FamilyConnect

Myat, our eight-year-old son, is totally blind with a hearing impairment. This all started to reveal itself around one year of age, although we didn’t know it. It was not until Myat was two and a half did we finally get a diagnosis of Autism when a psychologist from New York’s Early Intervention came round our house… Oh, wait, it wasn’t autism after all; the following month we found out he was shutting down and not making eye contact because he was going blind, and there might be a brain tumor on his optic nerve. Other doctors said, “No, no, that’s more of a thickening, not a glioma.” (This abnormality has somewhat shrunk in these successive years, fortunately). There were so many opinions, but no answers as to what exactly was happening in those early traumatic years of his young life. Children, for me, are mysterious—that’s a huge part of their charm. Myat is particularly mysterious. We don’t know why he has his dual sensory impairment.

We (my husband Scott and I) wonder if Myat, like some suggest, caught an undetermined virus when he was a baby, or maybe it’s the gods of our genes (should we fight our insurance to get whole exome sequencing since our microarray genetic test revealed nothing?). Or, maybe it’s just that we should stop visiting doctors—the countless über-specialists that have earnestly tried but, let’s be honest, failed, after years of camping out in their hospitals? Should we simply hope (fingers-crossed-style) that this is it—impairment of the auditory and visual systems; should we logically, at this point, focus on braille, social skills, and self-confidence?

We cannot see the obvious path; we must use our reasoning, our hearts, and our intuition. I have adapted along (some days more than others) with Myat, expanding my fluid understanding of what needs to be done.

A couple of interesting “blind” pieces floated past my inbox in the past few months. The first one was in The New York Times by Rosemary Mahoney, titled “Why Do We Fear the Blind?” It was a good, brief history on sighted people’s perceptions of “spooky” blind people. I see this perception a thousand times a day. We live in New York City; our subway station is in Times Square. Oh, the amazement, the shock, the horror, the pity, the smiles, the inspiration…Myat is cute, let me tell you. People don’t often see blind kids, so it’s weird for them, and they stare. Myat doesn’t know it; he’s practicing and perfecting cane skills or telling silly stories or whining or sniffing the air. I see it, and the performance begins. I become charged; my head lifts high for my son and for myself. Sometimes we’ve met great people. I love this town for that, often times people will just talk to us, instead of awkwardly staring at Myat. He loves when random people talk to him.

The second article was a piece about our wacky family, written by Marika Washchyshyn, titled “Fifteen Hands to Help One Sense.” It is a strange and vulnerable thing to hear about your situation from an outsider. Plus, I never, never want people to project this tremendous pity toward us, so there’s worry one might, but Myat is fine! We all work so immensely hard for me to say that. It may not be as easy as a lot of parenting, but look, others are still camping in hospitals, praying to a grubby, square-tile ceiling. We are OUT in the world, all learning together! Living.

A huge next step we took recently was taking Myat for evaluations at Perkins School for the Blind in Watertown, Massachusetts. We have really looked forward this. After a year on the waiting list, Myat’s name was called up! He would be evaluated by true professionals in their deaf-blind program, yet more tangibility in the land of unknowns. Some of this is practical (we need an IQ score for certain services here in New York), but a lot of this is about seeing past the countless people who have thrown their hands up at Myat, the ones who simply gave up on him and his mysteries. We move toward positive understanding, ideas, and modalities that can work for Myat. Perkins’ statement “All We See Is Possibility” was evident everywhere on campus. Scott, Myat, and I stayed for two nights on their gorgeous, bucolic New England campus. Myat worked so hard for all the tests and really enjoyed meeting all the different, friendly faces.

We feel so grateful whenever we move past the confused looks and head-scratching to an intelligent, yet human, approach to our child. I knew nothing about blindness before I had Myat. Eight years in, I find myself at a level of activism for my son that takes my breath away. Myat mystifies me in a lot of ways, but what worthy, beautiful, humbling experience doesn’t? Maybe we will never know the cause, but I am happiest when I focus on the humor of mystery (it’s there!), and we tap into the current moment’s solution.