Wednesday, February 15, 2017

He Just Doesn't Quite Get It...But Then, Neither Do We

We were there at the pediatrician's office; annual check-ups for Ethan and Chloe. Ethan went first to "be a good example."

The doctor did all the usuals: heart, lungs, eyes and ears. The kid's grown almost three inches and gained more than five pounds. The latter seems hard to believe. He's our beanpole.

Then we launched into the developmental stuff. Ethan was half-listening. Yes, he's doing great in school. He's already where he needs to be at the end of the year in math and reading. Yes, he's no longer receiving speech, just does a social skills group. Yes, he has friends and participates in sports.

Every time we get to this point in the appointment, these last few years, the doctor does almost the exact same thing. "His ASD is virtually invisible," he says, shaking his head in amazement.

His developmental pediatrician would beg to differ, I think. She's the one that can point out signs of ASD from the way you fill out a coloring sheet or don't follow up properly on a casual question.

Ethan heard the term "ASD" and perked up. He's full of questions lately at the doctor ("How does the strep test work?" "Why do people have to get shots instead of just taking a medicine?"). "What does that stand for?" he asked the doctor who's seen him nearly since birth. "What's ASD?"

The doctor tried to dance around this. I don't know why he always does. I told him last year Ethan is fully aware of his diagnosis. We talk about it all the time.

"You know, autism," I told him. "Your superpower!" Yeah, I know that's a little corny. Autism certainly isn't always a superpower. But we hear all of the time about the way it's a deficit. He'll get that in time -- the least we can do is point out the positives now, like his laser sharp hearing or his amazing ability to memorize.

The doctor went on, almost in his own world. "This," he said. "This is what early intervention can do..."

And I smiled and noddded, because I know he's been a pediatrician for about 40 years and when he thinks he knows something, he knows something. Which is why he tried to blow me off at first when I mentioned having some concerns about Ethan. Ethan didn't seem like a classic case, his red flags weren't that big of a deal, he had some good skills, etc. He was surprised when we walked back in with a diagnosis of moderate autism when Ethan was two. But he's been even more surprised lately.

I nodded quietly in agreement, but what I wanted to say is that Ethan's successes may in part be due to early intervention. But there are thousands upon thousands of worried parents who raced to developmental pediatricians, had their children diagnosed as toddlers, and saturated them with as much therapy as possible, opening their homes to therapists for hours on end or shuttling them to countless appointments. Sometimes both.

They did everything they could. I tried, but didn't even involve Ethan in all of the therapy he could have gotten.

Early intervention was a piece of the puzzle. A piece. Not the secret key to every autism story.

Does it have something to do with Ethan's IQ? Every therapist and teacher he's had has mentioned that he is very, very smart and learns very quickly. I witnessed this at his basketball practice recently. The coach gave instructions that confused me. I would have had to stop and ask him to clarify. He heard them once and repeated each step perfectly. He's amazingly smart, can memorize, can pick something up just like that...

...but many, many kids on the spectrum have high IQs. They can do college-level math in 2nd grade or construct or design things my mind can't begin to understand. Some can't even speak but are amazingly smart. So this is not just about intelligence. Could it be the way he's able to harness his intelligence?

When I tell people Ethan's story, particularly parents with younger kids on the spectrum, they want to know his secret. In third grade and mainstreamed, above grade level? A little quirky, a little trouble with eye contact and an obsession with video games, but for the most part blending with peers, for now at least? This is what a parent dreams of when they get a diagnosis.

And my heart is full because I so want to tell them a secret formula that will assuaged their worries and fears, and I just don't have one. Was it playing on the floor with him often? Refusing to let him sink into ruts of sameness? Was it just the grace of God?

I thank God every day for Ethan's outcomes thus far. I do believe His hand is in all things and that He has worked greatly in Ethan's life. But I can't attribute this only to "having faith." That's a slap in the face to every parent who has worked and prayed and pleaded and begged and tried everything and sees no significant change in their child's prognosis.

I wanted to tell the doctor all of these things, that we don't really know the why and we will never completely know. But he's a 70-year-old pediatrician who is indeed looking at a miracle of sorts in front of him. Ethan is a not-so-typical kid out of not-so-typical kids.

We finished up our appointment and headed into the waiting room. A mom was there with a boy about Chloe's age. He was being difficult -- all over the place, banging on the fish tank, whining, trying to go into the back where the exam rooms were. He didn't seem to have many words and was kind of half-whining, half-moaning and flapping his arms a little. "No! You can't go back there yet!" the mom said, exhaustion and stress in her voice. The kid blocked our way, seemingly unaware, as we waited patiently for mom to help move him. I tried to head out quickly, as I didn't want the kid to dash out the door -- or for the mom to see Ethan and Chloe staring. The last thing this mom needed was stares.

Outside the air was crisp and cold. "Mom, that kid??" Ethan asks incredulously. "Why was he being like that?"

"Ethan," I said as we scurried across the parking lot. "I'm not completely sure, but I think that boy might have had autism. You may not believe it, but when you visited Dr. Milanese for the first time, that was how YOU acted."

I waited for a response, but it never sunk in. At least not that time. He jumped in the car. "Let's find something good on the radio!" It was time to drive home and get a jump start on video games.

I wish I could have shot the mom a smile or an encouraging word. Whatever difficult behaviors her boy was doing at this age, he most likely wouldn't be doing at nine. Only -- I don't know. Sometimes challenging behaviors morph into new challenging behaviors. Every kid takes a different path. The autism trajectory is so ridiculously broad. That's where the stress comes in, what parents of typical kids don't always get. If they knew it was just a phase, they could bear those hard years better. It's the not knowing.

With all of us, it's the not knowing.

So we do what we know to do, trust, pray, hope, and keep going. That is all we can ever do.

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