The Transition Year is Here

Christmas is over; time to move on.

Christmas is over; time to move on.

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

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

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

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

Bring it on.

All Muddled Up

Waiting for the fog to lift, literally and figuratively.

Waiting for the fog to lift, literally and figuratively.

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

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

Keeping my distance.

Keeping our distance.

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

Aware Enough

A version of this post appeared in April 2012.

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

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

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

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

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

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

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

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

My April Fool

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

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

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

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

Autism Transitions: Parental Developmental Delay

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He sleeps on.

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

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

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

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

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

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

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

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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