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.

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.

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.

The Miracle of Enough Sleep

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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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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.

Reflections and Reminders in a Snapshot

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Everything is so fraught with meaning these days. While I am processing recent events, I at least have access to some words.  I am grateful for:

  • the first truly warm day after a cold and unforgiving spring
  • a track meet filled with happy, cheering teens
  • schools with dedicated principals, athletic directors and teachers who carved out the time and money to create an interscholastic special olympics team that competed on fields among lots of other typical sports teams on this brilliant day
  • the incredible young woman who chased our boy for 800 meters so that he could make good time in his race (until he swallowed a bug and then walked part of the way until he could sprint, triumphant, for the last 100 meters)
  • the teammates on this yellow bus who waved at our boy through the windows on the highway as we made our way home, and
  • the snapping flag at half mast that says that while life has gone on we stand strong in our support for those who still suffer from the wounds of last week.

Never underestimate the power of sunshine and smiles.