The Roller Coaster Thing

Lots of parents of kids on the autism spectrum talk about their lives as a “roller-coaster ride” — and it certainly is full of ups and downs. Then again, so are most people’s lives.

What makes this metaphor particularly apt is that not only does a roller coaster go up and down, but the it speeds downhill far faster than it lurches uphill.

And so it is the case in my household, and in the households of many other kids on the spectrum I’m sure.

This has been a trying year, something I have discussed many times on the blog. Ryan is getting older and more aware of his struggles. He has been unhappy much of the time. We have started seeking additional help for him. We have tried medication for the first time — with some very mixed results.

Ryan’s anxiety is running high. The school year is ending, and he is changing schools. Social relationships are getting more complex and he is struggling to keep up.

And yet — there have been high points. One of them was just one week ago, when we sat and celebrated as a family at the Devils game as they clinched a spot in the Stanley Cup Final.

But that moment — the moment when Adam Henrique slid the puck past Henrik Lundqvist barely a minute into overtime — was the moment when the roller coaster detached from the pull chain. We have been hurtling downhill ever since.

There is anxiety. An explosive temper. Talking back. Cursing. Lots and lots of cursing. Yelling. Screaming. There are ticks that he cannot control. Moodiness. Sleeplessness.

Mostly there has been sadness and frustration as we struggle to figure out how best to deal with these situations. We have to impose discipline, and yet there is always that fine line between providing positive reinforcement and leaving Ryan feeling beaten down. We may have crossed that line; I really don’t know.

Veronica and the kids were supposed to attend Game 1 of the Cup Final Wednesday night, but Ryan did not sleep much at all Tuesday night and we thought better of it. A blessing in disguise since 1) the Devils lost and 2) the game went to overtime and didn’t end until almost 11:30 p.m.

Tomorrow is Game 2. We are once again planning to have the kids attend. At least it’s a Saturday and we’re not as worried about Ryan staying up past his normal bed time. But for the first time all year, for the first time in several years, we are worried about taking him to a hockey game because we don’t know how he will behave.

I have always defended our purchase of season tickets because hockey games are the one activity we can enjoy as a family, where everything is normal, where we blend in with the crowd (well except for the part that my kids know much more about the sport then most kids their age). I hate that we are questioning whether that can still be the case right now.

Today started off well, but lots of days start off well only to end in disaster.

I am hopeful we are hooked on to the pull chain and headed on a long, slow uphill climb. Even better would be pulling back into the station on level ground, but I know this coaster ride still has a long way to go.

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7 thoughts on “The Roller Coaster Thing

  1. “Today started off well, but lots of days start off well only to end in disaster.”
    I often wonder if things would be easier if we lived in a European country where everyone went home at mid-day for lunch and a little snooze. Why is it so easy for a promising morning to slide into a tense evening?

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  2. Hey Neil, great post.
    We’ve started doing some deep breathing exercises with my son William. We anticipated that he would have a tougher and tougher time socially controlling himself (tantrums, meltdowns, etc.) as he got older, so we’ve started him on this now, and I’ve got to tell you I’m surprised by the results. We don’t do anything fancy; we just prompt him to take some deep breaths when he starts to go downhill. If it’s bad, we breathe with him. He’s used it a couple of times ON HIS OWN (with no prompts) to calm himself down. We’re just trying to give him some tools to help himself later on. I’ve even thought about looking into tai chi or some yoga for him. Anyway, just some food for thought.
    You’ve at least got one thing going for you: Ryan sounds like a great kid.
    Keep us posted!

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  3. What a great post. The roller coaster analogy is so fitting. Thanks for sharing a father’s perspective and for giving other dads out there a bit of inspiration for the rough days. I will definitely be sharing this piece with my clients. Good luck and keep up the good work!

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  4. Deep breathing and counting to a number slowly before responding. If someone else starts to talk before you reach the magic number then you have to start counting again. Frustrating in many ways (when you know you have the answer or all knowing comment), but it gives others a chance to make their points which you do have to listen to as others prove/add their comments. This isn’t my grand idea, but something that was forced onto me many, many years ago. Very valuable lesson which I try to still use it. (But not often enough.)

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