It’s been a tough week at Chez Luau – last Monday Brooke came down with a headache that became so bad that we decided to take her to the ER. The doctors in the ER ruled out stroke and meningitis, but could not figure out what had happened other than to say maybe she had a virus coming on and her system went “haywire”. Not very satisfying. They could not rule out brain seizure.
That was followed up with an EEG on Thursday and a meeting with a neurologist later this morning.
For whatever reason, autistic kids have something like a 25-40% chance of suffering a brain seizure before/as they enter puberty. It has loomed large on the horizon for us, but last Monday’s headache, followed by falling asleep right after dinner on the couch and certain behaviors while Jess and Brooke were waiting in the ER brought those concerns into focus.
On Saturday, while out running 5 miles in the middle of the Nemocalypse, I came to another “why” moment. Not the “why me” kind of why; no, the “the reason why I run” kind of why.
The autism community is split when it comes to topics of science and research, especially when talking about an organization like Autism Speaks. Jess has written extensively about the power dynamic between autistic people and their parents. Parental advocacy can look very different than self advocacy. Along with its awareness campaigns, an organization like Autism Speaks funds quite a bit of research into the possible causes of autism. Some people talk about possibly finding a “cure” for autism through this research.
When Brooke was first diagnosed with autism, the first thought that came to mind was how do we cure this? This thinking does not sit well with many of the self-advocates because, well, to put it simply, they don’t feel the need to be “cured”. Jess has made this point more eloquently many times over, but the point is this – how would you feel if someone was constantly telling you that you needed to be cured of something that was intrinsically you? I don’t think it would feel so good.
But that being said, I still run for Autism Speaks and I still raise funds for them – along with trying to raise autism awareness, this whole #AutismStreaks thing has essentially been a fund raiser for them – and it is situations like this past week that have reinforced my belief that research is necessary, that funding for science is a must.
What we find out regarding Brooke over the next few days is almost irrelevant in the big picture. We will find out that Brooke either had a migraine or had a minor seizure or that her system is completely normal and as the doctors said in punting Monday night, her system went haywire under stress. The bigger picture is that our kids DO suffer from a significantly higher incidence of seizures. Science can help up determine why, how and maybe even what we can do to prevent those seizures.
There was a time when, if offered, I would jump at the offer for a pill that would “cure” Brooke of autism…as a parent, I would be lying if I said that I still wouldn’t consider it, but the truth is, I know there would be hesitation on my part, because I wouldn’t want to lose WHO Brooke is. Ultimately, it would have to be her decision, not mine. But in the meantime, I feel like with proper funding, science CAN realistically attempt to understand why brain seizures are happening to our kids. Even if there is no project currently exploring the connection between our kids and brain seizures, the history of science is filled with accidental discoveries – so it’s not unreasonable to think that as scientists delve into the causes of autism, they may stumble onto the cause of these seizures.
It’s another reason for me to run – another reason to keep #AutismStreaks going even when my legs or lungs or brain tell me it’s time for a rest – another reason my heart continues to say Run Luau Run!