I was going to start writing this morning about Rare Disease Day, which falls on February 28, and harangue you about its meaning and importance. Yes, close call for you guys. Instead, Facebook’s “Memories” feature dragged up a post of mine from 2016 that grabbed my attention and even got me laughing a little bit.
I wrote: “So….all last week I dressed Sarah in a series of outfits for ‘Spirit Week.’ There was Pajama Day and Wacky Day and a few others. Just checked the calendar and, yeah, it’s this week. My husband can’t stop laughing. Please tell me this isn’t terrible.”
My friends were reassuring but wondered why the school hadn’t contacted me. Some theorized that the school had gotten a kick out of it. In truth, the school probably didn’t notice. Why would they? It’s not unusual for special needs kids to come to school wearing pajamas, or to come to school wearing divergent patterns on their pants and shirts, and mismatched socks (Wacky Day) or wild hairdos (Crazy Hair Day), or whatever eponymous day it was. The teachers and paras were not going to notice one more kid with a blue sock and a brown sock.
That year (2016) was a good one for us in many ways. We took our Wish Trip in the spring and we went to Camp Chatterbox as a family in August, which was fun but exhausting. Sarah had been in Third Grade that year, and we had a lot of issues with her school. Originally she was supposed to be in her Augmentative and Alternative Communication placement through Fifth Grade. But the county decided that the program should end for all students after Second Grade. We were a bit stunned and Sarah ended up for Third Grade at a school that was really not right for her. It was a good school with a strong principal and a lot of parent support, so it was hard for us to be on the outs with the school, because people would gasp when we said we were kind of unhappy at Much Loved School and with Principal Lovedalot.
We were very psyched about Much Loved School because it was pretty close to our house (the AAC school had been a long bus ride) when my husband met another special needs dad at the day camp bus stop whose daughter had been attending Much Loved School for several years. This dad proceeded to tell Max that his fondest wish was for Principal Lovedalot and his entire family to burn in the fires of hell for all eternity. We were agog! Well, it wasn’t long before we understood.
The kids with disabilities at Much Loved School were pretty much warehoused there. Sarah came in with a reading level that was tested low normal for second grade but by the first few months of third grade her reading level plummeted down to Kindergarten level. She wasn’t learning anything. We visited the school. Her classroom was a mix of all types of kids with different disabilities. We sat at her table while a paraeducator showed her and a little boy two pictures: one of a clown and one of a teacher. “Which person can you learn from?” the paraeducator wanted to know. “I think you can learn a lot from the clown,” said the bright little boy. No, that was the wrong answer insisted the paraeducator. Sarah’s assigned aide then directed her to find the “right” answer on her talker. She put her head down.
After numerous other issues, including Principal Lovedalot telling me I was a bad mother because I did not want to sign a blanket release of Sarah’s medical records, we actually had to hire a lawyer to get Sarah out of Much Loved School, as if it were a prison. Thankfully, she spent Fourth and Fifth grades in a wonderful elementary school with a much better environment for her where she was stimulated and happy and so were we. I marked Spirit Week more carefully on my calendar.
The First Year Without Sarah 