotes galore, because JRC is a sham.)

Once again, there is no behavior that justifies this. If you think you need to resort to electric shock, which has been outlawed by The United Nations Special Rapporteur on Torture. If we are forbidden by the nation — and virtually the world — to use electric shock as punishment or for “instructive” purposes, then how in God’s green earth can anyone justify using this barbaric method on a student? On anyone? Where’s the uproar? Where’s the outrage?

When I think of my darling Nat — and how he’s had to fight first to understand this sensory-insane world, how to deal with it, and finally, how to make his way in it successfully — I could just cry, to imagine a person like him being shocked, being hurt, abused, any of that. It makes me nauseated to my core. It brings up rumblings of hatred in me.

What does it do inside those students?

Below is the latest call for submissions, from the Autistic Self-Advocacy Network (ASAN). Click on this tiny image to read it.

We have until Monday April 14 to submit opinion here.

Right, right. April first. How fitting that it is Autism Awareness Month begins on April Fool’s Day. Why do I say this? Because we claim to want or to have awareness but we are fooling ourselves. What are we aware of? What are we supposed to be aware of? That people with autism exist and struggle? Autism Awareness makes no sense to me anymore. Unless you live in a cave, you’re aware. But do you get it?

I’m aware. Oh yes, I’m aware. I’m aware that there are more and more parents like me who do not know how to plan longterm for their transitioning/adult autistic family member. I’m aware that the Spectrum is broader but funding is shrinking. I’m aware that caregivers get little to no training. I’m aware that teachers are overwhelmed and that they may not know how to accommodate different learning styles, yet the world is becoming more competitive economically. I’m aware that only a small percentage of people with intellectual disabilities work. I’m aware that I love Nat crazy deep but I still am never sure if I’m doing right by him. I’m aware that society has so far to go. And so do I. Yeah, pretty much Aware.

Nat wins the gold in the 25 meter relay

Ben, Nat, and Max sat.

In Massachusetts there is a program called Shared Living, which is a good way to create an independent living set-up for your loved one with a fairly significant developmental disability. Shared Living is more of a community model, a more Self-Determined, Person-Centered model, whereas Group Homes can feel a little more isolated, perhaps more institutional, and are much more costly to sustain. Shared Living is basically a caregiver living with the person with the disability, together, in the caregiver’s apartment. The caregiver gets a stipend from which he pays rent and the disabled person contributes to the rent from his SSI check. The stipend can be adjusted using funding that the disabled person receives from the state Medicaid Waiver agency he is served by (DDS, Mass Rehab, etc.).  Sometimes people combine Section 8 low-income housing with the Shared Living model to help get an affordable apartment.

I am attaching a description of Shared Living and of the Roles and Responsibilities of the Provider (Caregiver) that I got from Advocates, Incorporated of Framingham, Massachusetts. Advocates is one of many service providers, and I particularly love them.

If you are not in Massachusetts, call your Department of Developmental Services or other state agency, or a service provider you know of, and ask about your state’s equivalent to Shared Living. Another Shared Living alternative is also Adult Foster Care, or Adult Family Care, which in Massachusetts is administered through Medicaid. Again, ask your state agencies about what Medicaid might offer, and what your loved one may qualify for. AFC is similar to Shared Living.

Great story in the New York Times about a man who helps train folks with autism in employment. Jay Goltz, writer for the New York Times, desribes how Dave Geslak owns a small business, “Exercise Connection, a company in Chicago that works with children who have autism. Dave has discovered that the structure and routine that his students learn from exercise build confidence, which can be a gateway to getting a job.” (NYTimes, “On Hiring and Autism,” March 19, 2014). Read the story here and then think about the many less-known routes there are to the goal of employment and our guys.

I have just discovered something kind of important (to me). Almost every day at some point I start getting anxious but also yawning. I almost start to panic — I don’t know why. I feel like I want to connect more with people but at the same time I can’t face that. Some days this feeling overtakes me to the point where I can’t work, I can barely function other than to do chores like laundry and cleaning. I start to get sad about this feeling. Why does this keep happening, I think. What is wrong with me? Nothing is wrong — in fact many things are very right and good —  and yet I cannot feel that. I feel like something is very wrong at those times and I eventually escape by lying down.

On some days, like today, my consciousness allows in the realization that nothing is wrong but that this is just a powerful and seemingly uncontrollable feeling that I do not like. It interferes with my ability to work. Sometimes it interferes with my desire to go out and live my life. So today I let myself go lie down without judging it, without thinking, Here it comes, that bad feeling, what is wrong with me…

And 40 minutes later I thought suddenly of something I wanted to do, in this case, eat some hot soup and my favorite salty rice crackers. The desire to eat was strong enough to push me out of the depths of my bed.  And just now I had an ephiphany:  I think that lying down in our soft bed with its thick snowy-white covers is my version of a hug-machine a la Temple Grandin. I lie there snuggling, burrowing my face into my pillow but not sleeping, even knowing I’m not going to sleep, and I feel myself calm down and return to my sunny, functioning self. I can feel my heart rate slow down. I notice sunlight coming through the window on Ned’s side of the bed. I feel the tiredness leave me. I get to a moment where I can throw off the covers and face the inevitable cold air. I stand up, I go downstairs, I make soup.

And I can write again.

My friend and fellow autism advocate Michael Forbes Wilcox has a fascinating mind that many of my readers would like.  Michael was diagnosed with autism/Asperger’s in his 60’s, and with that diagnosis, found a tremendous sense of relief. I hope I’m getting this biographical bit right but what I think he told me is that so much that troubled him about his interactions with others, throughout his life, so much of his difference, was now explained, and so getting the diagnosis was a watershed experience for him. Michael has never accepted autism as any kind of disorder or illness, but rather, as a clarification for his perceptions and sensory and social struggles.

I am mentioning Michael now because I don’t know if I have talked about his philosophies here, but they are very cutting edge Autism Thinking. Michael goes beyond neurodiversity in that he is one of the strongest proponents for understanding autism as a neurological difference, and so that any deficits people may have are part of that difference, to be dealt with, accommodated, learned from, or accepted — but not treated.

This latest blog post of Michael’s was particularly interesting to me because he takes a new bit of autism research done by Vanderbilt University, and he points out flaws in the study that the general public may not notice. Because Vanderbilt approached the study of autism as a disorder, as basically an undesirable way of being, they have nullified their findings. He points out how people with developmental delays have atypical development, meaning they may be faster to acquire skills in some areas, and slower in others, so that chronological peer comparisons do not apply here. Here is his best quote:

Sometimes it feels like it’s all autism, all the time for me. Most of the time that takes the shape of advocacy work of one sort or another. Yesterday I was filmed along with NY Times Pulitzer Prize-winning journalist Amy Harmon for the PBS show America Reframed in a discussion about Turning 22 and the documentary Rachel Is. Rachel Is takes us into the 21st year in the life of intellectually challenged Rachel Glynn as she turns 22, and features her mom Jane, and her sister Charlotte (who directed the movie). The movie lays out very poignantly and honestly (sometimes cringingly so) a family’s struggle with not knowing what will happen for their developmentally disabled loved one — where she will live, what she will do with herself.  The film ended happily for this family but the viewer was left with the solid weight of responsibility we have as a society to spread that kind of good luck around. Hopefully when the general PBS-viewing public sees this film they will now see Our Guys like never before. And seeing is believing.

The whole time that I sat there on that set I was straining to remember every single thing I needed to say for Our Guys. By “Our Guys” I mean autistic or developmentally disabled young adults who need support to live any kind of basically decent life. I mean guys like Nat who currently need life skills support, job coaches, jobs, housing support, educational support. All the areas of life that we typically developing adults may take for granted. I hope I got it all out. The opportunities to share stuff with the public and to get them to think beyond their own concerns are very few. I try to create such opportunities with my writing. I am always hoping that someone who doesn’t know, or who doesn’t get it, will hear me or read me and a light will go on. And that light takes us all a little bit more out of the darkness — be it in the form of funding, program creation, employing someone with ID (Intellectual Disability) or ASD, (Autism Spectrum Disorder) or just plain trying to connect personally with Our Guys. Or maybe the next time they hear someone disparage public support for Our Guys, they’ll try to educate that person.

Today my work came in a different form but was basically the same. There was a gathering at Brandeis University of parent advocates and a few state representatives from Massachusetts, as well as a representative from the Executive Office of Health and Human Services (which controls our Department of Developmental Services, DDS). There was a very lively and fruitful dialog for 2 hours about policy and practice in terms of adults with ID or ASD. Again, I was sitting up straight, focusing all of my brainpower on what was being said, looking for opportunities to interject, to push the conversation towards creating a system that Our Guys can navigate. The pieces I contribute are usually around vision, of looking at what is and asking why or why not? I’m not as good at speaking to the nuts and bolts programs we already have, but I’m getting better at the alphabet soup and jargon out there.

I think I have figured out that my strength is in taking a problem and casting it in terms that most people can not only grasp but connect with. I like to illustrate the problems honestly, but to also find the hope that you can find underneath if you rub away at the tarnish of heavy bureacracy and close-mindedness.  People need to hear what’s bad about what’s going on, but they also need to see what is good and what can be better. A different perspective is hard for us to grasp — at first — but once we have been spun around to see, sometimes it is the only thing we can see. Welcome to my life.  🙂

If you live in Metro Boston, come on down!

A Full Life Ahead: What Makes A House A Home

What: Advocates is joining forces with Massachusetts Families Organizing For Change to present their popular event series, A Full Life Ahead, at our Life Skills & Learning Center in Ashland, Mass. The series focuses on transition, employment, housing, friendships, and other topics that will lead to interdependent, full lives in the community for young adults with disabilities.

Join us for our first workshop together, “A Full Life Ahead: What Makes a House a Home?” Parents, Robin Kantrowitz and Susan Senator, will discuss challenges and successes of setting up and maintaining living arrangements for their sons. Jeff Keilson, senior vice president at Advocates, will discuss a variety of options including Adult Family Care, Shared Living, and group homes.

When: Tuesday, March 4, 2014 from 7 – 9:00 p.m.

Where: Advocates Life Skills & Learning Center 290 Eliot Street Ashland, MA 01721

Contact: Please RSVP to FamilyServices@AdvocatesInc.org or call (508) 628-6801. Space is limited!

Here it is. The legislation that will help you, family members and self advocates in Massachusetts who either have children with developmental disabilities or are developmentally disabled themselves, particularly those aging into adulthood. If you live in Massachusetts, you must cut and paste this letter into an email to your your legislators. This is how it is done. You cannot sit by and let others do it for you, or do nothing. You have to be an advocate, even if you don’t want to. And Gary Blumenthal of the ADDP has made it so easy in this draft:

Open Letter to Massachusetts House Members

Dear Representative,

People with disabilities have greatly benefited from the compassion, leadership, and vision of Massachusetts elected officials.  Through the darkest days of the Great Recession, members of the General Court protected services and supports for people with disabilities.  Please know we are grateful to you.

As you meet with Representative Brian Dempsey and the leadership of the House Ways and Means Committee we ask you to include the following issues on your List of Priorities:

1.  Please support full funding of the DDS Employment Blueprint Initiative (Line Item 5920-2025). ADDP & The Arc of Massachusetts request an additional $5.6 million over the Governor’s House Two Budget to enable people to move into Employment and Community Based Day Supports.  This request will be matched 50% by the federal government and is needed to implement the state’s Employment First Agenda and the Disability Employment Blueprint.
2. Please Support the Governor’s Budget with regard to Chapter 257 DDS Residential Services and DDS Family Support.
3. Please support increased funding for Autism (Line Item 5920-3010) and Turning 22 Services and Supports (Line Item 5920-5000.
4. Please support increased funding for Brain Injury Programs with an additional $2.8 million, Line 4120-6000 to begin implementing the Brain Injury Commission Report.

Your support for these items will help change the lives of thousands of Commonwealth citizens with disabilities for the better and help people live fulfilled lives in the community.

Thank you.

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Today at the Massachusetts State House there was a hearing on bill H. 3364, “An Act to promote housing creation for persons with disabilities.” The hearing room was full — although some of the audience were there for a different bill — and I was heartened by the size of the group. We were all parents but most also had a title and an autism organization they were representing. I was just me. The Autism Commission and Asperger’s Association of New England were represented, as was Autism Housing Pathways. Former State Rep Barbara L’Italien was there, and she is now (thankfully) running for Senator! Leslie Long and Russ Kenn were there from Autism Speaks.

Leslie presented Autism Speaks’ recent research and housing survey of people with autism and their families and all issues pertaining to housing, including their perceptions of what is out there, how to obtain funding, how to get help and support, etc. Something like “10,000 responses, including close to 400 from individuals on the spectrum,” were gathered, according to AS. A pretty impressive sample.  Even though I’ve said before that I don’t like the negative, autism-is-like-prison rhetoric AS sometimes uses to gain the attention of the media and donors, and I do wish that they would put even more of the millions they are already putting directly into family supports, I think it is clear that AS definitely is doing some very strong advocacy on behalf of autistics and their families. They may be very heavy-handed and frankly a bit Gothic in their representation of autism, but resources for people on the Spectrum and advocacy at the State Houses may help balance things out a bit. I hope so. We can’t all agree all the time on everything, right?

Anyway, here is my testimony:

When my autistic son Nat was 11 we had to seriously consider placing him in a residential school setting. Things had gotten pretty severe in our house. I had a 2 year old and an 8 year old. It was late wintertime, 13 years ago. Nat had attacked me, clawed at me, while I was standing at a T stop holding the baby in one arm, the stroller looped over the other. I did not know how to stop him. I just remember crying out to him to calm down while the crowd on the platform stared, puzzled and stony-faced.

Somehow, that time, it ended okay. No one was hurt, other than my scratches. We got home and even though every one of my babysitters had quit by then, we made it through another day, another week. Spring came, along with a new medication – which helped. We did not end up “going residential” as autism parents call it.  But we knew we could not put it off forever.

We held on for another 6 years, with Nat improving and then losing it, one step forward, two steps back. At 17 he moved out to his school in Randolph, leaving me behind with a broken heart and his little brother with a diagnosis of Post Traumatic Stress Disorder.

It was the best thing for Nat. He learned how to live with others, because he finally had the structure and support he needed to be comfortable with the world around him. The calm that this home created for him enabled him to grow, at last, and be able to take in information from the world around him. He blossomed, and we healed.

Flash forward to today. At 24 Nat is in a group home near us, one that was put together with input from the residents’ families. Nat has a part-time job at Shaw’s working the shopping carts and is a happy, productive guy.  The 4 roommates have similar challenges, similar interests. There have been some bumps in the road but the house is doing well.

I’m writing a book about autism adulthood. I have interviewed so many parents like me, who have similarly challenged kids but cannot manage anything like what Nat has. They do not have a plan for their autistic adult child’s future. Like Karen, whose son sometimes needs to be restrained by 5 people. But because he passed the MCAS, supported housing is not an option. Or Lynn, or Fran. Their grown children not quite severe enough, yet nowhere near being able to live on their own.

No one has ever shown them how to maximize the funding streams – as if there were really any that are adequate for living in Massachusetts. If you’re lucky, your school system has discussed Transition to 22 at your team meeting. But will the school people know about housing supports?  Get on the Section 8 waiting list, we’re told. Section 8, with a ten-year waiting list.  How about starting a home yourself? Got a spare $100,000? How about getting your town interested in more supported housing? Ever hear of NIMBY? How about Adult Foster Care?  What the heck is that?

How can you find out about any of that if you are taking care of a disabled adult and can barely leave your house, let alone attend a housing workshop?  How do you find other families with an adult child like yours, who live in the same difficult situations?

They did not have the ability to get their children residential supports during the school years – not because their children didn’t need those supports but because there were just too many other things to manage.  Full-time jobs. Other kids. Intractable or broke school systems.

And if they could not manage getting residential placement when their children were still in school, there was no way there would be anything like that available to them in adulthood, where there are no entitlements beyond DayHab. Don’t get me started about DayHabs, which are the institutions of today.

So you have parents who are aging, and with adult children living at home, with the same challenges Nat had at 11, but now with adult bodies. They probably have some supports during the day, but what happens when the staff leave?

These are families living scared, living moment-to-moment.

What will happen when the parents die? There is no clear answer then, either. The state takes over, somehow.  That’s what we all tell each other.

Why does the state take over at that miserable point, but offers little help before that? Why do we go from a strong public education experience, to the dead end of these adults living at home? How does that make sense from a policy or a humane perspective?

Something’s gotta give. Please give a favorable recommendation to this bill.

Thank you.

Susan Senator

And here are the Talking Points for the bill:

H. 3364

An Act to promote housing creation for persons with disabilities

The bill is sponsored by Rep. Jason Lewis of Winchester[1], and is intended to increase housing production for individuals with developmental disabilities by doing four things:

• Allow a mechanism for families to open up Mass. tax-advantaged savings accounts that can be used for housing expenses for a family member with a disability; these accounts would be run through MassHousing.
  • This is similar to what would be accomplished by the federal ABLE act, with state tax benefits only, and focused on housing.

• Increase and stabilize funding for Individual Development Accounts by funding it through a tax credit instead of a budget line item;
  • This item has been cut from $700,000 to $50,000 in recent years. Oregon, using a tax credit, funded their program at $10M last year.

• Make housing projects that serve clients of DDS and DMH who do not qualify for funding through the Community Based Housing or Facilities Consolidation Funds a priority for funding through the Housing Innovations Fund;
  • Clients of DDS and DMH are excluded from CBH;
  • FCF only applies to those coming out of institutions, who are already in community living, or who are “awaiting services” (meaningless, as there is technically no DDS waiting list);
  • Conversations with HIF indicate they won’t prioritize any project serving DDS or DMH clients, as they assume they are covered by FCF, unless they receive some external direction to do so.

• Allow each bedroom to count as one unit of affordable housing in homes where services are funded through MassHealth or other agencies, as opposed to only those where services are funded through DDS or DMH;

  • This is automatic for DDS/DMH homes. For a home where services are funded through AFC or GAFC, it would need to be appealed through the Housing Appeals Board and there is no guarantee it would pass. Changing this would create an incentive for local affordable housing trusts to subsidize housing for individuals served through these programs.

Dear Autism Mommy Swami:

How do you get started on finding a place for your adult child to live? How do you begin to feel comfortable that he will be treated well? Is this covered by Medicaid? My son is only 11 but I know we will have to be making these decision and am wondering how early we have to start looking.

Is your son still taking medication for anger issues?  Is this a life-long issue?

Thank you,

Thinking Ahead Mom

Dear Thinking Ahead Mom:

1) Regarding an adult child’s housing, your best bet is to apply to your Department of Developmental Services now and see if you can get him in the system for funding. This is usually called Waiver Funding. So if your child is eligible for DDS prior to 22, he stands a better chance of getting the funds for housing and staff post 22. Call the DDS about support services now, even though he’s still at home.
2) Start saving money, whatever you can put away, for some sort of housing for him, but do not put it in his name. Consult a Special Needs Attorney to find out the best, legal way to save for a special needs child.
3) Be sure he is on SSI the moment he turns 18. Qualifying for SSI at 18 I believe will then qualify him for Medicaid, which does have programs that support people like my son, but it is different in every state.  But the first step is go for SSI when he is 18.
4) As soon as he is 18, get him on the waiting list for Section 8 housing. You can apply for that in your town’s Housing Authority. There’s the national list and there are also local lists. Section 8 is a Federal program that offers vouchers for affordable housing (very very low income). It is a very long waiting list but he should be on it starting at 18.

As far as medication, Nat no longer has anger issues. We are bringing him down from Risperadone, weaning him from it. By age 18 he had learned how to express his frustrations, and he also understood more about the world. 11 was a tough age for Nat. Things got better once we had him start Special Olympics, though. It was a good way to socialize him.

I don’t think it is helpful for us to think anything will last forever in our guys! They grow and develop and learn. Stay optimistic!

Hope this helps!Love,

Swami

The other day I had an email from an NYU sophomore asking if she could interview me for her Oral History class project. She wanted to know about mothering a child with autism. I told her that I’d love to, but that my son was now 24. She said that would be great anyway. She was down in New York, however, so we were not sure at that time how to proceed.

Then yesterday I was contacted by her project partner, Chris, who happened to be in Boston visiting a friend. Chris and I agreed to meet at my favorite coffee shop in town, Peet’s. Nat was home for the weekend, so I asked him to come with me; the interview was partly about him, so he should be there, too.

It was snowing really hard. I had to drop Nat off and then park, or he wouldn’t have been able to open the door against the hardened snow drift. We went into Peet’s together and found Chris, a smiling young man. Nat shook Chris’s hand. Then he went right to the glass case and started saying, “choc chih cookie,” before I had even gotten there. This was a happy development, however technically/socially incorrect it may have been, because Nat was so confident and was speaking up for himself without even being prompted! I did call him back to the end of the line, though. How can something be so right and so wrong at the same time, goes the love song, and it is also the song about Nat in the world.

Every time something like this get-together comes up now I realize either just in time or a little too late that Nat should be part of it. I can’t believe that I still have such a hard time thinking of him as a definite part of a get-together, rather than, well, luggage. That sounds horrible, right? But listen, to some degree, any time a parent has to bring a child along, it is a little like hefting more than you’d like. Until that child starts to grow up and become more visible, more there, he is more just cute baggage than anything else.

But Nat is not a child! Nat is 24. He is not luggage the way a toddler would be. He is 5’11” and very garrulous. No, he does not talk directly to the people we are with, but he is very much a part of the living, moving social noise of any gathering.

But: there was a time, and I still carry the trauma of that time, when Nat was highly unpredictable and scared me in public. It took years for me to get used to his being stared at, and also to realize that he was no longer going to try to hurt someone. He used to be so much less aware of what the outside world expected of him, and even if he did know, he did not know how to get the right behavior out of himself. He must have gone around with so much frustration I can only imagine it was the way third grade math was to me, but for Nat, it was every day of his life.

I need to remember that things have changed. I need to find a way to keep that fact with me, and bring Nat into every picture that is about him or that would interest him. He is a grown man and he seems so much more comfortable in the space around him. Certainly those around him get it better than they used to. They make room for his pointy widespread elbows, his faster pace, his sudden peals of laughter. He does not get stared at as much, or maybe I don’t notice it anymore. I’d like to think both are true, like maybe I now feel we are more deserving of respect, he and I, because of all we’ve been through together. Now he is a grown man, and a happy and confident one — albeit not speaking the language around him — and so people just see the man and they make room.

And indeed, we did find room at the long marble countertop against the cold wet window. I was in the middle while Chris asked me questions. Nat was on my left, scarfing his cookie and sipping cocoa with great animation. I think some of what Nat and I told Chris (in one mode or another) moved Chris to tears at times. Chris really got it. At the end of the interview I went to shake hands to say goodbye to him and he said, “Actually, I’m a hugger, so bring it in.” We hugged. Nat, however, is not as much of a hugger so in saying goodbye, he shook Chris’ hand, saying, “Hi Chris.”

As we walked back to the car, I tried to summarize the meeting because I was not sure if Nat knew why I had been talking so much about him to this stranger. I said, “People want to talk to me about you, Nat. A lot of people have little children with autism, like you. A lot of people want to know how to help their children be as great as you. You’re a really good person, Nat, and they want to know how to be a good person, like you.”

And we drove home through the heavy snow. Everything was just white and black, except the bright red lollipop stop light.