Monthly Archives: July 2012

Camp: A Progress Report

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Indoor amusement park

Who wouldn’t have fun in an environment like this? Note – this is not actually the kids’ camp. (Photo credit: Gavin Anderson)

A few posts back, I said that Ryan “tolerates” summer camp.

I believe I understated things. Ryan actually, genuinely is enjoying camp.

Now, an uninformed person might look at the camp setting — a giant, indoor-outdoor arcade and pool complex and think, “Of course he enjoys camp. Who wouldn’t enjoy spending summer in that setting at his age?”

But you, dear reader, by virtue of being on this site, are very much informed. And so I don’t have to tell you that it’s not that simple and that it is a big deal to have Ryan express such positive feelings about camp.

It hasn’t been perfect. There have been a few challenging moments when Ryan has had angry outbursts. He also still tends to keep to himself and do his own thing. We have heard secondhand reports of other campers who have told Ryan they’re sick of hearing about hockey.

But as much as we would like to see Ryan socially integrate more with the other kids, those are issues for us and not for him. He has made it clear that he is happy at this camp, wants to go back next year, wants to go full-time, and wants to go until he ages out in a couple more years.

This was never more clear than Friday night. It was the camp slumber party. Riley was excited to sleep over. Ryan went back and forth, as did we. He wanted to go, he just wasn’t sure he wanted to sleep over. Veronica and I wrestled with what to do. One one hand, we were thrilled that he wanted to take part and would even consider spending the night. On the other, we were worried about what the overnight experience would be like for Ryan, for the other campers, for his counselors.

Ryan likes to go to sleep. He rarely fights to stay up late, and will sometimes put himself to bed even when we allow him to. His sleep ritual is full of carefully crafted routines, involving melatonin, blackout shades, white noise, calming music and a weighted blanket. When Riley excitedly told us how everyone was planning to stay up all night, we worried for Ryan. We could imagine him taking part for a time, before having a meltdown when he was ready to go to sleep in the giant common room while noise and activity raged around him.

When Veronica discussed it with his counselors, they suggested bringing him for a while and then picking up at 10 or 11 p.m. Ryan may have expressed his anxiety about the sleeping arrangements to his counselor. When we offered him this compromise, he jumped at it.

So Friday night saw us drop off both kids, one with all her sleeping gear and one without. Veronica and I headed out to dinner for a few hours — had to take advantage of the free babysitting opportunity — before coming back to pick up Ryan some time after 10.

When we found him, he was having a blast, playing arcade games and air hockey with counselors and other kids. We let him run around a bit longer while we talked to his counselors, all of whom possess maturity beyond their years and had nothing but positive things to say about having Ryan at the camp. They marveled at his hockey knowledge and ability and said he was fitting in well. We said good night to Riley and headed home with Ryan, knowing it was the right decision.

If I had any doubts about bringing Ryan home, they were erased when I collected Riley in the morning and found a bunch of the most exhausted, miserable looking children I had ever seen. Oh, they had a wonderful time. Riley recounted late-night movies, ghost stories, and general chaos. But even she had her limits. She said she had fallen asleep around 3 a.m. but was continually annoyed by the other kids making noise around her. Hearing these stories, I knew we had done the right thing for Ryan. He would not have fared well in that environment. Riley was asleep on the couch about five minutes after getting home and didn’t stir for four hours.

Sometimes the choices we face with our kids are either all-in or all-out. As parents, we have to weigh the fight vs. flight options before us. But other experiences offer room for compromise, to be handled in a way that best suits our unique kids. I am thankful we were able to find an appropriate compromise for Ryan in this situation.

I am even more thankful that we have found a summer camp experience where he feels comfortable and indeed happy. So much of the struggle we saw during the last school year came back to one thing — too often, Ryan seemed unhappy at home. It was that, more than anything, that encouraged us to seek extra help during the past year. It has been a bumpy ride, but I’m happy to report that an honest evaluation of Ryan today, mid-summer, would most definitely not include the word “unhappy.”

And that makes us, well, happy.

Mini Golf and a Memory

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Mini Golf

Mini Golf (Photo credit: Explore The Bruce)

I was home with both kids, set to enjoy a random mid-week day off while Veronica worked an extra day at her office.

We had nothing scheduled as the kids only go to camp on Veronica’s regular work days, a fact that was not lost on Ryan. The night before, he must have asked 15 times if we had any place to go. He likes to have his days planned in advance. We give him space to do the things he enjoys doing at home on these unstructured days, it we also try to balance it out with some structured activity, whether it’s running errands or going to the town pool. Ryan tends to isolate himself when he spends entire days at home and his behavior suffers as a result. Even he recognizes this trend.

Veronica reminded me of the need to get the kids out of the house before she left for work. She knows I’m not as ambitious at planning outings, and she did not want me to let the day slip by without any activity.

I told Ryan we would be doing something, I just didn’t know what. Everyone made suggestions. We settled on mini golf, but just as we were thinking about getting ready, the skies turned dark and a thunderstorm rolled in.

Time for Plan B. To be honest, I wasn’t that enthusiastic about Plan A. Ryan has a checkered history with mini golf. His first outing is one I vividly remember — for all the wrong reasons. We were at the Great Wolf Lodge for a two-day stay during spring break a few years ago. We have had several successful experiences at the Great Wolf Lodge and it has been one of our “safe” spots. After talking Ryan into trying some of the bigger slides, it was great to see him run off with Riley for hours, riding on their own. It’s those moments that make the exorbitant prices worth it.

For whatever reason, we decided to augment this particular visit with a round of mini golf on the on-site course. After paying the fee — an amount that might have covered nine holes at Pebble Beach — the outing quickly turned into a disaster. Ryan wouldn’t wait for other groups to finish their holes ahead of us. He wouldn’t wait for his ball to stop before hitting it again. He refused to let me help him properly hold the club. He complained, loudly, about how long it was taking. The round was ruined for Riley, who was just trying to enjoy herself. After nearly pulling the rip cord and abandoning halfway through, we finally coaxed Ryan to the 18th hole, where he promptly sank the impossible “free game” shot. I can assure you, we did not collect on that coupon.

Other outings have been somewhat better, but he’s still too impatient, holds the putter like a hockey stick (and hits the ball like a slap shot) and generally loses interest after a few holes. So when the weather intervened, I suggested a movie instead. I could not talk him into Ice Age 4, and taking him to a movie he didn’t want to see would ruin it for Riley.

It was Ryan that finally came up with the plan. He suggested a different mini golf outing. This course was indoors, full of black lights, loud music and Halloween decor. Ryan had played it a couple of years ago on an outing with his social skills group, and apparently had fond memories.

We arrived just behind a large group of day campers and would told it would be 15-20 minutes before we could get on. Normally, this would spell disaster and have me scrambling for the exit. But the course just so conveniently had an arcade in the waiting area with two air hockey tables. Ryan loves air hockey. We have a small table at home but he never passes up the chance to play at an arcade. The time passed quickly as he beat me in three straight games while Riley played Skee Ball and Whac-A-Mole.

Once on the course, Ryan surprised me with his engagement. He was still impatient and wanted to hit his ball before it stopped rolling, but he didn’t complain about waiting for the group ahead of us to finish and was willing to listen to pointers about holding the putter properly and not hitting the ball too hard. He was also better than Riley, a sign of his growing coördination — something gained from the endless hours of backyard street hockey. The lights and the music and the fake monsters didn’t bother him at all.

I was feeling good about things as we prepared to leave. We had gotten out of the house, and done something at Ryan’s suggestion that had gone better than previous attempts at the same activity. Both kids had enjoyed themselves, and we had killed a good part of the day, with lunch still to come.

As we were walking back out through the arcade, another memory struck that put things into perspective. There was another group of day campers entering. I recognized the name of the special needs camp Ryan had attended several years earlier on one of the kids’ shirts. I immediately scanned the group of watching children for signs, and they didn’t take long to find: hand-flapping, unexpected noises, looks of general detachment. I asked Ryan if he noticed the name of the camp and he recalled it as the camp he hated. His last year there, he had an ongoing conflict with another boy in his group, and he still brings up the name any time we discuss bullying. That experience has colored his entire memory of the camp.

We decided to go in a different direction the following summer because Ryan did not want to go back, and because the wonderful camp director had told us he was a borderline candidate. Subsequent camps have been a mixed bag. Ryan struggles to fit in, but has had some incredible counselors and shadows. His current camp is about as good as it gets. The counselors are excellent, and Ryan does willingly. He he still has his social struggles, but his overall experience is positive.

I was thinking about how far we have come from those summers at the special needs camp when something happening right in front of me snapped me back to the present. A girl of perhaps 11 started screaming and crying in the desperate, pained way that was all too familiar. I watched a counselor do exactly what I have done many times. He took her hand and quickly guided her away from the group to a quiet area outside the entrance, away from the prying stares of other customers, the lights and the music. He sat her in a chair and got down to her level so he could look her in the eyes and try to calm her.

He didn’t tell her to stop crying. There was nothing but kindness in his voice as he tried to figure out what was bothering her. In the few moments I overheard as we walked past, he figured out that she wanted to play but the monsters and the darkness scared her. He told her it would be OK and that she could still play.

When we got to the car I decided I had to say something. I asked Ryan if he knew why he had gone to that camp. I told him it was because of his challenges related to autism. I also told him he doesn’t need to go to that camp anymore. I wanted to make that point, to have him understand that just because his brain has different wiring doesn’t meant he will always have the same challenges or that he can’t make incredible progress. This was an interaction I would not have had in past years. Indeed, when Ryan had attended that camp we avoided explaining to the kids why they were at separate camps for the summer.

That too, is a sign of progress.

(Another) Coach Who Gets It

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Tuesday night at the street-hockey rink

One of the real bright spots of our summer so far has been Ryan’s participation in our town street hockey league. As I wrote a couple of weeks ago, we had “the talk” with his coach before the season about Ryan’s diagnosis and challenges. He offered to meet at a coffee shop before the first practice. We had a brief discussion about Ryan but I could tell right away the coach was at ease with him. He did not respond to Ryan’s excessive questions with annoyance nor did he look to me for help.

We ended up spending most of that meeting talking about the 1980s New York Islanders dynasty. It turns out the coach is a hockey geek just like me. He and I chatted about the NHL while Ryan quizzed the coach’s son about his favorite teams and players. Ryan was thrilled to learn the son knew a lot of statistics just like he did.

With any concerns about the coach set aside, we have been able to enjoy the season. Ryan’s team has won two of its first three games — equaling the number of winning games he played in the last three summers, combined.

While the wins are a pleasant surprise after the way past seasons have gone, the real upside has been the way the coach handles the team and the way Ryan responds to him. In the process, Ryan has learned some valuable lessons about sportsmanship, toughness, winning and losing with grace, and what it means to be a good teammate.

Both of the team’s wins have been by large margins, but not because the coach has poured it on. We had some experience with teams running up the score in this league in past years, so it’s nice to see a coach who understands that they aren’t handing out the Stanley Cup at the end of a rec league season, and treating the games as such. Once comfortably ahead, he instructs his team to work on passing and defense and to pressure the other team less aggressively. But he does so in a non-patronizing way. The team is not giving up, which could be taken as an insult to the losing team, but just adopting a less offensive posture. When kids inevitably still end up with scoring chances in these situations, he encourages them to shoot.

It’s a difficult thing to pull off with 10-11 year-olds, who haven’t really grasped why running up the score is a bad thing. Since Ryan treats every competition, whether it’s a hockey board game or backyard shooting contest, like an NHL playoff game, I wasn’t sure how he’d react to these instructions. Winning and losing is black and white and therefore easy for Ryan to understand (even though he draws a distinction between a close loss and a “butt-kick”). Changing your approach with a big lead is entering a gray area, but so far Ryan has responded appropriately.

Ryan tends to celebrate goals enthusiastically. So Veronica and I cringed a bit when he yelled loudly after a goal put his team up by eight or nine in the first game of the season. But the next thing I knew, the coach had pulled Ryan aside during a break, put his arm around him and quietly said something directly to him. The next goal Ryan’s team scored there was no yelling, just a brief high-five with the goal scorer. That message clearly got through.

The same scene repeated in the team’s most recent win. After their lead grew to four or five goals, the coach called timeout and gathered the team around him. Whatever he told them he said too quietly for us to hear from the stands. Before play resumed he pulled Ryan aside and again said something directly to him. From that point forward, the team adopted a defensive posture and celebrated appropriately.

After the game, Ryan had questions for us about the coach’s strategy. He wanted to know if the reason was for sportsmanship. We answered that it had, and reminded him that he knew what it felt like to be on the wrong side of a blowout loss. We also tried to explain the subtlety of not just giving up, which would have insulted their opponent, vs. playing more passively. That was a tougher lesson. I suspect that Ryan struggles to distinguish his coach’s strategy from the NHL. I have tried explaining to him that in professional sports, where the players and coaches get paid a lot of money to win, there is no running up the score. Sportsmanship is still important, of course, and thankfully the NHL still offers plenty of ready examples, from the post-series handshake line to the unwritten honor code that governs fighting.

Aside: I don’t enjoy explaining the place of fighting in the NHL to my kids, but if they’re going to see it, I want them to at least understand that there are rules and tremendous respect among fighters and that most of the time it is to stick up for a teammate. I wouldn’t mind if fighting went the way of the stand-up goalie, but as long as it exists my kids can at least understand why it happens.

Through four seasons of street hockey, one of ice hockey, and one of soccer, I can say that Ryan’s participation in team sports has been nothing but a positive. Yes, there are some cringe-worthy moments, but they are outweighed by the opportunity to teach valuable lessons and the social benefits. We have seen his coördination and social skills progress. We have seen him warmly embraced by teammates. We have found other parents encouraging his progress. We have seen him learn to react appropriately to injury — he was hit near the eye with a puck the other day, but didn’t cry and returned to the game after icing it for a few minutes — a far cry from the over-the-top meltdown that usually accompanies a stubbed toe at home.

I can only speak for my family’s experience, of course, and as the saying goes, your mileage may vary. That said, I encourage any other parents of kids on the spectrum to give it a try. I would also recommend speaking to the coach in advance just to set everyone at ease.

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An Eye for Detail

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Used Icehockeylayout.jpg as template for the b...

(Photo credit: Wikipedia)

I have to remind myself to appreciate Ryan’s gifts — the things he not only does better than average, but extraordinarily well.

It is hard, especially when he struggles. We spent part of Sunday at the town pool. For some reason, Ryan decided this summer that he no longer really enjoys being in the water. This is a bit of a concern, especially since we have another beach vacation planned for later in the summer.

At the pool, he usually occupies himself at the rec center. They have a Nok Hockey table and he often plays with other boys. He also often plays by himself, recreating some NHL game in his head, playing both sides of the table, providing the play-by-play at excessive volume, and keeping track of the stats with elaborate, hand-written box scores.

As you might imagine, this draws stares and quizzical looks. We check in on him from time to time, wanting to intervene, and if we’re being completely honest, wishing he would play in a more normal manner.

But he is happily occupied, and not asking to go home every five minutes. We enjoy some quiet time reading at a table by the pool while Riley is off playing in the water with friends. Every so often Ryan will materialize at our table, proudly displaying the stat sheet from his latest game and asking for food, or money for food, or “how many minutes until we go home?”

It is another of the many situations where we find ourselves torn between giving Ryan the space to do what makes him happy and pushing him outside of his comfort zone. In the end, we compromise. Veronica and I take turns popping into the rec center, encouraging him to play an actual game with another kid while we are there. We know he will go back to his own game as soon as opportunity presents, but it’s at least proof that he can play appropriately with other kids (and without making a million rules to turn a routine game of Nok Hockey into an approximation of an actual NHL game) even if it’s not his first choice. In this, I take at least partial satisfaction and rationalize allowing the rest by acknowledging that it makes him happy.

I think back to Saturday. I took both kids ice skating. We wanted Ryan to get back on the ice to see how he would do. We plan on him playing hockey again this fall but have chosen not to pursue year-round leagues, clinics and camps. He did quite well, barely taking a break during the 90-minutes session. Riley rested every couple of laps and stormed off any time she fell as Ryan happily weaved through the crowd.

Unlike other public skating sessions, Ryan did not act out an imaginary NHL game, cutting towards the net, pretending to shoot, and announcing — loudly — his “goals.” This was a pleasant surprise. Another: any time a child fell near him, Ryan skated right up to ask if they were OK. This was something entirely new and I don’t know where it came from. But it was a conscious decision on his part; When we got home he proudly told Veronica how he had tried to help anyone that fell down.

I was still thinking about both the pool and the ice rink when we got home Sunday afternoon. Ryan bugged me to play street hockey with him behind the house. I stalled for a few minutes while he went to prepare the “rink.”

When I came outside, the patio was marked up in sidewalk chalk with a blue line and a goal crease in front of the net. Ryan started his turn in goal and I fired a few pucks his way. Before we began the “game,” I insisted we practice a few things. I had a motive beyond making him a better street hockey player: to crack the rigidity that always governs these games. I knew once we started he would not only keep track of the score, but of each of our save percentages as well (he does this in his head, on the fly, keeping a running total for each of us throughout a game in which we each took 30-plus shots).

A few minutes of “practice” proves to me that Ryan can break out of his routines — just as seeing him play actual games of Nok Hockey proves he can interact appropriately with other kids even if it’s not his first choice.

I know that the remarkable abilities of focus and calculation required for him to keep track of running statistical totals will eventually serve him well in some pursuit. Well, deep down I know it anyway. To say I always appreciate it in the moment would be a stretch. But something else that happened in our game that reminded me of just how unique Ryan’s powers of observation are.

This is child that appears distracted and withdrawn if the activity is not one of his choosing. But you put him in sweet spot — anything involving hockey — and not only is he NOT detached, but he is hyper-focused with a laser-like intensity.

When it was my turn in goal I happened to look down. I noticed that of all the chalk lines drawn on the patio, only the one across the goal line was red. Red of course is the color of the goal line on an actual NHL rink. I asked Ryan if he had done it on purpose but I knew the answer. Then I asked him why the blue line wasn’t actually blue. Before he answered, I put it together. While I was resting inside before our game and he prepared, he kept popping inside to ask if I knew where the chalk was. I insisted it was on the patio table but still he kept asking.

Now I understood why. He found the chalk, but not the blue, so he settled for another color after I failed to give the solution.

This small detail was a good sign, and I smiled at the knowledge. In the midst of this rigid activity, Ryan had done two positive things. He had allowed us to have some unstructured practice time, but more importantly he had allowed the game to go forward even when he couldn’t find the color he needed to make a “blue” line. A little thing, to be sure, but a little victory. He isn’t always able to handle even minor alterations to his plans, and it can easily lead to a meltdown. This time, he gave up, used a different color and focused on the bigger prize — that we would get to play the game. Even if the blue line was the wrong color.

Ryan’s eye for detail is remarkable, and something I try to appreciate. His willingness to overlook it is something I celebrate.

Well That [Stunk]

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Flyers Suck

In case anyone thought I was making it up (keep reading and click to embiggen). I don’t know who this guy was, but 24 years later, he helped put Ryan to bed.

Yesterday was no fun.

Things started well. I actually got to sleep in a bit as I was burning a vacation day during the slowest part of my work year. But I awoke to find Ryan curled up on the couch, covered in blankets, watching a replayed game on NHL Network.

And crying.

He was complaining about his ear hurting. A few months ago, Ryan developed a habit of “clogging” his ears by inhaling with his nose covered, then causing them to pop by blowing out while pinching his nose. He said he liked the feeling of making his ears pop.

We tried to convince him that this was a bad idea, that he would hurt his eardrums and end up in the hospital. Mostly we wanted him to stop because it was such an odd behavior, one that would make him stand out for the wrong reasons. He happily ignored the warnings until one night he really did end up in a lot of pain. He spent that miserable night crying over his ears and was able to drop the habit for about a month.

But it has come back over the summer. We have tried strategies beyond the burst-eardrum scare tactics. One that worked for other challenging behaviors was for Ryan tally how often he does the behavior, then set a steadily reducing daily goal. But this approach is easier to execute during the highly structured school year and we have had trouble sticking with the routine in summer. We debated bringing in a behavioral therapist — something that has helped in the past with similar challenges.

Yesterday convinced us we need to do something more.

Ryan spent the entire day moping, complaining, crying, exasperated. It was tough to tell how much he was in real pain and how much he was worried about being in pain. Veronica and I discussed options when he finally went to bed. When we woke up two hours later, in tears and complaining again about the pain in his ear, it felt like it was going to be a loooong night.

Veronica got him back in bed the first time. The second time it was my turn. Rather than talk to him about his ears, I tried a different approach: distraction. I asked Ryan to think about something that makes him happy. He told me he couldn’t think of anything, so I made some suggestions.

“What about playing ice hockey?” I asked. He nodded yes.

“What about playing street hockey?

“What about going to hockey games?”

“What about singing the ‘Hey, you suck!’ song at Devils games?”

We were on a roll now.

“What about chanting ‘Luuuuuund-qvist’ at the Rangers goalie?”

He was laughing now. I thought back to one of the hockey games we had watched during the day. Once he had seen all the repeat games on NHL Network, I convinced him to watch an old Washington Capitals game from a DVD set. I was struggling to keep his interest in the Caps-Philadelphia Flyers Game 7 from 1988, when it happened. The Caps scored a goal and the camera panned the crowd, pausing for a moment on a fan holding a “Flyers Suck” sign.

Ryan LOVED it. He made me rewind several times.

Back in his room, I asked him if seeing the sign made him happy. He laughed again. I kissed him goodnight and left his room. Much to our surprise, there were no more visits required before morning.

Today, Veronica emailed the behavioral therapist. We need to get this summer back on track.