Saturday Moment: Going to the Movies is a Contact Sport

IMG_3528We are movie people. When our kids were small they didn’t have special showings for kids and people with autism like they do now. I think it’s great that they do, but we’ve kind of developed own set of tools and rituals that get us through the movie experience. For many years our boy spent every movie happily on my lap, with my arms wrapped around him and his hands firmly over his ears. That was how he managed the sensory overload of a loud movie. When he moved to his own seat he would do one of two things (after eating exactly half of his popcorn and giving the rest to Dad), lay his coat on the armrests and go to sleep half leaning on me and resting on the coat, or put his head on my shoulder and have me put my hands over his ears while he watched. I am in awe his use of sleep as a coping mechanism when he is overwhelmed or distinterested. How many people do you know who can sleep soundly – snore, even – through The Avengers, Thor, Iron Man 2, and 8 innings of a Red Sox Game at Fenway Park?

It’s been a lackluster winter for family movies (with the notable exceptions of Life of Pi and Lincoln, both of which he sat through, riveted and perfect) so we haven’t been in months. Finally, cabin fever drove us out of the house to see Jack the Giant Slayer and this time the boy and I found ourselves watching shoulder to shoulder as I waited for him to lean over and nod off as the beanstalk wound its way into the sky. But the lovely girl and the prospect of romance kept him awake this time, and he kept whispering to me “Do you think Jack will marry the princess? Are they in love? Are they going to get married? Will her father the king approve?” Usually the only questions I get are whether this is a short, medium or long movie, so the specific plot questions and the arm tapping and hand squeezing and his turning my head to look at him when he spoke to me were all new in this setting, and most welcome (but his brother did move one seat down).

If you sit in the front you can put your feet up and no one cares.

If you sit in the front you can put your feet up and no one cares.

But the best part was when the grotesque giants made their first appearance and I instinctively raised my hand to cover his eyes and at the exact same moment he did the same, covering my eyes with his hand. There we were, side by side, with our hands clapped firmly over each other’s eyes, trying to keep each other from being scared. He knew it was funny, too, even as he kept his hand firmly in place until we agreed that we could look at the screen again.

I know it’s a milestone, whatever just happened there. It’s a new level of reciprocity and sophistication, a point at which he now wants to take care of me the way I try to take care of him. It’s what we wanted and worked for but not necessarily what I expected to happen, because at some point expectations get to be counter productive when you are raising kids, whether they are typical, autistic, or anything else. Goals are essential, but expectations just get in the way of seeing and responding to what is right in front of you, and if you are lucky someone will put their hand over your eyes during the scary parts.

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.

A Trail of French Fries Leads the Way

A trail of fries

A trail of fries

I took this photo in the parking lot of the Lurie Center in Lexington, Massachusetts, a branch of Massachusetts General Hospital that serves children and adults on the Autism Spectrum. These are iconic fries, a not-so-secret symbol of what it often takes to get an ASD kid to and through a doctor’s appointment; I can only imagine the tears spilled when they hit the pavement. The clinicians at the Lurie Center are among the best in the world and yet even the skilled and gentle support they offer can’t always extend out into the parking lot where worried parents and anxious kids struggle – sometimes mightily – to fit yet another specialist appointment into their lives.

But with this photo I see and offer up hope that persistence pays off. Not always, not when we want it to, but it is hard for me to adequately convey my joy at seeing these fries and knowing that they were not going to cause me the meltdown we once might have had just seeing them ice cold on the ground. My boy looked at them and remarked, “Someone’s been to McDonald’s!” and then danced – literally, with iPod – toward the entrance. Next to the door there is a wisely placed trash can, which he glanced into and noted, a little somber now, “There’s the box.” Some part of him knew and felt the pain of the child whose fries had met the wrong fate.

It was a lively day in the waiting room, with several families with antsy children waiting to be greeted by doctors and therapists. We recognized one clinician as she came out to greet a child. We knew her from work we did as part of a research group a few years ago, and she delighted at seeing our boy. He spoke politely with her and then began to tease me about what he wanted from me in exchange for being brave about having his blood drawn (more research – that’s another post – and the covet du jour was yet another Scooby Doo movie) that day. I saw her look at him, and at me and as she listened to us negotiate I saw on her face a measure of disbelief that this could be the same boy she knew in 2009. She looked at me and lowered her voice and said, “Do you know how lucky you are?” And even though I said yes, later I had to stop and take stock of how far we have come from our french fries in the parking lot days.  Our challenging times are by no means gone but they are different, and it is best not to dwell on what they are like now – they will return soon enough.

Looking Back in Hopes of Finding a Way Forward.

A parade of sparklers from last summer, about a thousand years ago.

A parade of sparklers from last summer, about a thousand years ago.

I think it is me who is regressing this January. We did a lot, learned a lot, and worried a lot in 2012. I am wiser but much less brave than I was a year ago, having gone from sending our boy away to camp for a whole summer to being reluctant to send him to school for even a day. Sickness and Sandy Hook (not to mention a totally dysfunctional Federal government) make me think we are more vulnerable than ever and while we have a plan (as of yesterday) to get him healthier I haven’t the slightest clue how to rebuild our confidence. We were always wary of the outside world; now the outside world is wary of us. When we ventured out over the holiday season I noticed that I stopped using the word “autistic” to explain odd behaviors – in fact I avoided saying anything at all to anyone about him, and made more of an effort to avoid eye contact. I am ashamed that I want to be invisible, angry that people are spreading ignorance and fear about autism and appalled that I have allowed it to affect my behavior. Still, we go out a lot and, like many parents these days, we do our best to show and tell our children how much we love them. And, quite literally, we hang onto them a little tighter than we used to.

Happy New Year.

When they were handing out Christmas Spirit, he got in line twice

We volunteered to throw the class Christmas lunch at our house and found ourselves in major prep mode. The light snow that had been falling all day put us in just the right spirit. When walked into the supermarket they were playing a snappy version of Jingle Bells. Our boy started to bop a little as he walked in time to the music; I did, too. We bumped shoulders a little and headed toward the bakery, bopping together. I was lost in the moment, having fun.

“Hey there!” Busted, dancing in the store, by the mother of a classmate of my daughter – someone I know well enough to be a Facebook friend but not so well that I didn’t feel sheepish. I threw up my hands.

“Okay, you caught us dancing the supermarket! We are modeling good holiday behavior!” He was bopping off without me so I had to move on, but we left her smiling. When I caught up with him he was very busy at a table piled high with Christmas cookies.

“We have to move these cookies to allow the train to go through!” Among the piles of cookie boxes there was indeed a buried train setup. The cookies were encroaching on the tracks and had dislodged the train from its proper spot. He worked quickly and efficiently, keeping the cookies in neat piles but reorganizing them so they would not interfere with the train setup. He was the spitting image of his father in every wonderful way, so I took a picture to e-mail his traveling Dad and tell him how we’d been caught dancing.

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When I finished sending the mail on my phone I looked up and the teenager who works in the bakery was standing a few feet away, watching us in bewilderment. She had come out from behind the counter to watch us warily and I saw it dawn on her that he was doing a good job, and was improving on what I assumed to be her cookie arrangement.

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He finished up and surveyed his work with folded arms, pleased as punch.

“There! That’s better!” I looked at the girl.

“Is this okay?” I asked.

She nodded slowly, “Oh, yeah.”

And then he was off.

“C’mon Mom, we have to track down that sneaky pizza crust!”

If there is a future in holiday cookie displays, we are in great shape.

Saturday Scooby Snack

I am still amazed that, of all the Saturday morning cartoons from my childhood, Scooby Doo is the one that endured. How did that happen? Someone pointed out to me that the predicable story line is very appealing to kids on the Autism Spectrum, along with Scooby’s goofy, hyper-expressive non-verbal communication. That still doesn’t explain how it seems to be popular with everyone else (although I laugh every time I see the bumper sticker that says “What Would Scooby Doo?”) Anyway, until today the Scooby thing left me mostly exasperated. And then today, after weeks and weeks and weeks of drawing the Headless Horseman he switched gears today and turned to drawing Scooby Snacks. Happy Thanksgiving.

Autism War Story: PTSD, Enemy Invasion, Friendly Fire, Special Forces and a Bill Cosby Breakfast

PTSD

I really don’t mean to be flip, but at least military veterans suffering from Post Traumatic Stress Disorder (PTSD) don’t have to worry that they will open their front door and find themselves back in Iraq or Afghanistan. I don’t doubt that sometimes they imagine this is true, but it blessedly is not. Studies have shown that parents of children with autism sometimes suffer from PTSD and part of that, I am certain, is that we do indeed find ourselves right back in battles we thought we fought and won years ago. When I open a door – bathroom, bedroom, car, store, or school – I can tell you for sure I don’t know what I will encounter. About 90% of the time all that greets me is sweetness and light, but that other 10% is a real killer. The the invasion is invisible until the collateral damage is done, my boy the innocent victim of a war inside his body and brain.

And it isn’t just a child’s distress that triggers the trauma. Doctors, teachers, social workers – they can suddenly bail on us and make us think that we are crazy. They only half listen to the data, so convinced are they that none of a child’s previous experience is valid as we relive these moments and seek help to solve the problem yet again. Condescension has no expiration date.

Enemy Invasion

So without going into graphic detail, my boy has digestive issues that defy simple explanation but his inexplicably weak immune system leaves him vulnerable to invaders of all kinds. He easily avoids the common cold but his gut manages to attract all sorts of problems. The process of obtaining the necessary samples was what triggered the PTSD for me (but not for him, thankfully) – suffice to say that I had multi-sensory proof that there was something in my son that did not belong there.

We have learned over the years that he does not feel or react to pain in the same way the rest of us do – in 2007, he did not feel the pain of appendicitis until it was nearly too late. So when he came to me a few weeks ago and said his stomach was killing him, we knew it was trouble. He was already on more than one medication to ease digestive discomfort that was diagnosed through tests him telling us he was in pain. Photos showed his stomach muscles tied up in knots, even when it was empty. Feeling we could not wait to track down his specialist, we went to the pediatrician, who ordered tests.

Friendly Fire

When the pediatrician’s office returned my call about test results I was told – by an MD who was not our regular pediatrician – that there was indeed something amiss and that it was treatable but that she was “reluctant to treat it because it is asymptomatic in most people.” Even though the other tests came back fine (whew) and my son who does not feel pain was walking bent over from pain, she determined that it was “risky” to treat it. I said that given his immunodeficiency it was my view that it should be treated, but that I would consult the specialist and she agreed that when I got clearance from him she would write the prescription. I looked up the offender found in his sample on WebMD and even this cursory set of clicks told me that 80% of the people who encounter it suffer from abdominal pain. Asymptomatic in most people … or maybe not.

Lucky for us, the following day that we had a routine neurology appointment at the Lurie Center, a Massachusetts General Hospital-affiliated practice which specializes in serving families with developmental disabilities, and autism in particular. Our gastroenterologist is based there also, so I knew I would at least be able to speak with his nurse. I asked the pediatrician’s office to send our test results there ahead of us. During the drive to the Center my cell phone rang. It was our regular pediatrician calling to confirm that I had heard the test results and to say that they had faxed them to the Lurie Center. I preface this exchange with the fact that we really do love our pediatrician, who, in the past, has been collaborative with us as we navigated our son’s health maze.

He told me, “We really would prefer that you have the Lurie Center write this prescription because, well, it’s very controversial.”

“I think it is a good idea to consult them but I don’t understand why it is controversial to treat the only thing that the tests found wrong with him, especially knowing that he is vulnerable to such things,” I noted.

“Well, we would really prefer that they handle it.”

“I’ll let you know what they say. Thank you for sending the test results.” I hung up, confused and angry. I spent the rest of the drive wondering what I would have done if I didn’t have a team of specialists 30 minutes from our house.

Special Forces

In the context of the neurology appointment, I explained our dilemma and we went over the test results. This wonderful doctor typed up the whole story as we talked, took the test results, and said she would track down our gastroenterologist, who, it should be noted, is so in demand that he is nearly impossible to find on short notice. The man – so delightful in every way, a joy to work with – is a whirling dervish. But the intrepid neurologist returned a mere ten minutes later with marching orders.

“How did you find him so fast?” I asked.

She smiled at me over her half glasses, “It took three hospitals. I never give up. It’s a good thing I did find him. He says to treat immediately because this is known to trigger colitis and once it does it can’t really be reversed.” She called in the prescription for the same medication the pediatrician’s office had demurred on.

Within 48 hours, the pain was gone. Still, based on what I see now I can’t be sure we avoided the colitis, but we’ll have to wait until the treatment is complete.

I have many stories like this one, and I have been reluctant to tell them because they involve arguments with doctors, whom people want to trust, and my winning the argument, which sounds smug and self congratulatory. Also, most of them happened years ago and I didn’t really want to relive those chapters in our lives. I shared our story with Dr. Martha Herbert for her book, The Autism Revolution and told myself that I was done. But here it is, 2012, and we’re living it again. We are still fighting the same battles inside and outside my son’s body. I had begun to think that mainstream medicine was catching up with us, taking the journey with us and developing an understanding of how complicated autism can be. But here we had symptoms, conducted tests and an identified a pathogen and treating it was still considered controversial because my child is autistic. This isn’t even the full story but suffice to say that I shudder to think what might have happened if we had not had a team of specialists (that took me ten years to build, one doctor at a time) to back us up and get to the problem and treat it quickly.

And when the dust settles we will need to rethink the future and life plans in light of the reality that he may never truly be healthy enough to be as independent and high functioning as we know he can be when he feels good.

The Bill Cosby Breakfast

Meanwhile, the rest of my family had not lost their appetite the way I did and were, understandably, interested in eating. By that Friday we were pretty much out of food for breakfast – no bread, no cereal, no time for eggs. My younger boy usually eats whole wheat bread toast with Nutella on it. A quick read of the Nutella label reveals that aside from containing nominal protein it is mostly sugar. I remembered the Bill Cosby routine from the 1980s where he gave his kids chocolate cake for breakfast because it has milk and eggs in it and decided to roll with his logic. I served French Vanilla ice cream for breakfast. Given all of the detailed explaining he had to witness as we helped his brother, it seemed like the least, and most, I could do.

The Nightmare Before Election Day

I am standing in the same place this photo was taken. My boy has his back to me, motionless, on this side of the blue-tarped wood pile. On the other side is a grizzly bear on its hind legs, paws up, teeth bared. As I search for a weapon unidentified people around me are telling me not to do anything, that it will be okay, but I keep looking for something to hit it with. Whiffle bat? No. Badminton racket? No. Umbrella? No. I run down to the garage and grab the push broom. I run up the hill and around the house and as I swing the broom over my head the top of the broom flies off and only the stick is left. I see the bear turn toward me, I see my boy turn toward me. I swing.

A Different Kind of Storm

Hurricane Sandy may have passed, but clouds remain on our horizon. I’m not yet ready to post about our boy’s ordeal over the past couple of weeks, but as we stumble through the second day of weather-related school cancellations I see a furrowed brow and a short temper that prompts me to warn my younger son to cut his older brother a wide berth. Other families face much greater challenges from aggression than we, but I am so conflict-averse that even the rough and tumble of typical adolescent boys sets me on edge. We are all off kilter from too much TV storm coverage and howling wind and pouring rain, followed now by creepy cloudy silence and listless lack of routine. We know we are fortunate to have the power on and the trees intact – it wasn’t our turn this time but who knows what the winter will bring now that we have used two of our snow days.

We read on Facebook about some families taking delight in the drama of storm prep and others – the ones with kids on the spectrum – wary of how no power or school might unsettle their kids. We are somewhere between. My boy slept in the basement last night to protect his trains and animals from the perceived threat of the storm – his strong protective instincts run from cutting trees with Dad to carefully tending to his stuff: the Thomas trains stored in their sheds and Playmobil animals in the barns – even the portable DVD player that is the Sodor Drive-in theatre tucked safely away. Camping on the couch in his sleeping bag is part of what makes him such a beast today even though he came upstairs at dawn and finished his rest in our bed after Dad went to work, his feet looking for mine while he fidgeted in his sleep.

And as I write I hear the boys talk in warm tones and the sun emerges to cast a brighter, wintry light on wet fallen leaves and bare branches. The clouds are expected to come and go with maybe one more wallop of rain from the backside of the storm. We’ll proceed cautiously through today and look forward to the routine of tomorrow – which, I now realize, is Halloween. Oh boy.

Who Could Ask for Anything More?

So. It’s a picture perfect autumn day and we are listening to Terry Gross on Fresh Air talk with Michael Feinstein describing his new book/cd about Ira Gershwin. Great program. They play a clip of a radio show in 1933 with Rudy Vallee and George Gershwin chatting with a little piano playing, followed a little later by a second clip of Ethel Merman singing “I Got Rhythm.” Our boy has been next to me in the car the entire time, tapping away on his iPod and soaking up the October sun; it’s been a long day of doctor’s appointments. The Merman recording, Feinstein explains, is from a tribute to George Gershwin that took place just after his death from a brain rumor at age 38. As Merman approaches the bridge in the song – “Who could ask for anything more?” – the boy turns to me and asks,

“Was this right before the Wizard of Oz?”

“I think so!” I reply, but when I get home I look it up because I wasn’t listening that closely. He was right. It was 1937. Oz was released in 1939. The Fresh Air broadcast made no reference to that film or its music but only (and ever so tangentially) to the composers who wrote some of the songs for it – Harold Arlen and Yip Harburg. The only other clues to the era might have been the melodies themselves and the accents – the Brooklyn/Boston/vaudeville kind of patter – both Gershwin and Vallee have voices that sound very much like Ray Bolger, who played the Scarecrow in Oz.

How is it – how is it – that some one who is not supposed to be adept at inferring anything can infer himself right back to 1937 at the sound of a radio broadcast and a familiar accent? Auditory processing deficit? Not today. Fear of music? Not today. Trouble making connections? Not today – at least not at this moment.

During the course of this busy day I jotted down at least a half-dozen moments that are worth writing about, but this is the stunner because it reminds me for the umpteenth time that , in our lives, autism creates so many more opportunities than we give it credit for. They are random, yes, and we don’t always know what to do with them, but they’re there, waiting to be noticed, valued and put into context. It’s kind of like a treasure hunt, every day.

Who could ask for anything more?