Most people in the special education world - parents, teachers, or therapists - are familiar with "Welcome to Holland". A short essay on how when you think that you are headed to Italy as a parent along with everyone else, but instead you end up in Holland. Holland has a whole different language than what you prepared for, different expectations and experiences, but it's still a wonderful place. Just different.
I used to love Welcome to Holland. It was a beautiful way to look at the world.
With PANDAS, I think it's more like "Welcome to the Upside Down" straight out of Stranger Things.
You are in Rome, hanging out in Rome, loving your time there, when all of a sudden, you aren't. It looks like Rome and you can still see remnants of Rome, but instead it's all dark and cloudy - Rome with decay. There is screaming and crying and its cold.
There are portals back to the real world. Portals through antibiotics, gluten, sugar free, and all sorts of theories - the mold portal, the no chlorine portal - steroids and Motrin portals. Which one will work? Which one is worth the journey? Some offer sort glimpses into the real world, but in the end you just get pulled back into the Upside Down.
Yesterday, my youngest and I went to a birthday party for her classmate. I'm apprehensive going to these things because I'm never sure which world we'll be living in. The happy, delighted, playful world, or the upside down - screaming, crying, clinging, angry Upside Down.
I could tell my daughter was fighting to stay upright. She was hesitant, avoided good friends who might make loud noises and stayed close to me. At one point - honestly the cutest moment in any child's birthday party ever - the birthday girl began singing the Star Spangled Banner to kick off the party. Everyone joined in at this sweet moment. Except my child. Whose hands were on her ears.
I held my breath the whole time, worried we'd have an explosion and screaming. She held it together - I think she was just protecting herself from a possible sensory overload. But the optics- not so good. Later, the family posted the video on facebook and of course there were comments about the girl with her hands over her ears. They were funny comments - really - so many possible captions - but so heartbreaking at the same time. I started to comment with an explanation about sensory needs and then just stopped. How do I explain that we have one foot in the Upside Down and one here with the rest of you, and the hands over the ears are part of our fight to stay here?