Flexibility is invaluable if your living with Autism. Things can change in the blink of an eye, one minute your laughing with Alex and then suddenly he's covering his ears and asking you to stop talking. I know it's not me, I mean it IS me, but it's not personal, he just can't take the auditory input anymore. He needs me to change direction, his brain can't use his ears so I need to find a different way to communicate, maybe visually or mouthing the words. Or, as I learned this week, he could be going offline, all his systems could be shutting down.
Almost all of last week seemed offline. I can't tell you exactly why it happened, I could make some educated guesses but I have no real idea. What I did have was a 17 year old that would not get out of bed, for almost 5 days.
On Monday I was able to get him to wake up and get dressed but the second I turned around he was back under the covers. At one point we were both walking out the front door when I realized he wasn't behind me, he had gone back upstairs and gotten in bed. Alex had gone full Gandhi on me, he was buried under his covers and he was completely silent. I couldn't get him to speak or acknowledge me. Let me tell you, Gandhi's tactic of non-violent, non co-operation is a wildly effective strategy. I had no real options, anything that would get him moving would require me to become aggressive, assertive or punishing. I'm not against a more aggressive approach but I felt something really odd was going on. Alex was trying to communicate something to me but I couldn't tell if this was a physical, emotional or behavioral issue. So I dropped all plans for the day, no school, no job, no outings, I wanted to see where this went, and it went nowhere. For the next 3 days he was in bed for 20 out of each 24 hours, I've never seen him do this before and I have to admit I was pretty freaked out. By the third day I took him to the doctor (he checked out just fine) and started digging into Google (always a confidence builder). Then, just as I was ready to start scheduling appointments with specialists Alex bounced back, he was up, full of energy, eating, happy and ready to go to school/work.
I'm starting to think this is what the teen and early adulthood years are going to look like. It's going to be a bell curve. There will be times where he is so integrated and balanced that he could pass for typical. There will be times when he is so dis-integrated that he almost can't function, and there is the huge space in between where he spends most of his life.
It's more complicated than I thought. I think I expected things to become more integrated as he aged and to stay that way, but it's much more fluid. He's moving back and forth on the bell curve. That said, even after the hard weeks he bounces back. This week has been one of his most integrated weeks, Alex got himself up, did all his work and seemed happy to do it.
So I'm deciding that I need to stay focused on the idea of flexibility. I can't expect every day to be the same, his brain just doesn't seem to work that way. I also can't let a challenging week shake me from the belief that a good week is coming. The goal is to teach Alex how to navigate and advocate for himself.
Last week makes me even more thankful for jobs that are volunteer positions. There is less of a penalty for not showing up to work. People might be disappointed but it's understood that if your working for free you might have to miss a shift now and then. It's all about flexibility.