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.