Things We Say

I ran into an old friend the other day and she told me her three year old had just been diagnosed with autism. Do you want to know what I said? I said, “I’m sorry.” And as soon as those words left my lips, I felt instant regret and wished more than anything I could rake them back into my mouth and say instead, “Ok. How are you doing?”

A lot of people have told Rich and I they’re sorry this happend to us. I don’t love hearing it. It feels a lot like, “I’m sorry your kid is broken.” It makes me feel defensive, oppositional, and extremely protective of Andrew. And at the same time, I get it. No one wants their child to have difficulties in life and “I’m sorry” is our way of conveying that to each other. I also get it because it’s what immediately came out of my mouth when my friend told me about her son.

The fact of the matter is, I think these different kids are kind of magical. They’ve got one foot in this world and another foot in a place the rest of us don’t have access to because our normalness would likely ruin it. Andrew certainly fits this description. Most of the time I feel like I’m interacting with either an Angel or an Elf. And either way, it’s mostly entirely pleasurable.

One of my all time favorite clients whom I had the opportunity to work with many years ago was autistic. I’ll call him James. James had many of the stereotypical attributes of a high functioning autisic person. He was hilariously blunt, a trait I found refreshing. He would seek clarity about certain phrases he had heard or that I had said. Communicating with him was an exercise in precision. He made sure of it.

The boy was punctual. No, strike that. James was diligently a few minutes early each session, sitting with pristine posture, gaze downward, in the same chair in the lobby when I would fetch him for his session. He never looked at me when I would walk in the room. I sometimes wondered how he knew it was me. He’d simply stand up and walk in the direction of my office, as if to say, of course it’s you. You always come for me. I don’t know if this was evidence of trust, or if his brain distilled social interactions in such a way that the more superfluous exchanges we partake in as humans simply got filtered out. Regardless, I enjoyed his pragmatic approach to interactions.

Each session resembled the one before. He would sit in the chair in the southeast corner of the room and tell me he wanted to play Uno or Sorry while we talked. He noticed details others overlooked. His world was different from mine and I appreciated every time he let me in. I learned more from him than he did from me, I’m certain.

The thing I remember most fondly was his love of treatment plans. Not typical for most 16 year olds. He came in with a precise goal in mind: “I want more friends.” We wrote a treatment plan together, a process he was highly engaged in. I loved his motivation and his no nonsense way of approaching the work. When, at the 90th day (he was of course, sure to remind me), we reviewed his treatment plan and he had successfully made two new friends, I asked him if there was anything else he wanted to work on. He moved his yellow Sorry piece three spaces, tapping each square as he did, and responded, “I want to learn how to talk to girls.” As you may expect, 90 days later he was happy to report he had a movie date. 

I’ve been pondering what caused me to extend my regrets to my friend the other day. Am I really sorry? I suppose I know or assume that her experience is similar to mine. There are daily challenges, fears about the future, a million appointments, a ton of advocacy, exhaustion. It must have been hard for her to learn this news about her son. Hard to accept that he’s different. There will be challenges, and its impossible to know to what extent he’ll have challenges because every kid, no matter the diagnosis or lack there of, exists on a spectrum. 

There’s a scene in Contact, a movie that I’m apparently alone in liking, where the flight surgeon hands Jodie Foster’s character a cyanide pill for the “thousand reasons we can think of…but mostly for the reasons we can’t think of.” I feel like this sometimes. Not the suicide pill part, but the part where an unknown future is terrifying and we might not want to actually go through it. News flash: all futures are unknown. Having a kid with a disability though adds some additional layers of unknown. For instance, Andrew doesn’t know how to feed himself yet. This is not usually an issue for a 15 month old. Will he ever learn? Probably, but not without countless hours of physical and occupational therapy.

I’ve been thinking of James a lot recently. His mom was worried about him. She had watched him struggle and overcome, struggle and compensate, struggle and falter, for 16 years. She learned to anticipate the challenges on the horizon and like the steady advocate she was, she’d clear some brush for him on the trail ahead and then let him walk his path. Always calm, always loving, ready smile, sad eyes.

Raising Andrew isn’t like raising my other kids. With Ellis and Henry, I feel like a blink equals a year. I realized the other day that Ellis will be in high school in four years. She was a toddler last I checked. And while it feels like Henry has been four for 78 years, when I look back at pictures of him as a baby, I can barely recall those warp speed days. He was born and then he crawled and then he went to preschool and here we are. Somewhere in there he learned to feed himself, talk, pull to stand, take his first steps. It is not like this with Andrew. Andrew is like the miracle of watching a tree grow. Slow and magnificent.

I’m not sure what it is we are supposed to say but pity isn’t necessary. I think Rich said it best when he said, ”Don’t tell us you’re sorry. Just don’t abandon us.”