Monthly Archives: March 2012

One in Eighty-Eight

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I’m sure there are a lot of blog posts with similar, if not identical, titles this morning. But it bears repeating until the numbers sink in.

One in 88 children. One in 54 boys. A 78% increase over the past five years.

In my state, the incidence is significantly higher. The numbers are so alarming, and rising so quickly, that they risk having the opposite effect — they risk becoming ignored as outlandish or worse, accepted as normal.

I do not pretend to know the cause. Clearly better, and wider, diagnoses are a significant contributing factor. How much is caused by something else, and what that something else could be, is well beyond the scope of my understanding.

But what I do know is this: those numbers are unsustainable. And by unsustainable I mean even the best public support systems will collapse under the weight of the load.

Yesterday was IEP day for our family. Just for fun, it was triennial re-evaluation day as well. We spent two full hours sitting around a table with no fewer than eight people from our public school system discussing our son’s evaluations, eligibility, placement and educational program for the coming calendar year.

Eight people — case manager from his current school, case manager from the school he will attend next year, general ed teacher, resource room teacher, aide, school psychologist, speech therapist, occupational therapist — times two hours. That’s sixteen hours right there, devoted to one largely procedural session for one child. That says nothing of the countless hours more spent observing, testing, scoring the tests and writing up literally hundreds of pages of documents again related to one procedural session for one child.

Hundreds of hours spent on one child, and we haven’t even covered a single minute of actual therapy or special education. You start doing the math and it makes your head spin. And my child is mildly affected and high-functioning. How can this system possibly support the avalanche of kids that will be diagnosed and added to the special education rolls in the coming years?

I have no desire to argue politics or causes. It saddens me that there are ongoing divides in the autism community. My only wish is that people will look at the numbers and the staggering rise and realize there is already an enormous crisis on our hands, one that will affect not only special education kids to come, but general ed kids as well as the system is put under more and more strain by the numbers of the newly diagnosed.

And so it is my personal choice to continue to support Autism Speaks in it efforts to find better and earlier diagnoses, more effective methods of treatment as well as to understand why this is happening. With World Autism Awareness Day and Autism Awareness Month upon us, I hope that those who are able will consider supporting Autism Speaks or another worthy organizations — of which there are many — with a donation.

At these rates, autism is not just a problem for parents of kids on the spectrum. It is a problem for our society.

Light It Up Blue

April is Autism Awareness Month. Please considering supporting one of the many worthy research and support organizations.

P.S. — Since this is an autism/hockey blog and we’ve been 100% hockey free today, I feel the need to mention that I did raise issues with the evaluation of Ryan’s paragraph abut why Canada is his favorite place in the world. I don’t know if I scored any points, but I tried.

P.P.S. –  Sharks, we need to talk. Ninth place with four games to go. Did you know Ryan’s IEP contains mention of both your team and Joe Thornton? How about paying the kid back with a couple Ws?

A Case of Mistaken Identity

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Trying to teach young children about Sept. 11 is a touchy subject, especially when they start asking why the attacks occurred.

Ryan was less interested in understanding “why” and more concerned about “who.” So we talked to both kids about Osama bin Laden. When he was captured last spring, and his name was all over the news again, Ryan again began asking about him.

We did our best to explain what had happened and why, but I’m not sure how much of it registered with him. He wanted to know if it would happen again, and as always, was not happy with the answer “we don’t know,” which does not fit with his black-and-white view of the world. Eventually, as the news story died down, he stopped perseverating on the idea.

His conversations returned to being 100% about hockey (as opposed to 95% during his brief interest in global affairs). But occasionally, the two subjects would cross, leading to this exchange one random morning:

“Dad, who was that guy that attacked America again? Was it Oliver Ekman-Larsson?”

Umm, no. This is Oliver Ekman-Larsson. He plays for the Phoenix Coyotes.

Oliver Ekman-Larsson

Not Osama bin Laden

I’m sure we can all agree he is not Osama bin Laden.

He is, however, a fine young NHL player. I hope he is not offended by the comparison. And yes, we really do talk about hockey a lot in our house.

Milestone Pucks – A Lesson in Inclusion

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Hockey — which we write about a lot in these parts — is the most tradition-rich of sports.

The NHL is fast approaching its 100th birthday, a milestone that has already been achieved by one of its clubs, the Montreal Canadiens. The trophy for which its teams compete, the Stanley Cup, is well over a 100 years old and is the most famous trophy in sports.

Among the on-ice traditions, there are some memorable ones. There is the practice of tossing octopi on the ice in Detroit. The post-playoff series handshake. The practice of growing playoff beards. Congratulating your goalie first, win or lose. Always celebrating as a team, never as an individual.

The wonderful thing about a lot of these traditions is they are practiced at all levels of hockey, from peewee to the NHL.

Another memorable hockey tradition: any time a player achieves a milestone, be it first or 500th career goal, first or 50th career shutout, a teammate will fetch the puck and set it aside to be presented to the player in the post-game dressing room. When this happens in an NHL game, the cameras will usually find the equipment manager wrapping the puck in white hockey tape and marking the details of the occasion with a Sharpie.

Nathan Gerbe

This scene is repeated in a lot of NHL dressing rooms.

Ryan’s first “real” hockey season ended this past weekend, and it was nothing short of a rousing success. I took him to the first evaluations in October with a pit in my stomach and a lump in my throat. As soon as I had the conversation with his coach, I knew things would be fine. This was a coach that got it down to his sole. He believed in teaching and learning and having fun first and foremost. Do those things, and the wins — and smiles — will come.

Ryan was able to keep up, but there was an ability gap between him and the rest of the kids. Yet Coach M played him in all situations, encouraging him every step of the way, and his teammates — and their parents — followed suit.

Ryan had come close to scoring a goal a couple of times, but still entered the final weekend tournament without an official point on the year. Saturday afternoon, with his team down two goals in the third period, Coach M sent Ryan out on a power play. Veronica and I exchanged a glance. We love that Coach M plays the “next man up” no matter the situation. Still, at critical points in various games we shared worried looks as Ryan took the ice, hoping he wouldn’t be responsible for some sort of critical failure at a key juncture.

Bourdon

Yet another milestone puck, marked in Sharpie.

The puck came to Ryan in front of the net. He tried to shoot, but took too long to get the puck off and it was blocked harmlessly to the corner. A few seconds later, the puck came to him again. This time, he was quicker to get a shot. He wristed a backhander toward the net. It was saved, but a teammate stuffed home the rebound. I turned to Veronica. “That’s a primary assist!”

We looked back at Ryan celebrating with teammates and continuing fist pumps all the way back to the face off circle. Such pure joy is wonderful sight to behold. I’m sure I was beaming like a split watermelon. The other parents all offered congratulations.

In my excitement, it didn’t occur to me that Ryan had not had an assist all year. So it was a surprise when in the dressing room, as I helped Ryan with his skates, Coach M finished his post-game talk by singling out my son.

“One more thing guys,” he told the room. “We had a player get his first-ever assist today.”

Andrew Gordon

Are you noticing a trend here?

As soon as the words came out of his mouth, all his teammates started yelling Ryan’s name and jumping up to offer high fives and congratulations. As they did so, Coach M pulled a puck out of his pocket and gave it to Ryan, who could not have looked more excited than if his beloved San Jose Sharks had just won the Stanley Cup.

As this scene played out, I stepped back, wanting Ryan to have this moment with his coach and teammates without my interference. I felt like I was going to fall over, the rush of emotions was so sudden. I wish everyone could see this scene. This was a room full of 11 and 12-year-olds, almost all boys. A bunch of them are likely “the cool kids” at their schools. And yet they treat my son, with his awkward social interactions, his voice that’s always too loud, and his beginner-level hockey ability, as an equal.

This is inclusion, and everything it is meant to be, and I am so incredibly grateful for this coach, these kids, and their parents who have clearly done a great job raising them. I’m pretty sure they have no idea what it means to Ryan or our family that they treat him as they do, but I will never forget it.

First Assist

A hockey tradition. Continued.

When I regained my composure, I did what any good hockey equipment manager does with a milestone puck. I wrapped it in white hockey tape, to be marked with the details of the occasion in Sharpie. When we got home, I took a picture.

Can you tell which of the celebrating players in this post are in the NHL, and which one is on the autism spectrum?

A Good Day

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Ryan had lots of difficulty going to sleep Thursday night (thankfully the first such episode since this post) but rather than write about that I wanted to turn back the clock a few days to Sunday — a day full of simple joys in our house.

Riley is in her second season of travel soccer, which has presented some challenges. Ryan hates soccer. He hates having to go to the games. He hates having to even drop her off at practice. He doesn’t usually keep these thoughts to himself. There’s lots of “soccer is stupid!” and “soccer sucks!” … and lots of increasingly frustrated requests from us to cut it out.

It’s another of the many situations where we have to decide how far to push. Do we let him get his way, knowing that it might make him even more resistant the next time? Or do we force him to go, and risk a difficult scene, and possible embarrassment for Riley?

We’ve decided to split the difference. Ryan attends all the home games, but doesn’t have to go to the road ones. Veronica usually ends up taking her while he and I stay home and play or watch hockey.

Sunday was the first home game of the spring season. We braced ourselves for a struggle with Ryan, but it never materialized. He went willingly, opting to bring along a textbook to study for a school test the next day. On a whim, I suggested that we bring a football to throw around. I always see other dads tossing a football with their sons at the games and I’m always jealous.

Hockey is clearly the top sport in our house, but I’m also a huge football fan. I’ve tried to spark an interest in the sport in both kids, but have only found success with Riley. Not so with Ryan — other than on one glorious occasion — who insists that he ONLY loves hockey.

To my surprise, Ryan agreed to bring the football. This was not an accident. Ryan has a new friend, and had recently been invited to his house to play after school. His friend loves football, and Ryan insisted that he would play whatever his friend wanted to do when they were at his house. His perseveration on hockey has scuttled other play dates, so this was real progress.

He told me he wanted to practice at football so he could play with his friend, so I tossed the ball in the back of the car with the soccer chairs.

Ryan didn’t complain at all going to the game. I spent the first half keeping one eye on the game while helping Ryan study. When we finished reviewing the material, I asked him if he wanted to throw the football. He surprised me again by saying yes. We only tossed the ball around for a few minutes, but they were a glorious few minutes. And he both threw and caught the ball better than I expected.

In the second half, he opted to go exploring around the field allowing us to focus on Riley. Ryan asked how much longer a few times, but was far less anxious about leaving than is typical. The game ended, we quickly packed up and headed home.

In the car, another surprise. Riley was upset about having let up a few goals when she was in net. Ryan was genuinely sympathetic and tried to lift her spirits. When we got home, I had promised Ryan we could watch the afternoon NHL game that I had DVRd.

Riley wanted to go biking, but in our super-hilly neighborhood, this requires adult supervision. Because Veronica had some errands to run, I would be unable to take her. Riley learned to ride her bike last summer and probably could have at least a year or two earlier. The truth is, I didn’t want to teach her because Ryan, two years older, still can’t ride a bike. Well, I’m sure he could ride a bike, but he has no interest in it. The child can ice skate, so I’m sure he could figure out a two-wheeler, but he has no motivation to do so. I finally ran out of excuses with Riley last summer and she picked it up in about 15 minutes. Since then, she often wants to go bicycling.

Up on Two Wheels

Riley, up on two wheels for the first time. Summer, 2011.

I apologized but promised to let her go with a friend if the friend’s parents could watch them. The friend was going to the movies, so Riley was out of luck. She retreated to her room, mildly disappointed, while Ryan and I sat down to watch the game.

Watching a game from start to finish with Ryan is a rare treat. We don’t often get to because he has to go to bed on weekday nights and weekends are so packed with activities. So when we can carve out three hours to spend together watching a game, I try to enjoy every minute of it. This game was no exception and we had a blast watching the Flyers beat the Penguins with less than a second to go in overtime.

When the game ended, I had planned to switch to the NCAA tournament and spend the rest of a lazy Sunday on the couch, maybe have a beer or two. But as soon as it did, Riley asked again about bike riding. I didn’t feel like it, but I looked out the window, saw a beautiful spring afternoon, looked down at my daughter and saw her pleading eyes, and changed my mind. Instead of watching her ride, I’d get out my own bike and join her.

We usually pile the bikes into the car and drive some place flat, we’d just ride right from the house, carefully gliding down the big hill at the start. We quickly found our way to some quiet back streets and spent the next 90 minutes turning laps around the neighborhood and generally having a wonderful time. With dusk approaching, we finally headed back to the house.

We topped the day off with a family dinner in front of various hockey and basketball games on the TV.

It wasn’t a perfect day, but it was pretty darn close. We’d done some things as a family, and others separately. But that’s what works for us. For me, I got to spend quality one-on-one time with each of my children doing something each of them loves. What could be better than that?

Let’s Evaluate

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We received the notice the other day.

It is time for Ryan’s triennial re-evaluation through our school district. He has undergone a battery of intellectual, psychological and motor tests to determine his ongoing eligibility for services as required by state law, and soon we will meet with our child study team to discuss the results.

The first time we went through this process, we were afraid he would be declared ineligible for services. We no longer have that fear.

The worst part about these evaluations is reading all the reports about your child’s abilities (or lack thereof). After a few pages and numerous references to results in the “low” or “low-average” range, I get numb to it. I know these reports do not change my child. The numbers on these pages do not define him. Sure, they’re a part of who he is and the struggles he faces. But they do not change the child that he is, the child that I love, any more than giving him the label “autism” does.

IEP

Image from myaspergerschild.com

I do feel compelled to point out that among all those “low-average” and “low” scores, Ryan managed a “superior” score in math reasoning, in which he tests at a college level.

I am not criticizing the reports, nor the evaluators that prepared them. The child study team at our school is wonderful. They truly know Ryan and many of them have worked with him for years. The reports are detailed and painstakingly prepared, and they paint an altogether accurate portrait of our son.

But not everywhere. In some areas, there are discrepancies between a low or average score and the extraordinary abilities that we have observed. For example, Ryan scored in the average range on one memory test. This is a child that committed the results of an entire 1,230 game NHL season to memory. That is not average.

In those discrepancies, I find hope. Hope because I know that the reason Ryan scores poorly in some areas that are clearly a strength is that he has no interest or connection to the subject matter, and lacks the social or self-awareness to understand the importance of applying himself to the test anyway. He hurries through academic work and makes careless errors because the work is a chore to be endured since it does not capture his fascination.

Yet he can spend hours typing NHL standings from memory — 30 teams, their wins, losses, and overtimes losses, and their goals for and against. Whether he’s typing the standings from a given date in an actual season that he has memorized or whether they are standings that he has simply made up, the numbers always add up correctly (the composite “goals for” are equal to the “goals against”).

This gives me hope that one day he can find his niche in a field that captures his attention and interest and allows him to apply all his gifts and abilities. Maybe that field will involve hockey. Maybe he will have moved on to something else, but that’s hard to imagine given some of the observations in the report.

The section where he had to complete partially written sentences included the following:

I hope to … grow up to be an NHL announcer.
I am best at … playing hockey.
My favorite thing to do is … to watch hockey.

In the psychological profile, he was asked to comment on his home and family life. The evaluator included this gem:

The family has gone on many enjoyable trips to places like Boston, Philadelphia, Detroit, New York City and Long Island.

Yep, all the vacation hotspots. Let’s see … Boston (for hockey), Philadelphia (hockey), Detroit (hockey), New York City (hockey) and Long Island (you guessed it – sorry no link as I haven’t written about these trips yet). We have gone to actual vacation spots, but I guess a week a Disney or on the beach just doesn’t carry the same weight in his world.

On another test, he was asked to write a proper paragraph about his favorite place, as well as to describe and explain why the place he chose is his favorite. This is what he wrote:

My favorite place in the whole entire world is Canada. That is because hockey, a loud sport on ice lives there. My favorite sport, is hockey. It’s loud and is a place for fun. Their sports arena belong to hockey. People there go crazy over the stanley cup. I learned in this sport four years ago. I wish I loved it my whole life. I play it, it’s so good.

His writing scored below grade level for use of punctuation and capitalization of proper nouns. His writing “lacked descriptive adjectives.” I can see all that. But I do have a bit of an issue with the evaluator saying that Ryan “tended to write detail sentences that were off-topic. He appears to write about the sport of hockey as opposed to his favorite place, Canada.”

I disagree. Canada is Ryan’s favorite place only because I’ve told him how in Canada, hockey is everyone’s favorite sport. To him, Canada is some sort of magical land where everyone is as interested in hockey as he is.

In a week or so, we’ll gather with our child study team. We’ll discuss all the reports. We’ll hear that Ryan is still eligible for services. We’ll talk about his upcoming transition to a new school and begin framing his IEP for next year. There will be tears, and hugs, and a few laughs. Veronica will bring some sort of home-baked treat.

Before we leave, I’ll argue that his detail sentences did support his topic sentence. But mostly, I’ll hope once again that all of this effort by all of these people who work with our son will lead him to a place in life where he fits. Where his interests and his abilities can mesh perfectly. Where the things that make Ryan Ryan can be assets and not hindrances.

Where he can be happy.