which I critiqued at TPGA). Because the thing is, things have been shitty here lately. They've been really hard. But they've been hardest of all for Leo. So -- for me -- that means I need to work harder to find answers and support for Leo. Our family's rough patch does NOT give me ammunition with which to "attack disabled people for the crime of appearing less disabled than [my] own child," as Lutz did. As I wrote in one of the comments, "While I do have compassion for [Lutz's] situation as a parent since it is quite close to my own, I am outraged that she used the power of a Slate.com pulpit to spread her own fear and resentment about autistic people, rather than to issue a call for better services for her son. Publicly scapegoating a minority group in the name of fear is never, ever justified. I won't stand for it." But I could use a candy cap soda from The Ice Cream Bar. (That's a candy cap, above.)
There are so many autism parents who already believe neurodiversity activists are some sort of Spectrum Supremacists/Separatists who want nothing to do with the high-support kids like Lutz's and mine. When in fact Neurodiversity advocates like the folks at ASAN identify strongly with the Disability movement as well as the autistic community. And essentially want what parents want for their kids -- better education, supports, rights, practices. I hope Lutz sees this eventually.
-Is there a causative link between his anaphylactic shock and the seizure?
-What kind of sleep monitoring does she recommend (we are currently trading off nights sleeping with him).
-Can we resume his usual seasonal allergy med. It's the last thing he took before his seizure, so we're leery.
-He started Seroquel last week (replacement for Risperdol), and so far we're not impressed. It seems to come with bad headaches that then spawn unprecedented aggression. Tylenol helps a bit, but this doesn't seem like an acceptable side effect.
-Are the headaches, though, exacerbated by his stopping his seasonal allergy med?
-Seroquel also seems to give him bloodshot eyes (not as red as that russula above, but still).
-He also has an eye twitch. Could it be from the after-effects of sleep deprivation (as that's what happens to me)?
-What are Leo's actual travel restrictions?
-Can he have nitrous oxide at the dentist's office (a side effect can be ... seizures).
Hopefully Leo will be feeling better and up for another hike this weekend. And we'll have better ideas for making his life easier.
Posted by Shannon Des Roches Rosa at 10:39 AM