decisions and fish faces
8 April 2001

It’s midnight, I should be asleep. Damian’s been in bed for an hour and a half and Dan has to work late tomorrow, making me solo mom again. I need to replenish my energy. I need to be asleep.

I’m not asleep. In fact, I’m so not asleep I sit up, turn on the light, boot up the computer, and burst into tears. I've gotten caught in the night spiral of thought upon thought swirling in a never-quiet brain. I got trapped in the should we...? And what about...? And oh my god what if he never...?

This is my son’s future. There are no right answers, or rather, there are dozens of right answers and everyone is absolutely rock-solid certain that you need to do it their way or you’ll be flushing your child’s life away.

Dan and I drove back to La Canada last Tuesday to see Dr. Red, the developmental pediatrician, for the third of our intake sessions. She seemed cooler. More dismissive of Damian. I described a moment the day before, an emotional moment when he hugged me. She brushed it off as "they like deep pressure."

When I read through her evaluation, her coolness became clear. She described the child we brought to her office, not the one who lives with us. She saw a child who makes no eye contact, who doesn’t pay attention to adults except when we force interaction, who does what we ask but stone-faced, expressionless. Who remains completely mute except for one "No!" uttered under duress. A child who doesn’t touch base with his own mother. A classically autistic child.

Not my child.

The boy I know laughs, giggles, frowns and finds inventive work-arounds when Mommy and Daddy keep getting in the way of his self-absorbed play. My little one crawls into my arms and, yes, damn it, holds his mouth up for a precious kiss. He kissed me the other day. I told him it meant "I love you." So he kissed me again.

Reading Dr. Red’s description of him felt like a slap. It felt like a dismissal of him and, by extension, of us for not seeing him the same way. For not seeing the "truth" which is far from true.

I do understand why Dr. Red wrote him up the way she did. He shut down that day in her office. He curled into his shell like a fearful turtle. He sleep-walked through the session, probably hoping it would be over soon so he could get the hell out of there.

This afternoon I sat at the dining table, enjoying the sun filtering in through the window, the light breeze. Damian was stamping play-dough shapes on the floor with Kim, his sitter. She stamped out a play-dough fish. Damian suddenly stood up and bowed from the waist, then did it again and yet again. Bowing and straightening, bowing and straightening. He puffed out his cheeks, to boot. It looked like an autistic tic to me. But Kim figured it out: he was pretending to be a fish! When he plays with fish in the tub, he makes them swim up and down like dolphins playing in the surf, and we’ve made those puffed-cheeks, sucked-in-cheeks fish faces before too. He was playing make-believe.

I’m not doubting that Damian is on the autistic spectrum. He is. But that doesn’t mean everything he does should be ascribed to his issues. Some is just kid behavior. Some is Damian being himself. Some is more sophisticated than a child with his issues would normally manifest, and therefore gets ignored or misinterpreted. Fish face or facial tic?

Ultimately, though, does it matter that Dr. Red thinks Damian’s worse off than we think he is? Isn’t it just my wounded parental pride talking? Maybe, but how much can we trust her judgment if her assessment is so far off?

She commented that when he came into the playroom, he stared for a short time without blinking. And yes, I think I’ve seen him space out, just stare blankly for a moment or two. Guess what? That could be a mild epileptic seizure. Some autistic children have epileptic aphasia. It’s harder to learn words when your brain keeps shorting out. So yes, we should look into this.

But to do so we'll have to drive down to San Diego, somehow get him to tolerate having electrodes fastened to his scalp, a turban wrapped around that and a fanny pack fastened around his waist, then go to a nearby hotel and survive an entire night with his fancy new headdress. To do this to a child who can’t tolerate having his hair washed or his teeth brushed. A child with tactile oversensitivity. The leaflet they gave us said there’s often screaming, and more than one person has to hold down your child. And, oh yes: if your kid keeps trying to tear the turban off, roll magazines around his elbows so he can’t bend his arms. All night. Damian in a homemade straitjacket. Screaming.

Tell me again how likely it is that Damian has this problem, and how much it would help him to get the test? Because I’m having pretty serious doubts. The kid has language, you see. He has a lot of words. He just didn’t happen to use any while he was in Dr. Red’s office.

Then again, what if this could be the answer? What if they saw seizures on the EEG and we gave him a drug and suddenly he started asking for juice in full sentences and saying "Mommy, I love you" and "Daddy, I missed you" and "I want to go to the park. No, not later. Right now!"? What if it really is that simple only we never find out because we’re too afraid of one horrendously bad night?

Then there’s the MRI. I’ve had an MRI head scan. Scared the crap out of me, and I was a grownup with no issues except a touch of claustrophobia. For a three year old with sensory issues? The vibrating, the sound... my god, no.

Dr. Red said Damian may have what she called soft neurological deficits based on the fact that he sometimes grimaces and has other odd facial tics. I’ve always thought they were facial experiments. Who knew they could be symptoms? So maybe an MRI is in order. But even if it did show something, what would they do for him? I’m guessing not a lot beyond the therapies he’s already scheduled to get. So... um... where does that leave us, exactly?

Don’t get me wrong, I’m still impressed by Dr. Red. She’s a valuable resource. She hooked us up with what looks like a great preschool, she suggested a couple of computer programs to help with his auditory processing and she gave us a regimen for him that includes what I call revving up -- bouncing, running, jumping on a trampoline -- before floor time sessions, to get his energy up. We’ve started to implement this. It works. Dr. Red is good at what she does. Knowledgeable. But she underestimates Damian and that may hurt him.

But that was a week ago, that last session with her. Why am I up so late tonight, drying my tears and hugging myself, in this room now spookily lit by the soft glow of a computer screen?

Because I talked to another developmental pediatrician tonight. My father has been talking to her, one doctor to another. She offered to talk to me. Nice woman. Sharp. With a tinge of that nasal New York accent that sounds like home to me. She told me that an MRI isn’t necessary, that ninety nine percent of the time they don’t show a thing. Same for the overnight EEG, that she’d do it if the child started developing normally but then regressed -- which isn’t Damian’s case -- but otherwise, no. And she said that they’re very traumatic procedures, no reason to do them unless you absolutely have to.

That wasn’t all this pediatrician said tonight, though. She told me -- no, she urged me -- to add some ABA behavior modification to Damian’s mix of therapies. She likes the floor time approach but says it’s not enough. Says getting these kids to talk is crucial, don’t mess around.

There’s a child in her life, a relative of hers. This child was in a floor time based Mommy and Me group. She’s followed the other kids through the years. They’re now eight years old. The child she loves is the only one mainstreamed in school. And he’s the only one who got ABA along with floor time. Scary to hear when we have no intention of doing ABA.

The director of Damian’s new special needs preschool says the reason ABA works to bring kids out of their autistic fugue state is not the work itself but that they’re getting so much one-on-one attention (forty hours a week is the standard). They can’t help but learn to relate with that kind of time and warm attention. She worked with Lovaas himself (Mr. ABA) for seven years. She knows what she’s talking about.

But this developmental pediatrician I just spoke with knows too. This child in her life, his developmental pediatrician was Stanley Greenspan himself (Mr. Floor Time). She says Floor Time isn’t enough by itself, we need ABA too.

So now I have another horrifying thought to haunt me in the midnight dark. If we avoid ABA, are we condemning our bright boy to a lifetime of autism and special needs programs? Should we do this thing even though it goes against our philosophy and our gut? But how can we trust our gut on this? How can we be sure it’s our instincts and not the wrench of "I don’t want that for my child" from a more primal place, a place that protects our kids even against what may be good for them? Or is it? I don’t know how to tell. I just don’t know.

This isn’t a paltry matter of a career misstep. I’ve done those, plenty of times. It’s probably postponed success a few years, but it hasn’t ruined my life. Even if it’s destroyed that career path (doubtful), there are others. I can make adjustments, move on. This, though -- this is playing with someone’s life.

Not just any someone. One of the people I love most in this world. Someone I would breathe for, if I had to, I would cut my veins open and bleed for, if I had to. Those are easy. No thought required. This, though. This is as tough as it gets.

The experts all have their opinions. They know far more about these things than Dan or I possibly could. All we have to go on as we make our way through this muddy swamp of decisions is gut and faith and an intense desire to learn. And one more thing: we know our son. Nobody else does. None of the experts have an accurate picture of who he is and what he’s capable of. And in the end, that’s what matters most.

If we could couple that with an immediate knowledge of the entire convoluted and contradictory field of autism treatment, we’d be all set. I remember -- was it in the Oz books? -- if you wanted to learn something new, say a foreign language or how to quilt, you could take a small sugar pill and presto! Instant knowledge. If only. But even if there was such a pill, I wouldn’t trust it. It’s only as good as its manufacturer, and no matter how definitive they all sound about their treatment plan being the best, none of them can guarantee success. I want a guarantee. I want to know that what we’re doing is The Right Thing, no need to look any further.

Is it any wonder that I lie awake in my torture device of a bed hours into the night dark, wondering and worrying and finally bursting into tears?

Dan comes home half an hour later from a Sunday evening stint at work, poor tired man. I tell him of my midnight panic attack. We lie in bed another hour holding each other and talking things through. We can put off the tests, talk to Dr. Red, decide about adding ABA in a few months after all of Damian’s currently planned therapies are in place and showing (or not showing) results.

When we’re done talking, I can finally sleep.

In the morning, Damian comes to our bed with a bright smile. He clambers up and lies between us, grinning. Oh, sweet boy. How can we know how to help you? Why is it so complicated?

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