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.

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.

Saturday Moment: I Detect a Theme

The chase is on

The chase is on!

I don’t know why it is that we get so tired of some things while others endure. The excitement of chases has been there since the first game of tag in the toddler days. It is a cumulative process; we watch, do and draw the same things over and over year after year, just adding details and getting better. A few years back there was an Open Season for Rabbits and Ducks sign nailed to a tree in our back yard. I love that he added the latin name for Wile E. Coyote – he really empathizes with him even as he delights in the Road Runner’s narrow escapes. “That poor coyote, he keeps getting killed, and that road runner is just far too fast.” There’s a metaphor in there somewhere.

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.

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.

Did We Do Something Right?

The lesson learned every day? That we don’t take the blame for what goes wrong and we can’t take credit for what goes right. We tried to accept a long time ago that most of what happens in life is out of our hands – and yet…years of data collection and analysis have forced us to look at evidence and then try to predict outcomes. We are compelled to try and control whatever is within our grasp, no matter how slippery.

So now we have this explosion of language and introspection and creativity and we cannot resist the urge to ask, “Did we do something to make this happen?” Maybe. Somewhere out of the many new situations that life gave our boy, a window opened, a breeze blew through and the seeds of success landed and took root. We created some of the circumstances (camp) and others decidedly not (the loss of JM) but at this moment we see a sense of strengthening purpose and engagement and the hope it brings leaves us blinking in the sunlight.

We know it might not last in its current state – I don’t think we will ever be free from regression. And we all regress sometimes, learning from those same mistakes again and again (Why did I eat that? Why did I say that? Why did I drink so much of that?). But when fundamental skills – like speaking in paragraphs instead of phrases – ebb and flow we find we will do anything to keep that window open and the breezes flowing knowing full well we could wake up one morning to find it closed. The prospect of losing something so hard won triggers every possible human response: hope, fear, optimism, cynicism, love, faith, superstition, luck, magic, and faith – all tempered by what can only be called PTSD. The shock and awe of those early years can return in an instant when he looks at me and his eyes are blank and he is seeing only what is inside his head.

But thinking about it now won’t make it happen – and it won’t fix it when it does – so I will be thankful for the gifts we have today and have faith that they will still be there when we wake up tomorrow.

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.