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.

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.

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.