My reason…
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.
After 5 miles during Nemo…
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!
Run Luau Run 
I don’t know what to say but thank you for streaking. Thank you for being you.
That was an awesome post. Not only do I agree with everything you say – as an adult with autism, no less – but I am totally in love with your Nemo hat. The idea of running in Nemo wearing a Nemo hat absolutely cracks me up. Even more than the “YELO BAN” the time and temperature sign said earlier ,which also cracked me up. Because what in the world is a YELO BAN? And that sign never makes any sense. According to my non-Aspie friend, us ASD people tend to crack up a lot. In both good and not so good ways. (The last part my words, not hers.) Eh, par for the course right?
Ditto to Paula’s comment! I still do worry about your running sometimes but you also know how much I respect you.
Love you,
Mom
We love you both Jess and you for all that you do for our kids. Thanks to the both of you.
Well said and well done, Luau. Keep the Streak alive!
Great post!! As far as a “cure”, I feel that the more severely impacted your child is by autism, the more the idea of a cure would appeal to you. There is much that I would miss if my son weren’t on the spectrum, but I would jump at the chance of him having a voice, the chance for him to live independently someday, or even use the bathroom by himself. I don’t view him as broken, or in need of fixing, but his struggles are so enormous that I’d be a fool not to wish him an easier existance.
Terry,
As a parent I completely agree with you.
As I read all of your posts and blogs I feel like I was given a gift that I don’t deserve… Our child with Autism has gone above and beyond any dream that we could possibly ever have about him being as great and functional as he is now. The doctors are talking about removing his diagnose and we don’t know how and why we got blessed with this. most likely my wife’s dedication and patience or the fact that we work and live at home, maybe a Miracle for the ones who believe in them, but no one can say that they can see Autism in our child when they meet him. All I want to say is that “There is a light at the end of the tunnel” , never give up, never slow down and never give anything for granted. 4 years ago we thought we would never have been able to hear his voice. Don’t give up. never ever. Ask , Speak, Listen.
Love you and your family, Luau. Thank you for inspiring and running and writing!
And Terri, we are absolutely on the same page. Thanks for sharing. I don’t view my beautiful, amazing, hilarious, resilient boy as “broken.” But he is severely impacted and needs scientific research to help us help him. He deserves a chance to find a way to communicate with us and be as independent as he can possibly be.
Did they do a CT at the ER?? If not then I am surprised and would ask why not! I didn’t realize a severe headache was a red flag for seziure activity. Wouldn’t be my first guess as to what this was but hopefully they at least follow up with an MRI.
Also, research dysautonomia and the problems that go along with that. Many autistic kids have some degree of this and it goes undiagnosed since it is a difficult disorder to pinpoint.
Awesome man.
I couldn’t agree more. Personally, my son has no physical ailments associated with his diagnosis, so I wouldn’t give him a cure. But there are people who are struggling with so much more than he is. I would never deny others a cure or treatment based on only our own experience. Each person should be allowed to make that decision for themselves. I’m not a huge fan of Autism Speaks but I’m not against them by any means. They provide awareness and research funding that will give people options. Whether or not I personally agree with those options is completely irrelevant. I think what you do is awesome. Self-advocates are able to speak for themselves. There are some on the spectrum who cannot. Not yet, anyway. And what you do is making the day that they can speak for themselves closer. God bless.
Thank you, Luau.
🙂