1.25.2013

How to Keep a Sad, Unsettled Kid Relatively Content

This remains the best playground for Leo right now. It's somewhat hidden, you either have to hike fifteen minutes to get to it, or pay a fairly steep entry fee to gain parking lot access via a winding back road. And Leo gets to be sentinel (preferred), pacing a path while observing the action around and below and only participating if he wants to (though damn does he also love those slides -- they are metal, and if you kick them on the way down it makes the loudest, most reverberating BONKS).

We hiked, of course. All of us. Because the playground is near the top of a beautiful, oaken, mushroom-dotted hill covered  with the sort of clearly delineated not-too-steep paths Leo prefers because he knows exactly where to go, and can run back and forward and up and down and vent some of that boundless energy. The girls enjoyed the hike too, once they were there (they sometimes need coaxing to pry their eyes and fingers off the iPad Minis their generous grandparents gave them for Xmas, but they are like I used to be at their age re: Catholic mass -- I didn't want to go, but I liked it once I arrived). (Yes that woman in the leather jacket and jeans is Iz.)

It's good to get out, and spy fungus like these Big Gyms. They make us all happy. And we can use some happy these days -- Leo continues to have a hard time, and we continue to wonder and worry and experiment. And mostly, to fail at finding ways to help him be settled and content --  except when we hike, and go to this playground. He was happy the entire time. Winter, go away! You suck! Leo needs long sunny days and lots of outdoor time and exercise.

One of the more frustrating aspects of seeing Leo in such a state is popping up for some air and news and being confronted with articles like Amy Lutz's attack of the Neurodiversity movement in Slate.com (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.)

Lutz's article reminds me of the time the parents at Leo's co-op preschool nearly rioted at a nutritionist who came in and declared that, if your child needed protein and fat and refused to eat anything containing either unless it was a GoGurt bar, then eating refined sugar was an acceptable trade-off. (Maybe they would have preferred for their kid to eat a sugar-free delicious milk cap, pictured?)

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.

I'm off now, to see Leo's primary neurologist, with a second neurologist appointment next week. Here's my list of questions. I hope the doctor is able to give direction, if not answers:

-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).

I am crossing my fingers, always. I would make a joke about the violent barfing-then-hallucinating properties of the mushroom to the left, but I don't have the energy (stay away from them, kids). They're pretty, though.

Hopefully Leo will be feeling better and up for another hike this weekend. And we'll have better ideas for making his life easier.

9 comments:

  1. 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
  2. This comment has been removed by the author.

    ReplyDelete
  3. 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.
    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.

    ReplyDelete
  4. I love this post, though I don't love Leo's discomfort. Hope you find some answers quickly.

    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.

    ReplyDelete
  5. Thanks folks. I do have faith that things will get better.

    @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.

    ReplyDelete
  6. 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
  7. 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.
    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:)

    ReplyDelete
  8. @Dixie, glossing over things doesn't help anyone understand Leo or your son (or you or me) better. Thanks for reading.

    @AprilAnecdotes, that would be fun. I'm thinking a stationery bike might work for Leo, perhaps I'll check out Craigslist.

    ReplyDelete

Respectful disagreement encouraged.

Related Posts with Thumbnails