1.28.2013

I think this drug doesn't work for Leo. And colds and poison oak suck.

Last week's onslaught of illness and inconveniences and meds reactions and such is almost comic, in hindsight. I know plenty of folks who have more crap going on than we do and don't whine half as much, and I know specific people who don't realize how good they have it yet whine a whole lot more (if you're reading this and I know you read this, it's not you). But as this is my own, personal whining space, here goes. I'm just getting it all out so I can move on. It is essentially verbal vomit but I'm not all that coherent, and that's by my standards.

There were two codas to our loverly hike to the mushroom-and-slides park: It kicked off a horrible cold for me, and gave boss forager Seymour a gnarly case of poison oak, worst he's had in years. If you see him, coo gently. Anything louder might cause more uncontrollable itching.

The following day Leo had a dental appointment, so I drove down early to pick him up. As I arrived at his school, Iz called from her school with a migraine. The folks on her local pickup list were either having their own migraines or taking their own kids to dental appointments, so that's just the way things go some times -- I cancelled Leo's appointment and we picked her sad, aching self up (she was very grateful). My cold reached misery proportions, meaning even cold medicine was of little use.

The next day my cold miserableness continued (no stiff upper lip here just now). We started giving Leo his new med (Seroquel) in the morning as well as in the evening (evening having started four days before then). By 10 AM I had a call from the school wondering what was up with Leo, saying that he was asking for "Tylenol!" for his headache. I told them to please give him the Tylenol, and that I'd be down for a meeting with Leo's SLP by noon anyhow (that meeting went well -- more visual supports, possible formal AAC options). Leo made it until early pickup, but was still too grumpy for our usual Wednesday Costco run -- and he does not deserve to be a public spectacle. I know, he knows he's capable of great things and extended Costco runs when he's feeling like himself.

On the way home, Therapist V -- Leo's best friend in the whole world, and the only person who can really snap him out of his funkiest funks -- called in sick. (This cold, it's a bad one. I hope you don't get it. I'm still phlegm-diddly-umptious.) OK, so then I cried. But then I called Babysitter E, who said she could come for three hours later on. I'm sure I picked up Iz and Mali at some point. And after Babysitter E arrived, I tried a hot toddy and a hot bath. They did help. But even so I could hear Leo being unhappy. And if he's not happy, I can't be happy. That's how I feel about everyone in our family pod.

The next day (Thursday, just to provide an anchor) was more suckage. Leo thwapped his bus driver -- that's a milestone. The bus driver was a sport, I was not. Leo's school called again after he arrived to let us know he was extra-miserable. I once again approved Tylenol. And tried not to cry. Mali and I took on the Costco run, though in my head-congestion-fog I forgot many things. While we were waiting in front of Jennyalice's house for Leo's bus, one of his class aides (who was there to meet with Jennyalice) hung out with us, and let us know that Leo was being uncharacteristically aggressive in class. I tried not to cry again. Then Leo arrived, then we went to pick up Iz, then we dashed for our Thursday Keystone Kops episode in which I drop-kick Mali to a friend who drives down from the north and meets us at Iz's soccer field in a town halfway between our respective burghs, and I take Leo home to Therapist V, then drive back to the field to get Iz, all within an hour and I don't know if that even halfway makes sense. Mali got sent off, but Iz's coach didn't show. So she texted him, and he told her that practice was now in a field one town over. So we drove there and I drop-kicked her, then raced home already late for meeting Therapist V, who had recovered. Except Z called when I was halfway home to sheepishly tell me that her own practice had been cancelled and she showed up at someone else's practice and could I please come back and get her? AIIGH. She did apologize quite neatly.

Friday I gave Leo his Tylenol before he went to school. But I also picked him up before lunch for that neuro appointment. And before that even, I called his med doctor and asked if this med wasn't really the right one for our boy. The meds doctor said to reduce the dosage for a few days and then call him. When I arrived at school, Leo's teacher confirmed that it was another hard day for Leo but that they were all behind him (*sob*). Then we drove to the neurologist, who after a few minutes asked me about Leo's meds and when I told her he was on Seroquel, said "well, those obviously aren't working!" She also said that Leo's EEG probably wouldn't show much after he'd had Ativan a few hours earlier. She's more worried about his anaphylactic reaction than his seizures, didn't really have any advice about our current co-sleeping trade off with him other than to recommend baby monitors (which wouldn't have picked up Leo's clamminess or drooling or the other anaphylaxis symptoms that preceded his seizure, sigh), recommended we try another seasonal allergy med if Seymour is freaked out about Claritin, and as far as travel restrictions was again more worried about the anaphylaxis and recommends we not travel to areas without hospitals. She also said that it was OK for him to have nitrous oxide at the dentist's office. I'm putting that last because as hard as it was to see Leo having such a difficult time during that appointment, I held it together. But then when it came time to ask her about the nitrous oxide, I couldn't retrieve the word (I'd forgotten to write it down, and when I tried to write it down, the word wouldn't come -- I could remember everything about it, that Steve Martin huffed it in Little Shop of Horrors, that its molecule has only three atoms -- but I couldn't write it or say it or see it. So then I did cry, but not for the reasons the neuro thought I was. Sigh. (Disclaimer: previous passage is neither medical advice nor likely an accurate recollection of what the neuro said.)

[Following two Friday paragraphs added a few hours later because my brain is a sieve but this is CRITICAL]

So we left the neuro, and set off to Leo's favorite Indian restaurant as a reward for him getting through the appointment. The restaurant he's been going to since before he was born (and where we had his baby shower, in fact), where the owner gave him a cute outfit when he did arrive, where all the waiters started laughing when I told them Mali's real name, and where Leo decided to start eating saag paneer voluntarily. The restaurant that was barred and shuttered and gated, with a sign that they'd been unable to renew their lease and were very sorry to go. AIIIIGGGGHHH!!! AAIIIIGGGGHHH! I am still processing this one, because it's my favorite restaurant too. It's where we take everybody. Thankfully Leo was a sport and willing to go down the road for a croissant.

We went home to meet Babysitter E for our usual Friday night babysitting gig. I was excited because a dear friend had invited me to her birthday celebration. But as Babysitter E's arrival time neared, Leo's mood darkened. And it soon became clear that I needed to stay, just in case things got interesting. So I did. And things did get interesting, but not because of Leo (he settled into calmness after a couple of hours). Seymour called halfway through the evening to let me know Iz had sustained a concussion during her soccer game and they were headed to Urgent Care. She'll be fine but damn it all. Though I think she was quite pleased about being ordered to rest -- she watched about 10 episodes of silly TV on Saturday alone.

Saturday. I didn't give Leo any Seroquel at all in the morning, and only a half dose in the evening. He had a lovely, lovely day. (He also had two hikes and we spent the evening at another wonderful Disability-friendly museum day with friends like Emily and Lisa and their families, see photo above.)

Yesterday (Sunday): Half dose of Seroquel in the AM and again in the PM, and another grumpy day. Though not quite as grumpy as some previous days. I think it's time to call his meds doctor back. And I wish the research on autism and meds had some definitive answers for people like Leo, because it's just so unfair for him to have to be a guinea pig like this. He hates it, I hate it. But there's currently no other way to help him except this kind of educated trial-and-error.

----

This is essentially a purgative. I feel better, thank you. If the above is tl;dr or confusing, here's the short version again: I think this drug doesn't work for Leo. And colds and poison oak and concussions suck.

[Added a couple of hours later] To be clear: I am mostly remembering this with detached amusement, now that I'm not sick. But also I'm just not myself. Example: I was convinced Leo had a 2nd neuro appointment today. So I arranged for the girls to be picked up by friends. Except Leo's appointment wasn't today -- it's in a week. Which I only discovered when I called the clinic to ask how construction was affecting parking. So I contacted both parents and apologized and offered to take their kids out for treats instead after school. Which went really well! Except that while I was taking Mali's friend back home from frozen yogurt on our way to meet Leo's bus and then pick up Iz and her friend from high school, I got a call from my eldest -- it was early release day and they'd been waiting for 30+ minutes for me to arrive. Arrrgh! But thankfully they are big kids, and did not mind getting pizza later than they'd expected (Leo didn't mind the pizza, either) I want my brain back, people. I am surrounded by smart people who are able to function at top speed through all manners of things. It's embarrassing.

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.

1.17.2013

Second Opinion

We can get used to just about anything, we humans (except possibly teenage behavior, which, thankfully, is a phase). So when I took Leo in to his wonderful pediatrician this morning to follow up on next steps for his seizure and anaphylactic shock episode, I was expecting allergist and neurologist referrals and another EpiPen prescription, possibly a conversation about seasonal allergies and whether or not his recent hoarseness is due to those, the after-effects of emergency intubation, or his voice changing -- not a conversation about how Leo's behavior has gotten out of control.

Because I've gotten used to how different Leo has been since his seizure. And maybe just how gradually different he's been since stopping Risperdal three months ago. He's become more bumptiously active, not necessarily in a bad way though he did accidentally run into his grandmother during Christmas -- something she's always been worried about, and even though she said she was OK she was also shaken. He has been having a harder and harder time getting through our usual outings and excursions without getting upset -- about not getting a treat at the grocery store (never a guarantee), or not getting take-home pizza at Costco (also never a guarantee). His teacher has let me know that the last two weeks have been ones of unprecedented classroom activity and sensory-seeking, so much so that they now have a stand-based punching bag in the corner of the class for him to unleash all his excess energy. And he's been having a devil of a time falling asleep at night, though in the morning he does not want to get up when the alarm rings, which is also different as he's usually our alarm.

I can absorb this all now, in hindsight. But I couldn't recognize that yes, his behaviors were not within standard operating parameters, not until midway through this morning's appointment when he had a stimming cavalcade -- of hitting me. And then he hit his doctor. It wasn't even truly aggressive, more puckish than anything else, because he was not angry and kept smiling the whole time. But it hurt, and he didn't seem to be able to stop, and since I cry if people look at me funny you can imagine the sobbing wreck I shortly became.

Though his pediatrician took her hit in stride (she often spends her vacations doing humanitarian medical work in areas of conflict), she also let me know she was seriously worried about Leo, and would be putting in a call in to his behavioral pediatrician -- the doctor who prescribed Leo's Risperdal. Who called me less than 15 minutes after I arrived home. And let me know that it's probably time to revisit meds ... if not Risperdal, then the Seroquel we'd been intending to transition him to anyway three months ago. I just need to call the neurologist Leo's pediatrician did in fact refer me to, and ask her if Seroquel would interfere with any of the tests she'd want to run on our boy.

I don't have a problem trying a new med for Leo. I really don't. Um. But I have to admit that in my heart of hearts I was so very much hoping Leo had outgrown the need for behavioral meds. Because I don't like meds. I don't like to take them, I don't like my kids to have to take them.

And that is selfish, because my son is teetering on the edge of a behavioral precipice right now, and if he falls over that edge -- if his behaviors spiral so badly that he can't focus, can't go to school, can't leave the house, or we can't have friends visit -- all because I don't like meds -- then that makes his life suck and makes me a bad parent.

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In other current news, I'm pissed about Amy Lutz's one-sided neurodiversity hit piece on Slate, and think you should read Emily Willingham's Forbes article Can People Really Grow Out Of Autism?, as it includes perspectives from autistic people. Under typical circumstances I would shred the former and write my own piece on the latter, but critiquing via a spattering of social media and typing the post above is all I got for today. I'm going to go pet my cat, pretend I can't see the mess that is my house, and then pick up my kids.

1.13.2013

We Don't Stay Home: Playgrounding

Here is what we're doing right now: Lots of playgrounds. Too bad there aren't any good ones in our area [snort, see below, I've been advised not to reveal too much about names or locations as we like our playgrounds not-too-full].

Leo is still finding his feet, temperamentally, after the hospital or maybe after the winter break. One more week of being back-to-routine (yay routine!) and we'll see how he's doing. But no more seizures as of this writing, so that's good.

Mostly-photo posts are about our speed just now.







1.01.2013

New Year's Day 2013 & Full-Family Foraging

Today was a particularly bright, gorgeous New Year's Day, so we spent it in San Francisco's McLaren park. Seymour & his team filmed a 2011 Fungus Fair documentary there, so he wanted to revisit  mycologically active sites. We found several different favorite species, and enjoyed tromping around -- it's a great park for casual hiking. (If you visit the park, know that it's a haven for happy dogs and their humans, and not all will be on leash.)

Happy 2013, all y'all.

 
Our new family portrait?

Panther Amanita just past the egg stage, or so we think.

Running down the hill to let us know she'd found candy caps behind Jerry Garcia Auditorium.

Getting those candy caps!

Siblings. I love seeing them be nice to each other.

The view to Oakland from the top of the park. *waves at friends*

Yellow staining milk caps are pretty.

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