I can't tell you how many posts I've written in my head since February. Countless. I just haven't been able, for whatever reason, to type them. Then I get behind and I think, should I go back and write things that have happened of significance or just jump in to today and leave out all that got me to this point? I guess either way. Nothing is really "wrong", it's my blog right? Yet I struggle with it and, like those pictures you just can't get organized, you just keep getting further behind.
This momentous time started out rocky. On his very first day of high school the bus forgot to pick him up. Well the actual bus didn't forget, someone screwed up, royally. Can you tell I live with a literal person?He had a meltdown on our front porch wanting the bus to just COME like it was supposed to. It was too late and it had started its next run. My saintly husband came home from work and drove him. Daniel was in full in meltdown mode because this was NOT THE PLAN and Lord knows in his mind being late is one of the seven deadly sins. But he recovered once he got to school and proceeded with his day.
We went back to him riding the special ed bus this year for many many reasons. He hasn't ridden it since 3rd grade, I believe. There isn't really a general ed bus for our neighborhood. We are within the 2 mile radius required, but yet, it is too far to walk. The kids he used to walk home with in 5th to 8th grade all have other things going on now that they are in high school, or they ride their bikes or go to friends houses. It's fine. It is just yet another reminder how far they have all come and well, we haven't. Sure, Daniel's made great progress. I know that. But seeing how MUCH MORE the other kids have changed is a sobering reminder each and every fall of how much further behind Daniel is. Watching my now 6' tall child climb the steps of that small bus 15 the same one he rode when he was 4, is surreal to say the least.
Every fall, like all parents, we have to adjust to new teachers, figure out the kids schedules and expectations at school. It is always very difficult to decide Daniel's classes. He doesn't quite fit in anywhere. He can do Algebra, but his reading comprehension is low for general ed. He doesn't, academically, fit in with the basic room, but obviously not with the rigors of high school classes. Yes, we have his work accommodated or modified where need be. But nothing ever feels "right" to me. When I changed his schedule from 4 core classes to 3, along with band and 2 academic supports I could breathe again. So I figured that was a good sign and stuck with that.
The thing that gets me at every transition is trying to explain my very unique boy over and over again. It feels a bit like the movie Groundhog Day and I want to just hit play on a recorder to save myself the grief. I always feel like (most but not all) staff members have to restrain their eye rolls and whisper to their colleagues about the crazy autism mom wanting to control everything. Why do they not understand that while I KNOW they know their jobs, they don't know MY kid. I KNOW my kid, yet I always feel it. Every time. Mostly, I feel their attitudes change as they get to know me. But it is so frustrating to not be heard. To be described as "anxious" (yes someone wrote that in an email to me) instead of proactive and having your kids best interest at heart. It not only depresses me, but it angers me. I actually said to my husband yesterday that I wanted to "go beat the crap out of _______". Of course I was kidding. Sort of. He laughed and commented that it says a LOT coming from me. I am sometimes too calm and laid back.
The fortunate thing through all of this planning and maneuvering and yes arguing with the school, is that Daniel doesn't seem to realize it. I'm proud that I can keep calm and smile and get him where he needs to be with a hug and such enthusiasm. It isn't until they leave that I slide into a slight depression and start perseverating on my next step. Planning what to say next to whomever, reading emails of why the school isn't doing what they said they would, feeling like I'm falling deeper into sadness, being tired because my body is wondering why I am suddenly up when it's dark instead of sleeping in to 9:00 and having coffee with Regis and Kelly.
Then at the end of each school day Daniel comes bounding off the bus, asking me how may day was, unpacking his backpack with such enthusiasm and yesterday pulling out these pictures, so anxious to share them with me. I remember the days when he had no "shared joy" the autism gurus call it. He showed me his drawings with such excitement. He couldn't wait to share and explain each one. The same drawings he does over and over again. The same drawings I have a whole file of. All the things he loves. Rainbows, bats, logos, Wallace and Grommit, Blues Clues. He was so contagiously happy, that all the things that seemed wrong, felt very right. If only for a moment. How can you feel sad when looking at rainbows and Pooh? Until the next day. When it starts all over for me. Then slowly, as things start to fall into place, we work out the kinks, the sadness dissipates, and we settle in for another year. I don't know when that will be. In the mean time, I'll keep looking at my pictures, with happiness of his shared joy mixed with the sadness that in some ways, we are in the same place. That things change, but they also stay the same.
Mastering the Obvious in Autism Science - At this years IMFAR autism science conference I saw several presentations on seemingly obvious topics. For example, one study (DaPaz, University of Cal...
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