Susan's Blog

Monday, May 13, 2019

But Maybe Autism Parents Can Let Go?

What’s the other side of the “I can never die?” plaint of the autism parent? I’ve done a lot of writing about the need for more protections of our vulnerable guys who do not live with us. Even so, for many of us that is not a sustainable solution. And we are not the center of the issue, even though we love our children and want to protect them. No, they themselves are. And it is their right as human beings to claim their independence if that is what they wish.

So — perhaps we parents can take a lesson from — of all things — the story of Abraham and Isaac. Not the sacrifice part — sacrificing your child is never the right thing to do — but more metaphorically, in the sense that author Jon Levenson may have meant, in The Death and Resurrection of the Beloved Son — that our children are actually not really our own, our possessions. They are born to us to protect, teach, and love, but the purpose of having children is to create beautiful souls who can live lives of meaning and goodness. So when a very good friend of mine who had read Levenson’s book raised the possibility that the Isaac story in terms of the very real necessity of letting your child go, it made me think, and it gave me comfort. “We do what we can to keep them safe,” my friend said, “but ultimately what happens to them is not up to us.”  She’s not a Fatalist or a religious extremist. She believes in free will. But she also acknowledges that there is an entire random universe that has a say in what goes on.

For months I’ve been struggling with the question of where Nat should live. He has been home with us since early March because the shared living arrangement he’d been in fell apart. Yet from his late teens through this year, I’d been dreaming of Nat in just such a “normal” setting in the community with caregiver friends. But once we had achieved this, we could see how it was not enough support for Nat. But I was resistant to group homes because of horror stories. No, I would simply have to take care of him myself to keep him safe. We’d buy a two-family home with a caregiver living right downstairs with him. We would share the care of Nat until we no longer could. But then what? Who would become “us,” in the upstairs apartment? Would it be Max and Ben, Nat’s younger brothers? No, because they are on their own paths.

We need to be able to build lives for our loved ones where they can exist without us. But how? And then, just a few weeks ago, remarkably, another wise friend said something that put group homes in a new light for me. “Group homes can be something not to resign yourself to, but something to be excited about.” But how, I asked, given the potential for abuse? She said that we take big risks all the time, we just don’t think about it. Bad things can happen to anyone. Even Nat. (And so they have. And not while he was in a group home, by the way.) But bad things — God forbid — can also happen to Max and Ben. And Ned. And me. When you look around, you see that bad things happen anywhere, out of the blue, at any time. Car accidents, gun massacres, measles outbreaks, floods, drugs, cancer, suicide, divorce, homelessness, the Trump presidency. This may sound like a terribly pessimistic appraisal of the human condition, but it was bizarrely comforting. Because it is the way life is. Unpredictable, at times scary and horrible “red in tooth and claw,” according to Tennyson.

The truth is, that in a good group home there are many “eyes on,” meaning, there are enough staff to take care of and watch out for your guy. Conversely, there are four other people in need of care and so you really do have to learn to suck it up a little. And if you have a need not being met, you have to learn how to get that taken care of. You learn how to deal with others who don’t love you and may not understand the way you communicate. This applies to both staff and other residents. Group homes also offer structure, again, because they must. There would be too much chaos to run a group home without a schedule and expectations.

I’ve done due diligence. I have found group homes that are good, not at all grim, and long-lived. So we do not have to set up our own (risky) situation. My family need not spend tens of thousands of dollars a year on support staff — and what is the guarantee that private group homes staff are any safer? The beauty of public programs like the Medicaid waiver are that we don’t have to reinvent the wheel, or set up alternative programs that offer the “dignity of risk” through fewer supports because actually there was too much risk there for Nat. Just because a setting looks shiny and hip because “Thank God it’s not a state-run group home,” it doesn’t mean it is good. A more inclusive, less supported setting wasn’t good for Nat — or his former caregivers. And there is no shame in that. Perhaps there is even less risk of stress and burnout in a group home because of the increased support.

Because life is so many things at so many times, we do need to take risks — smart risks. We need to keep having children, loving them with all our hearts, devoting our lives to them. But we also need to step back and let them grow up. We need to “teach our children well,” as Crosby Stills and Nash say, make intelligent choices, but in the end we are flawed, as is the world, and life. So what to do? We live our best lives anyway, hope for the best, and crawl, broken and defeated, out of the hole to live — as well as possible — again. All the while, trying to repair that messy road so that you and others do not fall in. Maybe not with the blind faith of Abraham, but a wise and informed faith. With our children we’ve got to know when to hold ’em — and when to walk away.

 

 

 

Sunday, April 28, 2019

Why Autism Parents Say “I Can Never Die”

Here is my 13th column for Psychology Today. It’s been a great year writing for them! This column is about why autism parents say “I can never die.

Tuesday, April 2, 2019

Light it up blue or red? We need a whole rainbow

Today is World Autism Acceptance/Awareness Day. Do you light it up blue? Wear red?

(Answer: I only wear what looks good on me.) Seriously, I have nothing against the Blue. Or the Red. Not so for others in my community. The Blue is deplored by many because people in our community have a beef with Autism Speaks, the original Blue Puzzle Piece organization. The antipathy ranges from how AS funds are spent, to awful Public Service Announcements from their early beginning, to the fact that research is mostly about cause and not direct support. Causation research is by implication about eradicating autism. This feels like a threat to the self advocates who embrace their autism, or to other autistic loved ones.

But Autism Speaks is largely responsible for putting autism on the map, for opening the public’s eyes to this disorder and its challenges. For securing legislation and autism funding. They offer resources to families and autism-friendly events (theater, circus performances, movie nights) nationwide, opening up supportive activities to families who may choose to stay home because it is easier.  Maybe it isn’t enough, maybe they could be more sensitive in their message, maybe they need to ask autistics where the need is greatest. But I still would not throw the baby out with the bathwater. Autism Awareness is a tide that has lifted all of our boats.

However now it is time for a new kind of awareness. The red group has been instrumental in moving us all to a new paradigm for autism, which is to listen first to autistics to understand autism, and and open up policy-making and the seats of power to the neurodiverse. Wearing red is about being an ally to neurodiversity, a growing movement with the beautiful rallying call: “nothing about us without us.” The ND group aims to subvert the old autism narrative, to show that autism is not a scourge, not an epidemic, but rather something about oneself to be embraced. They identify as autistic, and with pride. I applaud this. The true human condition is one of broad and colorful variety, and our arms are wide enough to hold them all.

But I also understand that this message of “ask an autistic about autism” can feel like a tall order to the severe autism advocates, the parents who must be their loved one’s voice. I believe that most autism parents devote their hearts and much energy to helping their child communicate. But sometimes they have not been able to elicit enough information from their autistic child to know what they want, what’s the matter, what they need, are they sick, hurt, depressed… the parents must become detectives, hunting for clues to bring out that precious voice. The parents of the severe (I count myself as one), feel that they must speak for their children. And so, the neurodiversity folks see this as wrong, as something about us without us.

There is terrible animosity on the Internet between the groups, which is really too bad because like it or not we are one huge community, and we are really getting somewhere in terms of public awareness and acceptance. Inclusion in schools, inclusion in the workforce, inclusion in elections, inclusion in culture, all of this is happening! Not fast enough, not broadly enough, but that is the way all social movements go. Love takes time.  You don’t just overturn attitudes in a few years. More work is to be done, now and always.  But let’s do it together.  I agree with the sentiment I’ve seen here and there: “Celebrate autistics, not autism. Honor every experience. Gray areas, People.”

And don’t be a part of the problem. It’s hard enough.

Little Rainbow Autism Tree says, “You can do the thing”

Thursday, March 28, 2019

Albert Camus’ Search For Autism Housing

As an autism mom trying to build Nat’s future, I ought to know by now that it is always darkest before the dawn, that there’s a light at the end of the tunnel. How many times do I have to learn that? The problem is, because this is real life, real people, I am always suffused with the fear that this time the bad stuff is going to last. And then, after a terrible phase of hopelessness and anger, of digging in the dark caves of despair, I stumble upon a tiny idea that is like a crack in the rock. I then test it out with a deluge of emails to my mentors. I latch onto their kind and wise responses and I find the way out. But still, I feel like an idiot, like everyone in the autism community is laughing at me and my credibility is draining away, all because of my eternal optimism.

But maybe I can take heart from the story of King Sisyphus. My viewpoint of Sisyphus is actually informed by Albert Camus’ interpretation, which I want to describe from an excerpt of Camus’ The Myth of Sisyphus that I studied in college, and rediscovered on this NYU website.

The traditional story of Sisyphus is told thus: That Sisyphus was a wily ruler who did not obey the gods and tricked the Underworld into letting him leave Hades when he died. He had apparently made promises to Persephone and was allowed to go back to the world of the living provided he kept his promise. Camus writes, “But when he had seen again the face of this world, enjoyed water and sun, warm stones and the sea, he no longer wanted to go back to the infernal darkness.” So messenger Mercury came along and threw him back into Hades, where he was condemned to push a huge rock up a cliff, only to have it roll back down.

Upon first reading, this fate is the epitome of meaningless. But Camus sees it differently. He views Sisyphus as effectively turning despair on its head by doing the work. He writes, “Sisyphus is [actually] the absurd hero…[For] where would his torture be, indeed, if at every step the hope of succeeding upheld him?” In other words, Camus discovers hope in the act of pushing the rock. It is that hope, and the purity of the work itself that Sisyphus is engaged in, that actually renders him triumphant. For while toiling he is merely a thing of action, of moving-towards. An example of silly human, all-too-human hope. And in feeling the hope of action, in mindlessly, dutifully doing his work of pushing the rock, he has actually beaten the gods. He has found his dignity, which the gods had hoped to remove.

In my darkest moments of dealing with the reality of Nat’s distant future, I try to take hope not only from my mentors, but even from the detractors. The monolith of The Bureaucratic State and Federal Agencies (the gods in Nat’s world) with their oft-time absurd rules, is what stirs me — and hopefully you, the planless autism parent or Self-Advocate — towards the greater good of struggling for your guy/yourself. The ups and downs of the planning, the piecing-together of the various parts of your vision (finding the funding, finding the fellow residents, finding the staff, finding the kindred spirit families, getting them moving, finding the house, the “‘partment,” the farmstead, the intentional community) even the subsequent falling-apart, all of these are your noble work. And like Camus’ version of Sisyphus, it is in that work itself that you, the ever-struggling autism planner, (whether parent, guardian, sibling, or Self-Advocate) are in fact triumphant.

Why triumphant? Because your efforts — though those interlocking task-parts may be conscious — are driven by your unconscious feeling of optimism and love. So it doesn’t actually matter, on some level, what your results are. I mean, of course it matters because no one wants their plan to fail, to see their loved one at the bottom of the cliff next to that stupid boulder. But remember, the human condition guarantees nothing. We are not entitled to that rose garden. The paths of glory lead but to the grave. But I think Camus is so right, that the struggling-towards is noble, if for no other reason, that our labor creates a body of work for you and others to learn from. Your “failed project” gives shape and structure to the chaotic swirling atomic darkness that other families face by showing them What Not to Do. It is this lesson in “Not” that then gives birth to the tiny new epiphany, the creation of What Might Be.

My bottom of the cliff, my foundering in the darkness of that hopeless cave (where I found myself just days ago) will always lead me to that possible way out. Even if the ladder, the climb up, only leads me to fall again at some point, there is that moment of the idea, the new plan informed by my new knowledge of What Not to Do, that also counts. Because in real life — after all, we are not actually in Hades — it may be a very long time between reaching the summit, and falling again. Your guy might find a home for years, decades! There is always the (foolish and possibly brilliant) path upwards, over and over again.

(Nat, 23, with Dana, a good friend from his first of two adult group homes)

 

Thursday, March 21, 2019

When the Fork in the Road is Actually a Knife

When Nat was 10, he was offered a choice in classrooms, where Nat’s alleged functioning level and behavior were the deciding factors. If we chose Door A, Nat would be consigned to a “pragmatics” classroom. Separate, low expectations, ADLs, making change. If we chose Door B, the Director told us, “imagine the opportunities that would open to him.” Academics. Inclusion. Friends. “But,” he said gravely, “he must keep those behaviors under control.”

Oh how that classroom sparkled and seduced me, like the Sirens to Odysseus. So I chose it with great hope and trepidation. But the whole thing was more like Scylla and Charybdis, a rock for Nat to crash upon, a terrible whirlpool that sucked Nat under. And they blamed Nat.

Listen up, folks. It is up to the adults in the room to open those doors. It is up to the grown-ups to buoy the boy. The professionals, the educators must bear the responsibility of teaching, of shepherding him into adulthood.

I hold this advanced society responsible for failing Nat. You, Modern Era, proud Accepter of The Tired and Poor, where is Nat’s Statue of Liberty? You are letting guys like him drown. You offer the classrooms, you offer the funds, and we are grateful, oh so grateful. It’s a lot of money. Oh, how we know that. We are never allowed to forget how much of a strain our kids are on the school system. How much of a burden.  But, we tell each other, It’s better than it used to be because in the Olden Days there were Institutions.

And Nat is one of the lucky ones because he has adulthood residential funding. This means he’ll always have some sort of roof over his head with some sort of caregiver. So that I can die one day and not have to leave him on the street or with some saintly relative. The majority of people with autism and developmental delays are on waiting lists, the bread lines of today. They’re home with aging parents. With siblings who deserve their own life. Guys like Nat spent 18+ years in school and at least learned something, at least climbed towards their individualized goals. And then literally on their 22nd birthday, both Doors A and B are closed to them.

The choices for guys like Nat — with severe autism, intellectual disability, communication disorder, who are lucky enough to have residential funding — are limited to group homes of 5, which can also be Institutions with indifferent staff — or worse. Or you try some sort of Shared Living. You move in with a family or a roommate caregiver and hope for the best. You, most vulnerable of all people, are often not allowed to have cameras for protection. If you get abused, you are not believed — you are an “unreliable reporter.” Your abuser can be rehired at the service provider down the street.

The truly lucky (read: wealthy) ones find their ways into well-run communities, farmsteads, apartments. Private sector. And then their parents live forever.

So here we are. Nat is no longer in his (second) Shared Living arrangement. Another setting that beckoned beautifully but could not support him as he is. So what do we look towards now? Another group home? The low-risk but low-growth option. Door A, of course, in its dead-eyed glory.

I am out of ideas. Where will Nat thrive and be happy? Where will he find growth and opportunity like Door B, but have the safety of Door A? Nat has tried ’em all. Isn’t he lucky?

Actually, yes, he is. He lives on, brave and ready for the next phase. He laughs to himself, he talks joyfully to himself. He goes readily to new things, thank God. Because you know what? In the end it is not what’s behind the door that is full of promise. It is Nat.

Monday, March 18, 2019

There’s No Place Like (Forever) Home in Autism Adulthood

“Live in ‘parment.'”

Back when Nat was transitioning out of school, at the beginning of his adulthood, we were able to learn from him that he wanted to live in an apartment. For a year leading up to his turning 22, I searched for apartments that he could share with a roommate or two, and a live-in caregiver. I took him along. I don’t know which of us was more excited. I figured we’d fund the caregiver through Adult Foster Care (a live-in caregiver who’d get a small tax-free stipend), and the rent through Social Security (SSI). Nat loved the city life he’d always lived, and so we wanted to duplicate this as closely as possible. We worked with a few families, but found we wanted different things: their sons had never lived away from home so they were looking for less independence in their settings. Plus they were country mice, and did not want the city mouse life that Nat did.  Plus I was a little too passionate (pushy) for them.

Since adulthood, from 22 years of age, Nat has moved a lot. By now he’s been in two publicly-funded group homes as well as three different publicly-funded shared living arrangements. I would not say that any of these situations were failures; each ended for good reasons. The first was a shared living-group home hybrid with friends and one new guy. It morphed into a group home when one of the families dropped out. Then this group home became Nat’s residence from 2011-2013. But that one started having trouble with another of the families, who dropped out. This was just before Nat left, in 2015, for a shared living arrangement for two years, in an apartment in the city, which had always been Nat’s preferred location. That shared living experience ended when we discovered Nat’s injuries. We still do not know how the injuries occurred so I do not necessarily hold the shared living responsible. Then from 2016-2018 Nat was in a new group home, which was very well-run. However, state-approved group homes are so risk-averse that they frequently opt for doing less than more. When the opportunity came for Nat to live with two musician friends/teachers, we jumped at it. We took months to prepare. But the providers only knew Nat a certain way and did not imagine he could be much more intense in his needs. They knew it but they didn’t know it-know it.

Nat is living at home again. Our wonderful experiment in shared living did not work out. There were too many issues for the young couple — it was far more of a struggle than the three roommates had bargained for. Nat became seized by a terrible anxiety that lasted for months, which I believe was partly a normal phase for him, and partly due to using an ineffective cocktail of medication.

Things were very raw for a few months while the providers and we worked on supporting Nat (and them) more effectively. But too many factors coincided that made this simply impossible, so we took Nat home. Just two weeks ago, though, we landed on Ativan, a very low dose at bedtime, and Nat has calmed down remarkably. But it was too late to make a difference to his providers, so we moved him home. So far, so good. He is very happy living with us for now, but yesterday I took the opportunity to ask him what he might like “soon.” Nat does not grasp the concept of the future too well in some ways; in other ways it is all he thinks about. His calendar is very important to him; he recites it with us daily and repetitively.

We enjoy this because it is a way to converse with him when he is very focused and motivated. We get a lot of talking out of him when he wants to talk calendar.

He is still very invested in where he lives, of course. So yesterday in the car I asked him about where he’d like to live, giving him choices rather than leaving it open-ended. Open-ended questions elude him because they have no structure. So I paired up a few options and finally got that he wants “parment with friends near the T.” Just love that guy and his valiant persistence to stand up and be counted.

So not much has changed for Nat, even though in some ways, everything has changed, again and again. But he’s rolling with it, and if he is, then I am.

Photo by Laura Senator

Wednesday, February 27, 2019

Listening to an autistic person

Here is my latest post in Psychology Today, about listening to what Nat has to say.

Thursday, January 31, 2019

Closing Time

I didn’t even notice the sign at first, I just pushed the heavy door open and walked up to the cash register to order. Jimmy Owens, the barrista who greets you with “Hihowaya?” pointed to the door, and there it was in black and white. Peet’s in Coolidge Corner would be closing its doors on January 25th. “What? Why?” I sputtered, but I kind of already knew. Just like the Chestnut Hill Peet’s that closed last year, the volume of business in Coolidge Corner Peet’s probably did not justify its operation anymore. Corporate metrics. But although our Peet’s is technically part of the national coffee chain, its quirky scruffiness makes it stand apart from the sheen of corporate America. “Are you going to be okay? Do you have a job?” I asked, not knowing what else to say. Jimmy told me his plans but I was already feeling a darkness descend on us both. 
 
I went to one of my favorite tables to write, but like a lost child I just kept thinking, “Where will I go?” I’ve never felt this way before about a store or restaurant closing. Even when the Coolidge Corner McDonald’s closed, though I felt for the many seniors there who camped out for hours because of the inexpensive coffee, I didn’t feel as bad as I do about Peet’s. There are so many coffee shops in Brookline but to me, none have the quirky, warm, comfortable feel of Peet’s. CC Peet’s is like the nerdy shabby beloved absent-minded-professor of coffee shops, kind of Intelligentsia with a hippie edge.
 
Though there was talk of potential renovations at one time, I was always glad they didn’t go through with it. The tall windows that line its walls do let in huge puddles of water on their ledges — but also the best soft light. And once you wipe them off, those ledges provide extra seating. Often packed, strangers will share their tables with other lone customers. People dance nimbly around each other reaching for the cream and sugar, keeping an eye out for a newly-vacated table. Conversations in all sorts of languages and every emotion rise and fall, punctuated by the frequent screech of a chair being dragged to a table. The cacophony is just part of the ambience.
It is often noisy, but that doesn’t matter. It’s the friendliness of the place that keeps you coming back. Sometimes the staff comps people their drink or at least delivers it right to your table. They know our orders, they know if it’s “for here” or not. Anybody who is anybody in Brookline goes there to make deals, hatch ideas, write their magnum opus. Deals have been made, fortunes lost. Well, maybe not. But fourteen years ago, my writing group originated there, and it was at those square wooden tables that the three of us celebrated landing our book contracts. And there are so many others of us who have now lost their haven, just like with the McDonald’s. The elderly couple who always come in for an espresso; the young moms who must park their tractorlike strollers in the aisles and exert no control over their unruly juicy babies; the woman who keeps her dog loose in the entryway. Where will they all go now?
 
I posted the news in the Brookline Townwide Forum on Facebook and right away had sad emoji after sad emoji and empathic comments. Anger, too. We all looked for someone to blame. “People just camp out with their one coffee, and take up tables.” True. Guilty. Although I try to buy other items when I’m there for longer than an hour, especially since they started selling sandwiches. “It’s the students,” someone scoffed, presumably because they can’t really afford more than one coffee, nor do they have nice places to work. (When in doubt, blame Millennials.) “Can’t wait for another bank,” someone muttered. In fact, there is another place that serves Peet’s, the Capital One Cafe, nearly across the street from the real one, and it is housed in the bank. To me, it is not the same. Too quiet. No real atmosphere. They might as well be serving Starbucks.
 
Sure, there are likely a combination of factors leading to this sad closure. Brookline’s high rents? Tight parking? Lack of tables when customers need them, leading to the exodus to the Capital One? The sign on the door reminds us that there are still two Peet’s in the area: Harvard Square and in the Capital One in downtown Boston. It doesn’t even mention the Capital One right here, I noted smugly.
 
I wrote to Peet’s customer service to find out their side. They had this to say about it:
 
“Peet’s Coffee must keep pace with changing and evolving markets to enable healthy company growth. While it is not an easy decision, regional adjustments to our coffeebar presence is important for effectively managing our resources and continuing our U.S. expansion. That said, Peet’s is committed to the Boston region, having added new locations in recent years, including a coffeebar outside the city in Sudbury this past winter.
 
There may be a silver lining, I’m calling it the Miracle of Newton Centre Peet’s. According to the Globe, Assistant Manager Faye Goldman recently partnered with Central, a restaurant right across the street. (https://www.bostonglobe.com/metro/globelocal/2018/12/28/zocoffeeshop/8WfzSfGcD6nDmG88QEqn4J/story.html) Central is open at 4pm, for the dinner crowd, and so Goldman has opened a cafe there during the daytime hours. So far this looks to be the beginning of a beautiful friendship. Maybe some Peet’s loyalists will strike up a similar partnership with a restaurant or business on Harvard St? I hope so. The Peet’s rumor mill told me that there may be something Peet-y coming to The Arcade. I already have a name for it: For Peet’s Sake.
Monday, January 14, 2019

The (Dis)Comfort Zone

I realized recently that I rarely stray outside my comfort zone. It takes such an effort for me to keep going to classes, for example, or anything at night. Parties on weekends are a supreme effort at times, though I’m usually glad I went. But why is there such an effort behind going out, forward?

Anxiety runs in my family, I believe all of us but Ned suffer from it. Mine comes in waves, where the terrible times make me feel like old wood, about to crack and splinter. I think Nat’s is like this, too. When he was a baby and had some new food in front of him, he said, “Don’t worry hot dogs.” Trying so hard to self-soothe; his poignant efforts still make me swoon with pride and love.

But I don’t allow the same compassion for myself. When my anxiety keeps me inside I feel like a worthless human being. Even though my life’s circumstances allow me to do this, to do nothing, or to do whatever I want, I feel like I should be doing more.

I used to be so different and maybe that was because the boys were still home and I needed to get out of the house. One of Benji’s first sentences was “I go mee-in,” and then he’d hide, imitating his suddenly missing Mommy. That guy has always been able to just nail it, even when he was only two.

This was back when I was on our town’s School Committee and I was very politically active. My whole life seemed to center around my boys and school, and making the school system work for them. There were no autism classrooms at all. There was bullying going on. There were few options for boys who were not into sports. So I never questioned my schedule’s demands, and I was really fulfilled from all that.

Actually my life centered around writing as well — it has since I was 21. I’ve always had a writing progress and mission in my adult life. So when I was not doing politics and mothering — or actually, right when I was, because I’d take out my laptop and write anytime, any place — I was writing. The writing was about autism, parenting, education, so it was all the same loop. But when my first book came out, there was a break in my sense of self. I couldn’t just keep my writing inside my laptop; it was out there now. I started traveling a lot, giving talks and speeches. But I had also started pulling inward more, closing off my more public self. I found bellydance at this time — age 43 — as well as mountain biking.

I guess riding my bike was the first time I ever really enjoyed my own company. The time spent alone, just pushing myself around and up hills left little room in my body for thought. So I was just kind of being, just breathing in my body with no coherent thoughts except, “stupid cars.” I was discovering a new skill as well as the supreme happiness of meditation. Peace. But there was anxiety involved, because the only way to mountain bike is to throw yourself onto the trails, down the hills, over the roots and rocks. Push past or through the fear.

Dance was a starkly different kind of being inside myself. Many bellydancers don’t do it alone, they go to haflas and dance together, they go to the Arab clubs and take classes with each other. And of course they perform. I on the other hand have only performed twice, and both were semi-private recital-type events. And a huge deal for me. Each time I thought about it, I’d want to cancel. And yet I am entranced by performing, by dancing a choreography in front of people, in a beautiful costume. I just don’t know what it takes to let go that way, though. Even when I performed, I was following a script, and there was very little organic flow in it, just moves strung together to music. I mean, I know I looked good and performed well technically, but the performance was not what I want it to be.

I want to be like my teacher Natassia, who is half my age and has absorbed the dance into her skin, her heart and soul. She works so hard, but when she dances she makes it look — not easy, but happy and alive. Showing your happiness and contentment while doing that incredibly difficult movement is the essence of great dance.

She told us yesterday about the importance of understanding the folklore, too, the culture, behind the music and the dance. How important it is to greet the audience first, not showcasing your skills at all but moving around the room excitedly. Then, certain rhythms (e.g., Saiidi, Khaleegi, Chiftetelli) in the music signal certain types of moves, determined by where they have come from. She was transported by her own lesson, she looked like she had tears in her eyes just thinking of all the dancers who have come before her. Everyone in that class felt what she was feeling, and wanted to know what she knew. She makes you want to sink right into those ancient sandy lands and watch from the ground, the dancers from way back. She wants us to feel awed by these intricate moves and melodies, and to know which rhythms indicate which style — humbled but also empowered by this knowledge, to let it inform and color our dance. For we are linked to those people by our love of the dance. She urges you to shed your American shell and try out the shape of a very different place, and time. But she gives you that form with such love that you are not really afraid to try it on.

So those classes are the perfect combination of pushing outwards, of new comfort zone boundaries, with a cushioning of support and even love. But still I feel a small discomfiture when it’s time to go, and I want to understand why, what is keeping me from simply flying off to be part of that world? Maybe there is always a little bit of fear that lights the fire of pleasure? Maybe we need that spark of anxiety to awaken our souls to hunger for the new, and take it in?

Perhaps a pinch of anxiety is what propels us forward, but too much of it weights us down and puts us in a tailspin. So for now, when I imagine performing there’s just too much anxiety and I can’t plunge in.  Just getting out is good. I do wish, though, that I could get to Nat’s attitude of “It’s a different, that’s okay.” Although he doesn’t quite believe it, he works towards that, and often he succeeds. He’s probably out of his comfort zone almost every moment of his life, and yet manages to move forward, and to shine, dancing in the light whenever he can, pushing through the forest, and learning new skills and joys.

Wednesday, January 9, 2019

Connecting is everything

I talked about you today. I was thinking about our new agreement, that we follow the schedules carefully, use the timer, and stay consistent. We didn’t make this a formal agreement, of course, it was one suggested by Miyabe and Elaine, and then underlined by your insistence to keep the world from becoming chaos.

I’ve always known you wanted that, but it was my belief back then that we had to make you flexible, that we wanted to be able to be our impulsive selves, to be a family of five, and not just three. I wanted your brothers lives and rights to be as strong and vital as yours.

I also learned a long time ago that I had to stay on your side. Not like staying on your side as opposed to someone else, but stay with you, lay aside all of my needs other than the one to connect with you. It’s more than a need, though; it is my job. The most important thing in my world is my family and that includes you.

Today I thought more about what staying on your side is. I found myself looking back over three years, back to the time when you were hurt and we didn’t know how or why. We took you back home with us. I am so glad we did that because I think that was exactly what you needed. Your anxiety has been through the roof since then and today I realized that it probably is your trauma speaking. You never had a chance to really work through and make sense of the broken ribs, the tremendous pain your were in. The fear of whoever did that to you. So of course wouldn’t those emotions and burdens stay with you? Doesn’t it make sense that anxiety propels you skyward, doesn’t let you go, keeps you barely tethered to the rest of us?

So our agreement is that you stay with us all weekend, every weekend. It’s what you like best. We were trying, before, to get you flexible about where you’d be on the weekend but you let us know that this kind of uncertainty was a trigger.

Now, and back in my best parenting moments, I need to be completely present for you. I need to boil down to the very essence of mothering. I feel like I have to inhabit your soul for a little bit to give you the connection you need. You’ve always said, “you” when you mean “I.” It’s always been hugely complicated for you, being Other with people, especially me. I don’t think you want that feeling at all. That alien floatiness.

And so, each weekend, I need to get myself to the point where I am no longer afraid or bored or resentful or distracted. I am just with you, and it is very small and quiet but it is everything. Because you feel it when I’m with you. When we’re like that I can simply rest next to you and just be, and watch you just be, too. You feel that oneness and it calms you and you have touched the ground again. Staying on your sides means we ground each other, and then we can face anything.

Tuesday, January 8, 2019

From Tribal Fusion Bellydance to Tolstoy

I’ve always been fascinated by extreme opposites working together at the same time. I love the way classical, orderly Enlightenment Europe morphed into its opposite, stormy, histrionic Romanticism. In philosophy, music, poetry, and painting. Late eighteenth century rationalism caves into moody sturm und drang of the early nineteenth century. The symmetry of Mozart into the surprises of Beethoven. Voltaire, Rousseau and then Hegel to Marx.

Whew. That was a long time ago, in history and in my life. I thought those interests of mine had gone underground in the last few decades of my life, disappearing into autism advocacy and public policy, mountain biking, and bellydance. For me, one opposite pursuit slowly bleeds into the distant other. Until I recently realized the connections my subconscious makes between one and the others, I hadn’t understood the obsession I have with Datura online Tribal Fusion bellydance classes. Tribal Fusion is an amalgam of two streams of bellydance: American Tribal and Classic Raqs Sharqi (Dance of the East, or what we normally think of as bellydance). American Tribal Style (ATS) originated in San Francisco in the 1970’s — hippie-like and organic, round and flowing — a completely new branch of bellydance that incorporates a lot of ancient folksy styles and traditions along with a whole new vibe of relaxed group dance, following a leader.

Fusion is a spinoff of ATS in that it adds in more of the Golden Age cabaret style of bellydance combined with a kind of steampunk/new wave thing.

Tribal Fusion is earthy-metallic. Black lace and pewter. Big ruffled skirts with black and white striped tights showing through. It is not sparkly and pink. There is a return to the good old Lebanese-style relevé, but also the traditional flat-footed country Saiidi style.

I can’t understand why I am attracted to Fusion but I guess every passion evolves over time, and I’ve been bellydancing for thirteen years. I sew sparkly girly Egyptian-style costumes, but these days I dance Tribal Fusion.

Lately I’ve been dancing for an hour or more to this stuff. Tired, aching, but in the zone. Arms almost straight out, shoulder height, bellyrolls up-to-down, down-to-up, body figure 8’s, and 3/4 shimmies on relevé. When you’re doing Fusion it sometimes looks like your body is a Hydra, composed of many snakes moving in all sorts of directions. You simply boil with movement.

My body is 56 years old and I feel very proud of the moves I can make these days. Just today I mastered belly flutters and 3/4 shimmy Arabic style. Hips shaking at one speed, torso rolling at another, feet on tip-toe stepping delicately one behind the other, arms waving as gracefully as possible.

Why am I going on and on about this? Because dancing it is not even enough of an outlet for what I’m feeling. And I’m glad that I can finally kvetch out even this erratic blog post, because all I have been able to do lately is dance and then stare at my screen. And write about autism? I can’t, I just can’t. More on that later. (I hope)

Dance for me is the opposite extreme of me as autism advocate. No thinking involved. It is just movement born of brain energy pushed into one area of the body and then another. The music doesn’t even make sense (to me, a North American) the way Western music does. The ribbony melodies, the exotic instruments, the trance-producing drumming — they are the antitheses of writing about autism. Which is the antithesis of writing my Master’s thesis which was, of course, about one particular symbol of Rational-to-Romantic thought, Leo Tolstoy.

And yet you will find that my website’s tagline is a quote from Tolstoy, turned on its head.

But — that quote was Tolstoy during his Rational phase, before he became a mystic.

I wonder what Tolstoy would have made of bellydance?

Monday, December 24, 2018

Timer heals all things

When Nat was five he started his life at the May School in Arlington. The May is a behavioral school, dedicated to positive reinforcement such as earning tokens towards desirables, taking small incremental steps towards goals, and scrupulous attention to “behaviors.” The May people jumped right in to getting Nat’s attention, which is one of the first lessons taught in behavioral schools. I was very heartened to see Nat learning how to pay attention to people.

Nat’s first May teacher was joyful and kind. She focused her bright eyes on Nat and got him to listen to her sometimes. At the May Nat learned the concept of the classroom, of paying attention to the teacher, and doing what she said to do. That was huge.

Nat did well with learning the skills of the school life, because school skills work well with step-by-step, systematic reward-based approaches. But about six months in, the May began its Home-Based program, where we were to be trained in using these same techniques on Nat at home. That was when we kind of lost the thread. Teaching play skills in particular stymied me. “Put doll in car.” “Yayy, good job, Nat!  Now, Move car.” “Yayyy! Good job! Car says “vroom.” And so on. I saw that Nat could indeed learn how to look like a boy at play but we could not make him see the point of playing this way. The scales fell from my eyes and I began to sour a little on the May’s approach. We were only giving him forms to follow, structures, systems — but no joy. It was all too robotic. And besides, Nat’s joy was and still is found within his own mind. It seemed false, and missing the forest for the trees. I became skeptical of the whole structure-system-reward approach and told myself that Nat did just fine with my style and was learning flexibility. Over the years we have had our difficult phases with Nat, where we wring our hands and try to figure out how to help ease his anxiety. We look for solutions, we ask doctors, we adjust medication. But we don’t use timers and intricate schedules, that’s just not how we live.

Enter Elaine and Miyabe, Nat’s new Shared Living Providers. Elaine is an autism specialist, a transition-vocational special educator. And Miyabe, her wife, is one of the most brilliant minds I have ever met, and is also highly organized and intensely into structure.  When we first began discussing the possibility of Nat living with them, we made sure that they understood the full range of Nat’s anxiety (or “behaviors”). The four of us took a few years considering whether Shared Living with Nat would work. They had not experienced Nat having a full-blown anxiety episode, but they assured us that they could handle it, mostly because they would structure their home environment so that he would not feel too anxious to begin with. Before Nat even moved in, they had created a notebook with pages of brief instructions about what to do and how he can do it, such as a page on Morning Routines, or What to do in the Afternoon for Fun. He had a big whiteboard in his room for his weekly calendar, rules printed here and there, and labels on things like the shampoo bottles. All to head off anxiety at the pass.

I respected all of this, but deep in my heart I was afraid they’d still encounter terrible times of Nat’s anxiety. Of course we had not kept up with the behavioral techniques the May tried to teach us years ago. I’m not organized that way. I hate planning. I hate schedules. It is very difficult to create a schedule for a Saturday. If you try to plan, what about if something else comes up? Then he’s upset about the other thing not happening.

But once Elaine and Miyabe started living with Nat and implementing schedules, and Ned and I continued not to, we all started to run into trouble. Nat was having terrible episodes of anxiety where he’d be slapping his head and screaming. Elaine and Miyabe were very stressed out. But they were convinced that the outbursts were about inconsistency in Nat’s life — meaning when he was with us, because we were not adhering to calendars and schedules. Elaine and Miyabe, on the other hand, were using timers and writing it down, even for things like, “15 minutes until leave for the Y.”  But we were not, that’s just not how I roll. I continued to tell them that Nat needed a medication adjustment — true — and also that he was always anxious in the winter. Plus he had only just moved into their apartment in September.

Finally things got really bad. We asked the doctor to increase Nat’s Gabapentin. But Miyabe felt there was something missing. Why couldn’t we just try it a little? Couldn’t we try to stick to the calendars and schedules rigorously, to go over them the same time of day and week with Nat every time, even to use the timer if possible for transitions? Maybe — just maybe — if there was consistency across his life, he’d be less anxious. I took the timer and said I would try. But deep down I worried that I wouldn’t be able to, that it just doesn’t work. Or that Nat would be skeptical (why is Mom suddenly using a timer?) and he’d resist.

I was wrong.

Because I really want Nat’s new living situation to work, I gave it an honest shot, using the timer the first chance I got once he was home visiting us. I heard Miyabe in my head say, “So yah you turn the dial to 15 minutes and then in 15 minutes you really have to do the thing you said you’d do.” I tried it. In 15 minutes I would get ready to go food shopping with him — something like that. I went over to my puzzle and worked on it and then suddenly, “dingggggg.” I had to stop. I was surprised how short 15 minutes was. But I stopped immediately and Nat watched as I got my stuff together. Out we went.

I won’t tell you that all the anxiety simply melted away. But as Nat’s medication increase took effect, and as Nat began to see that we were indeed using the timer for things we used to just kind of get to when we were good and ready, he softened up. And I found I was able to create schedules just breaking up our normal unconscious routines. I could set the timer for an hour until pills. An hour until ice cream. Do Facebook for 5 minutes. As long as the timer was ticking and the schedule said something, and we complied with our rules, Nat was content. Ultimately, he realized we were serious. He realized he could trust us.

And that trust bred an ease within him, a reconnecting between us. Paradoxically, the robot-like approach of first-then-and now this, and then reward that we learned all those years ago at the May has led to a new sense of organization and purpose in our life together, a heightened awareness on my part of Nat as a person with needs, rather than a problem that needs maintenance. Again I learn he is not mysterious and difficult. I just need to use these simple tools to keep myself organized, and then he responds with happiness. And though it’s a little more work for me to remember to sit down and write up a day of tiny events and commit to the timer in between, the relief we both feel makes it immeasurably worth it.

 

 

Wednesday, December 19, 2018

Motherhood OCD

About 25 years ago, I suffered from acute Obsessive-Compulsive Disorder. It took the form of going back and checking. Really ugly stuff, I’m not going to describe it here. Until I had a very wise therapist who really understood — that, combined with Prozac, and the day came where I felt the tormented tickle of “you better turn around and look,” yet I walked on.

Moving forward is particularly difficult for me because I often still dip into obsessive-compulsive disorder. Now it is not the way it was back then, it is more of an idling, stalling engine. It stays put, rather than whipping me backwards. In other words, it is bearable. But that, combined with my sharp and heavy mood swings, make it a challenge to see my way out of the chaos that is my life. I hear things on two levels, all the time. I hear the meaning the person is trying to convey, while I hear all the lifelong messages in my own mind — emotional clouding of the picture, checking and re-checking the words.

This condition is worst when it comes to Nat. I have conversations about Nat and I’m parsing the intended message, right along with, “Wait a minute, is this message I’m hearing okay? What did I do, is this my fault? Did I screw something up, or did they?” Right away it’s either-or, right away I’m defensive and really it’s all because of fear. I get afraid that my whole world is going to collapse — usually in terms of Nat. I go right to “okay, a bad thing is happening, just like always, what did I miss, what should I do now?” It is so hard to sit and understand, to sort out the actual important message that I’m supposed to hear. I can do it now, with great effort. And my husband Ned’s cool water, his ability to stay clear.

My panic about how the world is treating Nat — and by Nat, maybe I mean me? — is ingrained, layered into my skin, muscle, and blood. Like any new mother, I held him so close because that was my job, but unlike many non-autism mothers, I never let go. I couldn’t. And so my own development took a turn as a young woman because I had a baby that no one understood. My child has struggled to learn, to grow up, and to move away from me but I have been SO afraid to let that happen. So neither of us has grown completely in that sense. I’m not saying I was right to be this way. I’m saying I can barely help it. You could say it’s a co-dependent thing Nat and I have. Even when he’s pushing me away with man hands, I let him, but I feel my stupid veins stretching right back out towards him, looking to reconnect.

Having a child no one gets is probably the most elemental scary thing that can happen to you as an adult. It’s no coincidence that my OCD began when Nat was a toddler. You have this fragile, beautiful innocent little being in your care, you seeded him, nurtured him inside your own body. You made him. And now he’s kind of being rejected by the world. Well, that’s how it felt to me, I think. It’s a Refrigerator World, not a Refrigerator Mom. The Mom is the opposite of the Refrigerator, she’s a hot oven that has no thermostat.

Every doctor had a theory, and when it didn’t apply, they shrugged. Every school had a dogma, and when Nat continued to defy their ethos, they kicked him out or they held on but their anxiety was transmitted to me. Now I don’t even expect people to understand Nat. My wounds for him are just weakly scarred over, lumpy and prone to ripping open again. Even when I have evidence that people do understand and care deeply, there’s a part of me that remains unconvinced, the OCD part. I never have had the feeling of sweet, deep rest. I have never been able to let go of him entirely.

It is not healthy for either of us, each being so tangled up in You.

People smile at this and say, “well, sure, you’re the mother.” But I don’t think they get how it actually feels, to be the one and only for someone you love with the force of a hurricane, an earthquake, a tornado, a shark attack. So when he’s out of my sight, I am always always wondering — will he be safe?

Am I consigned to always be dealing with Nat this way? How do I heal? How do any of us heal the ravages wrought from ignorance. My rage at the stupid ignorant world pours down on all of you and then it’s all rained out. Then, out of nowhere, I’m bizarrely hopeful again. Flying by the seat of my moods.

And so with Nat, I go in a loop. It’s relationship OCD.

Will I ever be able to walk on, to believe in his wellbeing, without looking back?

Tuesday, November 27, 2018

The Insidious and Omnipresent Infantilization of Disabled Adults

Here is my latest post for the Psychology Today blog, about how common it is to infantilize people with disabilities; how I recognized this attitude in myself. An experience with MUSE was, as it so often is, my muse for the piece.

Monday, November 5, 2018

CNN’s Article on Nat and Voting

CNN just published a print story of the voting booklet that I made for Nat for this election. I tried to figure out just what he would need to understand, in order to vote like a responsible citizen. I did guide him to consider being a Democrat, the same as I do for my other two sons, because it is my responsibility as their mother to make sure the actions they take have only a positive impact on their lives. But I have created a more general, more neutral format of the booklet that I will share here and hopefully others with developmental and cognitive disabilities will use it and be able to vote:  Voting-Public Version
Also, here is a nonpartisan guide to teaching voting, put out by 3L Place, a service provider in Massachusetts that is all cutting-edge, holistic, intellectually stimulating in its approach to people with developmental disabilities.
Use, enjoy, spread the word, and vote!

Monday, October 29, 2018

Vote Blue, Your Country’s Lifeblood is At Stake

On this ugly rainy day I find my mind turning to the potentially ugly future. Over the years that I’ve written in my blog I have made no secret of the fact that I’m both Jewish and a Liberal Democrat. I am in mourning for the Jews that were shot yesterday in Pittsburgh. Two of them were developmentally disabled. The others were also innocent human beings.

I live in Massachusetts, I believe in publicly funded social programs like Welfare, supports for the disabled, elderly, poor, and addicted. I believe in funding public education and special education and bilingual education. I believe in the spectrum of human gender, of human neurology, of race, of the human condition. I believe that the climate is shifting to very dangerous patterns and that it is because of our abuse of the earth, its environment, and the atmosphere. I believe in the freedom of religion and the freedom from religion. I believe in laws that restrict capital enterprise because the wealthy and competitive need limits. I believe in free press that does due journalistic diligence. They must courageously present fact. (Like NPR, who always has the other side on to express their opinion and viewpoint.) I believe in tougher gun laws and an active campaign to get rid of guns. I believe in the rights of all people to vote and live their lives safely and happily. No one in this abundant earth should be hungry and if they are, the other countries should be aiding them. I’m an FDR Liberal, a JFK Liberal. I, too, Have a Dream, and that is a country that is compassionate and helpful to others.

Got it? Here’s what else: I believe in history. If you count yourself as an educated person, you have to look at history to understand that the American government we are living with right now is a dangerous, pre-fascist one. The hallmarks of dictatorship are all there in the Trump and GOP-led Congress. Separating — literally — groups by their skin color and religious beliefs or nation, and then calling them names like “rapists,” “animals,” people from “shithole countries,” “criminals,” and  “globalists” — this is engaging in the time-dishonored tradition of dictators. Trump encourages violence against different groups, again and again.  That is how Holocausts begin.  It can happen here. Make no mistake. Right now, it is the weak and careless Republicans in Congress who are not defending our country’s philosophy of Life, “Liberty, and the Pursuit of Happiness, Justice and Liberty for All. E Pluribus Unum. This current administration has done the opposite and believes the opposite of everything I believe in, that I mentioned above, in my second paragraph.

In the name of my sons, the future generations, I am voting for a healthier planet and the lawmakers who will stand for that. I am voting for a Congress that protects voting rights and does not support far right Supreme Court justices who trash them. I am voting for a Congress that supports Medicaid and Social Security programs because those give my autistic son an adult life, outside of my home. This GOP Congress wants to slash those programs to pay for a tax cut they gave to the wealthiest in the country. I am voting for a Congress that supports compassion, fairness, a social contract. Protection of the most vulnerable. The Welfare State. The MLK Dream.

Of course you can disagree. If you can civilly point out places where I’m wrong, go for it. I’ll read it. But if you’re nasty, I won’t print it. (My blog, my decisions.) If you’re offended, don’t read me. Trump’s is a Hitlerian-style regime. In the memory of the Tree of Life Eight, the Orlando nightclub victims, the Newtown children, the Parkland students, and the all the rest, I dedicate my heart, passion, and resources to the Democrats.

 

Thursday, October 25, 2018

Autumn Chill

Fall is the empty nest time of year; even the trees must deal with the fact of their seeds dropping off to start new lives. And I am an old mother, dealing with my children’s departure for years. My son Nat has lived away from us for eleven years. But this particular autumn I find myself unable to shake my sadness, the feeling that there has been a permanent shift, and that I’m not ready for it.

Like many families, Nat, who is my oldest moved into a residential school at 17. Unlike many families, this was a school for students with severe autism.  The move out of the home is so dreaded by most autism families that it even has a special term: going residential. For right or wrong, sending your autistic kid away feels like you failed him somehow.

For years I fought this feeling. I told myself that Nat “had to go.” He was out of control. He acted wild, like a stranger, he reminded me of the Warner Brothers Tasmanian Devil, a whirlwind of scary biting and terror. I’m sorry, but this is how I remember it when I think back. That, and I wonder if his brothers weathered it okay, and I cling to the memory of how easily he left us, how quickly he was absorbed into that group home community.  “So he must have needed a different environment,” people reason. They believe this, it is easier for them to decide that because Nat’s difficult behavior subsided, it means that he found peace in the strict schedule of the residence, comfort in the consistency and similarity of school/home routines.

But now that Nat is an adult, I experience him differently. He has learned, over time, to stretch out the moments between the spark and his response. There is space between us now, where I can now see how he is feeling, and not simply that he is feeling.  He has developed a wisdom and the strength to pull back and let me see him. He has learned how to be vulnerable and dwell in that particular discomfort that used to cause him to erupt.  When did this happen? Why did this happen?

I look back and I see the memories of my time with Nat, and the conclusions I made back then. One particular memory that I make myself look at is the night I cried out, “If you keep hitting people you won’t be able to live here.” To which (I think) he answered, “you be good.” Even if he did not answer that way, what I remember is that he took it in. It didn’t change anything; he went on lashing out at us without warning, until finally my husband and I decided we needed him to move out.

Was that the moment when he suddenly realized he was not a part of me, that Mommy was not Forever, and that he might find himself alone?  Over the years it has broken my heart to think, yes, maybe. I did the worst thing a mother can do: I threatened abandonment.

It is not just with Nat. I remember when my middle son, Max, wanted to sit on my lap, which was occupied by his infant baby brother Ben. And I told him, “You have to be a big boy now.”  Snap.

I hate the cruelty there, those moments of being only human, because I believe with all my heart that my children deserve better than that.

But lately I wonder. Do they also need to see the grotesquely flawed parent? Is it possible that children must somehow experience that break with their parent, in order to separate later in life? Max is now 26 and living in New York, working in the film industry. He is and always was a peaceful, accepting soul. When he’s around I feel a sense of comfort and easy joy. So it must be that his separation was healthy.

So there are times when I really worry that Nat’s separation was born of that horrible threat I made. Or maybe it occurred when he went residential. In those dark times, like during the rapidly shortening autumn days, I would see Nat’s independence as a sad thing, something he doesn’t quite understand, something that might actually feel like a punishment.

And indeed, he anxiously insists on staying at our home on the weekends, even now that he’s living with two wonderful young women who love him like a brother. I have no doubt that he adores Elaine and Miyabe right back; and yet he must stay with us on the weekends.

I’m leaving out something really important here. Two years ago he came back home to live with us for nine months. Nine months — the time of complete human gestation. You are born after nine months.  In coming back home to live, did he experience some kind of rebirth? Some kind of very old healing? He certainly healed on a physical level — the reason we took him home was that he showed up one weekend with mysteriously broken ribs. I took him back and got to know him all over again. And he me.

He’s settled happily with Elaine and Miyabe. But there is still that insistence to come home on the weekends. And at the same time, though, there is this new breath he takes when he is becoming upset, a short, flappy moment where he is able to look at me and wait for me to understand what’s wrong. His faith in me makes me calm and confident and then I actually do understand. And then we work it out.

Last week, when we were creating his calendar with Elaine and Miyabe, we floated it out to him that he was not going to sleep at home Saturday night. He listened intently. I then offered that the week after he would sleep at home the entire weekend. “Okay,” he said.

“Wow, he was so chill,” exclaimed Miyabe in that Millennial way of hers. He certainly was. And I’m wondering about new Chill Nat. Or is it old Chill Nat, who went residential calmly — successfully, at the age of 17? Maybe that really was good for him. Maybe my stupid moment of threatening him was not the fateful moment of separation. Did his time away teach him that taking space was really okay, not a punishment? For in doing so I believe he learned to take a moment — a chill moment — and work it out with us. He learned that he can come back anytime, and so he doesn’t have to.

And a new possibility occurs to me, a phoenix risen from the ashes of all my doubt. The smokey plume of hope, that this empty nest of mine is never completely empty. He can always come home again. Because now Nat and I trust each other.

 

 

 

 

 

Wednesday, September 5, 2018

Inclusion and our Social Contract

“As soon as any man says of the affairs of the State “What does it matter to me?” the State may be given up for lost.”
Jean-Jacques Rousseau, The Social Contract
“There is nothing better than the encouragement of a good friend.”

My children have all crossed the threshold into adulthood. My youngest son Ben is settling deeply into a happy life as an art student in Savannah. He is happier than I have ever seen him, living according to his goals and talents. His art is a wild and wonderful combination of wisdom and wit way beyond his twenty years. My middle son Max is a First Assistant Cameraman living in Brooklyn. He has a beautiful life rich in friends, interesting gigs like feature films and fashion shoots, and the freedom to explore his fullest potential.

My oldest son Nat has, at long last, arrived at his most exquisite opportunity: Full Inclusion in society. Being able to work, play, rest, grow. As a man with autism, this takes a special combintion of drive, patience, and support. Nat has the first two. The support he needs comes from his family and his community. And our government. This support enables his participation in a full life.

You cannot have a full life unless you are included among others in the world. You cannot be included if you do not have the tools to allow you to function among others.

People with disabilities need tools to manage in society. Ramps, canes, service dogs, talking crosswalk signals are some. Other tools are support staff to help someone who has social and sensory, and maybe intellectual impairments navigate complicated systems, be they social, geographical, financial, or otherwise.

These supports are not cheap. But they are necessary or you have huge populations who cannot live safely, work, or learn effectively. They wind up on the street, in expensive dead-end institutions, or in prison. Or sitting in their parents’ homes staring at a television set until their parents are too old to take care of them. Then, it’s onto some state-funded group home, if they’re lucky.

A compassionate and supportive society and government are not new concepts. Jean Jacques Rousseau coined the term “The Social Contract” in the mid-eighteenth century. According to the Stanford Encyclopedia of Philosophy, “The concern that dominates Rousseau’s work is to find a way of preserving human freedom in a world where human beings are increasingly dependent on one another for the satisfaction of their needs.”

Our country was founded on this Enlightenment philosophy among others. Our government grew out of finding a balance between a government large enough to protect vulnerable individuals, and a government small enough to protect individualism. John Adams, Thomas Jefferson, Benjamin Franklin — all of them were steeped in it.

Even though our government began with these beautiful, powerful, humane ideals, we have always needed to work to maintain them. We need accurate information, we need to vote, we need to push back on those who would take these away.

The Current Political Climate Threatens Inclusion

People with disabilities and their loved ones need to work even harder to access the fullness of life. That is a difficult reality, but it is a fact. For example, if you find there are endless waiting lists for your adult developmentally disabled loved one, you must press for change at the state level. Or, for example, access to healthcare, regardless of pre-existing conditions, is necessary for the health of people with mental, physical, intellectual, social, sensory, or behavioral challenges. A least restrictive environment during ones school years, one that is free and appropriately supported, is another tool people with disabilities need.

But to have these supports, you must make the effort with your lawmakers, even though it is hard. Find out if your senators and representatives support Medicaid and advocate if they don’t. Make appointments to visit their offices in your state house. If you can’t do that, write a letter, send an email, make a phone call. Get your fellow families to do the same. If you throw up your hands and let people tell you that there’s not enough money for this, for healthcare, for public special education, for job coaches, for well-trained housing staff, you must point out to them that we have a gigantic deficit not because of our public support programs and entitlements but because the current President and Republican-controlled Congress voted last fall for tax cuts for the wealthiest corporations in the country. Not tax cuts for the middle class or the working poor. According to the Newsweek article linked to above, “a new analysis of all Fortune 500 companies found only 4.3 percent of workers will receive a one-time bonus or wage increase tied to the business tax cuts, while businesses received nine times more in cuts than what they passed on to their workers,” Think about that for a moment, and then decide if this is fair. You might get a wage increase, a bonus, or a tax rebate this coming year. But what do the wealthiest get? Nine times more.

If politicians or fellow citizens tell you, “we have to tighten our belts, and slim down our government agencies,” they are overlooking the fact that the wealthiest, the corporations, and indeed many of these politicians themselves, have done no such thing. No, they have received huge increases in their income. They have bloated the military budget beyond good sense. That’s where the money has gone. Not to food stamps or healthcare for the poor and disabled.

Do not let anyone make you feel guilty for advocating for supports for your developmentally disabled loved one. Don’t let your town governments blame special education for being so expensive; ask what they spend on sports and all the other academic and extracurricular programs that special needs students often do not participate in. My own town used to do this, and it was common statewide to blame the out-of-district placements like my son Nat’s, when the reality was, my school system refused to create an appropriately structured classroom for Nat. If they’d hired just one specially trained autism teacher for $50,000 and set aside a small room for perhaps a class of only 4 or 5 as challenging as Nat, they would still have spent 25% of what they would spend if each of those students were placed in private autism schools like Nat’s.

While I’m glad that my school system did send Nat to a great private autism school, I lament the fact that he was not included in his town until he joined Special Olympics, until our town strengthened their Parks and Rec program to offer special programs for guys like Nat that were — once again, con brio — funded with public money. Now he has friends but during the school years he had very few. One guy at age 15, another one at 17. Now, dozens. (You will see why further down, below.)

It is public program supports that allow guys like Nat to live as fully and independently as possible — not on the street, not in a psychiatric facility, not in prison. He can put to use his publicly funded very comprehensive education. He can now work, buy things, and generally participate in the economic health of our economy.  He can play sports and compete statewide, he can be the frontman in his rock band. He can volunteer for Meals on Wheels during his week.

But we need the funding and the advocacy to make it happen. And there is no other answer, other than the simple but difficult one: we need to believe in public programs, we need never to stagnate, we need to make sure that in taking care of our more vulnerable citizens, we are open-minded and creative.

What’s more, we need to demand that our country pays its fair share towards this end. It’s the new Social Contract, where society provides the tools for people with disabilities to live out in the light. It’s not a handout. It’s a hand upward, a lifting-towards life. A full life, liberty, and the pursuit of happiness.

Tuesday, July 24, 2018

Hodor is My Hero

Here is my latest Psychology Today column, a mother’s take on Game of Thrones‘ portrayal of disability and why Hodor is my hero.

Friday, July 13, 2018

He’s with the band

They showed up one evening, at my friend Eswar’s house. He was hosting a bunch of musicians that night, an impromptu concert. He himself was going to play the violin with his son. That in in itself was a good enough reason for us to be there, to see Sri — whom we’d known since he was little, who had befriended Nat because Nat tickled him – play the violin with his dad. Sri has autism, like Nat. This musical ability blew my mind.

I didn’t even know the two women – clearly they were the teachers — were together. Elaine, with a violin tucked under her chin. I knew that she had been giving Sri lessons. The other young woman there also had long black hair, playing on the guitar. Later I learned her name was Miyabe. She seemed to always have a smile on her face. Even so, I didn’t approach her, I felt shy, in awe. They were so cool. All of them, in that band kind of way. But I knew I would need to talk to Elaine because of what she’d done: she’d taught most of the other musicians, all of them with disabilities that were fairly profound in one way or another, how to make real music. And I wanted to ask if Nat could maybe learn an instrument.

To me the other students were like gods because they were in a band, actually playing instruments. All having so much fun. How did this happen for all of them? I guessed that this is what you could have when you were higher-functioning autistic. You could have an awareness that music comes from somewhere, and that you could actually make it happen with your own hands.

Maybe Nat knew that. But I didn’t think he cared. That’s always been one of the biggest problems of his autism: he didn’t seem to realize that caring, taking an interest, making that effort to understand something or someone, would actually benefit him. As a toddler the behaviorist taught him how to put a doll in a car and push the car around making car noises. Vroom, vroom. But she could not teach him how to enjoy it. He’d dutifully push the car and then stop and wait for the next command.

Maybe he does care but doesn’t know how to show it. Maybe he doesn’t care and that’s okay. I guess what I should say is, I care. I want him to be able to interact with other people and not be alone so much.

Nat sat through the concert, and seemed very interested in all that was happening. And when it was over he stood up with the musicians while the parents were taking pictures, as if he were one of them. And just like that, he was. When I talked to Elaine it was as if she already assumed he was going to be playing with them; I didn’t even really have to ask. I am used to people letting Nat in, tolerating him. I am used to seeing him included, but always as the least able participant. So what, right? Who’s comparing? It’s not a competition. Blah blah blah.

I never in a million years imagined that there would be people — other than family — who would want him for what he himself could do. Who saw his particular contribution, his unique self, as being something they actually needed and wanted.

It turned out that Nat could sing. I think that Elaine and Miyabe were almost as happy as I was about it. I say almost because I don’t actually know if it’s possible for anyone to love Nat more than I do, and so how could anyone else be as thrilled about this accomplishment as I was? And yet with Elaine and Miyabe — and soon I realized Brett, the drum teacher was just like them – I wonder. Because the more I saw them with Nat, the more I had this feeling that they were taking a kind of “ownership” of Nat.

Not that any human being can own another. What I mean is they felt a certain proprietary thing for Nat. Not protective. Not patronizing. But a pride and a desire to be with him and bask in his Nat-ness. As equals. Aside from Ned, the only other person who has projected this sense of ownership of Nat is Laura, my sister, who actually attended his birth.

Suddenly people who were not his family and who were not being paid to do so wanted to be with Nat. Not because it was their job. Nope. Just to hang. Brett came a few times for walks with him to get JP Licks ice cream. Miyabe would ask if she could hang out with him, go running around the pond with him. She and Elaine took him to a concert one afternoon and I did not even realize it was happening until later. He came back with a tee shirt and later I saw pics of him as part of the group. It still amazed me to see it but at that point Elaine, Miyabe, Brett, and Max, (another of the instructors) all just took it in their stride. They were already used to hanging out with other students (who are also young adults, like Sri and Stefano, the lead guitarist). They taught these guys but they also had fun with them. The MUSE teachers – Brett, Max, Elaine, and Miyabe, were in charge of the students’ safety, but the only time they were paid was when they were instructing the guys. I wanted them to understand how precious this new existence was for Nat, for me. I wanted them to know what they meant to me. I wondered about paying them. But they shrugged that off. I suspected that it was somehow completely not it. That to accept my money would be insulting to them and to Nat. It would ruin it. It would define their relationship in the wrong way.

Why do I keep mentioning that it wasn’t a job, that no one was pay? Because in our society money defines who and what things are. Money shows appreciation for someone doing a job. So without money, what was the relationship? I was afraid to ask, as if to name it would change it.

So really, what was this kind of thing the four teachers were doing — and now also bringing along spouses and other friends? All of them in their twenties, some disabled musicians, some not. Sometimes parents like Ned and me came along. We were welcome, too, even though we are twice their age. And when we do hang out with them, I feel light and free, and full of potential myself. I still sometimes ask myself why does this happen? Why does this arrangement — MUSE as a group for whom only music and friendship and fun matter — why does it work so well? How can there be so many boundaries crossed? Maybe that’s not even the way to look at it; it’s not that MUSE crosses boundaries. It’s that the MUSE does not see obstacles to friendships.

It’s complicated, and yet it’s the most natural thing I’ve ever encountered.

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