Susan's Blog

Saturday, August 2, 2014

How Does He Know?

Life is not a bowl of cherries, but you might be able to get a lot out of a bowl of strawberries. I’m sure you don’t know what I mean, but you will.

I am a writer, a word person, and an idea person, so I am obsessed with the way people say things and know things. Also, I am a mother deeply connected to my sons; put it all together and I am fascinated with what they know and how they express it. They are all three young men by now and so I have the added challenge of trying to figure out what’s going on with them while not seeing them all the time.

Most of the time I write about Nat, because it feels like Max and Ben, who are typically developing, are much more in need of boundaries and privacy.  Nat, who has intense autism, inhabits a different kind of territory, and appears not to be aware of what I am writing about him. I may be dead wrong about this stuff, however. Sometimes I explain to him about a book I’ve written or a television or radio program I’ve been on because of him, but I am not sure how to talk about with him in a meaningful way to him. I say stuff like, “Mommy is talking on the radio about you, Nat, because you have autism and you’ve learned so many great things so other people with autism want to hear about it. Like how you talk sometimes, and how you do Facebook, and how well you ride your bike. Or how you work at Shaws. A lot of people with autism can’t do that. So people want to hear about you. It’s because you do a good job,” I say, rounding it out, distilling the message in case I’ve said too much.

The questions I often ask are what does Nat know, what does he understand of the things going on around him? But today I was thinking, “Why now, and not then?” By this I mean, why is he showing understanding of that right now, but not all those other times? What happens in his mind that makes these circuits switch on? The people that believe in Applied Behavioral Analysis — and I believe in pieces of it, which in itself might nullify ABA which is an entire system, a stack of concepts and trials layered intricately one upon the other, built in a particular order so that if you work on only this part or that, you end up pulling out blocks as if in a big Jenga tower — the ABA-ists would say that Nat knows because of the repetition over the years. But I am not so sure. I of the Rube Goldberg-type junkyard mind, like to pick from this and that, the scrap heaps of ideas and creations, and find pretty things I can use in some way or another.

My mind works in great loops, with trains of thought broken, derailed, and then reuniting at the very end of the line. So how does Nat’s mind work? In the distant past I have imagined a radio with static, an impossible place filled with distracting noise, where you try to listen to the song but you just know it’s going to get knocked out again in the next moment. So you not only have a fractured song, you also have the tension of waiting for the interruption.

Lately I’ve been seeing Nat’s mind as being more like mine, maybe the way mine works in therapy. I’ve been in therapy for a very long time, on and off, mostly on, and the way it works for me is I keep learning the same things over and over, but each time deeper and clearer. So I wonder if it’s that way for Nat, where rather than a staticky radio — which implies just kind of a jumble of stuff in his head — it’s more like spiraling tunnels through the earth, mines and mine shafts that collapse sometimes. But each time he comes back up to the surface, he knows more.

I was thinking of this today that led me to consider Nat’s learning process. This morning, I gave him a bowl of strawberries. When he was younger I sprinkled sugar over them because — why not? But later, I kind of stopped because if he could eat them without sugar, then why not? And he never asked for sugar unless I offered it, and well, I just kind of stopped offering it, figuring it was probably better without all that sugar.

So he was eating the strawberries and looking up at me ever few seconds. But I was busy with something so I ignored him. I didn’t mean to. Then suddenly he got up from his chair and stood in front of me at the counter. He bent towards the sugar bowl but then stood up straight again, looking at me. “What, Nat?” I asked, really not knowing what.

“Sugar, want sugar please!” (I think he said please.)

“Oh, wow, Nat, that’s great that you told me! Wow, great!” I said, dumping a pile of sugar on his strawberries.

So why now and not all these other years? What does he suddenly know, that he asked for something like that?

I sure as hell don’t know.

Thursday, July 31, 2014

Is De-Auticizing the Goal?

This New York Times piece came my way, and frankly I’m pretty disappointed. “Kids Who ‘Beat’ Autism” is the title, so right away you can see the bias. The author, Ruth Padawer, obviously thinks she is onto something new (decades-old Applied Behavioral Analysis, ABA, of all things) by showing that sometimes such treatments “work” and the kids lose all their autism symptoms. But what she is not seeing is the harm such a viewpoint can unintentionally cause.

The thrust of the article is to draw our sympathy for the families whose kids do not de-auticize, no matter how hard they tried; I don’t even know where to start with this. I understand how hard having autism can be — not firsthand, because I don’t have it — because I have witnessed my own autistic son struggle with it. But to be more precise, he struggles with communication and processing issues that have gotten in the way of his understanding mainstream behavior and interaction. In fact, typical interaction is so puzzling for him that he is often silent. When you do talk to him, it takes long moments for him to find the words. Sometimes it seems like he doesn’t even want you to talk to him, and I have to assume that is because of the effort it takes him.

I do feel for Nat, and I do feel for my family’s and other families’ struggles with disability. Disability can often mean hardship of one kind or another. Blame it on the disability or blame it on an overly complicated intolerant mainstream human race — any way you slice it, having autism is something a person does struggle with at some point or maybe all of his life. It is hard to be a square peg in a round hole.

But the author of this article reminds me of the person who comes to an Internet joke that went around years ago, and passes it along to everyone she knows as the most clever thing ever. Wow, cats with captions! Who knew? In this case, imagine, behavioral modification and positive reinforcement can be effective in squelching certain ways of acting! And oh how tragic it is — why it is downright a puzzle piece — that the other kid just smiles and makes noises. What the heck is wrong with him?  (fist shake at the world that did me wrong.)

And yet!  I empathize with that mother because I do want Nat to be able to talk, I think it would help him lead an easier life and be more independent and that is a value of mine. But he just might not be able to do more than he does, ever, and that is that.  And I’ll never be a UN interpreter or a ballerina. I will never be able to run regularly because of my knees. I will always struggle with depression, no matter how hard I try. And how about you? Does your lack of autism make you happy? Or is there something that makes you less than perfect, and struggle?

Should you feel sorry for me because Nat is fairly severely autistic after all this time? Should you pity him? No! If you read this blog regularly, you love him! You’re proud of him. And your own kid.

We must be able to move on to, “Well, I will try to help him lead the best life he can, and most of all, I want him to be safe and happy.”

What’s more, to tell you the truth I sympathized a little also with the kid who is now “no longer autistic.” He had so many aspects of his behavior taken over by others, so that he could learn how not to monopolize a conversation or be one-tracked. Sure, he can now be in mainstream society. But there are so many messages he may have learned about himself along the way, that the way he does things naturally is not acceptable. His mom was “ecstatic,”when the doctor said he could find no more autistic symptoms in her son, and to be honest, I would be too. Because maybe doors would open more for Nat. But he also has so many doors open for him, from his own growth and sweet personality. You can’t say that about a lot of so-called verbal people.

The author of the article writes the piece as if there is unquestionably no other way to feel about autism except that those that “beat” it are the kids you feel happy about, and the others are kids you feel sorry for. What kind of a message, then, is she conveying about lifelong disability? When are we ever going to get passed this quest for perfection?

 

 

Friday, July 11, 2014

Loving Nat

Loving Nat — The Jewish Advocate, July 11, 2014

My day suddenly became very dark when I got the call: “Nat’s had an incident.”

This happened when he was at his most anxious, and we did not know why. He was biting himself. Yelling, stomping. He’d 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 kidnapper, a scourge, a monster-creator. But the real truth about it – 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 and yang. Chiaroscuro.

For the first time in a long while, I prayed. My way of praying is not in Hebrew. I kind of just talk to G-d. I try to connect with Him, just like I do with Nat. I think of G-d as a person who knows so much, but I don’t know what he knows. Perhaps G-d has His own brand of autism: He’s all there, but it takes a lot to feel that you are communicating effectively. And also, I feel love for G-d, without question. It just is, like my love for my children.

I did what I could in my fashion of praying for Nat to come out of this dark moment. I talked until I felt done. Then real life took over again, as we got a 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.

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 with the thought, “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.” I was skeptical; 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? Did I want to come! Within a few minutes, I had taken over. First we’d take Nat out for a treat – to Starbucks – and then to the doctor. We got to Starbucks 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 strangely calm. He wanted to see the doctor – that was clear. His spirit seemed soft once more. I hoped that the crisis might be over, that it was an aberration, all because he was sick. Later on we would learn that he did indeed have strep throat. 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. I looked at Nat. His hair, thick, soft and golden like a chick’s feathers.

“Really, he’s beautiful,” the woman said. “He’s lucky to have been born that way,” she said.

And as I sat there, basking in my son’s light, I kind of felt like, yeah, it is definitely worth it, trying to connect with someone you love – whether it is your child, or even G-d.

Thursday, June 12, 2014

Are We Sure We Should Close All Sheltered Workshops?

How to balance the will of the majority with the needs of the few? In the case of the Inclusion movement, balance may prove elusive. Like so many movements, the cause of disability rights is saddled with a heavy history that advocates now want to be sure to avoid. In the past we had institutions. The documented abuse that inmates suffered is the stuff of horror films. Now the trend is to close all sheltered workshops. Vermont and Massachusetts are among the first to take measures towards that goal. Of course; these are two of the most progressive states in the country, and sheltered workshops is a social justice cause if there ever was one.

Yet, not all of us agree with the wholesale condemnation of this practice for the simple reason that self-determination may be at stake. Closing institutions and sheltered workshops is an admirable goal but only when we are certain that the very folks using them will benefit. And if we are only hearing from advocates who can express themselves, or non-disabled caregivers and well-intentioned people, we may not actually be acting in the interests of the actual clients. “Nothing about us without us” is the call of the disability advocate today, and nothing could be more sensible. The sticky point comes in when you have the lower-functioning people doing piecework and enjoying it. On May 6, during the airing of her film “Rachel Is,” a documentary about an intellectually disabled young woman transitioning out of school, documentary filmmaker Charlotte Glynn tweeted: “Working in a sheltered workshop is the most important part of Rachel’s life. Work=structure=meaning.” Watching the film, it is clear that Rachel does indeed like doing what she does.

Not only must we consider the preferences of the sheltered workshop employees themselves; we have to ask if closing the workshops will lead to a better life for them. Will the workforce be willing and able to accommodate people who need so many supports? Even with the best of intentions, it is hard to imagine how our society will thoroughly and effectively absorb the highly challenged disabled who currently have occupations in the sheltered workshops. We love to imagine it, but what will the reality be? As it is, even the “higher functioning” disabled are grossly under-employed. The funding needed for job coaches and transportation alone would require states to make use of Medicaid dollars — dollars they must spend first in order to receive the 50% reimbursement from the Federal Government. States like Massachusetts, which do make use of these Medicaid dollars this way still have a gigantic waiting list of people who need employment support.

If the reality of closing sheltered workshops means an empty day coloring or watching television, how is that better for someone than having work to do — even if that work is “no better than” piecework? Who are we to judge what kind of work is best? Okay, certainly underpaid, beneath-minimum-wage work is not good. All workers should be fairly compensated. But — is our distaste based in something more amorphous, and less admirable? Is it that we well-meaning advocates wouldn’t want such work ourselves, so we imagine that it is beneath our loved ones as well?

We have to be careful that we are not making gross assumptions that we know what’s good for another human being. We have to make room for individual preferences and skill levels. Advocates must to the best of their abilities assess whether the sheltered workshop employee is enjoying himself — even if to “us” the work seems beneath them. Sure, if we can tell that the person in question is foundering, stagnating, feeling disenfranchised and discouraged, let’s work on helping him figure out what his vocation is, what his special talents are. But let’s not eliminate something wholesale on principal that it is wrong for everyone. For some people, work is work, and they are glad to have a job, any job. As one autistic woman once told me, “There is no such thing as a bad job. Only bad attitudes.”

Tuesday, June 10, 2014

Great Father’s Day Book

PERFECT FOR FATHER’S DAY!

I just found out that my New York Times “Lives” column from 2010 is being published in a small NYT anthology of Lives columns, “Moms and Dads” From the Lives Column.   Available at the following places:
Featured TBook this month, available for free (?) to Times subscribers, iTunes,  Amazon, B&N
And elsewhere.

Wednesday, May 28, 2014

No Wholesale Blame; Instead, Reframe

The Washington Post, which ran a story last week about how a new study is attempting to tie autism to serial killing. The Post published the article even though researchers involved were quick to point out that their work was nowhere near complete. And for those who had the patience to read through to the end, it also became clear that the study was based on some very spurious techniques (such as looking at certain historic killers and speculating about their lack of eye contact, their inability to empathize). To its credit, the Post quoted The Autism Society of America, a longtime advocacy group with this response: “To imply or suggest that some linkage exists is wrong and is harmful to more than 1.5 million law-abiding, nonviolent and wonderful individuals who live with autism every day.” Yet the poisonous headline talking about “significant statistics” — which they were not — was probably enough for most people.

A few days passed, and then came the horrific Santa Barbara massacre, where the killer targeted a sorority in his sick attempt to punish women for rejecting him. Like everyone else, I’ve felt lacerated by Michael Martinez, a victim’s father, and his fiery rage at the vacuum of Congressional leadership, into which so much NRA money has flowed.  As we all try to make sense and even solve this problem, people start thinking about what went wrong. Why didn’t they do anything about this young man’s arsenal of weapons? Why didn’t the parents do more to help? Couldn’t anyone see that this student was very, very sick? Through all of this, there have been questions about diagnosis. Was the young man on the autism spectrum? Or did he have some kind of mental illness? What was it that caused the snap?

Right away there is a rush to explain somehow. The autism advocates divorce violence from the disability. Autism is neurological, not psychological. Autism can have co-occurring disabilities, like intellectual delay or sensory, communicative, or behavioral challenges. But autism does not lead to violence.

There are so many reasons that this tragedy happened, and yet there will be no one answer. That’s something that we humans hate. From the beginning of time we have wanted explanations for why. Why the crops fail. Why we are here. Why children die.

How could this happen? We don’t know. But that is so unsatisfying. What do we do?
Some thoughts:

1) Learn from the killing. Now we know that children and loved ones who seem to have changed for the worse are worth looking into. It is never to early to get help. We also need to monitor them for improvement, or lack thereof. Make sure they are taking their meds, make sure they are not collecting weapons.

2) Advocate for tougher gun laws. Even if later on we find out that this did not work, shouldn’t we give credence to the possibility that more rigorous background checks and limiting certain types of weaponry in the country might help? Perhaps the NRA can meet with Mr. Martinez and then see if they are as certain of themselves. Maybe the NRA can also think about whether the right to live, to not be shot to death, is as important as the right to bear arms? I am not being facetious. I understand the NRA’s insistence on the Second Amendment. I am begging them to be more flexible in the face of growing serial violence from guns.

3) Bolster our access to mental health care. Insurance companies should not make it so tough to get help.

4) Fight the stigma that mental illness — and perhaps autism — carry. Remind ourselves that we cannot turn into lynch mobs informed by our uneducated gut feelings. Keep educating the public that murder is wrong, but mental illness is something that can be helped.

5) Continue to understand all the different forms evil takes. Cultural misogyny is one that we now have to face.

6) Pray for those in pain. Reach out, connect.

 

 

 

 

Friday, May 23, 2014

One Size Does Not Fit All

The institutions are closing. The sheltered workshops are closing. Group homes must be small or else they come under suspicious scrutiny. We don’t want people being clumped together by disability. We don’t want people isolated anymore. Damn right. We want inclusion.

Ah, Inclusion. That beacon on a darkened sea, that oasis in the dessert. The siren song that lures the autism parent onto the rocks.

Hey, I’m all for it. Really. How could I not be? Inclusion is about fairness. Inclusion beckons the outlier into the warmth of the crowd. Soon after Inclusion, there is no more Other, there is just Us.

That’s good, if it can even happen. And usually when people write about inclusion it is to assess how well we do it. Does the school accommodate well enough, adapt curriculum, provide an aide, pull-out lessons, small class-size (any and all)? We also support inclusion in the form of the open door. We now open up the colleges, for example, by offering disability services, or even targeted programs. Legally we must open up the work place and be careful not to discriminate. Lately there is even more focus on vocational training as well as raising awareness in employers. The typical conversation about inclusion is about bringing people in, opening doors that were closed, and reducing isolation.

What is the answer, though, if isolation is good for the person? If the person prefers isolation? Especially in the case of autism: someone with autism might not be able to function well with talkier types, with the mainstream people who are all about including. Someone with autism might not feel understood by normals, by neurotypicals, or even by the larger crowds that inclusive people inhabit.

What if the person wants to live with others like him, where he may feel safer? Don’t we have to take that into account, in the name of Self-Determination?  Or, if we don’t know what he wants because of communication issues, what if the parents or guardians want him with people who have similar challenges, for whatever reason? Maybe it makes staffing more straightforward, for example the house begun in Sharon, Massachusetts that is all Higashi-educated young adults and Higashi-trained staff. This is fine with the Inclusionists, as long as the home is fewer than 6 people. But what if these families want their loved ones to live near others with the same kind of education and worldview?

More than 5 people and you start to have an Institution, and that is frowned upon. I don’t think that’s fair. I think we have to be more individualized in our approach and go with what the person wants — as best as we can. We have to be careful not to be dogmatic and act institutional in the name of a philosophy. Forcing everyone into the same kind of living situation of small group home or even smaller shared living set-up — and refusing to fund anything else — may not be taking into account what the person in question wants.

Furthermore, why do we say that people need “normal” role models? Why isn’t it enough to be with other people, period — even ones as disabled as him? My own autistic adult son Nat loves who he loves. One of his loves is a young man who is really affected by autism. Jumps, pounds his chest, doesn’t talk much, runs around nonstop. Nat smiles alot around this guy, and mentions his name quite a bit. What will Nat ever learn from him, you might ask.

Why is that even a question? You love who you love. Each one of us is a person, a full-on human being. Why is it better for Nat to be around someone who talks? It’s better for Nat’s mental and social development, I know that. But doesn’t this friendship also have merit, particularly in that Nat chooses to be with this guy sometimes?

I venture to say that the same goes for Sheltered Workshops. I don’t like a sheltered workshop when the person can and wants to work outside in a more normal job environment. I don’t believe people should be denied minimum wage. If you’re doing a job, you deserve to be compensated. But I do feel that if you have a really hard time being more out in the world with behavioral pressures and social subtleties and hard ass bosses — maybe you should be able to be sheltered. It’s about the person’s needs, desires, and abilities. Opening the workplaces:  definitely. Assume that every single person should be in the workplace: not so much.

If you think we can close all the workshops and get every single person into a “real” job, then do it. Show me how you can do that for every single person so that no one falls through the cracks. If we can get every single disabled person a “real” job, then great. Do it. If that’s what they want. But I don’t believe that is something that’s for anyone. One size fits all rarely works for something as relatively simple as clothes. One size fits all is pretty much impossible and irrelevant for individuals.

 

 

 

 

 

 

Empathy

Here is my latest column on NPR/WBUR’s Cognoscenti Column, written about 9 year old Benj and how his empathy button got flipped on by a video game character:

It’s easy to associate video games with violence. I used to worry constantly about this connection, especially when my youngest became a dedicated gamer. But even before his affinity with technology began, I worried about his seeming lack of compassion, and how he angered so easily.

Finally we decided to have Ben evaluated at Children’s Hospital. The official diagnosis was, “Normal but stubborn,” which seemed exactly right — but was no help at all. Ben did seem to have a problem with hardheadedness — or perhaps even hardheartedness. My own heart was rubbed raw by this. How could it be that he didn’t get it after all his dad and I did to model empathetic behavior?

But if someone is not ready for a developmental phase, they just aren’t. You can’t hurry love, I guess. Still, I was scared for him; how was he going to get through the vicious years of middle school if he showed so much prickliness and anger so easily?

And indeed, when along came the tween years, we did end up with days upon days of little boys huddled indoors with consoles yelling at blocky figures running up and down the screen. Our house was filled with the breathy flutes of Zelda and the high-pitched screams of Kirby. And then there was the carnival-like music of Super Mario, the plumber-turned-superhero, who moved through pipes trying to catch or escape bad guys, the worst of whom was a character known as the Goomba.

Ben loved the game, and played and discussed it nonstop. I could not tune into the intricacies of the different levels or plots, but I did listen as attentively as a tired and confused mother can. The whole kill-or-be-killed mentality bothered me. But still, Mario seemed benign enough, so I let it go. My mother agreed, and so for Chanukah she presented Ben with a stuffed Goomba. That night, Ben slept with his new toy, which he named “Webster Goomez.”

A day or so later, Ben remarked that Webster was “kind of adorable.”

Adorable? Did I hear that right? Never had such a word come out of Ben before. I quickly recovered my cool and tried not to make too big a deal out of it, so as not to embarrass him. But inside, I cradled that word, longed to hear it again, hoping I hadn’t imagined it. But no, this was for real. A few days later, I heard Ben describing a different character as “cute.”

Had this mean little mushroom cracked open a tiny chink in Ben’s armor? Had the undistilled peevish nature of the Goomba given Ben someone angry to relate to? Maybe it was that loving Webster Goomez didn’t present a threat to Ben’s own tough guy persona. He was free to appreciate his simplistic nasty — but cute — ways.

The Goomba had flipped a switch, and now Ben’s open adoration just kept flowing. The words “adorable” and “cute” became frequent words in his vocabulary. Other evil stuffed characters made their way into Ben’s bed. And, on Ben’s 10th birthday, we felt encouraged enough to get him a game called “Drawn to Life” for his Nintendo DS. Why? Because it too teemed with tiny adorable creatures. Ben showed me the game and how it was played, pointing out these sweet little round blue guys. “You have to step on them, though, you know, to kill them,” he said to me.

“You do?” I asked, dismayed. Why did it always have to end in death?

It turned out Ben agreed. “Yeah,” he said. “It’s too bad. They shouldn’t make them so cute! It’s cruel!”

“Maybe you don’t have to kill them?” I suggested, but halfheartedly, because this was a video game, after all, and even in my day (the days of Ms. Pacman), cute little things had to get eaten or exploded in order to win.

But the next day Ben casually informed me that he was no longer killing the cute blue guys. He had also told his friend not to kill them.

“Wow!” I said, a fullness in my heart, so much pride at this new moral strength. “So, Ben, what will happen, do you think, if everyone stopped killing those blue guys?”

“They’d get to live!” he shouted happily.

Game over?

Friday, May 16, 2014

What, Exactly, Is Normal?

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.

 

 

Tuesday, May 13, 2014

Poem for the IM Age

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.

 

 

Saturday, May 10, 2014

PBS World’s Airing of “Rachel Is”

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.

Monday, May 5, 2014

Watch Me on PBS 5/6/14!

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 Receives 2014 Worker of the Year Award

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!

 

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GO NAT!!!

 

Friday, May 2, 2014

A Resource and An Initiative for ASD Adulthood

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:

Finding 1: Higher education is an important pathway to employment in the community

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.

Finding 2: Students with ID/ASD ages 18-22 experience barriers in their transition from high school to adult life, including lack of access to Inclusive Concurrent Enrollment opportunities. MCAS requirements bar many students. Students with ID/ASD who reach the age of 22 have even more limited access to inclusive higher education because they are not able to participate in Inclusive Concurrent Enrollment opportunities after they turn 22.

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.

Finding 3: Students with ID/ASD must attend an approved Comprehensive Transition Program (CTP) in order to be eligible for federal financial aid (i.e., Pell Grants, Federal Work Study Program, and Supplemental Educational Opportunity Grants).  Massachusetts currently does not have any approved CTPs.

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.

Finding 4: Initial data reported by DESE demonstrate the value of the ICE initiative. To date, resources have not been available to conduct a more comprehensive evaluation in order to further identify student outcomes and evidence-based practice, including practices, policies, and structures that are correlated with improved student outcomes in areas such as integrated competitive employment, self-determination, independent living, and community membership.

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

 

Thursday, May 1, 2014

Sports is the Catalyst

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

Wednesday, April 30, 2014

Chiaroscuro

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.

 

 

 

 

 

 

Friday, April 11, 2014

Electric Shock is Never An Educational Approach

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.

Screenshot 2014-04-11 11.20.27

Tuesday, April 1, 2014

Really? Autism Awareness Month?

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

Nat wins the gold in the 25 meter relay

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Ben, Nat, and Max sat.

Ben, Nat, and Max sat.

77065_450658450755_547480755_5899117_3692125_n Me and Nat at WDW!! 20130513_134328 copy 2013-01-05 18.34.10

Thursday, March 20, 2014

Alternative to Group Home: Shared Living

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.

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Wednesday, March 19, 2014

Small But Huge Innovation

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.

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