Monday, April 24, 2017

Follow Through

I looked out the window one morning recently as the rain came down and saw our backyard strewn with toys. Again. Chloe's tricycle was getting wet. Every year, it seems, as the weather gets warmer I tell myself THIS will be the year the kids always put away all of their toys before they come inside for the night. But, here we are again.

Of course, children don't naturally think to pick up after themselves. Ever. So obviously a habit like that has to be learned, and practiced. Which brings me to the crux of the matter: follow through.

The more I think about it, the more I'm realizing follow through and consistency is probably one of my weakest parenting areas, yet it's critically important. Good habits are developed, not instinctive. Discipline comes through practice. Obedience is a less attractive option to your kids when they know you don't really mean what you say, anyway.

Sigh.

Follow through with your kids is a lot easier when you only have one. I suppose that's obvious. If you tell your little one to pick up all of her toys, and she doesn't, you have a little more time, energy and focus to stay with her and make sure she picks up all of the toys. You can do it hand over hand, if you have to. If you're a first time parent, this seems so draining, and tedious. But when you have other kids distracting you, vying for your attention, interrupting, and possibly fighting, it becomes much more difficult. Notice I didn't say impossible. That is the lie we buy into. This is, I think, why oldest children seem more disciplined and structured and the younger ones get away with murder. It's very easy to throw in the towel and say, "I'm just too tired to deal with this."

I've started reading (or actually listening to) a book called The Five-Second Rule. It's all about the way we're able to talk ourselves out of just about anything in five seconds or less. Our bodies truly aren't wired for discipline, for making the better choice, for denying ourselves what feels good in the immediate moment. She talks about how she's used a simple 5-second exercise of counting down like a rocket launch ("5, 4, 3, 2, 1...blast off!") to propel herself into doing something she really doesn't WANT to do. While I originally began listening to this for an extra push in the area of eating and exercise, it of course could apply to every area of life. Including the kids.

It's really easy to tell your kids they HAVE to do something. But what happens when they don't? The critical thing is not what you tell them to do, but what they actually end up doing. I recently told Anna now that theatre is done for the year it's time to pick up some additional chores at home, including cooking dinner for the family one night a week. Okay, cool. But it's not like she's going to do this on her own. How many times, after the initial requirement, have I just become rather blasé? Often a few weeks later, I'll say, "Oh yeah, we were going to have you do that...." Still, no follow through. This time, I said she needed to do her research on what she wanted to make, then write it down and hand it to me with the required ingredients before I go shopping. Yesterday I asked her again and she said she'd do it when she got home that night. Guess what? She didn't do it. So now she HAS to do it today, because I'm going shopping tomorrow.

If this all feels rather tedious, it's because it is. Which is why we avoid follow through. Or at least I do. But what are they learning, when we don't follow through about them following through? They're learning it's not important to follow through, of course.

Recently I had to volunteer to do something that I really didn't feel like doing. I had signed up, I knew I needed to be there, but I didn't WANT to be there. "Just don't go," Anna told me. Of course, that's always our default option. I told her I had to go because I said I'd be there and they were depending on me. And I hoped she was making a mental note that even parents sometimes really don't want to do something, but do it.

Follow through is especially difficult with Ethan and screen time. You know how people say if you're going to hand out a certain punishment to your kids, you have to be able to deal with the consequences of that punishment? So if you tell your kid they can't watch TV all day on a rainy day during summer vacation, what's your plan? How are YOU going to survive the punishment, when your child is nagging and whining at you all.day.long? This happens with us and Ethan all the time. Taking away screen time is really the most effective punishment, or consequence, we have for him. But we have to know what we're getting into. A day Ethan is not allowed screens can often be brutal. He doesn't want to get ready for school because "there's nothing to look forward to when I get home." There's crying. Maybe tantrumming. Lots of whining and saying he doesn't know what to do. Lots of trying to sneak the screens when we're not looking. Refusing to do homework. The list goes on and on.

Lately Ethan has taken to sneaking screen time and lying to us about it. The sneaking is bad enough; the lying is a path we really want to nip in the bud as much as possible. Dan caught him last week and took away his screen time the next day, but when I found out, I started to panic. Why? Because I knew he had a baseball game that evening, and how hard it would be to motivate him to put on his uniform and get him out the door if he had no screens that afternoon.

But: Fear of our kids' behavior can't stop us from following through. Maybe sometimes we have to make some adjustments or modifications, but still, we've got to do it. What's "cute" now won't be when they're a teenager, or working a job where they just don't "feel" like doing what the boss has told them to do. We've got to put in the time now, the investment now. Jut as we have to do with ourselves, when it comes to self-discipline.

I still have a LOT to learn about this. I really feel as if I'm just beginning. But awareness is the first step. Nike was right. Sometimes we have to grit our teeth, take a deep breath, and just do it.






















Saturday, April 1, 2017

Letting Boys Be Boys...Kind Of

I knew there was trouble when I glanced out the back door and saw Ethan attempting to climb up a large ladder (not opened correctly) he'd gotten from the garage, which was perched against a tree on our sloping hill in the backyard.

"STOP!!" I cried out. "That's completely unsafe!"

"But I HAVE to climb this tree!!" he insisted. The lower branches were a little too high for him to reach. And so he did, after I made him open the ladder correctly, and find a more level spot.

I call it compromise. I make attempts at this whole "free range kid" thing, but it's not completely for me. I don't think it's completely for Ethan, either. I know someone who regularly lets his son roam around the neighborhood, through people's backyards or back doors, and even in a patch of woods, and doesn't bat an eye. I turn my back for five minutes, and crazy things are happening without Ethan going anywhere.

People say this is what it's like, having boys. I wouldn't say I'm surprised. I always had this idea that maybe having a boy was would be like living in Charlotte's Web with Fern's older brother, Avery. Remember him? The one who toted around a BB gun, carried frogs in his pocket, and liked to poke all sorts of inappropriate things with sticks? Only this isn't 1948, so it's not quite like that, and Ethan's not going to roam around in an old barn (none within walking distance, although we do have a number of abandoned tobacco barns in town), or around town (stranger danger!). Our garage is dangerous enough.

Okay, so here's the thing. We're always telling him to get off the screens and get some fresh air. But apparently fresh air is boring. And Ethan happens to have a friend next door who like him needs excitement or a challenge.

Things started innocently enough. Well, not really. They started their own version of Poke-E-Ball that involved essentially pelting each other with all kinds of balls. Only they'd run around sometimes to the front and near our busy street, and balls would sometimes go into the street, and I'd find out after the fact they were running out there and getting them.

Okay, deep breath. They DO need to learn how to safely retrieve balls from the street.

Then the swing set challenge. At nine Ethan has essentially outgrown our swing set, particularly because it doesn't have monkey bars (that never crossed our mind, when we purchased it, unfortunately). He is bored with the swing set, but he enjoys using it if for new challenges with his friend. So, the minute they see each other, I'll hear something like, "Why don't you climb up the slide backwards to that board and hang upside from it?" Or "Let's try jumping off from the platform."

I hate to watch them like a hawk, but I also hate to hide out in the kitchen because I don't want to know what's going to happen next. It feels wrong to tell them to stop (Would Fern and Avery's parents have done that? We're wimps nowadays!) but the thought of someone getting hurt makes my own head hurt.

The swing set competitions were bad enough but they have evolved into a game of Let's Find the Most Dangerous Thing in the Garage and Fight with It. Thanks to Anna's input from a slumber party game she played years back, I caught them not long ago playing their own version of the Hunger Games, going after each other with different sections of a roof rake. They are often fighting with sticks. The sharper, pointier, more jagged edge, the better. I told them they had BETTER stay away from the axe.

Then there was the day recently when Ethan came across a sledge hammer and he and his friend decided to attack some stuff we have in our garage waiting to be carted away by whoever I finally getting around to call to remove it. There's an old toilet in there, and TV. I stepped outside and heard smashing sounds. Then I saw small bits of white porcelain on the ground and followed the trail to the garage, where they were gleefully smashing at the toilet and yelling, "TOILET DESTRUCTION!!" A very small part of me was kind of glad they had broken the thing down a bit so we could shove it into the trash can. Dan took the more parental view that someone was going to get hurt and they needed to stop.

I try, I really do. I try to be all relaxed and chill and let them do stuff. But then I think about my child or his friend breaking their foot with a sledgehammer or having a piece of porcelain fly up and permanently blind them, and I end up launching into the mom speech.

It didn't help. The next day I found them in the garage smashing the TV. I wondered just what Ethan's friend said to his parents when he walked in for dinner that evening  ("Their garage is a mess, but we helped smash some things into a million pieces!"). I wondered if I'd be getting a talking to soon. These are nice people. We are probably not a great influence.

There is a part of me of course that is very happy Ethan has a friend to play with and that, while they fight sometimes, they also have a lot of fun together. I just wonder what's next, and I wonder if there is anything they can come up with that's not violent or destructive.

A few weeks ago I peeked outside and saw Ethan again with the ladder, this time on our deck. I told him to go put it in the garage...only he made a detour heading back to the garage and set up the ladder under the sloping back roof of the garage. When I looked out there again, he and his friends were sitting on the garage roof, their legs dangling off the side.

"WHAT ARE YOU DOING??!!" was my predictable response.

"Mamma, we just needed to feel what it was like to be on the roof. I love the roof. You KNOW how I've been wanting to go on it." This is true. It all started when my Uncle Warren allowed him up on the roof of our camp when he was fixing something last summer. Ethan has become so enamored with the roof he even begged to be allowed on the roof on his birthday, as part of his birthday present.

"GET DOWN NOW!" I hissed, shooing at both of them. At dinner Ethan's friend would announce to his parents, "And today we climbed on Ethan's roof!...."

They slowly climbed down, with unmistakable looks of satisfaction on their faces. I couldn't blame them. The roof IS pretty cool. In fact, I seem to remember secretly climbing out one of the bedroom windows in my grandmother's house onto a roof below. The freedom! The view! And I was the biggest goody-two-shoes ever.

There is a side of me that enjoys all of this exploring...and another side that wonders how we will escape this unscathed. Ethan likes to brag that he has never broken a bone. And then he climbs the tree in front of our house, the one with weakening limbs, and every time decides he needs to climb a little bit higher. Last time he yelled out, "If I fell from here right now, would I DIE??"

Yeah...there have been lots of quickly muttered prayers lately.

I'm not sure I want to know what they'll come up with next.





















Thursday, March 23, 2017

Pondering the Mouse


Lately we've been toying with the idea of taking the plunge (with our wallets) and taking the kids to Disney World.

Oh Disney lovers, please don't hate me. I don't mind Disney. There just happens to be a long list of places I'd rather visit instead.

I know, I know, this is about the kids. And I am grateful to have the opportunity to spend time with my family and to be able to pull together the means to go somewhere. I would just prefer that somewhere be the red rock canyons of the southwest; a drive up the Pacific Coast highway in California; eating my way through Italy.

Disney? It's an awesome place. The customer service and attention to detail can't be beat. The creativity and innovation? Amazing. So what's the problem? Where to start? (Here I go, getting curmudgeonly)...

1) I'm not sure when or how it happened, but it seems as if over the years Disney has become something akin to both a religion and a rite of passage. "What? You HAVEN'T been to Disney yet?" kids will say to Anna, looking at her as if she's sprouted horns. Maybe it's because we live in suburban Connecticut, but is it weird to think not everyone can drop, say, $6,000 on a vacation, sometimes annually? When I was a kid, my grandmother, God bless her, would shake her head sadly at the fact that our family couldn't afford Disney World. "Maybe someday you'll get to go," she would say forlornly, which made me start to feel bad when until then I hadn't cared.

2) To continue on that point, I didn't get to Disney World until I was 18, and that was fine. I still had a great time. I didn't feel as if I'd missed out on an integral milestone of childhood. I actually appreciated being able to go on all of the rides, and knowing I would always remember the experience because I wasn't, say, 3 or 4 years old. So when someone says we HAVE to get to Disney because the kids are getting older, it's hard for me to get into panic mode. Then there's the fact that:

3) I am not and none of my kids are "into" princess or costumed character people. Yes, Anna (and now Chloe) sometimes dressed up like princesses and would watch Disney princess movies. No, they have never eaten, slept and breathed only princesses. We are also not Mickey, Minnie, Goofy, Donald Duck, etc. fanatics. Not that there's anything wrong with that. It's just not us. My kids tend to see Chuck E Cheese characters and back away. Except Ethan. He thinks they're kind of cool. Animatronics also have tended to make each of the kids nervous at various stages. Let's just say no one in our house is begging to breakfast with a bunch of characters.

4) The price. I guess I mean not the price as much as the price to do Disney the way people say Disney "should" be done. Most people I know these days fly there, stay at a resort, get the meal plan, book special events with characters, and so on. I understand the convenience of doing so. It's still a little hard to fathom when this kind of meticulously orchestrated trip was so different than the "budget" visits we took to Disney with our family. We drove there. All night. We stayed in the Orlando area in various versions of Econolodge motels. We did NOT dine in the parks if we absolutely had to but snuck in snacks and ate out locally each night. We didn't do all Disney all the time but also visited the Everglades, Cape Canaveral, the beach. And without all of the bells and whistles, we had an extraordinarily good time. In truth, my favorite part of going to Florida was driving there and seeing different states...my first palm tree...and the way the New England winter gloriously transformed into spring. Which leads me to:

5) I'm not the hugest fan of fabricated places. Shopping malls have kind of fallen out of fashion, but I've never liked them. Vegas? Shudder. Give me a mountain, a lake, or a beach. Or a small town main street, museum, or antique shop. Give me the real thing rather than a real cool version of the real thing. It's like Animal Kingdom, at Disney. I'd rather do an actual safari. I'd rather see a really cool giant tree than the Tree of Life. I'm kind of drilling the point home, I know. You've got it, you've got it.

I guess it's not so much that Disney World is a terrible place but that I would prefer we see it on our terms. That may end up being a little bit unconventional, the same way it was for me, growing up. Maybe we will do the long drive there to save money and retain some freedom. Maybe we won't book every experience there or go to the park every day. Maybe some days we just want to be able to enjoy a day at the pool, or the beach. Maybe we won't get the meal plan but will venture out to an all you can eat BBQ like "Sonny's" (I think it was called), quite possibly one of the messiest but most delicious indulgences I'd ever had up to that point. Maybe we won't see every nook and cranny of the parks but will take time to venture out and explore roadside attractions like GatorVille or Citrus World (these are probably not real places, but I imagine they could be). Maybe I don't want to ride the monorail but ride through the Everglades.

I guess I'm not so much of a Disney curmudgeon as just someone who really loves a travel experience that involves truly immersing yourself in a foreign location and seeing and tasting life the way the locals do. The creativity and imagination that is Disney is great -- but this other type of exploration is rewarding in its own grittier way. I hope we are able to show and teach the kids about both types of amazing.


Tuesday, March 7, 2017

It's Not About Winning or Losing...Except, It Kind of Is


So this year for the first time Ethan decided to play basketball. This has been a learning experience -- for all of us.

I may be a huge football and baseball fan, but basketball, eh, not so much. The last time I really remember watching it regularly was as a child when my dad would flip on Channel 38 from Boston to watch Larry Bird and Kevin McHale, so we're talking ancient history here. At that time I took little away from the game except that these men had scarily hairy armpits.

All those years ago I never really picked up the rules of the game (same for Dan), so watching Ethan play basketball has felt a little bit like flying blind. Maybe it's for the best. I can't be an annoying parent from the sidelines if I don't really know what he's supposed to be doing, right? Obviously, everyone knows (well, except Anna, who is completely and utterly sports-averse) that a basket is two points and that you can't run with the ball, you have to dribble. Other than that, I've been learning as I go -- and it doesn't help that in his league, they don't play by all the rules (no three-pointers or foul shots) and they kind of enforce others but not fully. Let's just say there's been a lot of hearing a whistle blow and having no idea why.

So we're learning, and we've also learned that Ethan is pretty good at basketball. As often seems to be the case, he's not the star of the team but one of the better players. And the fact that he never complains about going to a basketball practice tells me he likes playing.

As for his team? They're okay. Middle of the road. They seem to score about 12 points every game, which is about what every other team seems to score. Twelve points in 45 minutes. Yeah, we're not talking NBA here.

One day we were in a restaurant chatting about sports and I heard Ethan talking about a mantra all of the kids say because they've heard it so many times at school. "Mamma?" he said. "I don't like when they say it's not about winning or losing, it's about having fun." I'm not sure what precipitated this, but I knew where he was coming from. Every field day I'd attended, every class game I'd seen them play, I'd heard teachers say this. I feel as if somewhere along the way, the pendulum had swung from maybe over-zealous competition to a complete elimination of celebrating a win or lamenting a loss. That night I was feeling a little punchy.

"You know what, Eeth? I understand. Guess what? Sometimes it IS about winning and losing. It's about having fun and learning, too. But yes, it's okay to want to win." Didn't we just go crazy over the Patriots winning the Super Bowl? Didn't we seethe every time the Yankees beat the Red Sox? In all of Ethan's team sports, while they haven't emphasized win-loss records or keeping score, every kid kept track and of course celebrated a victory.

Ethan seemed surprised that I would at least halfway contradict a message he'd heard so many times. I tried not to sound indignant. "I just want you to know it's okay to try to win," I told him.

A few weeks later, we walked into the gym for basketball on Saturday morning and saw we were playing a team Ethan's friend from next door was on. There were also two kids from his class on the other side. It was a good game. It was a close game. Both teams were very evenly matched. It really could have gone either way, but in the last few seconds Ethan's team failed to score and the other team won by two points.

I could see Ethan's face crumple up. For the first time all year, he was struggling to keep it together. He's been so much better about this, but close games are hard. Especially close losses against friends. While everyone else gathered up their things, he was sitting on the floor of the gym, crying, head in his hands. The coach looked questioningly at me, probably for the first time realizing why I had given him a heads-up about Ethan's background. I never know if I should do this, but really it's for moments like the one we were having. "He's not hurt," I explained. "It was just such a close game..."

Somehow I managed to get him off the floor, while he continued to cry and people continued to ask what was wrong. Out in the hallway, I tried to reassure him. "It was a really, really close game. Anyone could have won."

"I DON'T CARE. It IS about winning. Winning is everything!" he shouted.

Ugh. I knew where this was coming from. In a second, I understood in part why the schools emphasize over and over that it's "just about having fun." Emotional regulation is such a valuable skill these days, and it seems to be lacking more than ever, in all of our kids. How in the world are they supposed to run a field day with not one but 10 kids in a class losing it over a loss?

"Ethan, it's not just about winning. Winning is great. But it IS also about learning and growing. You guys have gotten SO much better since you started. I'm so proud."

He calmed down a little, but not much. As it turns out, he was worried most of all about the boy from his class, who he felt was going to tease him on Monday for their loss. Then he turned on us. "You should have cheered more! Why did the other team have more fans?!"

"They had at least three more kids on their team than you guys did...there were more parents because of that."

"Well, why did they have more players? Then we couldn't rest ours! That's not fair!"

This went on for a while. Then he wanted me to buy him a treat to cheer him up, and I said no, since I didn't think it was a good idea to always try to solve every sadness with food.

By the time we got home, Ethan took some time in his room to calm down and finally put the game behind him. We all did, except I was left wondering how to best address this issue of winning and losing...because even though I wasn't thrilled with the meltdown, I still didn't want to let go of the message.

I still want him to know that it's okay to WANT to win. It may not be the only thing, but of course it's important. Such is the nature of sports and competition. I have no problem with my child being somewhat competitive and having an internal "drive" to do well. It's when the rigidity gets mixed in that we run into trouble.

There's not an easy answer to this one, but that's okay. I think it's more of a "learn as we go." Maybe we got a little too focused on winning last time, and need to turn the dial down just a little. But I refuse to turn it all the way off, because there will be times when he wins or loses, and there are a lot of big emotions that are going to come with it. It's better to learn to deal with them now rather than just convincing him it doesn't matter. Winning DOES matter...but sometimes it's our response or reaction after that win, or loss, that is most vitally important.



























Thursday, March 2, 2017

He's Calling the Shots

Ethan noticed an old slip of paper stuck to the refrigerator. It was a reminder for an appointment with Dr. Milanese, the developmental pediatrician, that we'd made but had cancelled last-minute.

"Why didn't I go to this appointment?" he asked impatiently. I was surprised. Attending doctor's appointments was rarely at the top of Ethan's (or most kids') priority lists.

"Well, I don't know..." I hedged. I couldn't quite explain why I'd cancelled the appointment, and I think it's because I'd be hard pressed to explain why we'd made the appointment in the first place.

When your kids are little, before, during and shortly after diagnosis, these meetings with the developmental pediatrician are essential. They really are the autism experts. Birth to 3 evaluators weren't too phased by his red flags, and neither was his pediatrician, but Dr. Milanese had him diagnosed in an hour.

Follow-up after a diagnosis, especially one that occurs when a child is very young, is critical. Children grow and change quickly, and sometimes (but not as often as people wish) a diagnosis is "fluid." Ethan was diagnosed at 22 months by the CARS (Child Autism Rating Scale) assessment, which is designed for kids age 2 and up. CARS scores range from 15 to 60, with scores between 38-60 indicating severe autism and scores between 30-37 reflecting mild to moderate autism. Scoring under 30 places a child off the autism spectrum (but undoubtedly with some autistic traits). Ethan first scored at the high end of moderate, close to severe. A year later (and the year after that) he scored in the mild category. Was that the result of therapy, or was the test initially not accurate due to how young he was? I'm convinced it was some of both.

But that was at the beginning. Once your child has scored on the autism spectrum three years in a row, it's a good bet he's probably staying there. So visiting with the developmental pediatrician becomes less about assessments and more about "checking in." We've done that once every year or two since Ethan was about 4. I enjoy talking to a professional and chatting about Ethan's progress. That being said, if she was to offer recommendations about therapies or other ideas to implement at school, for example, she doesn't have much clout, unfortunately. I can present the school with a report from the developmental pediatrician, and they can say, "thanks, but no thanks." There's nothing legal there. So our visits really become not much more than informal times to chat. And that bugs me a little, because all I can think is how many other parents may be stuck sitting on waiting lists, desperate to get in and have their child evaluated. Even Dr. Milanese, who has a fast-track kind of program to get toddlers in quickly, has typically a six-month waiting list. Why should we be taking up valuable time?

All of this is a very long way of explaining why I'd decided to just go ahead and cancel Ethan's appointment last year. But now he wasn't having it.

"I want to see her," he said firmly.

"Ummm...okay."

"What are we going to do there?" he asked. "Are there going to be shots?"

"No, Eeth. I told you this before. She's a special autism doctor. She's not going to check your heart and lungs or anything like that. She just talks to you."

"Well, you need to make that appointment." There was a pause. "I'm going to talk to her." Even though the last time we went, Chloe was maybe a year old, he seemed to have no recollection of her. I believe she gave him a game of Checkers.

I'm not sure if Ethan is insisting on this appointment because he can't stand breaking rules, and we had an appointment that we missed, so this is a wrong that must be righted...or if he really is curious. I would love to see him have a really good chat with Dr. Milanese, a doctor that's not going to use code words and pretend he doesn't know what autism is.

We did tell him he wasn't going to be able to trick Dr. Milanese. Even if he used all of his good eye contact and worked hard to chat with her, she would know about his autism. I don't think he's trying to convince her he's something he's not, though, because right now, he's good with autism.

I feel as if I've talked about this woman on and off on this blog for a number of years, sometimes grudgingly, and I have to set the record straight -- she's a really, really good autism doctor. And a kind person who has gone out of her way on numbers of occasions to talk/answer questions via email. Any frustration has been just displaced anger...maybe because there is always a little part of you that thinks, "Maybe THIS time she'll proclaim him off the spectrum," yet she will always point out something new-spectrummy that he does, however minor.

Over time I have learned that line between on and off the spectrum, those numbers just above and just under the CARS 30, represent an amazingly murky area. You can have a diagnosis and be less "quirky" than someone with one. There are many, many of us who reside somewhere in that gray area of almost-but-not-quite. It's okay to live there. Even if Dr. Milanese's job will always be to help people inch as close as possible to that "typical" line.

I don't quite know why we're going, or what we're going to do there, but Ethan wants to meet with the developmental pediatrician, so we're going to -- in November. I consider this perhaps his very first step in self-advocacy.
























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.