Toward a barrier-free heart

It’s been quite a week. Ben spiked a fever Tuesday night and was wakeful all night while it ran its course. Wednesday I had a meeting with Benjamin’s team at school: the teacher consultant, both his pre-school teachers and his occupational therapist. What I heard was daunting. Adaptive clothing to soothe his need for sensory input, his constant movement and challenges. His difficulty with crossing the midline in body movement and participating in group songs or movement. In spite of these things, I also heard that children are drawn to him and want to play, that his verbal skills are so good he teaches the class new words, that he negotiates well when he can hold his anger in check. Sleeping fitfully the night before did not make this meeting any easier.

From there, I picked up Benjamin and went to the pediatric ophthalmologist. While we were waiting to see the doctor, Ben surprised me by writing an “E”. He’s been making a "B" for a couple of days, but I didn’t know he knew an “E.” The eye exam revealed a stunning fact, however, he is far-sighted, and with a huge difference between his right and left eyes. The doc said in kids they sometimes don’t suggest correction, but he said with Ben’s exam, it would not be wise to forgo glasses. He said he really can’t see much up close.

From there we went to the optical shop and picked out frames: unfortunately there is not a model which is unbreakable and unlose-able. That evening, as if the simple diagnosis helped him, my son succeeded in writing his whole name, BEN, on his chalkboard in his room. This was a huge accomplishment, and in fact was an IEP goal for the end of the year!

And then we had a consultation as a follow up with the FAS clinic folks. More evaluations are needed there: the dreaded ADHD inventories came out, then a neurological consult was recommended, and finally a genetics referral. On the way back from that meeting, Ben was talking about Polar Express and said this: “What comes out of Polar Express’s funnel is smoke, actually, not steam, Mom.” He then continued by patiently explaining the dynamics of crossing the track covered with ice in such a way that the “locomotive” did not drop through the cracking ice, complete with hand gestures which would have rivaled the most expressive Sicilian.

Sometimes it’s hard to remember he’s only four years and nine months old.

I have been awash in conflicting emotions, emailing friends about it because I’m too emotional to talk on the phone about it all. I am by turns angry with his biological parents and sad that his first mother was so gripped by addiction to alcohol that she couldn’t stop bathing his developing brain in ETOH. I won’t be able to protect him from ridicule because he is different from other kids, then I realize that’s a projection more about me than him. I endlessly replay the parade of experts we met this week and the counterpoints after each meeting—the gems of Ben-ness set against each frightening diagnosis. He managed to have a very big victory at each time I thought I was hitting bottom, buoying me and reminding me that Being Ben is a mystery which is still unfolding, full of potential and unexpected gifts which defy measurement by the experts.

Benjamin has gifts he was born with which balance the burdens his pre-natal life placed on his shoulders. We are blessed with good friends who gave me realistic and hopeful feedback and support, offering to answer the phone whenever I needed to talk, planning visits to Ann Arbor, reminding me that I need to reach for my own oxygen mask before I can help Ben breathe.

One of those precious friends offered this: “Benjamin has only one real barrier: It’s whatever you know in your heart is beyond him. Everything else is meant to be the markers he will pass over, under or simply go around as he pursues his own goals.”

What I know in my heart is that I don’t know the barrier. Each time I think I do, Ben reminds me that, actually, I know nothing about his limits and everything about how he passes our markers and blows by the lines we draw for him.

The Amazing Benjamin with his art and, of course, a car

"Untitled" and "This is a mountain, this is a village"