Last summer I wrote a post about the constant vigil I feel I must keep when Brooke is out and about in the world. The setting of the post was a local pool where I would sit half listening to the moms who were completely unaware of where their child was or what their child was doing while I would watch my little one weave her way through the seascape. That constant need to watch her was rooted in her autism, knowing that her attempts to interact with other kids or adults would most likely be met with ignorance or, at best, misunderstanding. I would stand vigil so that I could readily jump in to facilitate interaction.
Toward the end of the summer, I began to loosen up a bit. Brooke still had difficulty initiating easy conversation, but her swimming skills had become stronger and quite honestly, her social skills were showing some improvement. I finally was reaching a point where I could look someone in the eye from time to time while having a conversation with them or watch Katie while she performed some kind of diving trick.
I was finally able to take a breath.
***
A little over a month ago, Brooke was diagnosed with Atypical Rolandic Epilepsy. Had she been diagnosed with Typical Epilepsy there would have been a clear path to take: anti-convulsive medication. Jess has done an artistic job describing the difference in Brooke’s diagnosis comparing a typical diagnosis to a raging fire and Brooke’s diagnosis to popping embers – her seizures are more like epileptic spikes, not enough to warrant medication, but still there, still burning, still able at some point, in a non-specific future, to develop into an all out blaze.
What is the prescription for Atypical Rolandic Seizures?
Vigilance.
Vigilance?
That means she cannot be near or in water or on any structure unattended because at any point an ember to pop and catch fire. The likelihood of this happening? Slim. This parent’s willingness to take that risk while she swims at the pool or takes tub? None. And I can’t depend on a lifeguard because she could simply seize and sink.
***
So much for taking a breath.
***
So if you see me at the pool this summer and it seems like I’m ignoring you or only half listening to you, please don’t take offense, but I am.
Run Luau Run 
Well written explanation and commentary, Matt. I know this development (the epilepsy) is not something you would have asked for (understatement I know). But as to the pool & the ignoring – I would love to be ignored by you at a pool this summer. 🙂 🙂
You know, my initial reaction after reading this – well 2nd really (my first was: “UGH. You’ve GOT to be kidding me! Give them a break for a SECOND!”) -. was to go into brainstorm mode on how you could possibly find a way to take that breath sometimes while out. I pictured the pool and the crowd…wondered how it could be managed without having to be on high alert every second. A 1:1 person? Well they’ve had to be lifeguard certified and only there to stick right with her, so that’s unlikely. Anyway, I was brainstorming and realized that my attempts are not helping. I pictured my son at a crowded place near water. I he doesn’t have a seizure disorder (but is 5 and does live with PDD) and the idea of letting that be someone else’s job made my hair stand on end. He is a strong swimmer for his age and has been in lessons since he was 2, yet I know I watch like a hawk even when he’s in lessons with a small controlled group b/c I am hoping/praying he can mesh with his neuro-typical peers in class and maybe mildly control the “happy flapping” that takes over b/c he LOVES to swim.
I know you will be on guard no matter what. No wonder you run with such determination. You are in full-time endurance training for your job as Dad. Thank God you’ve found that time and space through hitting the streets (or trails) to train, blow off steam, think, and keep those lungs trained for the type of “breathing” you do.
You’re an awesome Dad and an inspiration.
Thank you Shannon.
If people don’t get that, maybe they’re not worth talking to.
We all do what we have to do.
Love you,
Mom
You know what man, you are a good dad.
You’re a wonderful father, and you kids are so lucky to have you. I’m inspired by how seriously you take parenting, it’s sad that we don’t see parents being like that these days. Keep it up, and ignore anyone you need to!