autism

22 April 2013

The April 15 Post That Wasn’t

IMG_4098I was almost ready to publish a post on April 15. I just needed to load the fox photo. But I had an appointment, and on the way home the news on the radio changed everything. Bombs going off in my adopted city on a street I used to traverse every day. I’m still processing  the bombing and all that happened in the days after – me and millions of others. So, after today’s moment of silence I returned to the post I wrote on that day, a day that was already profound for me, even before 2:50pm.

A Different Kind of Marathon.

April 15. Boston Marathon Day. Tax Day. Halfway Point in Autism Acceptance Month.

SONY DSCI bailed on posting every day this month, obviously. Priorities change, and with so many people saying so many things about autism, if I am going to add to the noise it had better be worth it. But on this marathon day there is something to be said about the value of pacing yourself when facing the long haul of parenting. I’ve been following a thread online in which parents share their strategies for separating from their kids for personal time, shoring up their marriages, and finding ways to talk about things that aren’t autism (it’s harder than you think). That conversation follows a number of pieces I’ve read lately in the mainstream media where people without children feel the need to weigh in on the foibles of those who do have children. Too much time on your childless hands, Mr. Bruni? If people without kids are irked by people who talk about their kids a lot, imagine the pique in those who find themselves surrounded by the misplaced angst of parents struggling with sports team playing time or ivy league SAT requirements. And it’s not so much pique really as it is having absolutely nothing to add to such conversations. It makes a better listener and people watcher out of me, for sure, but as the years go by whatever skill I had for small talk sort of waxes and wanes with wherever we are with our boy. Sometimes it seems to have atrophied and I almost don’t trust myself at parent functions for my typical children anymore because the urge to say something truly inappropriate (but funny, I assure you) is almost overwhelming. It’s like the vegan invited to an event at a steakhouse – just because the parameters of your life are different you don’t get to ruin it for everyone else. If it bothers you that much, stay home, right? Wrong. Choose events wisely, but go, and bring your empathy with you.

***

So, I left writing this post to do work things and then I checked back on the parenting thread I was talking about, and was validated and educated by what I read there. People have made some hard choices to keep balance in their lives and create independence for their children. It made me think, and so I went and sat in the rare spring sun to contemplate the long-term plan. Out of nowhere (kind of) appeared the boy. He wrapped his arms around my head, kissed it and said, “Are you worried about something?” He wedged himself into the chair with me, leaned his head on my shoulder, and twirled the hair at the nape of my neck with his fingers the same way he did as a toddler. I couldn’t answer him. We heard a door open – saved by the Dad, taking a break from work. We scrambled upstairs and while I crossed the room to talk to Dad, the boy looked past us out the window and pointed (now he points!):

“Baby foxes!” He spotted them – four in all – scampering about, camouflaged almost perfectly against the oak and maple leaves. We would have been too preoccupied to notice, but we found ourselves checking in on them all day as they wrestled and napped, waiting for Mom to come back to the den that sits just up the hill from our house.

He feels ahead of me, he sees beyond us. We have a lot of thinking to do.

10 April 2013

Today is National Siblings Day. Isn’t Every Day? Okay, Maybe Not.

SONY DSCWho thought this day up? Hallmark? Well, it’s a good excuse to sift through the photos, and it’s amazing how hard it is to find a photo that includes everyone that captures the spirit of our brood and still preserves some privacy. I think I found it.

Siblings of autistic children don’t have it easy, and we do our best to recognize their challenges and build some rewards into the process of accommodating the necessary quirks of life with autism. Remember my movie post earlier this week? Access to movies, screens and electronic devices like iPods is exponentially greater in our house than it would have been without autism (I think). We’ve made more trips to the beach, given more nods to everyone’s food preference (a special diet for one person demands more flexibility for everyone, sometimes), and we’ve tried, not always successfully, to give everyone the spotlight at time when they wanted it (sometimes they don’t).

The hardest thing so far is giving each child space from the others when they need it to create their own identity. Sometimes it’s difficult for ASD people with a developmental delay or cognitive impairment to see a younger child grow past them, as it were. And siblings are not always diplomatic in creating the separation that’s necessary for them to grow up. It’s hard to do and hard to watch; everyone involved experiences frustration, anger and hurt. It’s typical for all families to go through this, but as parents it is much harder to keep ourselves from intervening than we expected – we are so invested in the idea of inclusion that we have to remind ourselves that our children need to prepare for a life apart from each other. If we give them the space they need now, we hope the bonds they forged when they were young will stay strong after the angst of adolescence has passed. That’s the idea, anyway.

9 April 2013

Rocking Autism Awareness

Objects in mirror may be closer than they appear

Objects in mirror are closer than they appear

Many high schools in our area have a big rock on which students advertise the latest fad, inside joke, or activity. They scamper in after hours and paint the rock, and this week some of our enterprising seniors painted it up blue. It’s touching. Still, all I can hear in my head is the voice of Charlie Brown on Halloween night as he looked in what was supposed to have been his bag of candy and moaned, “I got a rock.”

5 April 2013

Ten Years On: Revisiting the Magic Pebble

This is an essay I wrote before blogging was invented, composed for someone who was our first magic pebble. I posted it a few years ago on LettersHead, but here is clearly where it belongs. This is for you, K.

We used to read William Steig’s Sylvester and the Magic Pebble every night.  It’s the story of Sylvester Duncan, a young donkey that finds a magic red pebble, and, faced with a fierce lion on his way home, Sylvester panics and turns himself into a rock.  His frantic parents look all over for him, but give up in despair after a month of searching.  They are reunited a year later when his parents lay out a picnic on the rock that is Sylvester, and happen to find the red pebble and put it on the rock.  Sylvester wishes successfully to be himself again and they all go on happily with their lives, saving the pebble for a time when they may need something more than to be together as a family.

Whenever I read this story to our children, I find myself identifying with various characters in the story.  On some days, I am the mother and W. is Sylvester, hidden in the stone of autism, wanting to get out but locked in the by the spell of the pebble.  We are Mr. and Mrs. Duncan, haplessly eating lunch on the rock, wondering how we can possibly go on with our lives when the fate of our son is such a complete mystery to us.  On some nights, the story in my head ended there, with W. still trapped inside the rock.

There are more dramatic versions.  There’s the Harry Potter version where Sylvester the Dobby rock starts hurling itself around, crashing into people and things, a possessed bludger that no petrifying spell can stop.  The wayward rock eventually wears itself out, but only after leaving most of the Duncans’ town of Oatsdale beaten and bewildered.  Mr. and Mrs. Duncan split a bottle of dandelion wine and dream of summer on the beach.

Occasionally, I am Sylvester, trapped inside the rock, wondering how I got there and wanting only to sleep to forget how I got myself into such a spot.  The world moves around me, the people and seasons come and go but because I am a rock and I don’t look like myself no one knows I am there.  I am inches from the magic pebble that will set me free, but I am helpless to touch it or even be sure that it is there.  My parents are gone.  I cannot be rescued the way Sylvester was; there is no one to rejoice over my return so perhaps it doesn’t matter whether I am a rock or not.  But just as I warm to my mid-life crisis, I am touched by my magic pebble – it is W., reaching with two fingers to push up the sides of my mouth to make me smile.  And it is M., with a smooch that could bring the hardest granite to life.  And A., too, working her own magic just by reading her own book on the floor next to us.

And there are magic pebble days, days in which someone or something brings our beloved W. back to us.  On these days the story ends just as it should; the boy I see and the person he is inside are one and the same and we inhabit the same world.  The magic is the love we share, in his friends, in the water and sand of the beach, and in the people who work so hard to make the world understandable to him and to make him understandable to us.  These are the best days of all, and as the years go by there are more and more of them, and that is a miracle I don’t need a book to help me understand.

4 April 2013

Putting Autism in its Place

Written by me on my non-autism blog. Clearly, I’m not that good at compartmentalization.

LettersHead

Autism Acceptance Month includes Light it Up Blue day, and people find themselves reminded, pummeled and delighted by blue lights everywhere. It’s hard to know how to feel about the hoopla when we try so hard not to let autism dominate our lives. That’s why I moved my autism posts to their own blog. To be honest, though, those were the posts that got the most hits when I began writing Lettershead back in 2009. Much as it would lovely to be vastly popular and widely read, Lettershead is about trying to keep some perspective and focus on ideas that are not directly informed by autism.

Autism casts a long, blue shadow, however. Sometimes it feels like I spent my early years escaping the shadow of alcoholism only to turn and face autism. It was good preparation, as it turns out. An anxious person by nature, living with…

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3 April 2013

Wrapping Our Heads Around the BRAIN Initiative

What part of his brain made the President make this face?

What part of his brain made the President make this face? Photo credit: AP

Yesterday President Barack Obama put his money – and ours – where his mouth is. He went beyond the obligatory declaration of World Autism Awareness Day and announced a 1 billion dollar research project called the BRAIN Initiative, which stands for Brain Research through Advancing Innovative Neurotechnologies. It’s brain mapping, and it’s a good idea. He said, “As humans, we can identify galaxies light years away, we can study particles smaller than an atom, but we still haven’t unlocked the mystery of the three pounds of matter that sits between our ears….So, as a result, we’re still unable to cure diseases like Alzheimer’s or autism, or fully reverse the effects of a stroke.”

I like this for  many reasons, and particularly because it includes lots of hard science but includes funding for bioethical considerations. I am sick to death of the epidemiological studies like the recent one that postulated that women who were abused in their youth are more likely to bear a child with autism (it was funded by the Department of Defense – what’s up with that?). Without dwelling on that topic too much, I’d like to point out that study like that which throws out risks factors for a disorder for which there is no known scientific cause (beyond heredity, which has been established to some extent) is not only unhelpful, it is cruel. What pregnant woman with a painful past will benefit from hearing that the abuse she suffered as a child will be visited upon her child in the form of a developmental disorder?

But back to the BRAIN. Mapping brains raises significant ethical issues and raises the ugly specter of eugenics. Good brains versus less good brains – and who decides what’s good? Who decides what needs fixing? The autism community is so huge and the spectrum covers such a wide range of functioning that it’s impossible to justify any effort to fully eradicate it like, say, polio. There’s a big difference between understanding our quirks and trying to eliminate them. It reminds me of Botox – I am truly baffled that anyone would want to smooth out their crow’s feet, a necessary and beautiful byproduct of smiling. To me, the BRAIN work should develop a scientific understanding that allows us to build a world in which autistic people are empowered, assisted, and valued – not one in which they are genetically weeded out. For some, the brain map will mean finding a way to give them language, for others, it means finding a way to give them work. For all of us, it means hope.

For more information on the BRAIN initiative, check out the White House fact sheet. If it looks good to you, you might want to weigh in with your congressional representatives (House, Senate) and encourage them to vote to fund it.

White House inforgraphic

White House inforgraphic

1 April 2013

Easter Monday, April Fools’ Day, Autism Awareness Month. The Mind Reels.

SONY DSC

Renewal and irony and reality all converging on a single spring day. Melting snow, green shoots, black earth. The extremes of New England’s seasons are the metaphor I cannot ignore.

I tend to roll my eyes on the awareness month for anything, and even more so for Autism Awareness Month because I’m conflicted about foisting upon the world an awareness of what I consider to be our private business. But making the world more navigable for our boy is part of that business and thus I need to try to find ways to use the opportunity that autism awareness month presents without seeming insufferable and needy (good luck with that, I know). And what is a blog for if not for saying something that I think might be worth reading? I ask myself all the time why I do this and most of the time the answer is that I write about it because I can’t not write about it. From my perch, autism awareness is as much about the journey and the humor and poetry borne of the angst and the crazy – it’s not nearly as helpful as what others are contributing to the dialogue, but it’s what I have.

So in a nod to the everyday awareness that we have of autism, I’ll post something every day (an essay, photo, or link to those who are saying it better than I) in April in hopes that something and interesting and good will come of it.

Today, John Elder Robison continues to fight the good fight for people with Asperger’s Syndrome in the wake of Sandy Hook.

14 March 2013

The Mystery of 2009 Returns

IMG_3571

Tonight we went out for an early dinner, and I could not convince the boy to tear his eyes away from the iPod. Usually he will at least look out the window at the cows on the hillside. Nothing doing. He met my eyes and said with frustration, “Mom, I am just too afraid of the world.”

“Why?”

“It’s just since 2009, when I was 14 and I saw the dates.”

“What dates?”

“Here, let me show you.”

He taps gently, furiously, and precisely on my phone, spending a lot of time on the Wurdle app, and then hands it back to me and sighs.

“Never mind, I can’t find it.” But then he takes it back and opens the calendar. Nothing remarkable.

“Dates. Birthdays. Worrying about death.” He hands back the phone and puts his earbuds back in.

Conversation over.

This is the beauty of blogging. I can go back to the summer of 2009 and see what I wrote – because the dates and the fear and this specific kind of withdrawal were all new to us then. But even after reading what I wrote then I don’t really know why all of those fears showed up today or how long they will stay – it could be as simple as the disruption of a half day at school or the disappearance of his memory bracelet from his dead friend. Or perhaps it is the big birthday that is coming up soon – or maybe it’s my worry about that reflected on him. He has my feelings before I do sometimes, I think.

Spring is coming; we’ll figure it out.