Monthly Archives: May 2012

This Is What Autism Looks Like

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FRAUDI have a confession to make.

Sometimes, I feel like a fraud.

Sometimes, I feel like a fraud for writing about Ryan’s struggles with autism, because he is mildly affected and I know our lives have little in common with those who parent children who may be non-verbal, self-injurious, and unable to care for themselves.

Other times, I feel like a fraud for writing about our triumphs and happy times, because those glimpses of happiness often occur as blips on a radar screen full of turbulence.

My last post was titled “This Is What Happiness Looks Like.” It was about being together as a family at the Devils game Friday night as they clinched the Eastern Conference Finals in overtime. I had taken a snapshot of both kids celebrating that was the inspiration for the title.

The title of the post was accurate. We had an amazing time, and we created memories that will be will all of us for a lifetime.

Here’s what I didn’t mention — that before we even got home, there were problems in the car. Ryan snapped at Riley over something she said. Or maybe it was the song on the radio. I’m not really sure. Whatever it was doesn’t matter. It was just a quick reminder that whatever happiness we took away from that event did not carry over for Ryan. And that is because navigating his way through each day, through each mystifying social cue, through each sensory experience, through each mis-ordered moment of this world that refuses to line up in the precise patterns his brain prefers, continues to be a very difficult challenge for him.

I returned home from work yesterday to be greeted at the door by a hug and a kiss from Veronica. I could tell by the look on her face that all was not well behind the door. I have come to recognize the expression on her face.

Ryan was having all manner of difficulties disengaging from whatever activities he was doing — playing NHL2K on the Wii, typing imaginary hockey standings on his computer. Worse, he was not able to enjoy himself while he was doing these things, giving in to the compulsions that demanded everything happen in a certain order.

After a series of explosions, we finally got him calmed down before bed. We talked to him about why we had intervened and forced him to turn off the computer and the Wii. We tried to get him to explain why doing these favored activities was making him so upset.

The answers did not surprise us, but they saddened us nonetheless. He turned off the computer, then restarted it, then turned it off again because he had forgotten to push the caps lock key. He usually types in all capitals, and I guess he wanted the little light on the caps lock key to be on as he shut down the computer. When it wasn’t, he had to go through the routine all over again.

We asked about the Wii games, which he kept restarting for no apparent reason. He told us “I don’t want to tell you the reason because it’s a really bad one.” We assured him that no matter what he told us, we would not be upset. He finally admitted that he started entire hockey games over because he had messed up the records of the teams in his head.

See, Ryan can never just play a game of NHL2K on the Wii. He can never just play a game of street hockey in the backyard. Every game is part of some imaginary season, part of a never-ending list of imaginary standings that he silently compiles in his head. When something goes wrong with the numbers, he gets angry, and forces himself to start over.

I felt so bad for him. This, I don’t know how to fix. This, I have no strategy for. Part of the reason we have sought extra help for him in the past year, in the forms of doctors and therapists and even meds, was because we saw him as unhappy so much of the time.

More and more, I think that unhappiness stems from him being unable to order the world the way he needs to. If the numbers don’t fit, if the lines aren’t straight, if the standings don’t add up, he cannot handle it.

Tonight is Game 1 of the Stanley Cup Final, Kings at Devils. I will once again hope for a three-hour block of family happiness, even though we won’t all be together tonight (I have work duties at the game that won’t allow me to be a fan).

Even if everything falls apart on the car ride home, I still need to have these experiences. They recharge my batteries, top off my patience meter, and give me the hope I need to take with me into the next confrontation with autism, which is right around the corner.

You’ll just have to forgive me if I write about the happiness — even if it makes me feel like a fraud.

This Is What Happiness Looks Like

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Happiness

Friday Night, Prudential Center. The Devils have just scored in OT to clinch a spot in the Stanley Cup Final.

I should have written this post when we got home from the Devils game Friday night, when the memory was still fresh. Before we spent much of the next two days negotiating with Ryan over all manner of behaviors:

  • Wishing he would come outside and join his cousins in the pool
  • Watching him explode every time we tried to coax him from his room — windows and doors closed, shades drawn — to join the family
  • Pleading with him to stop cursing in front of his grandparents

Sure, there were moments of sweetness and light as well, but it was the constant struggle that is so tiring and frustrating. The fact that nothing is accomplished easily.

And yet … there was Friday night.

Friday night was … as I put it on my Facebook  wall Saturday morning underneath the photo above:

You know, I’ve been to some pretty incredible sporting events … saw my favorite team win the Super Bowl. Saw my college football team win a national championship. But I don’t think I’ve ever enjoyed an in-person sporting event as much as last night because I got to share it with the entire family. It was simply magical.

It’s true. At the start of this season, the Devils weren’t even among my favorite teams. How did I get here? How did I end up wearing an Ilya Kovalchuk jersey, taunting Henrik Lundqvist, jumping up and down with my entire family as we watched?

Sure I wanted the Devils to do well so my kids would be happy. But I wasn’t emotionally invested in the outcome. Perhaps it would have been different had they made the playoffs last year and we were able to attend as a family. Instead, I watched the clock run out on a season and hoped that Ryan would still care come fall.

As I’ve written about many, many, many times on this blog, the reason we go to hockey games because it’s just about the only activity we can do as a family that everyone enjoys. Where we can be normal. Where we don’t have to negotiate constantly with Ryan.

Friday started out rough and got worse as the day wore on. By the time I got home so we could all go to the game together, Veronica and the kids were barely speaking to each other. But all the angst faded as we made our way to the arena. The Devils were up three games to two in the series and had a chance to eliminate their biggest rivals, the New York Rangers, and make it to the Stanley Cup Final. To say all of this was unexpected would be an understatement.

We followed our normal pregame routine, hanging out a bit on the outdoor plaza so Ryan could play street hockey and Riley could get her hair painted red. This time she added some face paint for good luck.

We made our way inside and there was incredible energy in the building. I went to get food with Riley and returned to have Veronica explain how Ryan was taunting the Ranger fan sitting in front of us. Luckily, he was a good sport — very helpful when the Devils scored to make it 2-0 in the first period and Ryan calmly tapped him on the shoulder and asked “are you having fun yet?” I cringed, as I was too late to intervene. That the fan replied “no, not really” before turning back around proves that not all Rangers fans are bad people.

With the Devils up two goals, I allowed myself to think ahead to the Stanley Cup Final, mostly about how the kids would always remember this spring and hopefully remember that we spent the time together as a family. Then the second period happened. The Rangers were dominant, scoring twice and taking complete control of the game. The third period was slightly more even, but the Rangers still held the territorial edge. Overtime loomed.

Perhaps because the Devils had a one-game cushion in the series, Riley was stronger this time. There were no tears in the intermission before OT. Ryan announced to the entire men’s room “WHEN THE DEVILS SCORE THE NEXT GOAL, AND I DO MEAN WHEN, WE ARE STAYING FOR THE HANDSHAKES!” No matter, he still ended up getting me taunted for being the parent of a child who may have just jinxed his team’s best chance at the Final.

Overtime began, and ended, in just over a minute. There was a chance at one end, then an innocent-looking play that turned into a crazy goal-mouth scramble at the other — the end right beneath us. We had a perfect view as the puck sat in the goal crease for what felt like a full minute before Adam Henrique poked it in, sending the crowd into ecstasy. We jumped up and down. We screamed for joy. I grabbed Riley and picked her up and gave her a huge hug and a kiss. I told her “YOU ARE GOING TO THE STANLEY CUP FINAL!!!!” in what felt like a scene copied from the Disney World Super Bowl MVP commercials.

We stayed for the handshakes. We stayed for the trophy presentation. We sang Glory Days along with Bruce Springsteen (it is New Jersey after all). We cheered. We marched out with the crowd singing various chants:

LET’S GO DEV-ILS!

WE WANT THE CUP!

MARTY’S BETTER!

BEAT L.A.! BEAT L.A.!

Ryan was having a blast, yelling at the top of his lungs. Riley was on cloud nine. Veronica, long since fully indoctrinated as a hockey fan, was ecstatic. Somewhat to my surprise, I was right there with them. Maybe it was just seeing the three people I care most about in the world all wrapped up in something and wanting to share it with them, but I felt incredible joy. I wanted the moment to last forever. For those 25-30 minutes, however long it took to get from Henrique’s goal back to our car, we didn’t have a single other care in the world. That’s a rarity for anyone. Rarer still when autism butts into our world whenever it damn well pleases.

By Saturday morning, we were back to negotiating. But Friday night? There was only joy.

Are You Kidding Me, Universe?

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Last night was a rare night out for Veronica and I. The occasion was a fundraising dinner for a literacy foundation run by a friend, held at a nearby country club. The evening ended up turning out so wonderful that it was hard to remember how it started.

But this is a blog about our family’s experience with autism, so we cover the ugly as well as the good. To do so, I need to rewind the clock back to the beginning of the evening, back before we rubbed elbows with our town’s mayor, the superintendent of our school district, and the principal of the school Ryan will attend next year. Before I had a chance to chat briefly with one of my favorite sportswriters, Peter King of Sports Illustrated. Even before Veronica — Kentucky-born and SEC loyal — found herself quizzing Alabama-born Justin Tuck of the New York Giants as to why he had left SEC territory to play his college football at Notre Dame.

Oh I’m sorry, where was I? I was going to tell you about the evening’s difficult beginning. Must have gotten distracted there for a second. It’s really not a big deal. We do stuff like that all the time.

Yes, back to the beginning of the evening.

We were completely dressed, ready to step out the door after giving final instructions to our sitter when … click.

The power went out.

It was a muggy day full of thunderstorms, but the weather was calm at the moment, so this was a very unwelcome surprise. I stuck my head outside and quickly confirmed ours entire street was affected.

In an instant, my heart sank. I knew what was coming next.

Riley ran about excitedly gathering flashlights and candles. She was immediately thinking of what activities she could do in the dark.

Ryan? He began to lose it.

NO COMPUTER? NO WII? NO TELEVISION?

BUT WHAT DO I DO????

In that moment, what we had hoped would be a wonderful evening out among adults was thrown into jeopardy. Our sitter is great with Ryan, but it would be unfair for us to leave her to deal with him in meltdown mode.

I called the power company. I was the first to report the outage. There was no estimate for repair.

We tried to calm to Ryan. We acknowledged his anger and the unfairness of the situation. We told him how much we had spent on the tickets and asked if he could find a way to amuse himself without power. It was still light for a couple more hours. Could he play street hockey? No. He insisted he needed one of us to stay home and play goalie. Could he play with his Hockey Guys? No. He needed the computer to record the results of the game.

It was no use. His mind was set that without his favorite electronics, he would be miserable. Never mind that he often plays street hockey by himself in the backyard for hours. He often plays Hockey Guys without typing the results on a computer.

Veronica told me to go by myself. I really had no interest in doing so.

How could I get mad at Ryan? I was reacting in much the same way. I pride myself on not getting upset about things I cannot control. I was failing that test miserably. I felt my own anger rising.

The evening looked like it would be a lost cause as well as a giant waste of money and I was having a hard time taking that in stride. And just when I was decrying the unfairness of it all — exactly as Ryan had done — the lights came back on.

The blackout had lasted about 10 minutes. Ryan’s anger (and mine) disappeared as fast as it had come. We told the sitter to call us if the power went back out and jumped in the car. We figured at worst case we could at least enjoy a few minutes of the gala before having to race back home.

Well, the phone never rang. The power stayed on. Both kids were fine. By the time we pulled up to the country club, the difficult start to the evening was forgotten.

Before long, Veronica had spotted the superintendent and was telling him about the wonderful teachers, therapists, case managers, and aides that work with Ryan. When I saw our mayor, a fellow hockey player whom I had chatted up at a school skating party last year, I did the same. Later, she had a chance to introduce herself to the principal of Ryan’s sixth-grade school, laying the foundation for a good working relationship for next year.

We listened to inspirational stories of underprivileged kids learning to love writing through the help of the foundation’s summer camps. We were honored to meet some incredibly poised young people who had gone through the program. We listened to the evening’s honorees, King and Tuck, talk about why literacy is so important to them. And yes, Veronica got to question a two-time Super Bowl champion about his college choice, as well as his preference for the New York Rangers over the New Jersey Devils.

It was an incredible evening, one we will not soon forget. Because it turned out as it did, we are able to smile and laugh and the universe’s seemingly cruel sense of humor … until next time.

Memorial Day

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Sometimes, simple plans are best.

It’s a lesson we have learned over the years as we have seen ambitious vacation plans crumble into disaster.

There was the week at the lake house where Ryan barely slept and was bored and when it rained. The trip to Hershey Park where none of us except Riley slept (noticing a pattern?) leading to anger and frustration. The time I had the bright idea to have Veronica brings the kids to join me working at the NHL All-Star Game, leaving her to deal with both of them as Ryan decompensated while waiting in long lines at the fan festival.

And yet, we must continue to try. We think we hit on a successful formula with last year’s beach vacation and will attempt to repeat it later this summer. But sometimes a quick getaway is what we need to recharge our batteries.

Memorial Day weekend is rarely a relaxing time in our house. The Stanley Cup Final nearly always begins around that time, which usually means work duties for me. But last year offered a rare break, as I was working on another project and thus able to get away for Memorial Day. This was all very last-minute, so there was no time to plan anything elaborate. Not that we are the type to head someplace crowded during a popular holiday weekend.

My parents were going out of town and graciously offered us to stay at their house and make use of the backyard pool. We thought this might be just the break we needed. Ryan is comfortable at his grandparents’ house, so the sleep concerns were lessened.

Still, there were warning signs. On the drive down, he informed us that he did not want to swim but would be spending his time inside on the computer. Veronica and I exchanged a look — this was going to be a challenge, another situation where we would need to find the proper balance between allowing Ryan his space and forcing him outside of his comfort zone so that he could engage with the rest of the family.

We needn’t have worried. As soon as we arrived we coaxed Ryan into the pool, where he stayed for basically the rest of the day, barely expressing a desire to go inside. He engaged in various games with us and with Riley, allowing Veronica and I to relax by the pool with a drink or two.

The weather was perfect all weekend and so we barely moved from our spot. We ate meals outside and spent ours time alternating between the water and the lounge chairs. Ryan did not present a challenging behavior the entire visit.

We headed back home with our batteries charged and our spirits renewed. All the concerns about how we would get Ryan to join us outside had faded and been replaced by memories of family time spent together.

When we were putting together a photo collage of our beach vacation after last summer, we needed a few more pictures to fill out the frame. We couldn’t seem to find the right ones from our collection of beach photos. We ended up filing the frame with shots taken during that perfect Memorial Day spent barely an hour from our house.

Memorial Day looks quite different this year. We have a Devils game Friday night and potentially a Game 7 to watch on Sunday night. Win or lose, the Stanley Cup Final begins in the New York area next week and so this will be a busy weekend work-wise for me. We won’t be able to repeat last year’s relaxing long weekend but we will still be able to spend the break together, engaged in something we all love.

As much as I am looking forward to those games, and hoping the Devils can win so we can keep this magical hockey season going, I have to admit a weekend spent with just the four of us sitting by the pool sounds pretty good.

Here’s hoping all of your Memorial Day plans work out as well as ours did last year. No matter what you do, please take a moment to remember the reason for the holiday. I know I will make a point to show the kids a remembrance service on television, and remind them how lucky we are to be together, and how thankful we need to be for the service and sacrifice of so many.

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Decoder Rings

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When did they stop putting prizes in cereal boxes?

Seriously, when did this happen? Did a generation of parents finally rise up and demand a change, sick of grubby little hands digging to the bottom of the box and of siblings fighting over the token prize?

It’s a shame, because I could really use a decoder ring right about now.

Ryan is giving off signals that something is irritating him, pushing his anxiety towards tilt. But he cannot tell us what.

All the signs are there. The sudden emergence of a tick-like behavior — in this case trying to pop his ears as if he just surfaced from a scuba dive — that he cannot stop. The increased time spent in his room with the door shut, banging away at the computer. He is typing hockey standings, but he doesn’t even really enjoy it. And if we so much as open the door to check on him he deletes the document and starts over. Saturday, I adjusted the television volume while he was playing NHL Slapshot on the Wii and he insisted that meant he needed to start the game over. Casual inquires, even so much as just calling out his name, are often met with an angered “WHAT?”

We have our suspicions about the cause. The school year is hurtling towards its end — normally something he would celebrate — but this is a transition year to a new school and he is very nervous about the change.

There is also the meds. We seem to have found success, or at least stability, with his latest medication. We have stepped up the dosage slowly. Could this new level of anxiety be a result of that? Is this the beginning signs of puberty? I don’t know if I’m ready for that.

Where in my damn decoder ring with the answer?

It’s not all bad. We managed to have a good time as a family at the Devils game Saturday, despite a shutout loss to the Rangers. Ryan actually took the result a lot better than Riley. And Veronica brought both kids out to watch me play hockey Sunday evening — a special treat for me. Ryan ran around the rink like a maniac, but so did his sister.

But between these happy family outings, the anxiety has run high. Thankfully Veronica and I both realize this is not the time to push him, but rather the time to give him space, love, support and reassurance.

We heaped extra praise on him for any positive behaviors. We talked to him in calm, soothing tones. We allowed him to retreat to his room when something — such as a bunch of neighborhood girls playing loudly outside next door — put him on edge.

We don’t know any other way but to feel our way carefully through each of thee situations, consulting with the other adults that work with him and know him best. There is no playbook.

There is no decoder ring.