Day 37 post-IVIG
The battle has moved to the Bear's high ground. The place every PANDAS parent fears: school. Iwo Jima, Gettysburg, Waterloo.
A place of separation anxiety, tics in front of classmates, anger and weepiness, and perhaps worst of all, germs. Germs everywhere. A class full of walking talking petrie dishes swimming with strep and coxsackie and mycoplasma and colds and flu.
We braced ourselves for what was about to come.
As of late, Max has been up and down day by day and hour by hour. His tics are consistently almost entirely gone. Leading up to the IVIG and soon after getting it, they'd gotten severe. He was ticing almost constantly and had developed several new ones. It was painful to watch. The other symptoms range from significantly improved to as bad as usual.
The weekend before school started, Max went on a camping trip with my husband and my husband's brother and nephew. Max and his cousin are sympatico and Max was excited for the trip. They go every summer. We were afraid of how it might go. Max is extremely tired on his bad days, terrified of insects, moody. We were asking him to canoe and bike for two days and sleep outside. Not to mention the question of his eating the camp food. It could have been a disaster. It was not.
He had a ton of energy the first day and a great appetitie. He was in a good mood. He paddled like a champ and played in the water. Chatted incessantly with his cousin and played with his baby brother. He even ate a new food for breakfast (!)
Day 2 was not so great. What went up, came down. He was exhausted and spent the day sitting on a chair while the rest of the crew went on a hike and rock climbing. Max used to love climbing. He's been a natural at it since he was 15 months old (amazing what a 15 month old mind can come up with in a kitchen with high cabinets and lots of drawers). But the past two years he has been tired and afraid. He was again.
He got home that night at ten and couldn't sleep. So, we started day one of school sleep deprived. He made it through the day fine but came home and let it all loose. Sadness, anger, exhaustion, anxiety. Wailing and gnashing of teeth, clothing torn.
The next day the battle moved to even ground but one where you know not who is truly your ally and who your foe. The teacher conference.
I went in armed with information on PANDAS and armor on. I'm an autism mom. I never leave my armor at home for an IEP meeting. His teachers were largely receptive but utterly confused by what I was telling them about Max. They saw a very different Max from the one we had at home. And, they don't really look if we're being completely honest. Max is quiet and respectful and off in dreamland drawing every chance he gets. Not a problem student.
They talked about how good he was and how beautifully he'd sing this past summer as cantor. I told them about the meltdown he had at home less than an hour after that mass. They looked like I'd popped their balloon. These sorts of meetings generally wind up with me feeling like a harsh mother as the school focuses on how great my child is doing and my insisting they look at all that's wrong. After 10 years of these things for my autistic son, I'm over that.
They admitted they'd seen a big change in Max the previous January. They asked what they could do and agreed to everything I asked. They were not secret agents of the Bear infiltrating our ranks.
The only holdout was the principal. Keeper of the school. The one who must justify accomodations to the state and all the other parents whose kids are not receiving the same. The last straw for her came at the end when she politely requested documentation from Max's doctor of his diagnosis. I handed them the letter. It was signed Dr. Elizabeth Spaar.