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.

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.

Snow Day: Living by Snowlight

Breakfast by snowlight

Breakfast by snowlight

I love the quiet of a house buried in snow. Skylights are blanketed so it’s a little cave-like and the only light is what comes in from the blizzard outside. And because it’s March there is a bit of warmth to the white, and the assurance that it will all begin melting tomorrow. The bitterness of winter is gone, in ways I cannot begin to explain right now (it is a snow day after all – we have some serious laying around to do). The boys are happy, and when Dad and daughter arrive later everyone will be home and “tucked up tight.” Those small phrases pop into my vernacular all the time (scripted speech? Probably).

by Gail Haley

by Gail Haley

The older the children get, the more we seem to quote the books we read to them when they were small. Perhaps this one most of all: A Story A Story – let it come, let it go.

The Fixit Playlist: 30 Songs that Reset My Brain

Taking a sunset drive

Taking a sunset drive

A few years back I was riding with a friend and fooling with the cd changer in the car. Rage Against the Machine came roaring out of the speakers, practically ejecting me from the car. “That’s my fixit playlist,” he laughed, “for when I need to reset my brain.” His list included Radiohead, The Clash, all music that would get adrenaline flowing in just the right way for him. I thought it was a brilliant idea and started compiling my own Fixit playlist. Being me, I came up with several lists and for years now have been burning Fixit cds with dates on them to make sure I knew when I had finally hit on the real deal. The criteria were that it had to improve my mood under any circumstances and when played the second or third time I did not start skipping songs to get to one that worked – they ALL had to work so  could leave it in the car player for days (weeks) and at time and know I had access to the necessary music. I drive almost every day for long distances and do much of my best thinking in the car, so the music component is key. Someone in our ASD support group once noted, “I do all of my best crying in the car.” It’s true – the car is where we pull it together, and we need the right music to get us to the our next destination (school, doctor, therapist, IEP meeting, liquor store, etc.) in the right frame of mind. A few weeks ago I realized that I was always reaching for the April 2012 disc, so here’s what’s on it (with a few add-ins because even that one is missing some key songs).

This is my list. It’s not about taste, era, nostalgia, or identity. It just works. What’s yours look like?

I started to put in links for the individual songs but it was clear that many of them would not lead to the actual music, so I put in links to the artists instead (and, as an aside, some of these official websites are really creative, really cool or really hilarious).

Saturday Moment: What Are You Going to do With Me?

Dinner out earlier this week

Dinner out earlier this week

It’s the end of one crazy week and the start of another. We’ve had almost every kind of moment – panic attacks, unrequited love, dancing for joy, teenage rebellion, violations of personal space, bursts of creativity, and early morning hugs before school that reset our relationship from whatever happened the day before. And today an exchange – scripted, yes, but genuine all the same – that is both typical and necessary following transgressions large and small:

Me: “You need to stop ______, please.”

Him (hands on hips, smirk on lips): “What are you going to do with me?!”

Me (deadpan): “Love you forever.”

Him (nodding): ” That’s what you’re gonna do.”

Yep.

A Direct Line to Heaven

When our boy was small and we were still trying to figure out what was happening with him, I often said that he was a little closer to heaven and to hell than the rest of us. He was – and is – so much more in touch with his emotions than with the practical world and it magnifies both his joy and his pain in any given situation. As one can imagine, it is a gift and and a curse, but as a parent I place much more value on his gift for presenting vivid, unvarnished snapshots of the most fundamental joys and sorrows in life. This is never clearer than when there has been a death of someone close to him.

He recently lost a classmate to a short, intense battle with leukemia. It all happened while he was at camp, and this turn of events still dominates his re-entry into home and school. He has panic attacks most mornings at school, causing physical and behavioral distress, and we enlisted the help of the school adjustment counselor and the nurse to address his worries.

Earlier this week I met with his teacher and behaviorist who told me that his friend’s parents would be visiting the school to accept a big card that many students from the high school signed honoring their lost classmate.  Leading up to this, our boy was writing down his feelings in a letter to his friend JM and they showed it to me – it was phenomenal, full of apologies for being away while he was sick and a long list of people who miss him. He is really working things through with the counselor, which seems to be making a difference, because he appears to be having fewer the panic attacks. They said that he printed out a photo of JM and drew a gravesite on it. Sometimes he puts his hands on the picture and prays to him (which makes the adults in the classroom cry). When he came home from school that afternoon he sat with me and showed me a bracelet JM’s mother gave him with JM’s name and dates on it. He said that it was good to see his parents and to know that JM’s mom misses him too. I asked him if he cried. He said yes.

We went to the dump that same afternoon and on the way back we passed our church (we do not attend often – singing and crowds, you know) and I told him the church was empty and asked if he wanted to say a prayer for JM. He said yes.

We went in, and I reminded him about the presence of the Holy Spirit and about genuflecting and then helped him say a couple of prayers – he kneeled and held his hands in perfect position; so earnest. I asked if he wanted to go or stay and say some of his own prayers. He said stay. He told JM that he was sorry for missing his funeral and that he hopes he is happy in heaven. Then he closed his eyes, bowed his head and put his hand over his heart and said very quietly,

“In peace. In peace. In peace. In peace.”

It was as transcendent as anything I have ever seen in church. He was quiet for awhile and then said he was ready to leave. I asked him he he felt any better. He said yes.

As we got in the car he said.

“Boy, I really can’t wait for Halloween.”

Why?

“So I can see JM’s ghost!!”

I couldn’t help it, I burst out laughing.

“Was that a funny thing to say?”

I asked him if he thinks ghosts are real.

“Noooo. But I still can’t wait for Halloween.”

I asked him if he knows that I am totally in love with him.

He said yes.

“I can still smell the look of it.”

This was our boy’s observation as we pulled into the drive thru at McDonald’s yesterday. The fast food Mecca is the bane and savior of many an autism parent’s existence. I wish I could say that I took him there only because after 7 weeks of camp he deserved the french fries, but the fact is that after 7 weeks of him at camp plus a college drop-off I craved the Big Mac even more than he did the fries. I knew we would both be sorry in a few hours but we had both been on our best behavior for so long it seemed a minor transgression.

And the phrasing of his remark may not be grammatically correct, but it sums up perfectly the mixed feelings those of us who still go the McDonald’s (oh, come on, you know who you are) have about it – that smell and the very act of pulling up to the window are a sensory memory none of us ever forget. If you have not heard Jim Gaffigan‘s riff on McDonald’s, you owe it yourself to go here.

So, contraband procured, our boy clutched the bag and said, “Shall we wait until we get home?” and then immediately began to eat them – longest ones first. My favorite part (other than the Big Mac) was, as I watched him munch out of the corner of my eye, I asked him to share a fry with me – and, as usual, he gave me the shortest one he could find.