How to Keep a Sad, Unsettled Kid Relatively Content
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.
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I'm sorry you're having such a rough time right now. I'm sending my love your way. And I'm so glad your voice is out there countering so much of the other stuff.ReplyDelete
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I wish you much luck, much more peace & many answers. I also wish for more sun & warmth & less cold wind. Kids need to be OUT.ReplyDelete
I hope his headaches end soon - it's so hard to bear witness when your child is becoming aggressive over something you have so little control over - and if Leo is anything like my child, you may become the landing spot for that aggression.
And I hope everyone gets a whole lot more sleep.
I love this post, though I don't love Leo's discomfort. Hope you find some answers quickly.ReplyDelete
I showed this to my husband and we are inspired to find some places to try hiking with Wesley. Might be just what he needs.
Thanks folks. I do have faith that things will get better.ReplyDelete
@Jennifer, you need ideas, just ask. A great, calm, easy pace to start is the small loop at Arastradero in Palo Alto, just off 280. But go early, the parking lot fills fast. We also love the Butano Creek Trail, though that's a drive (Pescadero) and there's an entrance fee.
Shannon, I appreciate so much your honest writing about both challenges and joys. Amy own son has been in a season like this, and enjoys walking and hiking and swimming.ReplyDelete
I love the way you support Leo and acknowledge that no matter how hard things get for you it's even harder for Leo. Hopefully the doc will have some answers.ReplyDelete
I agree that exercise and getting rid of all the extra energy is the way to go. Sometimes hard here in Ohio in the winter. If I lived near you I would be happy to take my boys and hike with you and Leo so we could all burn off the extra energy and stress:)
@Dixie, glossing over things doesn't help anyone understand Leo or your son (or you or me) better. Thanks for reading.ReplyDelete
@AprilAnecdotes, that would be fun. I'm thinking a stationery bike might work for Leo, perhaps I'll check out Craigslist.