Everyone dismissed my concerns
I couldn't share my worries because people would say "Don't worry, mom, it will be OK." But those reassuring platitudes just don't help. And they only serve to further separate me from those parents of typically developing children.
When my youngest went to kindergarten at the local public school a few years ago, I found I couldn't write about the start of kindergarten as I had for my oldest, because my emotions were too big, and my thoughts were too scary. Having been in the school system for years, I intellectually know that everything should be fine - but I also very well know just how bad it can get when it goes badly. And, well... I knew there was a very, very good chance things could go badly just as easily as they could go well.
It was hard to put my feelings into words considering my daughter’s unique profile. When my oldest went to kindergarten, I was nervous, worried, and a bit emotional for her growing up. Normal parent feelings. I honestly don't think my husband and I slept at all the night before school started.
With my youngest, who has PANDAS? I was terrified. Although many of my worries sounded like typical new kindergarten parent worries, they went so much deeper than that. I soon learned that I couldn't share my worries with others because people would say "Don't worry, mom, it will be OK." “You worry too much!” or “All kindergarten parents feel this way!” But those reassuring platitudes just didn’t help. And they only served to further separate me from the “normal” side of kindergarten. I often describe parenting a child with PANDAS or neurodiverse profile as parenting on “the other side of the fence” - we can see what typically developing children get to experience but are not able to access it or relate to it.
The first day of kindergarten should be emotional on the parents because it means your baby is growing up - it should not be emotional because you are scared of how your child might react in a group - and how the adults may treat your child after she reacts. This disease stole the sweet childhood moment of the first day of kindergarten from us.
My poor PANDA. The first thing she said to me when I picked her up on the first day was, "Mommy! I didn't go to the principal's office!" A wave of relief came over me, and I cheered out loud in the after school room, even though I hadn't realized that I was worried about that. That’s not your typical child worry. (To be fair, at the time her favorite book series was Junie B. Jones who does, in fact, spend a significant amount of time in the principal’s office.)
Little did I know that my daughter’s kindergarten year would end in March thanks to COVID. As she prepares for second grade I think about how scared I was for her first day. It feels silly now, but at the time those emotions and worries were very real. Today, this memory is also a reminder to me of how many unseen worries and concerns parents of children with unique profiles carry. Beyond typical back-to-school concerns they hold something deeper. As we get ready for this back-to-school time, we all need to remind ourselves to not placate or dismiss parent concerns by telling them “their child will be fine!” Sometimes our worries need to be held by others - especially when it comes to situations regarding accepting and understanding neurodiversity.