(That’s my Happy Aspie in his Happy Aspie t-shirt. I have one of the shirts as well, but totally miscalculated the size I needed and now have a big gray t-shirt that could provide coverage should a hurricane strike and if post-hurricane FEMA runs out of tarps. It’s bigger than big. And I’m not some slip of a girl. I’ll be posting a link to these as soon as I have the link up and running.)
Anyway, Alex is HAPPY. Sorry for all of the caps, it’s not some weird acronym that means anything but happy, he is just that HAPPY! I want to shout it again: HAPPY!!! Ooops. I think I just woke him up. Shhhhhh.
I’ve delayed in telling all of you this, because I didn’t want to jinx it.
It has been almost 7 weeks that he has been happy, so I thought I could finally share as so many of you have offered shoulders, concern, kindness, and understanding over the years.
I reported, way back when, that his school was closing permanently. It closed at the end of the Spring semester, leaving us without a school in August, and without a camp in between. We had no other options, and didn’t feel safe and secure putting him in a program for neurotypical kids with new instructers/camp counselors and I was all hopeful that I’d have more energy after my new RA meds kicked in.
So kiddo spent the summer at home, with us. We just didn’t have any other options for him. So it was a summer of nearly no activities, spent inside (it’s Florida. It’s brutally hot here and we are pasty folk). I was fairly sick and in bed most of the time, trying to sleep and rest to get to my goal of doing one thing around the apartment, one thing with Alex, and one thing online everyday. That may sound like a minimal amount of stuff but I am seriously begging for more spoons once I run out before mid afternoon hits. The good news is that Enbrel has relieved a great deal of the pain from the RA, the bad news is all of my labs are screwed up and I’m still so fatigued that some days have me struggling to just pull enough covers back over to my side. Kid and his dad spent most of the time either playing video games or locking horns, or a brutal combination of the two. It was like no matter what, kid couldn’t get the benefit of the doubt or be understood and for some reason his dad’s understanding moved from accepting to denial. I’m not going to say it is ever easy. Kids with Asperger’s have Aspie/Autistic traits, but they are also still kids, and if they have been around typically developing/neurotypical peers, they may have picked up some habits, some attitudes that are less than desirable with the family. Mostly though, it made me realize that while I have presented every possible source of material to his dad, given the prescribed “space to parent in his own style”, and I needed to intervene multiple times per day. I started off exhausted and stressed and apparently my capacity for both was going to be stretched to the max. There is a precarious balance, between being wife and being Mama and trying to get communication flowing freely and appropriately. I have yet to find that balance, especially when I’m acting as sort of a berlitz go-between trying to translate Aspie into NT English and NT English into Aspie for two people who just could not get their messages across to each other, without hollering, crying, and stomping. We survived. I’m not sure we solved anything, but things have calmed since kiddo is at school, his dad is being much more mindful, and my boy is hap-hap-happy.
What was that? He is HAPPY.
We did something we swore we would never do while living in Florida (for many reasons). We had him re-evaluated by the school district and we followed their recommendations.
They assigned him a school and a classroom. He started school a couple of weeks late (long story). We went in the first day to see his classroom and meet his teacher. They had computers, hermit crabs, a lego table, a smartboard, and a trampoline in the classroom! He’s with 6 other kids, mostly boys, all with communication disorders. I showed his teacher the inflatable wobble cushion we brought with us (really helpful for Alex at his old school) and started to explain and his teacher said “Oh good! Here’s his desk. You can put that right here.” I didn’t even have to explain about how he needs to wiggle around in his seat to help him focus (yes, it is in his IEP, as well as other tools). The teacher knew this about my kid, about kids like him. They have a mini-trampoline in the classroom! He can jump on the trampoline to help with transitioning (which is what he does at home). It was all amazing and felt like a whirlwind of fresh, cool, clean air swirling around us in those few minutes we spent in the classroom.
We went home. We stopped at starbucks on the way back and it was strange. I don’t think we had been anywhere, sans kiddo, except for trips to the lab for blood draws every 4-6 weeks for me. It was such an odd feeling. We picked him up at the end of the day and he got in the car looking like he was about to burst into tears. As we drove away from the school I asked him “how was your day at school?” and he just bubbled over with glee. He was trying not to cry when he got in the car because he was so happy and grateful that it was threatening to come bubbling out of his eyes, so he hid his feelings as well as he could and then BOOM! It was like fireworks of joy and enthusiasm. I felt like I could start thinking about compiling a list of of pros and cons so I can decide if it’s safe to breathe again maybe. And then I will. But it has been seven weeks. Seven weeks and he has only reported a couple of issues, all related to the other kids in his class. They all have communication disorders and are on the spectrum. Naturally, they all drive each other a little bananas. So we are working on strategies to deal with this, but for the most part, the daily notes from his teacher have been positive.
I know! It’s so amazing fantastic wonderful that between this and allergies making my face feel like it’s been whacked by a frying pan, it’s surreal and almost trippy feeling. Am I hallucinating? Was I dreaming? I wonder this every single day, and everyday my kid runs into my room, jumps right on my bed, hugs my head so tight (he seriously wraps his arms around my head to hug me when I’m sleeping or in bed resting) and tells me he had another great day.
I’ve stopped pinching myself (the Enbrel makes me bruise and bleed very easily).
Anyway, just wanted to share. Are you happily squeaking and hopping up and down like me? (again, that could be the Enbrel. It’s made from hamsters. Really.)
Goodnight, my friends.
And Thank You.