Monday I had my first 10K of the summer. Soccer is over for the kids (for the summer) and now I can focus on running races and long runs with the running club on weekends. My battery is charged, as they say, and I am feeling very good about this season.
One thing about runners at a race, I would say almost uniformally they are morning people…like me! So you get folks that are excited about a race, and chatty, beforehand as everyone congregates and stretches out, etc…like the dude who parked next to me. He won the masters event category in the race and was a 1984 Olympic marathoner. You would have never known it because he was just a nice guy that was talking about how he forgot to bring a cup of coffee on the way and he was dying for a small cup of coffee (clearly wasn’t affecting his ability to burn rubber once the race began).
Another dude and I (I think he is actually going to start running with the running club on Saturdays) chatted about Autism. I run races, exclusively, in my Autism Walk tee shirt from 2007 (we all have our reasons to run, I have mine, and this is it). His son is non-verbal, and making strides. We spoke about the costs of therapy, where are the lines with what we are willing to pay (I’ve blogged endlessly about this subject) and he has two other little ones at home (not on the spectrum). Once it got close to race time, we separated and headed off toward the line.
One of the ladies in the running group had a boy in her pre-school class that’s on the spectrum, and the parents wanted him mainstreamed, while the school district pushed back and wanted him in a special needs class. We traded emails, and we discussed that the boy was mainstreamed, to be pulled out for ‘specials’ at the start of the year. I’m glad for them. At least they’ll get to see where the lines are….
She actually had a friend she didn’t know was running and went to chat with her quickly before the start of the race, so I was in the crowd waiting to begin…and felt a tap on my shoulder. Just a woman waiting to race. She said she just happened to overhear the two conversations about autism I had, she also teaches pre school in a different suburb.
“Do you think autism is at a pandemic level?” (One of the discussion points I had that morning…yes, heady stuff for 6:50am before a race).
Jerry: Yes, that’s my personal feeling when you take the girls out of the equation and the numbers drop to 1:75-ish instead of 1:150 with the girls in the mix.
“Do you feel desperate?”
This just shook me. But it was a bit of a delayed reaction. My initial answer I gave her was, “No. My son is making his way through mainstream classes, and it is a day-to-day, year-to-year thing with Demetrius, but I don’t feel desperate.”
But while running with the headphones on…
I would change that answer, I think. First, it is a word I’ve never associated with my feelings or thoughts on autism with Super D. ‘Desperate’. I think of this word in some sort of short-term context. “I’m desperate to hear if I got into XXX college.” Or, “I’m desperate for a cup of coffee.” But in terms of autism and Demetrius…yes, I think there was a time I was desperate.
It wasn’t to get him diagnosed, because, hell, we pretty much knew by then. But I felt desperate as I fought with insurance companies (and came home to Kim on the phone with the insurance carriers). I felt desperate, I think when we went through our first IEP experiences…
So desperate is tied to new experiences – therapies, schooling, dealing with insurance companies. Because we don’t know what the other side may or may not look like, how will the result impact all the other things we’ve built around this kid, etc…but I don’t feel desperate about him.
I really have a hard time to thinking about desperate in the group sense too. The word feels personal to me. Would Demetrius’ situation be as desperate to someone that had a parent who had a stroke in their teenage years and was housebound that point forward? They’d have that experience of a hard life and maybe having an autistic child and dealing with it (I’m sure, still painful) would act/feel different than we did. What is a desperate feeling for me may be something that someone with thicker skin just shrugs off, because they’ve been around the block.
The autistic community seems to have moved away from desperate pleas too…we are legit and this isn’t some ‘unknown’, the unknowns are in the causes and ‘cures’, and the dollars for research are now there – and I don’t think the bucks will be going away any time soon.
There may be some desperation among school administrators across the country on how to accommodate the influx of autistic children (if a pandemic) and how to train the teachers…especially since each child on the spectrum is different with different triggers and abilities, etc…
My final thought here is around what’s next for us and what could I feel desperate about? Hard to tell – that’s the experience thing I referenced earlier. What pops up for me is Demetrius being picked on by other boys, that’s something that I just think will happen, and being the type of kid I was, it will hurt even though my belt will be tightened for it.
The other place I can see the word applying would be around school, if he regresses or just gets to a point where he ‘can’t’ mainstream anymore, for whatever reason (educational, social, etc…). First grade was such a good year (I’m fighting the cynic/skeptic in me that this might have been the highpoint before academics get too challenging), I’d like to have more of those and less of those years of negotiating we’ve had in the past.
Desperate. Just a word, no? So many thoughts one can have around it running a 10K? ☺