I was in the lobby when those first notes from “Circle of Life” broke through at the autism-friendly Autism Speaks-supported Lion King at the Boston Opera House. I was standing just outside the doors, as Main Floor Navigator, in the lobby with the actors about to walk through the doors onstage. They were the animals coming to see the new baby Lion. I stepped backwards to give them more room. I felt like a child allowed to be at the adult party. All around me the actors had their costumes half-on, with the masks on the floor, at their feet. Huge hairy water buffalo heads rose from the ground like monoliths; a ghostly translucent giant rhinoceros, made of blue grey papery ribcage and thick tree-trunk legs materialized off to my left. They all tensed at that first call; then there was a velvety hush in the lobby, and they answered as one, a capello, angel-like,,getting into their roles, summoning all that clear, half-whispered awe in those syllables. The doors opened, and they strode into the theater, through the audience. I felt chills, and tears sprang to my eyes. A profound beginning, but also, so many memories swirling around me, carrying me away on their sweet tide. My first two babies,Natty, 3 1/2, and 18 month old Maxie, sitting in the backseat of our little red Honda Civic hatchback at the Wellfleet Drive-In on Cape Cod. It was Max’s first movie.
The animals all sang to their new tiny king to pay homage, a blast of brilliant hue, animal shapes, a cacophony — really a symphony of cries, so loud, so moving — filled our ears. Then, as if a plug is pulled from a bathtub, the sound is sucked away and it’s all dark.
“What dis movie?” Little Max asked me, thinking that the opening scene was the entire film — it was that huge to him. Oh Maxie! You were so little you didn’t even know that. Even then you were fascinated with film. Who knew you’d grow up to graduate from NYU’s Tisch School of the arts, a camera artist, a budding cinematographer?
But I’m getting behind — and ahead of myself. Yesterday Max wasn’t there, but Nat was, now almost 25. Wearing the same oversized yellow lion face tee shirt as Ned and all the other adult volunteers. We were all there to navigate, assist, calm, and bask in this beautiful Autistic Assembly, this army of parents and caregivers, for once not fighting bureaucracy, school systems, or sad wistful taunting dreams. They were there, at peace, accepted and loved. Some guys didn’t make it through the next scene. Ned told me parents would come up to him, he was an usher, and say, “We just have to — ” And he’d say, “It’s okay,” and point the way to the calming room, or the exit, or the bathroom. One friend came out with her grown son (who had her very same face) (I’d never met him, I got to meet so many of my Autism friends’ kids). This friend said to me, “I think we’re going to declare victory…” Ned turned to me and said, “Was she thinking of my words?” So long ago, Ned had come up with our family mantra: “Declare victory, then get the hell out.” Meaning, we, the family, would set the terms of success. We would decide how much of this moment in time we could get through and then we could leave feeling triumphant.
Yesterday we were all triumphant. The Opera Workers seemed delighted. The actors hummed with their energy and ours. The “regular” world had met us and welcomed us. We were surrounded, and embraced, by a Circle of Friends.
Okay, and here is my latest Washington Post Oped, about my troubles with Facebook. It’s all true, bro. Yeah, it’s already up on FB, too.
Family-friendly Broadway is nothing new, and its success is no surprise. But autism-friendly Broadway is a stroke of marketing genius. Billed as “judgment-free, ” these shows generally offer a stimuli-sensitive environment: low light and sound, quiet space, autism specialists available for extra support.
There have been pockets of such performances offered around the country in the last six years but Theater Development Fund’s (TDF) Autism Theatre Initiative has taken the concept to a new level. TDF has been funding overwhelmingly popular performances – most recently the Lion King — at venues like Los Angeles’ Pantages Theater and the Autism Speaks-Boston Opera House venture on October 11. The Madison Square Garden Lion King on September 28 apparently sold out in just days.
I am of course, a veteran autism mom – Nat is almost 25 – and this kind of trend is, well, music to my ears. When Nat was a child, he didn’t even get to go to school in his hometown, let alone participate in any normal after school fun. For Nat, rather than taking an art class like his brothers did, or a group music lesson, everything Nat did was therapeutic — music therapy, art therapy. Or I had to pay big bucks for a one-to-one, which I only did for Sunday School because back then that synagogue had no special needs curriculum. I did organize an autism spectrum soccer team, but the coaches gravitated towards the less autistic teammates and left Nat in the dust. One year he was taught to tolerate wearing a costume so that he could be in the class play. Everyone could say he was being included, but was he? It just seemed so — fake.
Still, I never gave up looking for a welcoming place where Nat could really participate, like any other kid. And every now and then we did manage a family outing to a movie, with no behaviors, no outbursts, and with a lot of positive reinforcement. In the safe accepting dark of the theater we’d dole out a piece of popcorn to him every few minutes that he was quiet. Back then our goal was usually getting through things – enjoyment took a back seat. “Declare victory then get the hell out,” my husband would say.
I will readily admit that I had serious problems with being oversensitive to anyone looking at Nat cross-eyed. I have intolerance-for-Nat radar that may be highly tuned to a faulty. So I was not much help when it came to joining with organizations that offered kid experiences. Still I yearned for a time when we didn’t have to explain Nat and watch his every move and try to intercept his autism so that everyone else could enjoy their lives. I faulted society for being intolerant and clueless. But most of the time, I faulted myself for being unable to give him more of a normal life.
Wow, have things changed. Not to sound cynical, but autism is big business. And yes, many more people really care about our guys and want to help them enjoy our world. So I am cheering for the autism-friendly Lion King performances — not only because I love the show, but because of the attention and respect being given to kids like Nat. Yes, it is a separate performance, but it is the real deal. And I have made my peace with the fact that with autism, sometimes inclusion simply means having the same experience as other people. Sure, I wish that every performance in every theater could be autism-friendly. Yes, there is still a stony part of me that is resentful of the generally autism-unfriendly world. But, hey, one step at a time. You know – Hakuna Matata.
This article is from the Disability Scoop, by Michelle Diament. If you are a person with a disability and you have Medicaid benefits, the bipartisan ABLE Act would allow you to save up to $14,000 a year, and up to $100,000 total, rather than the current $2000 total — and you would not lose your Medicaid benefit. You could save for a home, education, transportation…
I decided to be the Stealth Mommer today. I was so anxious as I drove to Nat’s workplace. But I told myself there was no need to worry, that I would not let him see me. He would not detect a blip in the Shaw’s parking lot forcefield and freak out. And why should he freak out that his mom was shopping there? Well, because it is Nat and me. We are connected by an invisible umbilical cord. That is not meant to infantilize him. It is a statement of fact, that our connection is deep and eternal. I’ve mentioned my plans to haunt him, yes? I do not plan to lie passively in some grave somewhere while he goes on trying to figure out this damned complicated world. Nor will I be a Mombie, chewing up his life. I plan to be a wisp of a presence in his soul, a memory, comforting and guiding him.
Okay, well, I don’t believe in afterlife, so that probably won’t happen. It sucks that we have to die and leave our kids to grieve and muddle through. Sucks doesn’t even begin to describe it, actually, but I don’t feel like dwelling in my saddest place today. Because I saw Nat at work.
Anyway… I planned to observe covertly. But soon after going into the store I almost bumped right into him. He was in profile, tall and sure in his navy down jacket (Yay! Warmly dressed!). He did not notice me, and went safely past me with his coworker and coach, pushing carts, smiling, talking to himself. So happy they don’t bug him about stimming. I kept watching him from afar. He went from carts to stacking the baskets. His coach was right there with him, which surprised me — I thought they were fading back a bit. But I leave that decision to them.
I then ventured closer and closer. I asked a Shaw’s worker if she knew him and she said, “Nate? Your Nate’s mom? Oh, he’s great!” I wanted to hug her. But I smiled and thanked her and left her with her table of sample cake slices. Nat had moved around to the other entrance.
I must confess that I gave in to my hovering mothering tendencies and finally let Nat see me. I stood still, 15 feet away, and removed my sunglasses. Right away he said, “Hi.” but just kept walking. I sheepishly introduced myself to the job coach. We shook hands, and she was smiling so much. She also told me how “He’s so great.”
I worried that Nat would be knocked off balance because I was there. So I said casually, “Nat, I’m shopping because I needed some food for the weekend!”
“I got you brownies!”
“I’ll see you soon, tonight, for supper!”
I went back to my car and drove past them again, an odd trio: tall blond Nat, short round coworker, tall thin smiling coach.
I sighed with happiness over my son. This is called “nachas” in Yiddish (pronounced “nakhahs”). Nachas is a perfect way to end one’s week, seeing a so-called “disabled” young man who is a treasured employee and fellow great guy to them. Plus now I have brownies.
Today Nat wanted to do some Facebooking. The way we do that is I have him look at the column of all the people who are logged on at the moment — the green dots show him — and then he chooses whom to talk to. He initiates the conversation with “hi.” After the person responds, I help him by reading their response and then repeating it to him. So when they say, “Hi Nat, what are you doing today?” I then say, “Nat, she wants to know what are you doing today. So tell her, what are you doing?” And whatever he says, I say, “Okay, so tell her that. Type that.” And then I sound out his answer for him, a sound at a time. So if he answered, “Sitting here.” I say, “S..” and I wait. I say again, “S…” He then says, “S” and I say, “Okay, type that!” If he does not say “S” then I go back to, “Nat, you said, ‘Sitting here.’ Type that.” And begin again.
Today he was very logy. And yet he really really wanted to do Facebook. He just had a hard time getting his info from his brain to his mouth and then to his typing finger. I had to repeat back his letters and sound things out but I never tell him what to say. Only if he says something that is completely default or echolalic, like “hi” too many times. Then I say, “Nat, you already said hi to her. Now say something else. You can tell her what you did yesterday. You can tell her what you want to eat.” Then he will answer something, like, “You went on a walk.” Or “Cereal.” So I’ll just say, “Okay! Type that!”
I always ask him the other person’s question and take whatever he says, no matter what it is, and help him shape it into a response. I coach him a sound at a time how to spell and type it. He does invented spelling, not accurate spelling. I don’t care. These are his direct thoughts.
This morning he chose his Aunt Laura to talk to. Here is the conversation, and I am beyond proud of him because he really really wanted to hang in there and talk to her.
LAURA: Hi Nat!
L: Where are you?
N: where here
L: at your mom and dad’s?
N: alrtan st
L: What are you doing today?
N: stay at al alrian st
go to kalton streatn
L: Did you do anything special yesterday?
N: went on wlk
L: I bet you got a treat too!
happy barfly jon love nat
L: Thank you so much Nat, I will tell John. Yesterday Kim and I had cupcakes for a treat!
N: hi snaman tost cranch
L: Yum, I love that cereal, but my favorite are Lucky Charms.
N: lake charms
L: Yes. do you like them?
Nat comes home every weekend. He is quiet. Sometimes he’s “activated” as his psychopharmacologist says — I hate that. It is such an inhumane way to describe someone. He’s just active. That’s it. Activated — what’s that? It’s referring to how maybe his meds make him? No, his meds are not like that. Besides, he is practically weaned off them.
Sometimes Nat is not active at all. Sometimes he just moves from one couch to another. I can’t get away from feeling like this is something that should not be. I remember years ago, a behavioral consultant who believed in that ABA bible, “Let Me Hear Your Voice,” told us we needed to scaffold with Nat, and to chain. Lots of construction, building — and also keeping down. The eternal struggle of ABA. We’re supposed to wrestle the autism to the ground, like Secret Service agents.
So I didn’t do that. Not really. People think I’m such a good mother but I did not do that. I got tired. Depressed. Lost hope. I didn’t consistently practice the ABA. He’s almost 25 for God’s sake and I’m still beating myself up for it. I did not believe it was the way.
Was I wrong? He is so quiet. If I had believed and converted, would I be hearing his voice more?
My heart just breaks for him. How is it okay, living such a quiet life?
I did the best I could, but my best was at times anemic, tired, mediocre. And he suffers for that. He is only as engaged as I make him be. That’s what a teacher told me when he was 5. It was all up to me in the end.
It’s always up to the parents. Even Post-Refrigerator. I see that now even with Nat as an adult. It’s up to us. From the start. The parents give birth. The parents try. The parents have to figure out that something’s wrong. The parents have to convince the doctor. The parents have to push the school system. The parents have to deal with their sadness, their incompetence. Everyone’s incompetence. And ignorance.
Then the evil of the adulthood system starts and there’s even less. Parents come to the rescue again. Parents will tell you what to do. Parents will listen. Parents write the blogs. Parents run the workshops. And write the books. I’m still writing mine, but just so you know. I’m no expert, either. I am just a mom, and not always a good one.
It’s just we humans and our beautiful, vulnerable children.
Here is an essay I wrote for our service provider’s newsletter, about Shared Living for Nat. Enjoy!
Valuable home-purchasing information for anyone in the country with a developmental disability looking for a possible low percentage down mortgage. I received this information from Autism Housing Pathways’ Cathy Boyle. It may now be possible for parents to buy with very little down through Fannie Mae if the property is for a son or daughter with a developmental disability!
How to get a 5% down mortgage from Fannie Mae if you are buying a property for a son or daughter with a developmental or physical disability:
The key language is in the Fannie Mae selling guide.
Note: If a property is used as a group home, and a natural-person individual occupies the property as a principal residence or as a second home, Fannie Mae’s terms and conditions for such occupancy status as provided will be applicable.
Also please note, this is different from the Fannie Mae HomeChoice program, in which the individual with a disability is the owner of the property, and the family member is a non-occupying co-borrower. In this case, the family owns the house. This *should* allow the person with a disability to use a Sec. 8 voucher, provided the local housing authority permits the family to be the landlord as a reasonable accommodation. This is not true of HomeChoice, which doesn’t permit the use of a Sec. 8 rental voucher.
This is a very exciting discovery.
As always, neither I, nor Cathy Boyle, nor Autism Housing Pathways, is engaged in providing financial or legal advice. Always double check everything with your own financial and legal advisers. A full legal disclaimer is available at the Autism Housing Pathways website.
Another great resource for Massachusetts autism adult housing: Housing 101 Workshops you can set up for your own organization. Autism Housing Pathways will bring their workshop to you!
Autism Housing Pathways* has now developed “Thinking about housing” to be “Housing 101″ for families. This free 2 hour presentation introduces families to the range of public funds available to pay for housing and supportive services (including for those without DDS supports). Some examples are given of how these can be combined with private funds to create housing. The presentation also introduces a checklist of things to do when your family member turns 18.
Their current schedule of presentations is:
Oct. 6, 2014 at 6:30 PM at Community Resources for People with Autism, 116 Pleasant St., Suite 366, Easthampton (RSVP to JanDoody@theassociationinc.org)
Oct. 7, 2014 at 6:30 PM at 7 Hills Family Services, 128 Main St., Sturbridge (RSVP by calling 7 Hills Family Services, 508-796-1952)
Nov. 5, 2014 at 6:30 PM at BAMSI, 155 Webster St., Unit D, Hanover (RSVP to Mary Ann Mills-Lassiter at 781-878-4074 ext. 11, or email@example.com)
Dec. 16, 2014 at 7:00 PM at Cary Memorial Library, 1874 Mass. Ave., Lexington (sponsored by Lexington SEPAC; RSVP to Barbara White, firstname.lastname@example.org)
Dec. 17, 2014 at 7:00 PM at Morse Institute Library, 14 East Central Street, lower level, Natick (sponsored by the Autism Alliance of Metro West; RSVP to email@example.com)
At least 5 more presentations will be added during the school year. If your organization wishes to host a presentation, please contact Cathy Boyle, firstname.lastname@example.org
*Autism Housing Pathways is a non-profit that my friend Cathy Boyle developed here in Massachusetts. AHP’s core values are as follow:
Autism Housing Pathways (AHP) is a family-driven, membership-based organization serving individuals and families in Massachusetts impacted by autism and other developmental disabilities. We have the following core goals:
- Building the capacity of families to find or create housing solutions for their family members with disabilities;
- Improve the professional development of direct support staff;
- Conduct research on the housing needs and resources of the Massachusetts autism community
- Building the capacity of the housing sector to meet the residential needs of individuals with autism
If you are a Massachusetts resident living with a developmental disability, or if you are a Massachusetts family with a loved one with this diagnosis, pay heed! Especially if you are unlikely to qualify for a Priority One from the Department of Developmental Services at age 22. Priority One is for the most severe cases. Priority One is residential funding — home and staff. Most people in the DDS system do not qualify.
My favorite nonprofit in the entire world, Autism Housing Pathways has received a grant from the Mass. Developmental Disabilities Council. As part of the grant, Autism Housing Pathways will take a cohort of 12 individuals and families through a process that will enable them to identify housing options suited to their available supports, finances, and interests. They are currently seeking individuals and families to participate. There is no cost to participate. The preferred audience for this process are those not likely to qualify for residential services through the Dept. of Developmental Services at age 22.
What You Will Have to Do As a Participant:
1) Families will participate in a day-long housing workshop, to be held in Framingham, MA on Nov. 8th. Topics covered will include public funding streams, applying for benefits, asset development, calculating what the family can afford, possible ownership models, financing options, location, design, construction, and service providers.
2) Individuals will complete a workbook (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.
3) 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.
4) 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.
Individuals and families MUST commit to the entire process in order to participate in any of it, including the day-long workshop and the workbook. Participants will be selected on a first-come, first-served basis.
Please contact Cathy Boyle, email@example.com, 617-893-8217, if interested.
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.
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?
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.
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.”
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
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?
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.
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.
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.