Turning 22: One Day More

The morning before the last day and, right on cue, the buds are out for the first time this spring.

He won’t be 22 for a few more days, but because of the April break tomorrow is his last day in the School District. The week is devoted to community trips to his favorite places – movies, zoos, museums. The staff, like us, seems a little bewildered that this moment has finally arrived. It’s hard to focus on the administrative details and preparation for the next environment; we are grateful to have found a place that not only has meaningful employment waiting for him, but people who are looking forward to his arrival. We may have worked for this outcome but it is still something of a miracle to all of us.

Following the instructions.

There will be challenges, but they are not the kind we can see from here. I see glimmers of anxiety. Last night I asked him to fill out the simple application form for the job training program. he was busy drawing and cast me a sidelong glance, saying, “I’m not very cheery about this.” He complained while filling it out but, as ever, was meticulous about it. Earlier in the day he was putting together a truck given to him by a thoughtful classmate. I watched him pore over the instructions – how many people do you know who follow the instructions from the outset of an assembly project? These gifts, these skills, are integral to his thinking. They will serve him well, always, and will help him make a place for himself in the world.

So much more to say, but I’m out of words. Transition does that.

 

 

I’m Repeating Myself About Scripted Speech

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Long before we had reliable scripts we had picture schedules.

Me: I’m going to take a shower.
Him: Carry on! (Pause) Do what you’ve gotta do, baby. (Pause) Was that the spirit?

I could almost hear him flipping through his mental Rolodex of proper responses.

I’m glad that scripted speech is finally getting its due in some quarters. It’s not that original speech is not valuable, it’s just that, in our experience, 99% of the time there is something to be learned from the use of scripted speech. It might sound random sometimes but it really isn’t. Even when it’s the same thing over and over (and over) it is still telling us something, if only that the brain is overstimulated and that a redirect is required.

And really, the rest of us use scripted speech all the time. The internet thrives on scripted speech. What is a meme if not scripted speech repeated endlessly? Clickbait headlines? Scripted speech. YouTube clips? Scripted speech. Pop music? Scripted speech. It can be the fastest way to get an important idea or emotion across. Still, I understand that the autistic person’s use of scripted speech comes from a different place and has more layers than our often lazy use of slang and movie references. It’s like arriving at the same destination via completely different routes; you’re glad you understand each other but don’t assume you arrived at your mutual understanding in even remotely the same way.

Anyone who tries to write for a living knows that it involves the selective use of scripted speech to hold the reader long enough for new ideas to break through. Original speech is the real challenge, and that is what good editing accomplishes. But I’ve also learned that if I try to edit my speech while speaking, it will make him intensely frustrated almost immediately. It is not only necessary that we understand his scripts but that we use them, when possible, to convey our own ideas to him.

I suppose my point in bringing this up again is that I find that even as I am more accepting of his use of scripted speech, it has now reached a point at which I am not sure if we have trained him or he has trained us in its proper use. After all these years it’s easier to identify the scripted speech and to know when it is leading us away from a happy place, but is it easier because we have been doing it for so long or that he is getting better at making his needs clear?

The challenge in this transitional period is to step back and see how obvious those distinctions might be to the new people who will soon enter his life. His current supports are so nuanced and so well established, we don’t really know how much work there is to help him master a language of self advocacy. This process of helping him maximize those skills is, I think, the key to a successful transition. It will be hard for me to step away from the role of interpreter. I’m already making a mental list of the phrases that signal anxiety and at this point I’m not sure if they are his…or mine.

Waking up in the Dark

img_8055It’s January for real. School program is back in session. We wake up in the dark. Without my permission, my mind now looks at every routine as something that will change soon, and weighs whether that is a good or a bad thing. At 6am, everything is a bad thing…except then I realize maybe 6am won’t be the wake up time any more. File that one away. For no particular reason I am glad the Christmas lights are stored away. Nothing more depressing than Christmas lights after Christmas.

The phone rings. The driver reports that the street is too icy for the van to come any closer. We can’t even see the van or its headlights. Winter, by New England standards, hasn’t even gotten started yet and we have had more van troubles than even the epic snowstorm years. There’s already been one morning when a crew was required to get it unstuck. It’s considered safer for us to walk down the icy street in the dark than for the damn van to try and make it to our house on our road, which is newly paved but was poorly graded when the street was built. The current driver is risk averse but very nice, and he inches the van into view so his headlights can light the way. The designer of the Econoline van clearly lived in the south, because they could not perform worse in winter conditions and yet we all pile our precious people into them.  “A tin can on wheels,” one of our more adept drivers calls them.

In previous years we have had braver drivers, better vehicles and a more attentive and skilled plow company. We can only hope that next winter brings better transportation arrangements, but the odds are very much against it. Adult transportation services in semi-rural suburbs such as ours are practically non-existent. It is a bureaucratic and funding quagmire that is legendary among bureaucratic quagmires. I attended a transportation conference last spring that was designed to address just this issue – in the age of Uber and Lyft surely someone is looking at the big picture. Um, not exactly. Regions, cities and towns are coming up with their own solutions, some better than others. Still, the conversations are happening and many experiments are underway. My job is to figure out where our town is in the process and try to move things along, as it were.

It doesn't look like the driveway from hell, but to some it is exactly that.

It doesn’t look like the driveway from hell, but to some it is exactly that.

Out and about on this rainy, icy, miserable day, I see an older woman making her way down a treacherous sidewalk. She is wearing a heavy wool coat and has a plastic rain scarf on her head, the kind that unfolds like an accordion. She’s pushing a wire shopping basket. I feel guilty zipping by in my warm car as she bumps along, and I wonder how people find themselves so suddenly in her shoes, in the rain, in the cold and it strikes me that I know exactly how that happens and that this is why I am obsessed with the transition. But this particular person strikes me for another reason. Even though I cannot see her face, I have known and been curious about women like her – kind, patient and determined. I think of one from my childhood in Iowa, Evelyn, who was a nurse who survived the Bataan Death March in 1942. She haunted the back of our church and brought our family bags of walnuts she had gathered from her yard. When the Beatles released Eleanor Rigby, my mother said the song reminded her of Evelyn. She is one of so many people I wish I had been brave enough to know better.

In the meantime, I resist the urge to ask my teenaged companion if he wants to live in this town forever (I know that answer anyway), if and when we should sell the house, and whether he really needs to go away to college. For once I am grateful for the Metallica blasting from his earbuds.

Breathing deeply, I remind myself that we can only make one decision at a time (mostly) and that no decision can or will last forever, so I should stop planning for decades and settle on planning for months. I’ll never stop thinking about the decades but for now just getting home and having lunch will have to suffice.

Getting home and having lunch. Sounds like a routine we can keep.

The Transition Year is Here

Christmas is over; time to move on.

Christmas is over; time to move on.

And so at last we embark on the year of Turning 22.

I keep a transition notebook to help me track the details and events that I need to know and remember. Today’s entry is rather unexpected. As our boy reveled in the Piston Cup and Radiator Springs setups that yesterday supplanted the Christmas Tree, he called out to me:

“I have a good feeling about this year. I think everything is going to work out fine.”

This is a moment for which every parent hopes. It is beginning to dawn on me that it marks the first of many role reversals between us.

Bring it on.

All Muddled Up

Waiting for the fog to lift, literally and figuratively.

Waiting for the fog to lift, literally and figuratively.

More than the diets, more than the structure, more than the cognitive delays, I am flummoxed and frustrated by the sensory and auditory processing issues that come with our version of ASD. I was raised in a house full of voices and conversations, laughter and bickering, a barrage opinions trivial and and nontrivial.

While I require long stretches of silence I also crave conversation, and there are times when animated voices are something my boy truly cannot tolerate. Even conversation in muted tones can upset him if my sentences are not complete and he becomes furious with my “muddled up” speech at the merest hesitation mid-sentence. Go ahead, try it, try to talk in complete sentences all the time without pausing or correcting yourself partway through. It’s not always a problem for him, but it seems to happen a lot these days.

Keeping my distance.

Keeping our distance.

What bothers me most is that it is easier to have conversations when he is not in the same room and I hate what this kind of self-imposed isolation indicates. It keeps me from doing things I want to do with him, and makes me want to protect him from those situations that overwhelm him and make him want to stop the world – and me – from talking.

Aware Enough

A version of this post appeared in April 2012.

We had an opportunity to share part of our story in a way that I felt I could finally add something to what seems to be an avalanche of autism dialogue.  I can’t ignore the conversation; I learn from courageous and brilliant people every day.  I cannot afford not to listen.  But sometimes it’s hard to share – people we know with typical children (Is there such a thing?  Discuss.) think we are unlucky, but we know how lucky we are.  Context is everything.

At the turn of this century, out of necessity, we took a more novel approach to addressing autism because we saw gastrointestinal symptoms we felt we needed to ameliorate; it turned out to help us address autism as well.  Karyn Seroussi was smart and brave enough to write a book about her boy, Miles, who sounded a lot like our boy.  With her book as a guide, we collected data, we tried only things that would not jeopardize our child’s health, and when something didn’t work we stopped.  But the fact is that a lot of it did work, and I remain mystified as to why people who treat their child with diet and gastrointestinal treatments are vilified by some parents and physicians.

Even my beloved mother accused me of using dietary intervention as a way of denying my son is autistic.  She said that removing foods from his diet was a way of withholding love.  But she was thousands of miles away; she did not see what I saw, she did not live what we lived.  We had spent his earliest years first trying to figure out what was wrong, then in learning it was autism, in trying to figure out what caused it.  But it soon became  clear that what we needed to do what help the boy in front of us in whatever way we could.  That has not changed.

So the years have brought an ebb and flow of interventions:  gluten-casein free diet, yeast treatment, removal of artificial colors and flavors, soy, high-pectin fruits, and bananas.  That’s what worked; it improved his health, and with improved health came the strength to deal with autism.  After the first year, my mother heard the results and apologized; it was the most important parenting lesson of my life.  We tried lots of other things with inconclusive results, and we went for long stretches without doing anything new at home while we made adjustments to his program at school.  We have two other children in need of just as much love and attention, and balance is important to us.  We resisted, not always successfully, letting autism take over our lives.

So when, in December 2008, Dr. Martha Herbert gave a talk at Massachusetts General Hospital about the whole-body approach to autism we listened, mouths agape, at someone who told our story without ever having known us.  The story of that night and the days that followed is another post, but it led to our cooperation with Karen Weintraub on an article in the Boston Globe in March 2012 (it’s the same one linked in the first sentence of this post).  We’d had other chances to be in the media but the central issue always seemed to point toward anger and controversy over schools and treatments – worthy causes, always, but not ones that merited public exposure of this particular family.  Is that selfish?  Maybe, but to me, at those moments, I felt only protective, and that sense of privacy always outweighed any sense of the greater good of going mainstream media.

Until Martha and Karen’s 2012 book, The Autism Revolution.

Karen, an eminently principled journalist and amazingly reasonable person, convinced me that we could preserve our privacy and tell the most unique parts of our journey in a way that did not make us look like every family should do what we did for our son’s autism.  I heaped her with details and diatribes long dormant over the ten years since we began interventions.  She graciously accepted my four-page answers to yes or no questions.  She sifted through it all and, after putting up with our constant hand-wringing about privacy, composed an article that leaves us very proud to have worked with her.

Consequently, during Autism Awareness/Acceptance month, sometimes I feel like we are the hurricane, sometimes we are the eye.  It changes minute by minute.  But if one reads though the rest of this blog or it’s broader parent blog, LettersHead, you will not find evangelizing about causation or our intervention strategy – there are plenty of more useful places to read about that.  For better or for worse, all I can bring myself to do is piece together the past in hopes that it will light the way for the future.  And yes, sometimes that light turns out to be blue.

My April Fool

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There are many people who advocate for autism awareness and acceptance better than I.

As another April rolls around and so many campaigns go forward to integrate autism into our collective consciousness, I find that my greatest impulse is to share my undying admiration for my ASD son, who is growing into a delightful man. He is mercurial, goofy, meticulous, and single-minded. He is sensitive, intuitive, impulsive, and hyper-empathetic. He worries about death, separation and growing up.

Most of all, he is vulnerable. He is aware of a complex world in which many things are just beyond his reach and so craves sameness and routine. He wants those he loves to be always near him. The heavy mantle of trust he places on us is never a burden because within it is his precious heart that gives love so freely it makes us dizzy with delight. All his emotions are distilled down to their purest form, and there are moments when I am temporarily daunted and disarmed by the intensity.

He is, I have understood for many years, the embodiment of the greatest joys and fears of all humans. He is the precious natural resource we have been charged to preserve. We are honored by the task and hope to be worthy of it, and of him.

Autism Transitions: Parental Developmental Delay

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He sleeps on.

A boy comes home from a long day at Kindergarten, climbs into his mother’s lap and both fall asleep in the dwindling winter afternoon. That was today. Except the boy is 19 and he’s a Kindergarten teacher’s assistant. Still, his 5-foot-7 body folds into my lap as easily as a toddler’s, his head fits neatly in the nape of my neck and his sleep is as deep and blissful as an infant. When I close my eyes I literally cannot tell the difference in age, so complete is his ability to shift his weight and meld his body to mine. I have waited for this phase to end for roughly 18 years and miraculously, disconcertingly, it never does.

As we navigate the transition to adulthood, such moments become more poignant. He’s making it harder for me to let go by being such a perfect man-child.

Over the Christmas break I had to run to the Post Office one morning – I was gone for 20 minutes, tops. When I returned I was met by a flummoxed husband and my boy pronounced, very matter-of-factly: “Mom, Dad and I find life very difficult without you!” There was a medication question – I had forgotten to leave out the morning pills. If I had been out of town they no doubt would have figured it out easily, but my unplanned outing sent them into a tailspin and no one even thought to call me on my mobile. I suppose I shouldn’t be surprised that I’ve become such a fabulous enabler. The rewards of caring for this family are so epic that even when things are horrifying and dysfunctional they still make a good story.

After waking, tea with Panda. What part of me would ever want to miss tea time?

After waking, tea with Panda. What part of me would ever want to miss tea time?

Consequently, I’m doing a lousy job at making myself obsolete. As other women my age with kids the same ages as mine plan their next act I find myself trying to perfect the at-home game – which, under normal circumstances I was never very good at. My husband is a far better housekeeper than I am but he works and travels a lot – after 21 years at home I think I’m finally picking up a few of his good habits, but it really has taken that long. The good news is I can cook and I’m well-suited to dealing with the monkey wrenches autism keeps hurling into our lives. I’m grateful that my husband’s work allows me to focus on our family. Sometimes I allow myself to wonder what would have happened if I hadn’t been able to stay home. My boy would have survived but probably not thrived and I would likely have succumbed to some rural suburban mother madness (which is still possible). Maybe I would have revived my old career instead of trying to carve a new one out of the Internet, but even as I try to create new opportunities I can’t really bring myself to take my eye off that autism ball. Like the shoe that periodically came flying from the back of the minivan in years past, it has a tendency to smack me in the back of the head if I turn away.

So, yes, I am having trouble outsourcing my job so that my man-boy can be more independent, partly because he keeps me warm but also because I’m avoiding thinking about what else I should be doing. Even as I try to write on other topics, I am emailing job coaches and setting up meetings to create community networks for adults with disabilities. I’m tracking legislation and figuring out SSDI. I know what I do is making his life better, but I’m just not sure I’m ready to make his life better without me. I want to have it both ways, and I’m going to figure out a way to accomplish that. Later, after tea time, maybe.

Schooled by Autism: Lessons From Charlie Brown and Lucy

blog_lucy_footballI heard the familiar, beloved sound of Vince Guaraldi’s Peanuts music and then a voice from the study, “Poor Charlie Brown. He missed the football again.”

Dad asked, “What happened?”

“He tried to kick it and then he bonked his head.”

Dad insisted, “But why?”

“Lucy pulled it away.”

“Why do you think she did that?”

“I have absolutely no idea.” Then a long pause. He is a person for whom spite is literally impossible, I am pretty sure.

“Fear makes people do strange things.” And wisdom appears in the most wonderful moments.

The Telltale Desktop

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You can learn a lot by what someone keeps on their desk, and I’m developing a new appreciation for the tangible things that signify what’s important to our young man. We are designing a new, more professional workspace for him and so have been moving some things around. Here’s part of what I discovered:

  • a pencil sharpener, for when the electric one is too noisy
  • an eraser that does not make crumbs
  • a harmonica, for playing along to music on the computer ( with headphones on)
  • double stick tape, because we are out of regular and drawings must go up on the wall ASAP
  • two spare mouse batteries in a handy basket
  • the three little pigs and the big bad wolf, for inspiration
  • a battery charger for the camera we can’t find
  • a picture from the prom sent by a teacher
  • a ruler – probably because it fits nicely in that spot because he never uses it – except maybe to conduct a symphony now and then.

There were various pictures printed out from the internet taped to the table but I did not get to those in time for the photo – but one of them was of the chorus from Joseph Had a Little Overcoat, which is stuck in my memory in perpetuity.

I feel as though we are now truly seeing the emergence of an adult personality. Like all of us, there are parts of his childhood that he will never let go. Some patterns are set, but there is a self confidence about routine that seems less driven and more comfortable. He is taking charge of the things that matter to him and for now, he is trusting us to take care of the rest. We’re doing our best not to let him down.

In the meantime, maybe he can organize my desk for me.