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.























Tuesday, February 7, 2017

Re-Writing History

When Super Bowl 51 kicked off, Chloe and I were sitting in the Emergency Room at Connecticut Children's Medical Center, goofing off with the bead maze toys while alternatively squirting ourselves with antibacterial soap. Chloe had picked a heck of a time to trip, fall, and split open a cut near her lip (at her own birthday party and family Super Bowl party), and apparently she wasn't the only one to have been not feeling her best that evening. Sniffling, coughing, wincing and half-sleeping kids were all over the place, most wearing pajamas.

A lifelong Patriots fan, I looked around to see if the Super Bowl was on TV anywhere, but alas, only some sorry Disney Jr. show I didn't recognize was flickering on all of the screens. Thank God for smart phones. I kept checking the score as we went into triage, came back out into the waiting area, were called back again into an exam room, to sit and wait, of course, and as the doctor decided she needed three stitches and wanted to numb her up first.

I wasn't missing much at home (except family, which I'd hated to leave behind). The updates on my phone kept telling the same story: the Patriots were behind by 7, then 14, then (ouch!) 21 points. "Everyone just left after that last touchdown," Dan texted me. "Ethan's not doing so great right now."

Ethan, who lives and dies by Patriot wins and losses (of which, thankfully, there have been so few in his lifetime). A loss usually means a tantrum. He HATES it. It's as if every negative emotion we feel when we're really mad at our team blowing it, he feels exaggerated by about 10.

I figured he was probably sobbing at home, maybe rolling around on the floor and screaming about how "dumb" the Patriots were being for not scoring. Maybe the ER wasn't such a bad place to be, at that moment. The doctors gave Chloe a sedative that turned her into the drunkest-looking three-year-old you've ever seen, and then sewed her up (two of the three stitches would end up disappearing by the next day, but that's another story...). It was past nine o'clock, Lady Gaga had already wowed everyone at half-time, the Patriots were now down by 25 points, and we were free to go. I guided my wobbly girl across the echoing parking garage. One minute in the car and she was out cold, fast asleep for what would be the rest of the night.

Ten minutes later we were just about home. I marveled that yes, there were people actually out and about on Super Bowl Sunday, not glued to their TVs and stuffing their faces with pizza and wings. At home Ethan was sitting serenely on the couch. I believe the score was 28-12.

"Ummm, how you doing, bud?" Less than a month before he'd been screaming and crying when the Patriots played poorly in their first playoff game vs. the Texans -- even though they were ahead the entire game.

"Mama, they just scored a touchdown..." he said.

"- And missed the extra point. How do you DO that?" Dan interjected.

Ethan wasn't rattled. "They're coming back. They might even win."

"Well, I don't know about that..."

"Mamma. All they need is two touchdowns and two two-point conversions to tie it."

"Oh, is that all?" I replied, although he paid little attention to my sarcasm.

We sat there and watched quietly as the Patriots slowly chipped away at the enormous hole they'd dug themselves into. The more we watched, the more confident Ethan became. Calm, cool and collected. Kind of like Tom Brady.

I stared at him as if he were a specimen to observe. What WAS this I was seeing? There was, for whatever reason, no panic. No pessimism. He wasn't even completely convinced his precious team was going to win. "They might lose," he conceded. "But I think they're going to win."

What would it be like? I wondered. What would it be like to approach not just sports like this, but LIFE like this?

I have grown up as the queen of worst-case scenarios, lacking in confidence, very easily rattled, quick to give up and get discouraged. Growing up as a big football and baseball fan in New England only reinforced those same attitudes: we always lose, things never work out, don't get your hopes up because you'll just be disappointed.

Our brains have programs written into them at a very young age. It's difficult to clear new paths instead of retreading the familiar ones that are already there. Difficult, but not impossible.

Sports are just games, and I don't see athletes as heroes. I'm not here to talk about deflated footballs, revenge seasons, or how many trophies and rings. I don't worship these people, but I'll tell you this: somehow, in some crazy way, something began chipping away at my entire approach to life 15 years ago now, when this underdog team stunned everyone with a last-second field goal and won their first Super Bowl.

Two years later the 2004 Red Sox looked at impossible odds and 86 years of disappointment and kept going with the mantra, "Why not us?" Why couldn't we believe we'd win instead of lose? Why not live with expectation instead of dread?

This has nothing to do with wishing what we want into reality. It's more about living lives with calm assurance rather than waiting for the other shoe to drop.

That was Ethan, watching the Super Bowl through to its thrilling conclusion. This kid has only seen this team win, for the majority of his nine years. And for all of his yelling and screaming during most games, that night it came down to this -- he knew even if they didn't win, it was possible.

This is the kind of life I would like to live: not with regret and resentment that the seemingly impossible didn't occur...but with hope, belief and confidence that it just might.

THAT is truly living.

Final score? You know it. Pats 34, Falcons 28, OT.




Friday, February 3, 2017

Game Show Therapy

Last week Ethan and I were attempting to watch the Pro Bowl, but after realizing it was a joke of a football game we began flipping through the channels and stumbled upon a game show. This one was called "To Tell the Truth" or something like that, and featured a number of B-list celebrities attempting to guess which of three guests were telling the truth about themselves.

I'm pretty sure this is a remake from a game show about a zillion years ago. Essentially it consists of a statement like, "I once survived falling out of a boat and treading water for 24 hours before I was rescued." Then three people come out and get quizzed by the celebrities who try to guess which person is telling the truth.

"I think it's the third guy!" Ethan called out. I think in that round they were trying to find out which person jumps out of airplanes.

"Why?" I asked him.

"Because of the way he said, 'um,' before he answered," Ethan replied.

That's when I had the epiphany that this kind of show was ideal for people with autism who want to learn more about how to "read" others. What could be better? The whole point of the show is to draw a conclusion based not on what a person says but on other things you can infer...things like body language, tone of voice, the demeanor of the person, etc. It's about following your instincts, about paying attention to not just the words but the context of the words. The guy who fell out of the boat, for example. As the story went, he was fishing alone when it happened. So one of the celebrities asked each one if they liked fishing, and one said he'd only been fishing one other time. So of course that made people suspicious. Who goes out fishing alone in a boat having only gone fishing once? someone asked.

It's a game show, but this is high level stuff here. This is a more advanced version of what Ethan is starting to have to do in school -- read about certain characters and explain why they behaved the way they did, or what you can predict about a character based on their prior actions or things they've said or thought.

We watched for a while. I tried to explain the way the way a person who's providing a higher-level of detail about the subject might be more likely to be the one telling the truth rather than one who provides more vague answers. Only, it gets more complicated than that, because one strategy is to ACT like you're the one telling the truth by giving a lot of detail to make yourself sound knowledgeable.

And then there was the person who completely stumbled over her words and acted like a total failure, who ended up being the one who actually WAS telling the truth (about not only being a twin married to a twin and having twins). So this wasn't an ideal set-up, except maybe to show that people are unpredictable, and that sometimes the person who seems so confident is actually lying, and the one unsure could indeed be the truthful one.

When all was said and done, Ethan scored better than I did, getting two out of three guesses correct. It could have been just luck, who knows? I'm not really a fan of game shows, especially ones with annoying celebrities (Hollywood Squares? Aaaaarrggh!). But this one stimulated conversation and got both of us thinking. I'll take that any day.