Tag Archives: autism

In Need of a Reminder

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most improved player trophy

This really happened. It’s important for me to remember that.

It’s been a rough stretch in our little household. Though the last few days have been (relatively) calmer, this recent period has been marked by wild emotional swings, arguments too many to count, and yelling and fighting in abundance.

It has been one of those time periods that makes Veronica and I ask often, “Why does every little thing have to be so hard?”

Ryan is defiant, seemingly over every little thing. Even events that ultimately turn out fine — giving the neighbors a ride to school, running a simple errand — are preceded by what feels like hours days of negotiating and threats.

It’s exhausting. It frays the nerves and leaves patience, the one thing that is needed most, in perilously short supply. It’s a combustible mix, and it has gone off — more than once — in recent weeks.

It is during stretches such as this one that I lean on the online autism community. Hearing similar stories of frustration brings a measure of comfort that we are not alone in facing these challenges. But perhaps even more important, hearing tales of triumph from my peers in this community reminds me to relive some of our own red-letter days when I am in need of an emotional lift.

If I can just ignore the chaos for a moment, the signs are all around. Ryan’s latest grade update arrived in the mail yesterday, and with it, a reminder that the same child for whom sometimes every molehill is a mountain continues to pull straight As.

The other night, I was walking through the ice rink where I play in an adult hockey league after a late-night game. I left an ugly situation at bedtime when I went off to play in the game and burn off some frustration. As I was carrying my equipment bag out to the car, I stopped to look at the bulletin board for Ryan’s youth hockey league, which plays at the same rink.

I noticed something new. The list of the league trophies was updated recently, and Ryan’s name is now memorialized on the board after he won the most-improved player award in March.

I stopped to stare at it for a moment, and as I did so a smile crossed my face. That day was at once so recent and so far away, but it is permanently etched in my memory bank.

Days like that one don’t come around often. When they do, the memories they provide are worth their weight in pure gold. One such memory can undo many incidents of frustration and anger, because it serves as a reminder of what is possible.

It was exactly what I needed this week. And to my friends in this community, whether it is seeing your child make it through a dance recital or celebrating a crush on a classmate, I hope you will cherish those special moments, because they will be the fuel that powers you through the difficult days around the corner.

They certainly do that for me. All I needed was a little reminder.

Pleading the Fifth

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Bill of Rights

He was listening. I know I shouldn’t be surprised, but I am.

I knew it was the wrong decision, but I did it anyway.

Ryan was angling to get his iPad back. The one he’d lost for cursing at his sister at bed time the night before in a very misguided attempt at humor. The consequence was to lose iPad privileges for the morning.

And yet, there I was, reversing myself — which will almost certainly come back to bite me in the rear at some point.

I couldn’t help myself. After a weekend filled with ugliness, with anger and fighting, with disappointment in my reactions, with the return of Ryan’s facial tic, with an overwhelming sense of “why does every little thing have to be so damn hard?” Ryan made me smile and charmed his iPad right out of my hands.

How did he do it?

By impressing me with his knowledge of civics.

I was brushing my teeth when Ryan brought the iPad to me and said, “Dad, if I curse again, and you ask me if I cursed, I’ll say ‘I plead the fifth.’”

Somewhere in the deep recesses of my memory, I was able to shove aside enough of the negativity to recall that the fifth amendment of the Bill of Rights was something we discussed sometime in the last few weeks. But I couldn’t recall the exact details of the conversation. It certainly wasn’t one I thought had made a lasting impression at the time. After all, social studies is not hockey and therefore is not something I thought interested him.

I decided to test his recall.

“What does that mean?” I asked.

“The fifth amendment,” came the reply. I was going to have to pry this out of him one detail at a time.

“Of what?” I pressed.

“Of the Constitution,” he stated matter-of-factly.

“And what does the fifth amendment say?”

“Like if I curse and you ask me if I cursed I don’t have to tell you,” he answered. “I don’t have to tell on myself.”

He must have read my face. He could tell I was softening. He turned on the charm.

“Now can I please have my iPad back?”

I was done. After a really lousy weekend, with one of our ugliest blow-ups ever in the car on the way back from running errands, his smiling, pleading face was just what I needed to see.

“I’ll make you a deal,” I said. “We’re raising the stakes. I’m impressed by your knowledge of government, so I’m going to give you your iPad back. But if there are any more cursing incidents, you’re going to lose it for 24 hours.”

Satisfied that I hadn’t 100% destroyed any future discipline, I gave him back the device. I probably should not have caved so easily, but I just needed something to feel good about this morning. After so much crap between us the last several days, I grabbed on to the first opportunity like it was a life-preserver.

Will I do the same thing next time, even if I get burned on this one?

I plead the fifth.

A Tale of Two Concerts

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Ryan's spring concert

If this photo was any good at all, you could see there was no distress on Ryan’s face. But, you’ll just have to take my word for it.

It was spring concert week for us this week as both kids were set to perform with their respective school choirs. Riley was up first on Tuesday, with Ryan following on Thursday. The contrast in how those two evenings went for Ryan reveals a lot about how he deals with one of his least favorite issues: waiting.

We always have a plan for these events. With Ryan, it’s important to minimize the time he has to wait around. A lot of times that means taking separate cars, and carefully planning arrival and departure times. Only Tuesday, there was some confusion as to the order of the performances. So even though Veronica took Riley early, there was still almost an hour to wait for her part of the show by the time Ryan and I arrived.

He hung in for the first part of the wait, complaining every few minutes. But as it lengthened, he got progressively more upset. A couple of times he slapped his hands in frustration and complained loudly. We used all the usual tools: Take a walk, go to the bathroom, play with my iPhone — but they did little to distract him.

He kept it together just enough to get through Riley’s performance and then he and I bolted out the side door of the auditorium the moment it ended, while Veronica waited to collect her.

Thursday night, it was Ryan’s turn to perform. Drop off time was 6:30, with the concert beginning at 7. Except Ryan’s part wasn’t first. By the time Ryan came on stage he had been waiting with his classmates for more than an hour.

Now, we couldn’t see or hear what went on in the cafeteria while he waited. But had he been as exasperated as he was on Tuesday, it would have been written all over his face. Instead, he calmly walked out with a smile, took his place in the risers, and belted out his parts with enthusiasm.

So why was one wait intolerable while the other wasn’t even a mild annoyance? There are a couple of factors at work. For one, the first wait was unexpected, and of an uncertain length, while the second stuck pretty much to the prescribed schedule.

Another reason is that Ryan’s concert took place at his school, in front of his classmates and teachers. He cares very much about how he behaves in school, but it is completely compartmentalized. He will do everything in his power to keep his emotions in check at school, but the second he steps foot outside at the end of the day, all bets are off.

Ryan was not concerned how his behavior was perceived at Riley’s school, even though it was his school last year and there were many familiar teachers, parents, administrators and students in the audience. And so, when his patience ran out, his anger threatened to boil over in a very public way.

Except that it didn’t. He stopped himself a few levels short of a full meltdown (either that, or the performance started just in time). There’s another difference in how he handles his emotions. Once he moves on from an upsetting episode, it is forgotten, as if it never happened. Five minutes later he can be smiling and happy.

For us, it takes longer. These episodes leave scars of frustration and the “why does every little thing have to be so difficult?” variety. I guess that’s one benefit of viewing the world in absolutes, either/or scenarios that are strictly black-and-white, the way Ryan does. Such a worldview comes with clean lines, but sharp disparities from one moment to the next. Ours is a messy Technicolor jumble as one event, one episode, one memory blends into the next.

Sometimes I think l like Ryan’s way of seeing things better than mine.

Microscopes vs. Telescopes

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Caps road trip 2013

Ryan and I, making memories in 2013.

Other than my parents and brother, I can’t think of anything else in my life I have cared about as long as the Washington Capitals. I was born in Washington and went to my first game at age 4 or 5. That was in the late 1970s. That first outing ignited a life-long love of both hockey and the Capitals, one that has only grown as I have been able to share it with my wife and children.

In the nearly four decades since that first game, Capitals fans have known mostly heartache. The club’s playoff history reads like a horror story: no Stanley Cups, only one appearance in the finals (where they were promptly swept), blown playoff series leads too many to count, an all-time losing record in playoff series they have led 2-0, a 2-7 record in Game 7s — at home. I could go on, but really, you get the point.

The latest indignity was a 5-0 loss to the New York Rangers Monday night. In Game 7. At home. Of a series they once led, 2-0. Washington was shut out in both Games 6 and 7 after grabbing a 3-2 series lead.

Veronica found it odd that I watched this debacle with a calm demeanor. Maybe I’ve just accepted this is who the Capitals are, who they’ll always be.

But I prefer to think there is another force at work, and it has to do with a worldview that has been altered by our family’s experience with autism.

Autism has taught me many lessons. It has forced me to think critically about all aspects of my parenting style. It has led me to always have a plan — and to always be ready to change it. But more than anything, it has taught me to appreciate small moments and little victories. It has taught me to try to live with a hyper focus on the present while trying not to look too far ahead to the future. I try to compare Ryan’s progress only to Ryan, and not to Riley or his peers. What can he do today, this month, this year that he couldn’t yesterday, last month, last year? That is how I try to measure progress (with varying degrees of success, I’ll admit).

In short, I try to look at life more through a microscope, drilling down on the tiniest details of what’s right in front of us, and less through a telescope, focused on some faraway goal that we may or may not reach.

So what does this worldview have to do with playoff hockey?

Everything.

Washington also lost to the Rangers last year, also in Game 7. I was lucky enough to attend that game, sitting in some amazing seats through the incredible generosity of a college friend. When that game was over I was disappointed, sure, but I was more thankful for the experience. It was my first-ever in-person Game 7, and the atmosphere was incredible. I spent it in the company of a good friend I don’t get to see as often as I wish. What was there to be upset about?

Caps road trip 2012

Ryan and I, making memories in 2012.

I attended one other game of that series: Game 4, in Washington, with Ryan. The Capitals won in dramatic fashion and Ryan and I had a fantastic time, spending an entire weekend in each other’s company focused on nothing but hockey.

We repeated the experience last week, heading down for a Saturday afternoon playoff game, witnessing a dramatic win, staying in our favorite hotel, eating pizza together at the hotel restaurant, and dropping by Caps’ practice the next day. In the car, we spent plenty of time talking and listening to U2. It was a wonderful time, and it came in the middle of a difficult stretch for us, making it even more important to appreciate the moment.

I guess what I’m trying to say is the disappointment of Game 7s, this year and last, pales in comparison to the beauty and wonder of the experiences I had with Ryan at the games we attended. For three hours, we cheered, we screamed, we hugged, we high-fived random strangers, we acted like kids. Thirty years from now, I suspect I’ll remember the details of those trips a lot more than what happened in Game 7.

More and more as I get older I realize it’s the memories I collect that matter most. Maybe the Capitals will win the Stanley Cup one day. Maybe they’ll even do it in dramatic fashion, coming from behind to win a Game 7 on home ice. If it happens, I’ll have another memory to go along the ones I’ve gathered these past few years.

I’m not looking through a telescope focused on that faraway goal. I’m right here, living in the present, soaking in the details of the here and now through, trying to live life through a microscope.

Everyone Has a Plan

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Mike Tyson

“Everyone has a plan. Until I punch them in the mouth.” True words from Mike Tyson.

Ryan had a difficult week last week, what with state standardized testing and the accompanying implicit pressure from teachers and school administrators. We felt the effects elsewhere, everywhere, and it took us a while to make the connection that the testing was likely the source of his added stress.

Mostly, his anxiety manifested in an explosive temper and frequent eruptions at home. The other huge problem was a familiar one: the school bus. We’re never far removed from an issue with the bus. Either it’s late, or Ryan hates the driver’s rules about assigned seats, or some student or another is bothering him (we’re certain he’s not being picked on, he just can’t stand when people aren’t interested in the same things he is — namely, hockey).

Last week was especially precarious. He often exploded with anger over the bus situation after school and in the mornings before heading out of the house. He threatened to break the rules, tell people they were “stupid,” and all manner of various infractions. We knew his anger was a sign of a problem but we did not worry about this threats. Ryan respects school authority (well beyond parental authority) and has never misbehaved in school. He claims the bus is not really school, but we were fairly certain when push came to shove, he was going to behave and save his anger for us.

He threatened to refuse to take the bus at all. He demanded he be driven to school by Veronica and picked up by his sitter, neither of which was practical. Taken together, it added several layers of unneeded stress to an already difficult situation.

That’s when Veronica rode to the rescue. Recognizing the situation was slipping beyond Ryan’s ability to keep his emotions in check. She offered to drive him to school on the two days she wasn’t working last week. She didn’t do this mid-meltdown, but rather when things were calmer so it wouldn’t seem like an appeasement.

As she described it, Ryan, disbelieving, stopped in his tracks and thanked her profusely, the relief pouring out of him. It wasn’t convenient or ideal for her to do, but it was what he needed, and she was wise enough to recognize that and act on it.

As much as we wanted to just tell him he had no choice but to ride the bus to school as he had done all year, it was obvious by his increasingly angry outbursts that, given everything going on last week, the situation was beyond his control.

Veronica, having recognized this, was able to give Ryan the one thing she could to make the situation better. When you’re in a crisis, sometimes you have to abandon the plan and make adjustments on the fly.

Plans are, after all, just that: plans. Special needs parenting to me means two things: You always have to have a plan, and you always have to be ready to change the plan as the situation develops. As he eminently quotable Mike Tyson once said when asked about the “plan” of an opponent he was about to face, “Everyone has a plan, until they get punched in the mouth.”

That’s Mike Tyson: Stark. Brutal. Honest.

Also: spot on.

Veronica is now negotiating with Ryan, using the possibility of future rides to school on her off days as leverage to entice him to stop his daily complaints about the school bus.

Who knows how that will work out. But last week, she stepped in to a lousy situation with the perfect solution at the perfect time. She adjusted the plan. She gave Ryan what he needed.