his own heartbeat
2 June 2001
The last time we brought Damian to see Dr. Jay was January 19th, a date I remember with extreme clarity. The day we confronted the fact that there was something going wrong with our little boy’s development. One of those days that changes everything even if you don’t know it right away, that divide life into "before" and "now."

So his benign three-year-old checkup this Thursday was a gauge of sorts. We measured who Damian is now along with his height and weight. There’s no scale or ruler on a wall for the internal stuff, of course. You have to look and listen and remember.

Damian brought his very own doctor’s kit along, ready for action. He didn’t need it for a while, though: first, a nurse came in to ask pertinent questions like "does he jump?" and "what are his eating habits like?" She started by addressing everything to Damian, clearly expecting a response. I winced and jumped in, "Do you know about Damian?" She said no. I said "He’s on the autistic spectrum. It’s very mild and he’s doing great, but..."

She finished my sentence: "But he probably won’t be answering my questions." Right.

It went smoothly from then on, though I felt like we were hastening to assure her he really is a normal kid for all his issues. It’s an odd thing, when you tell someone what’s going on with him. Even medical professionals don’t quite get it, I think. They have an image in their minds and Damian doesn’t fit that image. So they either treat him like he does, and therefore massively underestimate him, or they’re baffled and not quite sure how to proceed, or they’re simply impressed by how very high functioning he can be. I like that best, of course, but I wonder if it skims the surface of denial. Perhaps the only real approach is to say "This is a child. Let’s see what he can do and who he is and just use the terminology to give us insight but not preconceptions." If that’s possible, given human nature. I’m not sure it is. I hope so, though.

No matter. The nurse left. After half an hour of desultory play, snacking on pretzels, and reading picture books, Dr. Jay showed up. He greeted Damian warmly. Damian didn’t exactly acknowledge him, and quickly slipped from Dan’s lap to the floor, where he got intensely involved with a wireframe bead toy, the very same toy he glommed onto to shut out Dr. Jay and this so-strange environment back in January. It felt for that moment as if time stood still and all the progress was illusion.

I brought him back to my lap, told him who Dr. Jay was, asked him if he saw him. Damian pointed readily. Okay, that’s something. Not much, but something. A beginning of sorts. It got better fast, though. Damian fished out some tools from his doctor’s kit, compared them with the real thing. Dr. Jay declared Damian’s set much more colorful.

After that things were just fine. When Dr. Jay asked if he could look at Damian’s feet, Damian nodded his consent to having his shoes and socks removed.

When Dr. Jay put a shoe on his ear, Damian laughed. When Dr. Jay asked if Damian knew how tall kids grow when they eat broccoli, Damian was mute but readily lifted his hand to match ours in illustration of "so tall." When Dr. Jay made "scary noises" as he flew his instruments toward Damian, Damian made the selfsame scary noises, saying "pop!" and "zap!" right back.

He spoke, too, real words, but I’m having trouble remembering exactly what he said. He needed prompting, I do remember that, but he spoke readily and clearly. Damian had a good time. Dr. Jay was visibly relieved. He said here was proof positive that it’s a spectrum, that there’s no such thing as a monolithic definition of the thing.

He flipped back in his charts to see if there was some sign he’d missed, some way he could have led us in the right direction earlier. We listed a few, but they were subtle: Damian was uncomfortable around other kids, he didn’t respond to his name, he didn’t speak communicatively. But he knew an awful lot of words, and he giggled at his eighteen month checkup when Dr. Jay examined his ears. That giggle, Dr. Jay said, threw him off. Most kids with autism he’s seen are glum little people. Damian is most definitely not.

Dr. Jay ended the session by telling us he thinks Damian will be just fine in just a few years. In this kind of thing, how much you do makes all the difference. Which, he said, can be a source of intense guilt for many parents but for people like us, it can be a great comfort. I understand why he said that, but the truth for us is somewhere in between. We love that he’s doing so well, of course we do. I feel an almost constant sense of wonder when I look at my little boy and think about how far he’s come since January. But every single day I think I haven’t done enough to help him go further faster. I know Dan feels the same weight. It’s a lot to carry. I know we can only do so much and live our lives too, but how can that be enough when the stakes are so very high?

At the end of the appointment, I asked if Damian could hear his own heartbeat with the real stethoscope. Dr. Jay said he usually reserves that for the four year olds, but what the hey. So he slid the disc under Damian’s shirt and fitted the ear pieces over his small ears.

As Damian listened, he made a rhythmic noise in his throat, mimicking his own heartbeat. When we left, we had to prompt a bye-bye wave, but Damian looked Dr. Jay in the eye as he walked out the door, and we were all well satisfied.

It’s probably not how most three year old checkups go, with their easier ask-and-answer, but then again, as Dr. Jay said, if he didn’t know, he’d have thought Damian was just another preschooler turning reticent at the strange doctor’s office. In fact, he did better than most.

Later that afternoon, he took his own multicolored stethoscope and slid the bright red disc under his shirt, tapping the weak microphone to mime the sound of a heartbeat in his ears. Remembering the morning.

And me? I kept thinking back to that morning four months ago. Thinking of how little we knew and how bleak I felt walking out of that room. How scared. But now? Our worst fear came true and it turned out to be the best thing to happen to all of us. Because now we can move forward. The world is wide open and the possibilities are infinite.

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copyright 2001 Tamar