20 July 2022

Schooled by Autism: Lessons From Charlie Brown and Lucy

A version of this post originally appeared in 2015.

I 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.

1 May 2018

Autism Transitions: Full Nest

Turning 23

I didn’t mean to wait a full year to post, but I think I am glad I did. For many families turning 22 means an empty nest, but not us. Much of this first year has been characterized by a sense of relief for him that not everything is changing at once. I share that relief, wholeheartedly. As we prepare for our other children to leave the nest, I am admittedly grateful to know that this man will linger. I understand that we can’t let contentment morph into denial. I also understand that even typical brains aren’t fully developed until age 26 and so extending the transition process beyond 22 means we still need to continually assess the whole person and the whole picture, giving equal weight to the futures of his siblings. Our family is evolving and nothing is truly settled. We are not ready for the long term plan, and if the transition has taught us anything, it’s that planning ahead is an art, not a science. There are few absolutes, and in this political climate we can’t even plan on even the most basic levels of support for our man beyond the family unit.

Not for the first time, it occurs to me that I’ve built my life around this family and any personal ambitions I may have had pale in comparison to what has turned into a life’s work: this person who now stands before me, nearly grown. While I try mightily to extricate myself from the lives of my other children, he fits so easily into who I am now that he is in so many ways an extension of me, and I know my husband feels the same way. We, the three of us, are a single symbiotic organism and even when it is maddening it is also plain that I cannot breathe without them. I don’t think it will always be this overwhelming, but it the feeling that we are thriving together instead struggling to understand and survive is shot through with a kind of success that is difficult to describe.

That said, one year into the transition we are dealing with only a few of the issues I thought we’d face, establishing social connections and opportunities being the most difficult challenge by far. There’s a bit of waiting for the other shoe to drop, for sure, but the best part is that he is controlling the dialogue. So long ago I prayed for him first to be able to say yes or no, then to tell me if he had a good day, then to outline his fears and desires. I got all of those things and more, even as he remains as vulnerable as a preschooler. I still bask in the miracle of him becoming so much more than I was told we could have hoped – but my hope never waned, and never will.

 

13 April 2017

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.

 

 

31 March 2017

Turning 22: What’s for dinner? I have no idea.

Is there dinner in there somewhere?

When the going gets tough, I go grocery shopping. Too often. Usually my list has about 4 things on it, virtually the same every time: grapefruit juice, yogurt, pizza crust, vegan cheese. We always need those, but I always end up getting other things I think we need: paper towels, seltzer, dishwashing liquid, ice cream. Then I get home and realize that I’m only prepared for my husband’s breakfast and my son’s dinner.

That’s a problem.

So then, if I can pull it together, I think of one possible meal that will feed all of us – spaghetti, pork roast, steak, chicken. Then I need to decide which store will have what I want (I visit, on average, 5 different stores every week, three of them more than once) and spend an inordinate amount of time reading news and playing candy crush while I decide what time is best for me to make another store trip. I seldom leave the house specifically to grocery shop – tacking it onto another errand gives the illusion of efficiency when it is anything but.

It’s not always this way. There are weeks when I plan and shop for meals 4 or 5 days in advance. Part of it is seasonal – it’s easier to keep on hand and grill many foods that will suit everyone. At one point I got a farm share and was marginally successful at using up even the unusual foods that appeared in my weekly box (full disclosure: I nixed the kale).

I really can do this #threepizzas

I can’t blame the special diets because I’ve been doing them for so long I’m used to making 2 or 3 separate meals to meet all the criteria. If everyone is home and we all have pizza, I assemble three kinds: gluten-dairy-soy free, gluten-free with cheese, and wheat pizza with cheese.

So somewhere in my brain resides the capacity the plan, shop and cook meals without multiple random disorganized shopping trips. That part of my brain is just not operational at this time. In the early years after diagnosis (but before special diets) I think we subsisted entirely on hamburgers, spaghetti, roast chicken and grilled cheese. I don’t remember eating anything else (except that one Saint Patrick’s Day when I made corned beef and cabbage and key lime pie, which might have been the worst menu ever).

Years ago, a friend’s father was diagnosed with cancer and her mother spoke of standing in the market, unable to choose anything. At the time (I was SO young) I thought, “How hard can it be?” The answer is: really hard. My mind is occupied with other things and unless I haven’t eaten for two days (okay that never happened – more like 18 hours) food just isn’t a priority. It should be noted, however, that this doesn’t stop me from eating everything in sight in the process of not caring about food.

So the transition has hijacked the food organization section of my brain (along with other sections that have been hijacked by cable news, but I digress), replacing it with elaborate schemes to convince my husband that Chinese food from a place 45 minutes away is a really good idea. Except it’s not because he and I are the only ones who crave dried chicken with chilies and apparently we need to feed our children, too. For the record, they are all old enough to fend for themselves, but I kind of have a thing about feeding everybody in my house, whether they live here or not.

I’ll be glad when spring comes and the transition ceases looming and starts being. The uncertainty about what exactly will not go right – because it can’t be perfect – will be replaced by real successes to be enjoyed and real problems to be solved. I am overwhelmed by not knowing if what we have planned is indeed what we should have planned. Did we make the right choices? Talk to the right people? Ask the right questions? File the right paperwork? Are these the right services? Will we lose funding? How can we possibly thank everyone who helped us over the last 18 years? Who will stay in our lives? Who will leave? Will his feelings be hurt? Will he find new friends? Will we? Should we? Are we too isolated? Once I let one question in, all of the others come galloping in behind it, and most of them have no answers other than to wait and see. I hate that.

In the meantime, I have to go and sort through the groceries I bought and see if there is any dinner in there. Chocolate chips and parsley, anyone?

9 January 2017

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.

3 January 2017

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.

1 January 2017

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.

28 September 2015

Lessons from the Blood Moon

Photo credit: Russ Campbell

Photo credit: Russ Campbell

We had a crystal clear night in which to observe last night’s blood moon. Even better, the eclipse of the super moon coincided with the time the moon shines through the skylight onto our boy’s bed. So I laid down on the end of the bed, propped my feet up onto the bookshelf, binoculars in hand, and watched the show. It was late, he was tired, and so periodically I would nudge him and hand him the binoculars so he could sit up see the ever-reddening moon. At first viewing about halfway through he was nonplussed, but when the eclipse was total he looked at me and said, “That’s pretty cool.” Then he crashed back onto his pillow.

A few minutes later, he finger-walked his hand down the bed and parked it gently on my shoulder. I reached up and gave it a squeeze. And when I next looked at the moon I noticed something else. Besides giving the moon more dimensions and a better-defined spherical shape, the dim light also allowed me to see the stars nearby. When there is a new moon it is easy, in our neck of the woods, to see the depth and grandeur of the Milky Way across the sky. But during the eclipse we can see the Milky Way and the moon together and for me, suddenly, the universe was real in a way that hasn’t struck me in a long time.

Over 30 years ago, I sat alone on a Lake Michigan beach during a new moon. I felt the depth of the sea of stars above me, and it occurred to me that if the moon was on the other side of the Earth then I must be upside down, in danger of falling into outer space. The thought was startling enough to make me reach down to steady myself and of course all I came up with was two handfuls of sand. I had to depend on gravity to hold me in place; that thought has stayed with me. I recall that moment often because it was then that my 19-year-old self became aware of all of the possibilities and uncertainties that were ahead of me, and there was only so much I could do to control the future. There would be times when I would reach for something solid to steady me and come up with a handful of sand. Sometimes a person would be there. Other times, gravity would have to suffice.

Last night when I looked out, past the moon and into deep space, someone reached for me and I was there. I was the something steady, and with my eyes on the cosmos I felt somehow worthy of his grasp. The future is as full of possibilities and uncertainties as ever, and the idea of it all being tied to a blood moon is not lost on me. Going forward, sometimes the full moon will dominate the sky, illuminating some things and obscuring others. Sometimes the new moon will let us see the rest of heaven from our darkened earthly landscape. Many things will change, for him and for me, but these – along with blessed gravity – will be constants if we can just remember to look up, together, and try to see it all.

10 August 2015

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.

4 April 2015

Getting Help in Massachusetts: Enhanced 911 Silent Call Safety Procedure

We just learned about this, and we are sharing it as part of the increased awareness campaign for April. If you don’t live in Massachusetts, contact your local police department and see if they have a similar option.

IMG_1461The Silent Call procedure is a unique program in the Massachusetts Enhanced 9-1-1 system that allows a caller who is unable to verbally communicate their emergency over the phone to receive the appropriate response.

If you need to call 9-1-1 and you are unable to speak for any reason, such as a physical disability, domestic violence or home invasion, follow these simple steps using a touch tone wireline telephone or a cell phone:

FIRST DIAL 9-1-1

Once the call is answered, indicate your need by pressing the appropriate number on your telephone.

IF YOU NEED POLICE:  PRESS 1

IF YOU NEED FIRE: PRESS 2

IF YOU NEED AN AMBULANCE: PRESS 3

The 9-1-1 Dispatcher may ask questions that require yes or no answers.

PRESS 4 FOR YES

PRESS 5 FOR NO 

2 April 2015

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.

1 April 2015

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.

22 January 2015

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.

29 October 2014

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.

27 October 2014

Saturday Moment: Halloween Prep in Sodor Brings Some Surprises

IMG_0018He’s on a roll with drawings and decorating, and today the trains need Halloween prep. I never fail to marvel at the focus and precision he brings to these projects, which are totally his idea. Add to that he has positioned himself right in the middle of our own project of reorganizing part of the basement – we are working near and around him, going back and forth, calling to each other and generally making a racket. He is unperturbed. Add to this list of potential antecedents my request that he move part of his train set temporarily so that I can clean out and move a cabinet that holds various frames, craft supplies, toys and videos. I don’t really want him to see the things I intend to give away, but have already decided that I won’t give away anything he wants me to keep. We have finally learned to pick our battles.

IMG_0016I can tell he doesn’t want to move the train tracks out of my way, and I am prepared for him to declare that I am an Onion lady who is too full of organizing.  I wait a while to let the request sink in and focus on something else. Then he materializes in front of me, holding a box of videos: “I’m too old for these.” They are Richard Scarry ABC and counting videos. They are my favorites. But I take them and set them aside with the other “give away” things.

Then he appears with another box of videos, classic Disney this time. “We have all of these on DVD, which is more efficient.” Then I realize that, rather than move the tracks or allow me to navigate around them (which I couldn’t – I’m such a klutz I would definitely step on them) he is carefully removing everything from the cabinet himself.

IMG_0017So while he was constructing Halloween decorations for his trains, he was also making decisions about growing up, and managing change and doing it all beautifully, meticulously, and offering up explanations along the way. A task that would have been frought with emotion and behavior management (and that in younger years I would probably have attempted in the middle of the night or while he was somewhere else) had evolved so peacefully I almost didn’t notice – until I realized that he was having an easier time parting with things than I was (you don’t want that 12-foot train puzzle that you put together a thousand times, really?).

Not so long ago I wondered if he would ever grow out of some things and I concluded at the time that it didn’t hurt to wait. It’s not always true that all things come to those who wait, but on this day it is. As I was reminded by him more than once this week, “Patience is a virtue, Mom.” True, that.

3 April 2014

Autism Understanding: Wandering, Bolting, and Leaving.

IMG_7973Today, we are thinking about Avonte Oquendo and other children who left home, school or caregivers and did not survive that event. Years ago I was in a group of parents and a woman with a newly diagnosed 3 year old asked earnestly, “When will I be able to stop holding his hand?” Everyone laughed (not unkindly) and then the mother next to her leaned over and said, “How about never?” Everyone ought to hold a three-year old’s hand, of course, but she touched on something that is so hard to explain – she understood that the way she held her boy’s hand was different from the way the other Moms held their kids’ hands, and she wanted to know if that feeling would abate. The answer is…I don’t know.

Here’s the thing about wandering – many people with autism don’t “wander.” They bolt. They leave. They hide. They vaporize. They run away from something they fear or toward someplace they think is better. “Wandering” makes it sound like someone wasn’t paying attention. What a lot of parents will tell you is that all they did was blink and the child was gone. They aren’t always exaggerating or equivocating. Some of these kids are lightning fast, and mine can even tell when I’m not thinking about him, and when I am. When he was small and I was looking at him but not thinking about him, he would always do something to snap me back to attention – it was a psychic choke chain that quite probably kept both of us alive.

The way I look at it, in 1997 God sent someone to break into our house, forcing us to get an alarm system we otherwise never would have bought. Along with its many alarm functions it has am “on watch” setting that sounds a beep every time a door to the outside is opened. When our boy began his disappearing act a year later, we were ready and we needed to be – we live on a pond, with a yard that is literally impossible to fence in (though for years I tried to figure a way we could do it without feeling making our yard look like the set of F Troop). But we were soon to learn that the door beeper was not enough, because when the weather is warm, doors aren’t always completely shut.

Living near water is a source of tremendous joy and anxiety for ASD families.

Living near water is a source of tremendous joy and anxiety for ASD families.

It was preschool orientation day, and the boy was three and half and as yet undiagnosed (1998 was a different time). Everyone in our playgroup had different orientation times so all of the moms and kids gathered at our house and people took the little ones up to school for orientation and the older kids stayed to play in the perfect September sunshine. I had already gone to school with our boy (and was anxious about sending him to preschool when he didn’t seem ready, but he was three and that what you were supposed to do) and was back at home making lunch and dealing with your standard “take that juice box outside, please” chaos. I ran upstairs to get something and when I came back down I passed the front door, which was wide open. I stopped. In front of it was a perfectly clean, recently removed diaper. No clothing, no socks, just a diaper. Oh, and a perfectly formed little swirl of soft serve ice cream-like poop on my new cute front hall rug. I looked out the open door into the front yard. I called to my friend Tracy to check the back – I knew it was my boy and I knew he was gone and she and I knew instinctively that this was no simple naked romp. We scanned the shoreline along the pond – no ripples. She jumped in her car to check the state highway a few blocks away and I followed a hunch that took me down the street on the path we took for our morning and afternoon walks.

Over the rise at the end of our very long driveway I looked up and saw our neighbor’s garage door was open – the Dad who worked from home (Andrew) was home. We had children the same age, we visited their home often, and I decided to check their yard and let him know we were looking for a renegade boy. First, I decided to check the perimeter of their house so that I would not have to bother Andrew if our boy was outside. I rounded the back of the house and glanced through their slider. There stood the boy, stark naked inside the neighbor’s playroom, proud, defiant and trembling with anticipation for the chase he knew was to come. The slider was locked – there was a wall of double paned glass between me and the boy. Our eyes locked; he knew he had the upper hand. If I took my eyes off him he would certainly bolt again but my odds of catching him were good – but how much damage could he do in the process? Where would he poop next? I bellowed “AnnnnDREW!!” Nothing. I had no choice, I bolted around to the front door (locked – how did the little bugger get into the house – oh, right, the garage). I knocked and rang the doorbell until Andrew came to the door with the phone in his hand and opened it, totally befuddled – I ran past him and got to the family room just in time to see a naked bottom round the corner and go up their back stairs. I yelled to Andrew to cover the front stairway in case I didn’t catch him in time, but I manage to scoop him up just as he reached the top of the front staircase. Poor Andrew stood agape at the foot of the stairs – there was no easy explanation for what had just happened and it was hard to know whether to laugh or cry but I suddenly knew that if either of us laughed I’d be repeating this ritual every day.  We could not turn this into a game.

I look back on that day as a turning point in my understanding of my boy and for the many things it revealed about him as the years went by. In our case it outlines some of the characteristics of autism and some of the misunderstandings about why our boy ran:

  • the thrill of the chase,
  • to send the message that he wants our attention – now,
  • the sensory thrill of both nakedness and running in the sun and wind, and
  • the satisfaction of running to place on an established path that also provides some comfort and/or sensory input.

I developed a number of theories about the poop gift in the front hall but they key lesson it holds in the bolting behavior part of the story is that he was angry and scared about going to preschool and didn’t have the speech to get that across. I completely underestimated how much he understood about what that day meant. He’d seen me drop his sister off at the school and did not want that for himself. He didn’t want to separate – he still doesn’t – and he knew exactly how to get my attention even if the full message didn’t come across. He used every tool he had to tell me he wasn’t ready for preschool, but in those days I was still under the impression that we were on a fairly typical trajectory – even though we had identified a significant speech delay and autism had come into the conversation. Despite the many concerns I had (too little speech, an inability to make choices) the professionals we were consulting at that time insisted that he didn’t fit the DSM criteria. He was too engaged, too empathetic and loving, and there was no hand flapping flapping or lining up of toys. No one talked about bolting or wandering in 1998.

In the home setting he would bolt or hide when things were not going his way – for us it was and is a deliberate act. At school my assessment was that he was looking for attention, sensory input (the chase!) or to alleviate anxiety caused by speech skills that were developing too slowly for the ideas in his mind. It was a way to say that he wanted to negotiate for something.

One afternoon when he was in first grade after school my friend Ellen called, and the conversation began with,

“You didn’t hear this from me.”

I knew the school program was not what it needed to be; tensions were high with parents, teachers and staff as it became increasing clear that two children were regressing and showing increased aggression. Unlike the Early Childhood Program, the elementary school teachers had zero training to allow for effective inclusion. We were standing on the sidelines, still trying to figure out what we needed. She told me  that she had seen my son out through the glass doors of teh school, standing on the unfenced playground (which was adjacent to a vast open field with tall grass that with wooded conservation and on the far side). Knowing she was close enough to get to him if he ran, Ellen said she stood at the window and watched as he weighed his options while she checked her watch to see if he would bolt or if someone would come looking for him. Ten eternal minutes passed before she saw a teacher come and bring him inside. He had tried to get her to play tag, but he did not bolt. My heart still lodges in my throat as I write about it – it is the story that came to mind when I heard about Avonte. Ten minutes is a lifetime, enough time to get permanently lost in a rural community, enough time to run into the street, enough time to be scooped up by the wrong kind of person.

Every child – every person – is motivated by something when they run away and very often we figure out what it was only when it is over and they are found – or not. Trains, water, animals, cars, can lure them away. Fear, crowds, noise, and defiance can drive them away. We’ve been lucky. It’s as simple as that. Lucky that we (and our friends) saw things when we did, lucky that he was motivated by things we could often figure out, lucky that he’s developed enough communication skills to talk through the things that make him want to escape, and lucky that he and we have not, so far, been in the wrong place at the wrong time.

Doorknob motion sensor alarm. It's ridiculously loud.

Doorknob motion sensor alarm. It’s ridiculously loud.

The takeaway for me on our experiences is that people with ASD are most likely to happen when there is change, conflict, transition and confusion. For us, bolting and leaving seem to happen when neither one of us is entirely comfortable with the situation. Until very recently, when we traveled we brought door alarms: motion sensitive devices that hang on door knobs and beep when anyone tries to turn a door handle. We still don’t have enough reliable GPS services in our area for wrist devices to work for us, but he carries a cell phone and he knows how to text and make and answer calls. But even though he can do all of those things and is now taller and stronger than I am and can ask for directions and cross a busy street by himself, my hand still twitches to hold his when we are together.

I’m not sure that will ever stop.

 

 

 

1 April 2014

Letter from the Soapbox: Blaming Budget Woes on Special Education

 

This is a verbatim exchange between me and a local taxpayer – I have a conversation like this with someone every time we have a budget crisis, which is about every four years. It appeared within a larger thread about local school district funding issues. We may be facing a tax override. I changed the name of our town to Mayberry, for what’s worth. I probably should have changed it to Peyton Place.

Resident:

Is it really true that nothing can be done about Special Ed?  I have friends with kids in special ed and they say that Mayberry is widely known as a school system that approves every parental request and is easily “gamed” by savvy parents.

Me:

I feel compelled to ask – how does one “game” special education? After 15 years of special education experience in Mayberry, I have yet to come across parent who thinks that getting special education services is something to be “gamed.” If that means the School District is meeting their kids’ identified needs, that’s called education. The idea that parents could dupe the school district to provide for a child who doesn’t need services is a little far-fetched, don’t you think? Gaming indicates you’ve fooled the system into giving you something you don’t deserve or haven’t earned – is that a valid way to look at special education? Wouldn’t you think that a parent with a child with a disability would work hard to make sure they got the help they need – and that they’d try to be savvy about it? That’s good parenting. I wonder, too, how your friends with kids in special ed feel about you sharing their view of the system.

Mayberry does not approve every parental request, and the District has the legal fees to prove it. (And the eligibility process is complicated, especially when people don’t agree.) In fact, the increased expenses in 2012 and 2013 are the result of the District being so woefully out of compliance in key areas that it lost a number of kids to private placement (several of whom have since been brought back in District because the leadership saw fit to build the programs that were previously lacking). 

Here is the key point: because special education fees were not reported to the School Committee by the Superintendent and Business manager (both gone now), there was no way to budget for them and they were then paid for in ways not apparent to the School Committee. That does not mean that those expenses were unwarranted – accounting errors are not the same as providing services that were not needed or mandated by the state. As Barbara Rich pointed out last week, Mayberry’s expenditures and out of district placements are in line with the state average.

Finally, transportation expenses play a huge role in this process, and that’s something over which parents have zero control from a financial standpoint. When the decision was made to go to an outside bus company, the only issues parents weighed in on were communication and safety; parents had no way of knowing which was the better decision from a budget standpoint.

The problem and responsibility lies squarely with those responsible for building and funding a budget, not with the people who determine for special education services.

Please vote yes, for all the kids.

Me 

Resident:

I would like to thank all the parents who reached out to me (both here and elsewhere) to talk about their experiences with Mayberry’s special ed program.

From what I’ve heard, it sounds like the current system is severely flawed and is hemorrhaging money.   It looks as though the schools are aware of it too, and that Mayberry has an unusually high number of children diagnosed with serious disabilities: [link to a report called the Walker report that audited special ed services in 2012] As a taxpayer who spends considerable amounts of money to educate your [emphasis mine] children, I hope that the wasteful aspects I this program can be eliminated.  I have seen a number of studies that have concluded that the most effective special ed systems actually spend less money, not more.

Me:

Everything I said in my last post lines up with the Walker study, which covered the time when the District was out of compliance and lost kids to outplacement – what confuses me is that you said earlier that Mayberry hands out services to anyone who asks but the audit shows that is not the case. What it shows is that even though, at the time, Mayberry had more kids than usual out-placed, the overall percentage of the budget going to special ed was still within one percentage point of the state average. Which means that the District was serving more kids in district at a lower rate than everyone else. The report also noted that the District’s inclusion rate is above average and recommends more training to support teachers in this venture. It doesn’t say anywhere the money actually spent here is wasted. There is a higher number of kids but the overall percentage is virtually the same…so that might mean that Mayberry is spending its dollars pretty well. Also, a district this size cannot build a program for every kind of disability, which means that it is sometimes more cost effective to send kids out than build a special therapeutic program for very few children. There is no question that the District can do better, the question is what we mean by better and how one identifies waste – this is a leadership issue and not one that can be addressed with any effectiveness on a town list. I greatly admire those who serve on our Town Boards and Committees to make sure it all gets done in the midst of so much second guessing.

As a taxpayer who spends considerable amounts of money and time investing in all of the children of Mayberry who are the future of our towns and the good teachers and schools that keep property values high I feel that my time and money are well spent. I am not elderly but I gladly pay for services for those who are and I place a certain amount of trust in the government to makes sure those services are maintained; we all invest in our community and I cannot help but take umbrage when people with disabilities are singled out as drains on the system. The education and support we provide to our children give them a greater shot at independence and productivity then they have had in generations past, when some of them would have been in state care their entire lives. I made this exact same argument when my child was a preschooler and I find myself making it here again when that child is in high school and also out working in the community, thanks to the teachers and staff of Mayberry. Thirty years ago that would have been impossible. It’s an investment, it pays off, and all of us are worth it and better because of it.

Respectfully,

Me

Resident:

If you look at the history of budget cuts in the schools it is clear that they have been cutting programs for *all* students for several years in order to pay for special ed programs.  The current initiatives on the table will not bring back those programs.  I can’t help but think that this has had a negative impact on our public schools quality and reputation, which has in turn contributed to stagnant home values.

And while I agree that everyone deserves a decent education, I’m not sure that any student deserves to have 2-10x as much taxpayer money spent on their education vs. other students who might be equally deserving.  Have the current programs been tested for outcomes?  Are we really getting results for the money spent?

I think we have a right to know the facts, not just anecdotes.

What gets measured, gets managed.

Me:

I would argue that it is not at all clear that they are cutting regular ed to pay for special ed – I would argue (and the data supports) that taxpayers have been paying in less than they once did and so has the state. I would argue that the town has made good investments in infrastructure and open space and that those have also appeared on tax bills that have been going up. I would also argue that more teachers, more tools, more differentiation in an inclusive classroom make it a better educational environment for all learners – special ed money does not just help special ed students, and much of the special ed money comes from the state and federal government when they reimburse the school district for mandated services.

So, you’re looking for return on your investment? That would be an interesting thing to measure. MCAS scores are public. Mayberry does very well. Student progress on education plans is data driven and tracked – alas, individual citizens are not entitled to stories or anything else about special education children’s performance so that they can measure up to a taxpayer’s idea of worthiness. Maybe the kids who go into service jobs cleaning hospitals and schools and office buildings aren’t worth teaching anything more than how to fill out a time card and open a bank account. Those folks only deserve a decent education, not a good one, am I getting this right? At what point is someone useful enough to justify the taxpayer investment? When they get into college? When they graduate? When they get a job? When they start paying taxes? When they are wounded in battle? Or maybe I can leverage the value of my bright, typically developing children against the one with the developmental delay so the tax investments even out. Would that be satisfactory? 

I would be hard pressed to measure the value of the experiences shared by the drama guild kids about their inclusive drama class (they took their views to the school committee, clever children) or the unified track team when they won a team gold medal last spring. Yes, that’s a story – and a measure of success. Winning. For some people winning counts. For some people, being welcomed on the field with and by their typical peers is the victory.

But, lucky for most of us, the fact is no one gets to decide which child is worth more than the next. Our society and our public schools are built on the foundation that everyone is entitled to a good education whether they “deserve” it or not. Just because we are fortunate to have the money to pay taxes to fund good schools doesn’t mean we get to pick and choose who is worthy of a public education. We rely on good public servants, administrators and teachers to help us decide the best way to provide the best education we can. An open and ongoing dialogue with those people on a regular basis is the best data you’ll find on how our schools are doing. How you view success is entirely up to you.

Respectfully,

Me

Resident:

To further clarify, my biggest question is abut the quality of services that kids in special ed are receiving. From what I’ve heard (could be hearsay, but from very impassioned parents), considerable amounts of money have been spent on school mandated special ed initiatives that have actually HURT kids who needed help and made their lives and educations worse, not better.  I would absolutely classify that kind of spending as “waste” that should be eliminated.

Me:

There’s no way to address any of the issues you now raise (I don’t recall quality coming up at all before) in this venue. School mandated services that hurt children? The district has a state mandated Special Education Parent Advisory Council that exists specifically to address these kinds of concerns (and it’s totally free!). Please ask the parents involved to contact one of the officers to get answers and advice about how to understand or file a complaint about any programs that affect their children or their schools. SEPAC is there to help: website link to SEPAC

In the meantime, I wouldn’t throw the baby out with the bathwater based on heresay. 

Me

Resident:

I’m sorry but I don’t see how this wins my vote to raise taxes at town meeting.  I started out being totally in support of raising the funding the schools, but having some questions based on what I had heard and read about the budget (including the audit which stated pretty plainly that most of the budget crisis has been due to poor tracking of rising special ed costs).  The answers I’ve gotten here have turned me pretty strongly against this initiative.

It doesn’t sound like the supporters of this initiative are looking for any accountability from the schools at all….from your statements it sounds like you think they are doing just fine, that taxpayers just aren’t paying enough, and that the schools shouldn’t have a good handle on what their budget really is and how it is likely to increase in the future.

I’m sorry, but I prefer to think carefully about every vote at town meeting that raises our expenditures.  And I believe we have a right to know how well the system is working since we are being asked to pay for it.

Me:

I am not trying to win your vote for anything, but I’m doing my best to be sure that there are as few people as possible misinterpreting the facts in the same way you seem to be. 

A failure to track rising costs does not mean that those costs are unreasonable. Working to contain rising costs is a goal but the mandated nature of special education costs puts many of those costs beyond the District’s control. Again, the error was that the District failed to budget for those (and other) costs because the business office failed over the course of two years to inform the school committee that the budget was not written to accommodate them. There are some costs that can and should be contained but it is wrong to correlate the budget crisis with needs the special ed kids themselves, which is what you have done by implying that some kids are more worthy of our tax dollars than others. 

I never said they were doing just fine but I did say that there is no evidence to be found in the Walker report that they overspent on special education – it was me who said that transportation is an issue. I never said they deserve a blank check but they deserve more than they get now – according to the School Committee the numbers the towns have been underpaying for years because the district leadership was not forthcoming about what the real expenses were. There absolutely must be more transparency in the process overall but I will say as many times as necessary that this budget crisis was not created by unnecessary special education costs – it was created by a failure to report, budget and pay necessary expenses (and other costs) properly.

Respectfully,

Me 

I found this exchange maddening and instructive, because I think it presents a lot of issues that face a lot of school districts right now. Our budget crisis came from a rather unique set of circumstances, which I try very hard to explain, but perhaps not quite hard enough to convince this resident.

1 April 2014

Try This on For Size: April is Autism Understanding Month

IMG_7944

Hugs stave off the winter chill during a bittersweet goodbye. See you in springtime.

 

First they called April Autism Awareness Month (many still do). I knew I was all too aware. Now they called it Autism Acceptance Month. I know I accept it well enough. But I’m still trying to understand a lot of things about Autism: why it’s such a wide spectrum and whether all of it is autism or just a conglomeration of neurological diagnoses that need be to be sorted out. I also accept is that it will take forever to understand. So that’s the work I am doing this month: trying to develop a better understanding of the things about Autism that still need work, in contexts large and small. I want to think out loud about the issues and questions that society ought to know so that families living with autism are not pitied, ignored or marginalized while we figure out where the many types of people on the spectrum fit, what their gifts are, and how they need help.

IMG_7953April is a good month for developing understanding – and patience. For those of us in climates where winter has us in a death grip, April is the time that we long for the warmth of summer and totally overreact to the emergence of any sign of spring (watching the snow and ice recede, camera in hand, looking for crocuses). April brings Easter (usually) and other rites of spring that signal optimism about the future. April reminds us, gently, painstakingly, that we have more capacity for joy than we thought after a winter in which our capacity for everything joyful has been sorely tested. April is hope. Let’s start with that thought.

7 January 2014

Shelter in Place, Emerging in a Better One

Once you've seen fire on ice, anything seems possible.

Once you’ve seen fire on ice, anything seems possible.

So, I’ve been away from my own blogosphere a while. Sometimes it just doesn’t feel like the right thing to do. The concept of “shelter in place,” made real during the aftermath of the Boston Marathon bombing, really appealed to me over the past several months. The idea of staying in where it is safe so that the world can take time to set itself right before we venture out again. It doesn’t have to be about danger, but sometimes it is about preservation of self. This is what I have been doing – sheltering in place.

But today it seems right to venture back here. Today there is news that is worth sharing, because I can say that investing in hope pays dividends.

In a post last summer, I wondered when it was okay to give aways things that most children outgrow during high school. We all have remnants from our childhood stashed away somewhere (don’t we?), but in the case of our boy we have, well, a lot of things we know that he is not ready to part with. So I kept most of  it. In that process, I took a very long look at the book shelf. The ABC and farm books are long since packed away, but many of the most beautifully illustrated books, picture encyclopedias and easy readers remain. I know he appreciates the images and that they inform both his understanding of a story and his artistic sensibilities.  Still, I very deliberately left the collection of biographies on the shelf next to the head of the bed. I bought them during the middle school years, when they were age appropriate, because they were fact-based, had lot of photos but contained some narrative stretches on highly reinforcing figures in history: Teddy Roosevelt, Abraham Lincoln, Amelia Earhart. He always looks up facts on the internet about these people; I convinced myself the books were still useful, and they look nice (and not too incongruous) on the shelf, too.

IMG_7353I know he will never be in love with books the way I was. I know he will never delight in conjuring places, events and people from a page dense with type. I know that I am lucky that his visual learning style is tailor-made for 21st century digital information. I know all of that, but all of my knowingness didn’t prepare me for the moment when, upon peeking in to say good night, I saw him reach over and slip a book off the biography shelf, open it and begin reading. Reading for pleasure. Reading for information. Reading pages on which there were no pictures at all. Just type. I slipped away unnoticed, afraid that I would interrupt and ruin the moment by making too big a deal of it.

But it was a big deal. It reminded me (not for the first time) that I kid myself that I know more about him than I do, and that creating limited opportunities for him will yield limited results. I won’t be placing Ulysses on the shelf anytime soon, but I’ll be upping the ante on a lot of fronts based on this moment. It also reminded me that one of the reasons that I felt the need to shelter in place was that the conversations that swirl around the senior year of high school are all about competition and achievement. Conversations that lead to well-meaning questions that I don’t necessarily want to answer. That simple act of opening a book means more to me than an 800 SAT score, but there aren’t many who would understand that, and I am past the point of wanting to explain it (and yet here I am, explaining it).

I need to leave more books on the shelf, more doors ajar, more options on the table. We don’t have to have anyone’s life mapped out by May.

But I had to know something. The next morning at breakfast, I asked him what he read before bed last night.

“I was reading about Abraham Lincoln,” he said.

“Were you looking for something specific?”

“Yes, I wanted to know how he met his wife, Mary Todd.”

Relationships. He was reading to learn about relationships.

30 July 2013

The Miracle of Enough Sleep

SONY DSC

It is a breathtakingly beautiful early summer morning – sunny, cool, dry – and for once I do not have mixed feelings about being awake to appreciate it. I am not a morning person. Never was, never will be. I am awake because I have to be but I can also say that I have had enough rest. This is new.

Last Friday night I slept for 12 hours. I don’t think I’ve done that in the 20 years since I had my first child. We had an early dinner and I fell asleep on the sofa, moved upstairs to bed at 1am and then woke up at 8am. I was aware of bedtime routines and kisses good night but everyone seemed to know what they were supposed to do and follow through. After a week of 5-6 hours a night, that sleep was not only needed, it was transformative. I faced a busy weekend not with fantasies of a nap but with energy and enthusiasm and a sense of emotional flexibility that often just isn’t possible.

SONY DSCI thought about the parents who have gone for years without even those 5-6 hour nights I’m whining about, and I am thinking about them again this morning. Sleep deprivation plagues many people for many reasons. For those who are awake because they have a sleepless child who requires constant supervision, the exhaustion is complete and relentless. Even on nights when the kids manage to sleep through the predawn hours, parental eyes pop open anyway, expectant of the footsteps that may or may not patter down the stairs. Knowing that the child is asleep doesn’t mean going back to sleep for another hour or two. Usually, worry fills in until they do wake up. It’s a hard pattern to break.

For those of us who face the day bleary eyed and worn out, I hold out for the promise and possibility of the restorative power of sleep. We don’t create sleep deficits on purpose – many children on the autism spectrum have intractable sleep issues and keep parents up until all hours, and we use the few hours while our kids do sleep to do things they can’t get done when the kids are awake. It’s just as important for our kids that we are rested as it is for us – people who’ve had enough sleep have more patience and make better decisions. If you can find a way to accomplish that magic 7 hours of rest, it is worth striving for.  Jane Brody wrote an informative essay on the health risks posed by sleep deprivation – it’s good tool for advocating with family and caregivers to let you cobble together a longer night or a decent nap.

SONY DSCI can’t blame autism for my sleep problem entirely. My boy is a better sleeper than most; it is the other obligations (obsessions?) and the worry that keep me awake.  I enjoy the quiet, peace and dark of late nights. I love being awake when everyone else is asleep. Books and movies are more fun in the dark. For years I sat in the dark on the floor of my boys’ room, waiting for them to go to sleep. As much as that process was driven by necessity, worry and confusion, I genuinely loved those moments sitting (sometimes writing) by the glowing night-light and waiting for the steady breathing and gentle snoring that arrived with their slumber. By the time I tiptoed out, no matter how crazy the day had been, we were all in love again. I wanted to savor that feeling and not go to sleep right away myself. I needed some time to wallow in the normalcy of sleeping children and talk to my husband uninterrupted. Still, there were times when I konked out on the floor before they did.

One gift of adolescence is that it brings kids who sleep in, when school allows it. This break in our summer program leaves my boy in bed at 9am still asleep. I never dared to hope there would be a time when he would master a self-directed bedtime routine at reasonable hour and sleep in on a sunny morning, even with sun streaming through the skylight directly on his bed. It might not sound like a miracle, but in its way it is. It gives me time to write this, time to think up some structure for this unstructured day, time to appreciate the breeze though the open windows after a week of hot and humid weather.

Peace of mind and enough sleep – I don’t think I can have one without the other, and having learned this lesson (again) I am going to try not to forget it.

PS: This is my 100th post. Woot.

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16 June 2013

Happy Father’s Day

Taking walks is a Dad-driven activity that varies in popularity among his children.

Taking walks is a Dad-driven activity that varies in popularity among his children.

There are a lot of ways to be a good father. I think the stereotypes around fatherhood are even more constraining than the ones around motherhood – and it appears to be particularly tough on Dads with kids on the spectrum because ASD kids often don’t hew to the traditional mold of father-son relationships. I’ve heard many stories of families with Dads who couldn’t cope with a child on the Spectrum, but am happy to report that I don’t know many of them. Most of the Dads I know have stuck with their families and done their best to support their kids and spouses through this unprecedented time in history when autism went from obscurity to a household word in front of their eyes.

In this world of Dads whom I have seen rise to the occasion of ASD in their lives, my own husband stands head and shoulders above them all in his devotion to, compassion for, and understanding of our boy. He understands what it is like to think in pictures, to read the emotions in a room without need for dialogue, to focus relentlessly on a single goal. He has supported me in my many unconventional pursuits down new paths toward better health and treatment, and sometimes adopted the treatments for himself. He appreciates the gifts of all of our kids, knowing them in a way that is decidedly 21st century even as he revels in a kind of Ward Cleaver image of fatherhood. He plays video games and likes to go on vacation to places where you dress for dinner. He loves Christmas, hates command performances, and requires infusions of salt air and extreme weather on a regular basis. He is loving, stalwart, industrious and hilarious in ways that only those closest to him can truly appreciate. He belongs to us, and we to him, and there isn’t much more you can ask from a Dad than that.

13 June 2013

Developmental Dilemma: What To Keep

Part of me thinks that no one should ever have to outgrow Toy Story.

Part of me thinks that no one should ever have to outgrow Toy Story.

Ever since the 18th birthday earlier this spring, I’ve been in a state of emotional turmoil. It’s only a slight exaggeration. Now I try to make some sense of a teenager’s room that runs the gamut from Winnie-the-Pooh to Scooby Doo with everything in between. It’s a collector’s dream and a parent’s nightmare. I’ve learned the hard way that throwing the wrong thing out means I will be hounded eventually to replace it – it could be five weeks or 5 years from now, just long enough to make what cost me $1.99 in 2003 now cost $67.99 on Ebay today. I know parents who have purged their house of everything Thomas and Pixar to help their kids become adults but my problem is that I really am loath to replace Toy Story with the Man of Steel. To me, that’s just another kind of arrested development. More importantly, he’s not interested in that stuff – he sleeps soundly through superhero movies on a regular basis. He loves what he loves.

IMG_4800And the books. Which ones will he ever read? How can we know what will prove useful or interesting, just by waiting patiently for him to notice the ones placed where he sees them every day? To get rid of the easy readers seems mean, to get rid of the more advanced books seems pessimistic.

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Will he look beyond the action figures to the books behind them? Maybe.

Downstairs are the bins of paperwork that requires filing or tossing – one for school, one for insurance, one for general ASD stuff, one for transition, one for keepsakes and artwork that show developmental progress, or the lack thereof. But I only end up weeding things out I know are redundant – I just don’t know when a school or a court will need to see what we have and I’m afraid to get rid of something that could be a key piece of evidence of … I don’t know. And every bin or toys or papers brings a flood of memories and emotions that don’t want to stay on the shelf where I keep them. I am trying so hard to focus on the future that sifting through the past seems like a bad idea just now.

So I guess I’ll stick with The Wizard of Oz and The Sound of Music – at least they are live action – and wait a bit longer for the moment when we can at least move some stuff up to the attic. And we will know soon enough what schools, doctors, agencies and lawyers require and then, maybe then, we can let go of at least some of the past.

Remember Cats versus Dogs? They’re all in here.