The Family Room

Alternate Reality Theater

I've been trolling the Internet lately, just to educate myself about some of the therapies we haven't explored, and I've gotta tell you...it's like falling into a pool of quicksand. Just sucks you down into alternate realities and a whole lot of very destabilizing "what if" scenarios. (Raise your hand if you are thinking, "Susan, step away from the Internet!") But stay with me a moment. Did you know that the Autism Society of America lists 17 different therapies in three categories? All the common ones are there: ABA, Floortime, OT, ST, RDI and more, plus the biomedical interventions and the complementary ones such as music, art and animal therapies--including swimming with dolphins. In the spirit of full disclosure, we've actually heard good things about a music therapist in our area, but the truth is that we're overscheduled as it is, so it would start the whole spin cycle of "what do we cut, how do we fit it in, can we afford it" (that would be a no), and on and on.

Don't get me wrong--I've seen enough by now to know that choice of therapies is one of those polarizing topics that can lead to hurt feelings and raised voices and a whole lot of unpleasantness all around. So I don't go there. But today's experience brought back the very same rush of panic I felt on that first day in the developmental pediatrician's office, when the floor opened up and sucked us into a future we were never expecting. "Are these the right things? Should we do more? What about...? What if...?" The doctor scribbled a few names on a yellow legal pad and wordlessly handed them to us. We made some phone calls and some judgment calls and then some more phone calls, and things started to happen. Ok, good.

But I hope that someday soon the parents who perch anxiously on the scuffed brown couch as they watch their future take a hard left turn have an easier time than we did. I hope that as they face their news they are greeted with better, more precise information, so they can make choices that they believe in and that will help them feel like they're doing the right things for their child. I can tell you that it's gotten better for us since that day. We are learning more all the time, from stumbles as well as successes, and we generally feel more confident that we're on the right path. So, in the absence of that crystal ball, I wish the same for the next parents. I wish the same for you.

Sometimes a Cold is Just a Cold

To me, one of the greatest sorrows of this whole "autism spectrum" business is that it can so easily color your perspective on even the simplest things. Back in October, Isaac went through a very difficult behavioral phase. Normally a happy kid, he suddenly started lashing out at us, having tantrums--basically acting like a real pill. We were worried, but not overly so, since even typically developing kids can hit the terrible twos at three, or even later. So we figured we'd grit our teeth and get through it.

Then one night his behavior took a dramatic turn for the worse: he refused to go to bed and instead went into full-scale meltdown, thrashing around on the floor, screaming and crying and hitting everything in sight. This went on for a few terrifying, sleepless nights. We tried to imagine what it could be, with no success. He didn't seem sick, nothing particularly stressful had happened, no big changes in routine. We thought we'd give it another day, then call the doctor. But the main thing running through my mind was "Sudden, dramatic personality change? Not good."

On the third or fourth morning, I scraped myself together and went to meet with two new clients. Luckily, they also happened to be mothers of young children. I let them know that my son was ill and that I might need to answer a call on my cell phone. They asked me what was wrong, and without mentioning anything about Isaac's developmental delays, I told them about the behavior: the screaming at bedtime, the tantrums, and that this morning I noticed he was rubbing his ears quite a bit.

"Ear infection," they chimed. And, when I stared back at them completely dumfounded, one smiled warmly and asked, "Now don't you feel like the worst mother ever?" It was all I could do not to break into grateful sobs then and there.

Long story short: it wasn't some kind of horrible autistic regressive episode, it didn't mean that my sweet boy's personality was gone forever: it was Isaac's very first garden-variety nonautistic universal kid ear infection, and it, and the behavior, cleared up as soon as we started the antibiotics.

***

Yesterday morning we heard the unmistakable barky cough that always signals a trip to the emergency room and a long night ahead. But for some reason I convinced myself that, since it had been two years since Isaac's last croup, this must just be an allergic reaction to all the pollen at the park. Duh. Back to urgent care last night, where they were surprisingly ill-equipped to deal with a frightened preschooler with special needs. The doctor seemed to think that speaking very quickly and loudly while waving her stethoscope around would convince Isaac to let her examine him, but he had other ideas. And I found myself in that familiar, horrible position of having to explain for my child. And I hate that, because it always feels like such a betrayal. And it makes me resent these people who are basically just trying to do their jobs, see as many kids as quickly as they can, but who still seem so completely at a loss around my son. And I can't help but think: if with all their training they can still be so stiff and awkward around a child with special needs, what can we expect from the rest of the world?