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.