Dear My Puzzling Piece Family,
I cannot believe it, but it has been a whole year since I last posted. I left the website up and available for those of you that needed/wanted to utilize the resources I’ve posted. It’s been a very long, very sick year, to say the least. This is my first post. I was inspired to write again by Carly Fleischmann, who has been unable to type — unable to communicate — for quite some time following an attempt to treat her OCD with ECT. Her therapists and parents have been working with her, and she posted on Facebook a few days ago, “I’m afraid if I post this might be my very last post” (completely paraphrased, btw). I completely understand, as I sat in front of my computer today, guilt crawled over me and I realized it was time, again, to write.
At least today I was strong enough to do this.
Here’s Carly’s info, in case you aren’t familiar with her, you should be!
Cassius is doing amazing. He spent 7th grade in an all autism school for the year. Surrounded by teachers, therapists, and other kids on the spectrum, Cassius spent a year healing from the incredible bullying he underwent in 6th grade. There are so many things — looking back — I would have done differently if I knew then what I know now.
Cassius is very gifted in many areas (particularly Math and Reading). We wanted to keep him in a safe environment for another school year, but we were concerned that — simply because everyone in his tiny autism classroom was on different levels educationally and developmentally that he might find the educational materials challenging when he returned to a more traditional education. So we decided to get the best of both worlds: he is going to school online. This is an awesome option for us, and I’m so glad we took advantage of it, because it allows us to customize his education. In fact, he’s taking three high school courses (algebra, C++, and Game Design) and three 8th grade courses (English, Science, and History). So technically he’s in 8 1/2 grade.
Health-wise, it’s been a really tough year. If you read my last post, you can understand why. I spent a good amount of the summer in the hospital with various infections and sepsis, and spent several days in the ICU. Right now, my heart is failing (intermittently), and between the newly diagnosed Addison’s disease and the Crohn’s disease, I’m swamped with medications, IV fluids and IV nutrition (TPN).
In addition, after months of complaining to the military physicians about his ongoing chest pain (yes, you read that right), Brutus ended up earlier this year in the hospital as a patient as well. He had a huge blood clot that went from his SVC (Superior Vena Cava — the vein that empties into the first chamber of the heart, down all three major upper extremity (arm) veins, all that way down past his elbow on the left side. In addition, several pieces of the clot had broken off and went into his lungs — both lobes.
You read that right: he had MULTIPLE pulmonary embolisms. And SURVIVED. Like a BOSS.
We could have easily lost Brutus to this and I am thankful to have him every single day, even if I suck at showing him. He’s currently on blood thinners and will need a surgery soon in the upcoming months. Poor Brutus, the surgery he has to have involves removal of his top rib (ouch!!!) as well as removing one muscle — but in order to get to that top rib they have a lot of muscles to move during the surgery. The recovery time will be a lot of physical therapy and hopefully it heals quickly. The other part of the surgery requires them to rebuild his veins, because the clot was there so long it destroyed the major veins that lead into his heart. The whole thing makes me queasy and freaked out, but I know my Brutus, and if there is one thing he is it is TOUGH. Really, really tough.
On top of ALL of that, we’ve spent the year fighting the social security administration because they decided — out of the blue, after 4 years of being legally disabled — that suddenly I was no longer legally disabled. I appealed and my hearing was this past week. I feel confident that things will work out, but we won’t know for sure for 4 to 6 weeks.
Well that is a pretty good update on our family. As for our blog, I may or may not continue writing it (as I’m currently working on another writing project), and I’ve entrusted my fellow autism Mommies out there to continue to carry the autism acceptance banner and to continue advocating for everyone that is different or diverse. They carry the light so brightly. I do, however, want to keep publishing the writing of autistic adults, and I have some material I may publish here if you — my readers — are interested.
LOVE YOU ALL!