Susan's Blog

Tuesday, May 19, 2015

Threats from within and without

With autism, there are threats that come from without, and threats that come from within. Number one external threat: cutting services. School systems. Adult services. Every budget season there are challenges we face on the government level, in the form of proposed cuts to services. This spring is no different; first we had to rally over the Governor’s proposed “9c” cut to Medicaid/Mass Health services in the form of Adult Family Care respite time for the caregivers. What in the world could they have saved financially speaking that would be worth denying 14 days vacation time for caregivers — people who work with those with very challenging disabilities and are responsible for their clients 24/7?

Soon after this proposal came the heinous Senate budget which cut, among other valuable services, Adult Day Program money for possibly 1,000 people who recently turned 22 (last hired, first fired I suppose). Other services to be cut: toileting and feeding assistance. So… let’s see. These people with intellectual disabilities with feeding and toileting issues will now have to — fend for themselves: Let them eat cake, or, uh, let them… hmm. Yeah. That’s what I thought.

Then there are threats from within. These are excruciating because they are directly about our child. Number one for me: what is Nat feeling? Is he okay? Latest thing: he is very quiet, slow, and still, like he is moving through water. He just stands there waiting for — what? And of course, no smiling in sight. On the other end, when he is not like this, he will suddenly switch to uncontrollable seemingly context-free laughter. Spitting laughter. So then we have to get him calm and more, well, serious, which then leads to — the still, quiet, somber Nat.

Where is the middle ground? Not just for my own exhausted heart. But for Nat. What is it like for him to exist this way, battered between so much up and down? How can I help him?

And by the way, when I ask that, it is rhetorical. I do not want any advice in the comments. Frankly, I hate other people’s advice. It so rarely fits our situation. It so often is something I’ve already tried. I honestly don’t believe anyone has the answers, and that is the way it has always been for Nat and us. We’re on our own and you are our supports. I only find it inside the autism community, but only from those with open arms and open minds.


Thursday, May 7, 2015

Push Back, AFC Clients!

Massachusetts families, advocates, and caregivers. Did you know that Mass Health is filing for a 9C cut, which in this case means WITHHOLDING 2 WEEKS RESPITE TIME FOR ADULT FAMILY CAREGIVERS???? This is unconscionable. Those that work with our guys need time off! Write to Mass Health if you can and tell them they must not do this. As Gary Blumenthal and the ADDP have told their constituents: PUSH BACK!! Protect our vital caregivers’ right to respite!

Note: Nat is not an AFC client but there but for the grace of DDS funding goes he!

Write to:

Here’s my letter, just use it however you can.

Dear Mr. Tsai, et al.,
My son is 25 and has fairly severe autism. He is *not* an AFC user because he has had the “good luck” to be severe enough to warrant Priority One funding with the DDS. However, we had planned on using AFC in case we could not attain the Priority One. Since he’s been an adult, I have come to know others — younger families whose children are aging out of the school system — who will be applying for the AFC program. The AFC program is pretty much the only support for them, because DDS is strained and now the Autism Omnibus Bill has made it possible for *more* of those on the autism spectrum to apply for services. Yet, what are the chances that this newly eligible population will actually get anything, the way the DDS budget is?

So if families are lucky enough to get AFC, they can at least count on a small stipend for their work with their loved ones. They love their clients/disabled family members but the work is very very rough. I know this, from having my son live with me all the years prior to his residential move. Oh, how my heart broke to send him to live at his school. I still cry when I drop him off at his apartment with his caregiver. His caregiver is trustworthy and wonderful but he needs time off.

Don’t you get vacation time for your stressful jobs? Then how is it that you can file to suspend 14 days respite for AFC caregivers?? How can you possibly live with yourself doing that? What you need to do instead is work harder for the funds to support this respite. As people in charge of Health and Human Services, you owe it to your clients to advocate for them, not to reduce their lives.

You must do the right thing. Let the Legislature find the money somewhere else and do NOT take it from poor hard working caregivers!

Thank you,
Susan Senator

Tuesday, May 5, 2015

Does Nat Mind His Disability?

Can I say this? I hate the fact that I have to pay for people to be with Nat. Pay someone to live with him, pay someone to work next to him at the supermarket.

Can I also say this? I am so lucky that I can pay for people to be with Nat and that there are good people for this.

But, this whole thing makes me very sad. I think about when I was in therapy, and how it stung that I was not actually friends with my therapist, I was basically a customer. A client. She loved me, I’m sure. But she was working when she was talking to me. She had a life that I was not allowed into. There was an utter imbalance, where she knew all about me, and I knew almost nothing about her. When I would run into her in a store, it was so weird! There she was, herself, an older woman with a handbag buying stuff! It made me feel almost sorry for her. Or embarrassed? Why? The mask of the professional her was off at that moment and there was just the skin of her face hovering vulnerably in space.

So what is it like for Nat? The age old question: how much does he know about his life? And whatever he does know, how much of it bothers him?

Here goes, the horrible question: Do people with disabilities sometimes feel inferior because of what they cannot do, because they must depend on others? Oh, how Ableist of me to ask that, but I want to know, I want to hear about it.

Or is it just like it is for me, where you do come to accept that there are services you require that you must pay for. Like seeing my doctor. Hiring a plumber. I can feel stupid and incompetent if I need someone to look at a hurt knee and tell me why it hurts, but I don’t. We accept that there are professionals in our lives to do for us what we cannot.

So — is that the reality Nat knows?

Or does he wish that instead of a paid live-in caregiver, he had just a roommate, a friend?

It is so painful but I have to ask. And of course there are no answers. Of course. That is the real problem of loving someone who has a profound disability. There is indeed mystery and you are constantly reminded of how terribly human (flawed, limited) you are that you cannot give this beautiful person exactly the life he should have.

“Should?” What is the truth here?


Friday, April 24, 2015

Praising (and Loving), Not Burying

I burst into tears today as I was riding my bike — not because of the ride but because of where my mind suddenly went. I was thinking about my Uncle Alby who had just died, and then, of course, of my mom, his little sister. I call her that because around him she really became a younger version of herself, naive, innocent, waiting in joyful anticipation of what Alby would say next.

It was thinking of Mom that brought on the tears. Mom, and then Dad. The two of them have been hit very hard by a string of peer and family deaths lately. All of these people died of old age, but they were not that much older than my parents. I think Mom especially is feeling her own mortality very deeply lately because of this. Her small copper face seems a bit more closed in on itself, her eyes seem lighter brown than they used to be, and when she was here a few days ago they seemed to be looking for something. She hugged me quite a bit that day she was here to say goodbye to Alby — and I hope that for those moments she’d found a little of what she was needing. I could feel the full force of her vulnerability, lying against me, yet also, the way her arms bent around me there was also the age-old care of the mother for her child. Mom is complicated, young and old at the same time, brilliant and naive, nakedly open and yet mysterious. And if you happen to be one of the lucky ones she loves, you will always always feel that.

Dad is likely feeling the same kind of sorrowful things, but he shows it differently. He’s all silver and gold these days, his hair gleaming gray-white, his skin burnished tan from always being outdoors. He’s like a benevolent floaty cloud in a summer sky, watching over you, playfully hiding now and then with the sun. A life of hard work, muscular movement and exercise, and constant thought have polished him down to his very essence: joy.

I don’t mean for this to sound like a eulogy. But it occurred to me today that I need to say these things while they are alive.

I did not have a perfect childhood. But unlike many people, I had parents who desperately wanted and tried to be perfect. And for years and years I believed they were, even though experience told me they were not. When I finally realized they were not perfect people, and that they had actually made mistakes parenting me, I was so angry. And this was later in life, I’m ashamed to say.

Now what I know is that goodness in a person is not about perfect, it’s about being human. And they are so very human. Yet their drive to be perfect for me and my sister Laura shaped me into the same kind of person. Someone who does not question trying really really hard for those you love, someone who wants to make loved ones and others, too, really really happy. In being that way, they made me a good person. And they gave me a wonderful childhood. Not perfect, but that’s okay. Because it was wonderful. With some awful times, but still — amazing. Should I name these things? Give you a picture of what I mean?

First thing that comes to mind is a sense of wonder. The four camping trips out West, returning each time to a favorite campsite in Rocky Mountain National Park. The North Rim of the Grand Canyon “because it’s less crowded.” The smell of the wilderness that Mom wished she could “bottle.” Driving through the desert with water strapped to our car “just in case.” So much adventure. These trips gave me the feeling that I could go anywhere, do anything, that the world had endless places to discover. That you could spend hours and hours with people in one car and only get closer to them. I need to be honest, of course, and say that there were times when I’d be so angry or hurt by them that my throat would choke with rage and sorrow. But I understand it all now, and I forgive them. This is so important. To forgive and let go so you can love even better.

Second thing they gave me: humor. My Mom probably learned from her father and then Alby all about laughter and she found my father early in life — age 13, married him at 18 — because he continued the tradition of making her laugh. You have never seen high cheekbones until you’ve seen Mom laugh. Diamond bright teeth. And Dad is so funny, I don’t know where to begin. I have wanted to write about his humor for years but I just can’t yet. It’s so much a part of my own wiring that I can’t untangle it. I hope to someday. For now I will say that I hear his jokes without him even being there. My sister Laura and I are also funny because of Dad, and we both chose husbands who make us laugh, accordingly.

Third thing: activism. My parents are dedicated to helping people. They are teachers by profession. But they help so many people other than students. They have changed people’s lives just by their own honesty and hard work and no-nonsense attitude. I was miserable in my first year of college. “So transfer,” Mom said. And just like that, I learned that I never have to accept a miserable situation. And I don’t. Even if that means that I’m confronting her for something she said! And Dad, asking me one evening if a certain boyfriend was “making me happy.” And the answer, of course, was No. But Dad made me face it, and end that destructive relationship.

Fourth thing: duty. My parents always try to do the right thing. You must take care of your loved ones and friends. You must tell someone when they are not being wise or kind. Stand up for others. Stand up for yourself. Sometimes it drives me crazy, I feel like they sometimes put off happy things because there’s Something They Must Do. But that’s in me, too. I do the same thing. Everyone around them relies on them, on me.

Fifth thing: health. My parents tend to overdo their dedication to their physical fitness, but that is who they are. And they are very strong because of it. For their age, and for any age. I still do not want to try to race my Dad on a bike. Certainly not in running. Mom walks sometimes 10 miles in a day, listening to NPR or books. Always learning. Dad listens to nothing but his own thoughts and he simply becomes a part of the road he is running or riding on, his breath is the air around him,. Both of their different ways make perfect sense for who Mom and Dad are.

Sixth thing: to be learned. The constantly admonished me to read, know the classics, be conversant in current events, philosophy, literature, ethics. Both of them are always reading more than one book. Always. They feel what they read, they think think think and then they tell you all about it. And now I’m the same.

I grew up in love with Mom and Dad. They were larger than life, they were my Gods. Then they fell from grace, simply because I learned they were just people. I had to learn that no one is larger than life, no one is a God, but that this is okay, that this is right. I had to also learn that I was okay. This took so long. So much to learn again and again, as an adult, so much gray confusion, black struggle, blood red anger.

Only to find that the beautiful elements of diamond, copper, silver, and gold outlast everything else.




Thursday, April 23, 2015

Darkness is Inextricably Linked to Light

My uncle just died. My parents were up here because it was clear that his death was imminent. Their visit also coincided with my very first public bellydance performance. They went right from his deathbed to Cambridge, where the performance was being held. My mom wanted to see me dance, and had planned a while ago to be here for it, but now she felt terribly guilty to be going to this colorful, joyful event, to feel happiness and pride, in juxtaposition to what was going on with her family, at the hospice.

But my sister said, “Don’t put off a mitzvah for anything.” She was referring to a practice in Judaism, where even in the face of death you are supposed to take part in joy. For my family, this admonition always brings to mind my wedding, which took place two days after my grandfather died. I remember that time, when the whole family was coming in for the wedding, including Grandpa — my father’s father. Grandpa had been suffering from depression for some time, but seemed to have rallied for the trip. I stopped off at my aunt’s house, where he was staying, and I told him, “We can dance at my wedding!” And he said, “I won’t be dancing at the wedding.” I took this to mean he was still feeling depressed, and I let it be.

But no, Grandpa had probably known that his end was near. I was shocked by the news, and I figured, “Oh well, I guess we won’t be getting married, then.” But my parents said, “Oh, no. You should never postpone happiness.” Their gravity and certainty blew away any reservations I’d been having, and so we went forward. And so the day after my wedding I went to Grandpa’s funeral and then was whisked away to my honeymoon in Italy. Never an anniversary goes by when I don’t remember the Other event side by side with my own. All of my wedding pictures, Dad has a forked vein in his forehead even with the smile in his eyes.

Yet I do not regret what we did. I’ve come to see that this is exactly the flavor of life: sweet and salty together. The happy and sad. They complement each other. We feel happiness more when we have it to compare to pain. The sharp knife, the soft skin. The ripping childbirth, the aching joy of the baby, the full heart, the deep new fear.  We never have a moment where we are just basking, suspended in joy. For if we are aware of it, it is changed immediately by the recognition that it is finite. My children advance into the world, and we say with brightest yellow pride, “Wow, look at him go!” and then followed by the fuzzy shadow of, “I hope nothing bad happens to him.” And that brings to the ready the roaring Mother’s cry, the bellow of the jungle, the Lion ready with bloody teeth. We are all from nature, and it certainly is “red in tooth and claw.”

So I danced, in bright red, dark purple veil flying. My parents and my husband and many friends came to see me, a 52-year-old bellydancer. I discovered my bliss perhaps a little later than most bellydancers, but it wasn’t too late. While we’re living, it never is.



Tuesday, April 21, 2015

Romantic Love For An Autistic Young Man

My latest column for WBUR/NPR’s “Cognoscenti” segment is out today. This piece was inspired a few weekends ago when Ned and I observed Nat as he sat quietly on the T next to a young woman his age.

Monday, April 6, 2015

State House Story

In February of 2015 a friend called and asked me if I had any suggestions for speakers on Autism Awareness and Acceptance Day at the State House.

I had been a speaker on Autism Awareness Day back in 2006, which had been a great experience. But the most exciting Autism Awareness Day I’d ever attended by far had been the very first, when the guest speakers were a young man and his mom. This young man had a developmental disability, perhaps autism, and he had stood up at the podium with his mom, a longtime activist. He was in his early twenties. I don’t remember if he actually spoke but I do remember his stage presence, his proud posture, his adult demeanor, and I remember thinking, “Wow. How does that even happen?” I was, of course, wondering what Nat would be like when he was that age. There was a small smoldering sadness kind of behind my eyes, which back then was so familiar. In those days I was always looking at Nat with so much worry about who he would become. He was a young teen then, and had accomplished so much with his life – team sports, bar mitzvah, comfortable traveler, excellent student. But I was focused on grown-up Nat, unknown Nat. Out-in-the-world Nat. And most of the time when I thought of him it was with the sweeping protective despairing love of Mrs. Jumbo, the so-called “Mad Elephant” who was Dumbo’s mom.

But I put that pain aside and went back into my life at the time, raising my boys, writing books, and attending and speaking at events like this one. When I got the call from one of the organizers that winter day, I thought about one young man I knew — Scott Lentine, a poet, legal assistant, and self-advocate. who could speak about his life for Autism Awareness Day 2015.

As we were talking, though, the organizer made it clear that they were also looking for a speaker who had fairly severe autism – someone who represented the end of the spectrum that is rarely written about or talked about. I thought of Nat right away, and volunteered him as a speaker, with his caregiver — John — to round it out. Why couldn’t Nat do it, after all? He could answer questions as long as they were shaped around specific information. And he could type his answers. He could construct a speech about Shared Living, which was one of the topics scheduled that day.

My husband Ned, of course, was a little skeptical when I told him. This was our old familiar pattern of my big floaty dreams being met with Ned’s rock solid sense of reality. “It might be too much for him,” Ned said. “I don’t know if he’ll be able to focus.”

I would not hear this. “He’ll love it. He’s great with crowds. He’ll practice the speech. It will be just like his bar mitzvah.”

Ned would not give me the satisfaction of agreeing and getting excited about it with me. But that was allright. It was going to happen. And I knew that whatever “it” turned out to be would be okay. That Great Hall at the State House was going to be filled with friends, autism families, advocates, and legislators who knew about Nat or if not, would just love him when they saw him.

I’d come a long way since those days when he was 15. More importantly, so had Nat. The process of helping him write the speech went just the way I thought it would—a satisfying confirmation of my deep familiarity with Nat’s abilities and his favorite pastimes. Typing answers to questions was something he felt strong about, after all. I told him: “Some friends have asked if you want to talk about your life with John, for a special day in the spring, in April.”

He said, “Yes,” right away. So I told him about how he would create a speech and that by reading it to the crowd he would be helping others understand how to live in an apartment and have a job, like he did.

He eagerly sat with me, laptop open, eyes strained as if to catch the words I spoke. I asked him questions like, “Nat, where do you live?” And he would answer.

“Okay, type that,” I’d say. If he got lost I would repeat his own words, and restart him. After about a half hour we had 73 words about Nat’s experiences with Shared Living. Here is the speech:

Thank You

Living at Kelton Street. by Nat Batchelder

Brought Bag up stars to apartment at kelton street

At Kelton Street I eat Lunch go to bed sope and shawor, get ready pajamas go to bed

Jon coms, says get up

Brush teeth

Go to ASA Do meals on wheels

Back to Kelton Street. movies with jon. Put plates in dishwasher. set table. put   datergent Lindre in drire

Feel happy

love nat

Better than most speeches one hears at the State House, don’t you think?

The night before Nat’s speech I didn’t sleep very well. I knew I didn’t have any reason to be nervous, exactly. I guess it was just that I didn’t want Nat to feel uncomfortable once he got up there and actually faced all those people. I kept trying to tell myself he would be fine, he doesn’t get worked up when he’s scared or when places are noisy and crowded. The episodes he has had with acting out are always about a sudden change in routine combined with his confusion and inability to formulate questions. And without being able to question us, he becomes choked with frustration.

I rushed through getting dressed, changed my outfit many times, although I don’t know why – this was not my show, after all. But old egos die hard. I found Ned there and I found my old buddy Jeff, too, who had come there for Nat. A steady stream of fellow autism parents and professionals from over the years came up to me and wished me luck. Some had brought their children – budding self-advocates. Some were giving their own speeches. It was a warm sea of friends, buoying each other up, as we always did.

Nat was not there, but of course I kept scanning for him. I looked at my phone and there was a text from John: “It’s on Beacon Street, right?”

Ahhh! John! That same old laid back, huge self-confidence. Was he seriously not even inside the State House yet? I was back to my bouncy nervous state.

Five minutes later Nat strides in, glowing in his dove gray suit and silver striped tie. I gave him a kiss and gave John a hug. Nat was wired, but in a good way. I dug a pile of papers out of my bag: I had copied Nat’s speech to hand out to everyone so they could follow along. I guess I was obsessing about people not being able to hear him or understand his quick way of reading. My hands were shaking and I suddenly felt shy going up to people with my son’s speech. So a friend came to my rescue and had her sons take over distributing them for me. I found Nat a seat in the front row and we all settled in.

The Governor was ahead of Nat in the order of the program, and he gave a warm, sometimes funny speech, more like telling us stories about his experiences with autism families.

Then it was Nat’s turn. He seized hold of the podium and began almost immediately.

You could not hear a thing, though his lips were moving correctly over his written page. One of the speakers – an autism mom who had created her own day program and residence – got up to push the mic closer to Nat. I still could not hear him. Dammit, I thought. Here I go. “Louder!” I shouted.

Nat shouted into the mic for one phrase, then went right back to his whisper. And I sat there feeling like an idiot because I had stepped in like a pushy stage mom and interfered with this young man’s speech.

But really, what would anyone expect from me? That’s the kind of mother I am, and I am the kind of mother Nat needs.

In the end, I don’t believe Nat cared. He finished his speech, in his softest, quiet voice. But it was the voice of one of our guys, and it so roared like thunder within those marble halls.


Thursday, April 2, 2015

Nat Speaks

Today, World Autism Acceptance Day 2015, my 25 year old son Nat who has fairly severe autism spoke at the Massachusetts State House. Right after Governor Baker (scroll down for link to pic of the Gov applauding Nat!)  Here is the text of Nat’s speech, completely his own words, that he typed, and read today.

Thank You

Living at _____ Street. by Nat Batchelder

Brought Bag up stars to apartment at k street

At _____ Street I eat Lunch go to bed sope and shawor, get ready pajamas go to bed

Jon coms, says get up

Brush teeth

Go to ASA Do meals on wheels

Back to ______ Street. movies with jon. Put plates in dishwasher. set table. put datergent Lindre in drire

Feel happy

love nat

(Nat and Proud Mama)


The Governor of Massachusetts, applauding Nat at Autism Day 2015 at the State House




Saturday, March 7, 2015

All three sons are home!

2015-03-07 13.03.15

Some of you readers haven’t seen these faces in a long, long time. It’s almost Max’s birthday so he’s home!

Saturday, February 28, 2015

Asking for, needing, help

I remember once, when I was in first grade, Mrs. Newman had us write all the numbers up to 100 and beyond. I can see the lined paper in front of me, and the fat pencil with its silver rounded match-head size tip gripped in my chubby hand. I wrote the numbers, “1, 2, 3..” I thought ahead and realized that I did not know what was after 100. Mrs. Newman was mean and so I knew I could not ask her. Everyone was writing their numbers and I asked to go to the bathroom. I left the room and just hid outside the classroom door for the rest of the period, my stomach in knots, because I just did not know those numbers and there was never any help, anywhere.

I still hate numbers, math, my old school, and especially that feeling of not knowing something everyone else seems to know: that feeling of being cut off from the others, floating, looking in from the outside. Loneliness, stomach ache, desperate to go and cry.

I was lucky enough to be able to arrange my life so that I am rarely ever in that position anymore. Because I still hate to ask for help. It’s amazing to me how quickly that teary choking feeling rises up when “I don’t get it.”

Most people probably don’t like to admit they need help. I guess there is shame that gets attached to it somehow. So I wonder how someone with a disability, who often needs help, feels about this. I wonder how Nat feels about his dependency on others.

I also wonder how Nat feels about the fact that so many people around him assume he needs help. This came up recently at a medical office, a practice I knew a lot about and was considering for Nat. I liked the way they were trying to think about adults with autism, to offer services beyond childhood.

Yet immediately I had to fill out paperwork that was all about “my child.” His year in school. His classroom therapies. His siblings, anyone else “in our home.” Nat is 25. He’s been out of school for years and he does not have therapies nor does he live in our home. Okay, I filled it all out anyway. But then the nurse came and chirped “Nathaniel?” and off we went.He was asked to take off his shoes, and asked if he could take off his shoes himself. He could. “Great job, Nat!” He was asked if he could step on the little red footprints to be weighed. He was congratulated for getting that right. He had to get his blood pressure taken, “This little band is going to squeeze your arm!”

At this point I wanted to squeeze her head but I said, “Oh, Nat is fine with being in a doctor’s office,” and I said it in a trailing way that invited Nat in to the conversation. He said nothing, but I felt that at least I had opened up the circle for him.

Similarly, when we were meeting with the doctor, I got ready to work out how to ask and answer questions about Nat with Nat right there in the room with us. I want to include him, but I know that he cannot always/often access the accurate responses about his health and life. My solution is to listen to the doctor’s question about his sleep habits for example and then answer, saying, “Nat, I think you sleep well these days, do you?”  Or about diet “Nat, you like most food, right? What did you eat today for lunch?” I try to give him a way into the conversation.

The doctor was better than the nurse had been but there was still that cringing moment when she said, “Great job, Nat!” after he’d answered a question, as if he’d discovered the cure for the common cold. I wanted to ask her, “How would you feel if someone squealed, ‘Great job!’ to you like that?” But I didn’t. Instead, I tried to show her another way. At the next opportunity when Nat responded to something, I said in a normal voice, “Nat, I like the way you’re talking to us.”  Just a small noticing, then we just moved on.

It’s hard enough being unable to keep up with everyone in the room — especially when they are talking about you. But Nat doesn’t withdraw in shame like I did/do. Nat just soldiers on,  listening carefully though appearing “in his own world,” talking to himself “stereotypies,” as the doctor put it. “Expressing himself,” as I put it. Thinking his thoughts.

But nothing proves it to you until that smile of his breaks loose all of a sudden, and his eye flickers at yours for an instant. Seductive in its powerful intelligence, he is almost winking at you across the room. If you are one of the lucky ones, it will stop you cold, and you are humbled.

Friday, February 27, 2015

My TV Appearance: Vaccines/Autism

On Thursday night (2/26/15) I appeared on New England Cable News (NECN) with Dr. Ben Kruskal, Chief of Infectious Disease at Harvard Vanguard, in a show on autism and vaccines: “Measles and Misinformation.” I presented my view as a parent who at one time had been afraid to vaccinate my child, and who subsequently learned the science and the facts about the safety and necessity and civic responsibility regarding vaccination. You can watch it here.

Friday, February 20, 2015

Important Workshop, Framingham, Massachusetts

Autism Housing Pathways (AHP) will present a full day workshop on housing on Saturday, March 28th, at Advocates, 1881 Worcester Road, Framingham.

Come prepared to roll up your sleeves and work! The goal is to end the day with an idea of what benefits your family member may be eligible for, what you can afford, and what models might be applicable to your situation. We will be completing questionnaires and worksheets, as well as Section 8 applications. You will not need to share this information with anyone; it is for your own personal use.

Attendance will be capped at 15 participants. While prior attendance at one of AHP’s presentations on housing is helpful, it is not necessary.
Please RSVP to Cathy Boyle at

The day will run from 8:30-5:15. A light breakfast and lunch will be provided.

The first three families to sign up that meet the criterion of a grant Autism Housing Pathways has received from the Mass. Developmental Disabilities Council that are not already participating in the grant, may, if they choose, be placed on the waiting list for the grant. The grant criterion is that the individual with a developmental disability be unlikely to be Priority 1 for residential services through DDS at age 22. Participants in the grant will:

Receive a workbook to be completed by the individual with a disability (either independently or with assistance from a trusted individual) touching on preferred activities, lifestyle and location, and being a good neighbor. The workbook will be available in three formats: one written at an 8th grade reading level; one written at an early elementary reading level; and one comprised of picture-based social stories and sticker activities.
Upon completion of the workshop and workbook, individuals and their families will engage in a person-centered planning process, using the PATH tool. While the primary focus will be to develop a housing vision, it will be necessary to include other parts of the personal vision to assure compatibility between housing goals and other personal goals. Each plan will include a pre-meeting with the individual and/or his/her family, as appropriate, to determine whom the individual would like present when the plan is created, and to help the individual begin to reflect on his or her vision; the main meeting, where the individual and those he or she has invited create the plan; and a follow-up meeting a few months later to check in on how things are going in implementing the plan. Person-centered planning meetings will be scheduled at the convenience of the individual and his/her family, but must take place before June 20, 2015.
6 months after completion of the day-long workshop, a questionnaire will be sent to individuals and/or families to determine if a Sec. 8 voucher application has been completed, what benefits have been applied for, whether an asset development strategy has been adopted, and whether their living situation has changed.

Friday, February 13, 2015

Life College Director Job Posting: 3L Place

My friend Deborah Flaschen founded 3LPlace, a whole new concept in post 22 living, located in Somerville, Massachusetts. Their slogan is: Learning, Living, Linking Adults with Autism and other Developmental Disabilities

3L is booming with success and growth! They are now ready to hire a Director for the Life College. Here is the description of 3L and the job offering:
Somerville, MA
3LPlace is a dynamic, model community for adults with autism and other developmental
disabilities designed to empower them to live fruitful, engaged, and supported lives over
their lifespan. The 3LPlace Life College opened in November 2014. The Life College is
the first point of entry to 3LPlace. It is a two to three year residential instruction program
focussed on developing capabilities and skills needed to live a productive, satisfying,
healthy, and connected adult life.
The 3LPlace Life College is a12-month, 24 hour/7 day a week program. For the most
part, Students/Members enter throughout the year, as they turn 22 years old. Once students
complete the Transition Program, they will participate in 3LPlace’s Community
Program, or the 3LClubhouse that serves individuals over the lifespan. 3LPlace’s Life
College plans to grow at a rate of approximately six students per year, until it reaches a
maximum of 20 full-time students. Our Community Members program may grow a bit
faster as both graduating Students/Members from the Life College and Members from
outside the Life College are welcome to join. The number of Members in our Community
Members program will be approximately 120 at maximum. However our 3LClubhouse,
a part-time drop in program will enable us to engage a larger number of total participants.
The Board of Directors is seeking a highly qualified, dedicated professional to serve as
Director of the 3LPlace Life College and help it flourish in the years to come.
The 3LPlace Life College Director will be expected to provide management leadership
for the Life College community including the implementation of our innovative, multidisciplinary
Transition Curriculum. The 3LPlace Life College Director will be responsible
for coordination of this curriculum, student recruitment, as well as staff hiring, supervision,
evaluation, and development. The 3LPlace Life College Director will have an initial
staff of 11, of which 4 are direct reports. The staff at 3LPlace is expected to grow
significantly as student enrollment grows.
The 3LPlace Life College employs a Director of Developmental and Therapeutic Services
and utilizes an outside consultant to further advise on therapeutic, instructional, and
curricular elements of the Life College.
The 3LPlace Life College Director will play a key role in the evolution of 3LPlace as it
expands from a Life College for transitioning young adults into a robust community for
lifelong learning.
Successful candidates for this position must enjoy developing relationships, teaching,
mentoring, and working in a creative, flexible environment.
• Responsible for operation of 3LPlace Life College program and facilities: supervise
staff of 11 people, with 4 direct reports (staff size will grow significantly
as enrollment expands); ensure stream of potential Life College participants; supervise
student intake process which includes a thorough-going student and family
application, evaluation, and sometimes financial aid process in an effort to assure
student body diversity and best fit for 3LPlace Life College.
• Serve as chief of staff, providing direction, supervision, staff training and development
for program and support staff.
• Give vision and leadership to the strategic and day-to-day program implementation
of 3LPlace Life College.
• Provide leadership in developing program, organizational, and financial plans
with the Board of Directors and staff, and carry out plans and policies authorized
by the board.
• Prepare and monitor the annual budget for 3LPlace Life College.
• Oversee financial and quality management relationship with the Department of
Developmental Services (DDS) and other agencies of the Commonwealth of
• Ensure that the 3LPlace Board of Directors is fully informed on the Life College
and all critical factors influencing it.
• Establish sound working relationships and cooperative arrangements with
community groups and organizations.
• Represent the 3LPlace Life College to agencies, organizations, and the general
• Maintain a climate that attracts, keeps, and motivates a diverse staff of top quality
• Master’s Degree or higher in education or therapeutic discipline (i.e., social work,
counseling, occupational therapy, art therapy, etc.)
• Significant experience required preferably with young adults with developmental
• Supervisory, general and financial management, and leadership experience
required with proven track record
• Experience working with volunteer boards
• Strong communication, conflict resolution, and decision making skills
• Ability to work in a flexible, ever changing environment
Compensation (plus benefits) commensurate with experience of applicant and consistent
with that offered by growing, vibrant non-profit entities.
Deborah Flaschen
President, 3LPlace Inc.

Wednesday, February 11, 2015

Vaccines Save Lives

Here is my piece for NPR’s WBUR/Cognoscenti column, about vaccines and autism. I tried to take a nuanced and reasoned approach. I ain’t no troll. But truly: vaccines save lives.

Sunday, February 8, 2015

Vaccination and Autism

I’m going to be live on NECN New England Cable Network News at 6pm EST Monday February 9. It streams at as well. The topic is the safety of vaccine. I am absolutely in favor of people getting vaccinated. It saves lives. It does not cause autism. In every medical intervention, there is never 100% good response. There is always risk. But the risk of spreading measles and destroying herd immunity is definite. Autism is hard, death by disease is far worse.

Saturday, February 7, 2015

Nat’s longest conversation

…was on Facebook with his Aunt Laura. Here is the transcript, I copied it from his Facebook Messenger page:

(Laura): Hi Nat, I’m at work. What are you doing today?

(Nat): basket ball

(Laura): have fun!  Are you going to jplicks?
(Nat): ice cream hare

(Laura): Oh great!
(Nat): good

(Laura): what are you doing tomorrow?
(Nat): dad jplcks
drive jpliks

(Laura): I knew you would go there!  Why can’t you walk?
(Nat): snow

(Laura): Oh of course.  What’s your favorite ice cream flavor?
(Nat): chlket

(Laura): How is John?
(Nat): good

(Laura): Do you still like the apartment?
(Nat): like apartment

(Laura): Has it been hard to work shopping carts with the snow and cold?
(Nat): yes

(Laura): Do you ever work other jobs at Shaws in the bad weather?
(Nat): baskt

(Laura): what job is that?
(Nat:) clakt basket

(Laura): Oh I see.  Which job do you like better?
(Nat): basket

(Laura): Why do you like it better?
(Nat): ok hard
[nat left]

(Laura): Shopping carts are harder?
ok bye?!

[nat comes back]: good bye

Wednesday, January 28, 2015

The Young Autistic Man Who COULD

Number One: People grow and develop. Education works. Sticking by someone and believing in him works.

Number Two: Disabled does not mean “can’t.” It means “I possibly can, with the right supports. Give me a chance.”

I have a lot to be grateful for. 1) Nat’s tremendous growth and ability to learn; 2) Nat’s wonderful independent living skills education at the May Institute; 3) Nat’s amazing loving caregiver who lives with him in their small apartment in Boston nearby; 4) Nat’s tremendous growth and ability to learn. Lather, rinse, repeat.

Especially given the concern and worry I devoted towards Nat’s self care skills. I despaired that he’d ever learn how to even make his own breakfast, as you can read here in this 2004 New York Times article I wrote for their Education Life section.

Read the piece, and then play this video, taken this morning by his caregiver John. John merely said to Nat, “What do you want for breakfast?” while sitting on the couch, not even in the kitchen. And then Nat went ahead, as you can see. NO PROMPTS.

And now say to yourself, “With autism, never say ‘never.’ With any human being, never say ‘never.’” If any professional every tells you “He will never be able to …” you might consider walking right out of that office, and directing them to this blog post and the video below:

NAT making breakfast with NO prompts, 1/28/15

Wednesday, January 14, 2015

Waiting for the light to go on

This morning while driving I realized I was behind a van, one of those tall white ones, that transport either school kids with disabilities, or adults in day programs. The rearmost seat showed a hatted head, with gray hair sticking out underneath so I knew it was an adult van. Then I thought of Nat, of course. I remembered immediately that he would be at work this morning, in the supermarket parking lot gathering shopping carts. Small stab of pain in my chest, just the tiniest drop of sadness gathering there. Not because he is a person who has that kind of allegedly menial job. But because I wondered if he was cold. And that I had forgotten about him for the morning, until this moment.

The two thoughts merged while I waited for the left turn signal. The van in front of me became a blur as I remembered the actions I’d taken the other day, to protect Nat from being cold. I had heard from the day program that he was coming in without hat and gloves, and was wearing low socks. Right away I had talked to his caregiver John, whom I love, and who loves Nat dearly, and we’d figured out together what to do. John had then spoken to the day program, agreed about the socks, and then the day program director — also a good guy — pointed out in turn that he’d discovered Nat’s missing hat and gloves in someone else’s locker there. Problem solved.

It’s not often that easy. I often have trouble figuring out what Nat’s doing when during his week and it is no one’s fault. It’s just that he is involved with many people during his days. There are many parts to the Nat machine and keeping them all well-oiled and operative is still my job — even though I am no mechanic. I’m much better at the softer skills, the things I can see and touch, particularly when he is home with us on the weekends. I can look around the kitchen and see he has not yet eaten. Then the problem is to get him to initiate wanting to eat. That is a piece that flies away from me whenever I come near it, like a startled bird. You can never really catch those birds. I don’t know if I will ever get Nat to consistently ask for what he needs, let alone just take it. I am the proponent of “With autism, never say never.” And I’m not saying “never,” but I am seeing initiation for Nat with a big sigh blocking it. And I’m just as much an obstacle, because I love mothering in certain ways, and jumping to make a fun meal for him is one of my favorites. So the Goals and I seem to be at cross purposes.

Sometimes I feel that Nat and his adulthood, and I are at cross purposes, actually. I’m supposed to let him go, and be in the world independently, with the help of others and only sometimes me. But how in the world does one pace this type of thing? And yet it is happening, because I had indeed forgotten about him until I saw the van.

All these thoughts were tumbling through as my vision blurred and the van was a shadow. I thought, I am at such a loss about this letting go thing, because I am torn between wanting him to be a successful adult and with wanting him to feel like he still has the love and protection of his mother. Many of you are shaking your heads, smiling wryly about how I hover, or how Nat is so grown up and I just can’t see it. But do you realize that it hurts — hurts — to think that he might indeed want me more in his life and then finds that I’m not!

So there was that little pinch in my heart, that’s what it was. And then it kind of popped, like a blister, and became something else. For right there, next to those fast moving scurrying ant thoughts along came another memory, creamy and slow, like lotion in a bottle, almost run out: I realized I was at the very corner I’d been 24 years ago, where I was supposed to meet Ned and Nat (after my appointment nearby). And sure enough, Nat had materialized there, swaying atop Ned’s shoulders. Wobbily joyous. Then his face had lit up even more because he’d recognized me. There was that wide goofy baby smile. He was so glad to see me — but he had been happy without me, too.


Tuesday, January 6, 2015

Breaking News: Congress Aiming At SSDI

This information below comes directly from the Arc of the United States. The new Congress is now stealthily pushing to reduce Social Security Disability Insurance benefits by potentially 20%!!! Taking aim at the most vulnerable, most under employed sector of the US population. Is that fair? Here is the information from the Arc:

The Arc Action Alert: SSDI Under Attack Today: Tell Your Member of Congress to Vote No on House Rules

On the first day of the new Congress, proponents of cutting Social Security have hidden major disability program changes in an unrelated, routine package that sets the rules for the U.S. House of Representatives.  These changes to the Social Security disability program have not been considered in hearings or open to input from constituents.

As Members of Congress are organizing for the new session, the rules governing debate and procedure in the House must be approved.  Tucked in this package is a provision that takes off the table a routine shift in Social Security revenues needed to prevent a 20% cut in Social Security Disability Insurance (SSDI) benefits in 2016.

This vote is happening this evening – call your Member of Congress now to support SSDI.

In 2016 Social Security’s disability fund will face a long-expected shortfall due to demographic trends such as the nation’s aging population.  Since Social Security was enacted, Congress has “reallocated” payroll tax revenues between the retirement and disability trust funds – about equally in both directions – some 11 times, on a bipartisan basis, to account for such demographic shifts.

The House rules package would hold SSDI hostage by putting up roadblocks to another routine, common-sense shift in Social Security revenues.  Unless Congress acts to temporarily increase dollars going into the disability fund, in 2016 SSDI beneficiaries will face a 20% benefit cut.

Instead of having a meaningful debate about the future of Social Security and SSDI, House leadership is seeking to make major policy changes that will affect millions of people without hearings or input from their constituents, essentially in the dead of the night.

Call your Member of the House of Representatives today and ask him/her to protect SSDI and vote NO on the House rules.

The House rules package contains a harmful provision that could force cuts to Social Security, including Social Security Disability Insurance.
People with disabilities rely on this program for basic needs – any cuts will have a devastating effect on our/their lives.
This major policy is being done without hearings or input from your constituents, essentially in the dead of the night.
Vote NO on the House rules package when it comes up for a vote today.

Sunday, December 28, 2014

I am Nat’s Ghostwriter

Nat’s going home now. It’s always a blue-tinged moment for me when he leaves. I never fail to wonder if he is doing what he really wants in life. Is Self-Determination an attainable goal for someone like him? When Autistic Self-Advocacy Network (ASAN) says something like, “Nothing About Us Without Us!” can that include Nat? What if I am the person who speaks up for him the most? Am I then to be included in that “us?” I hope so.

I know I can speak for caregivers  — the ones who really, truly care for and about their autistic loved ones, not the ones who phone it in or worse — when I say that we deserve a welcome at that table. And I do feel welcomed by the autistic self-advocates, and I think that’s how it should be.  I wish their language could be amended to reflect the fact that people who have the challenges Nat faces really depend on others to speak for them. Some things about him have to happen without him. I wish it were not so, because I want him to be the author of his life. But he always has a ghostwriter, mostly me.

I don’t know how Nat feels about this reality. Is he used to not doing a lot of things for himself, by himself? Does this bother him? Or is he accepting of it? Maybe both. I guess everyone’s different in how much they accept of their inabilities. Anyway, I try so hard to talk to him, to include him in our conversations, but he still is talked about, talked over. Others are far worse than me in this regard. I’ve seen so many well-intentioned people ask me what he’d like to drink. To them, I am that intertwined with Nat’s presence. They think I know. This Christmas it was very natural for me to answer, “I don’t know, you’d have to ask him,” completely without anger. It came out naturally; I knew Nat would answer. How does he feel about these kinds of situations? I hope he’s proud that I just steer people to him, more than pissed off that I have to do that.

I notice how the norm for most people in our family is to ignore Nat. His brothers do not even think to include him in the simplest of activities, like looking at stuff on their laptops together. I wish it were different and yet this is how it has to be. Their lives, their decisions have to be their own. I know that if I were to ask them to include Nat they would, but would that be good for them? As it is they have had their lives changed greatly by having Nat with them — in good and bad ways. I cannot decide things for them without them.  It feels like it is crossing a line to do that. Don Meyer, Sibling Expert, told me in an interview that you have to let the siblings have their own existences, let them do what they need, their lives are hard enough. That there are so many questions in their minds, fears for the future both named and unnamed, that they wrestle with in regard to Nat, that for me to then step into their consciousness and give them tasks, basically give them the message that the thing they are doing is not nice — would be an invasion of an important boundary.  It’s not that they’re being mean. It’s that they are being themselves. I never let them be mean. But this is a gray area that now that they are 22 and 16 they must navigate themselves. They have to come to it themselves and the more they are allowed to be who they are, the more likely they are to come to Nat in the future and open their arms to him.

I try hard to let the three of them determine for themselves who they are and what they want to do with their lives. But they do need my guidance. They cannot be allowed to be mean. Is not including Nat mean, or is it merely what they do right now?

As for Nat, not being able to speak for himself much is one of Nat’s greatest challenges. He is frequently passive or unable to determine what he wants, and so it is a complete conundrum to help him in this regard. Helping him not be passive — the only way to do that is to sabotage things, make him so frustrated that he has to ask for them. It feels cruel and in the end, it doesn’t really help. It’s an ABA-ish solution, one where you may end up helping but the means of doing so are questionable.

You can’t force someone to move past their disability. You have to accept their limitations as much as they need to. You have to give help, and they have to accept it, but you also have to not help sometimes. Sometimes you also have to step back and let things go on in an unsatisfying, imperfect way. I don’t like that. And so, letting him go home Sunday evenings in this murky set of circumstances feels bad to me, like it does when people basically ignore Nat. In the end I have to hope that what we are doing or not doing for Nat is what he would want. Or at least what is okay with him.



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