Notes on the Leelo We Love So Much

Notes on the Leelo We Love So Much

Leelo at The Aquarium

I wish the Monterey Bay Aquarium was in our backyard. Still, it's not too much of a bother to drive 90 minutes to get there for the wonderfully calming effect the Aquarium has on Leelo. He loves it there, he is at peace there. He is happy just to stand out on the various decks and look out at the ocean, but he enjoys watching the sea creatures and playing in the water play areas, too.

My cousin Nad and I took our kids there two weeks ago--without any Leelo help--and my boy was just fine. Though any time we entered an area where people were less than ten feet apart, I became Leelo's literal shadow, to ensure that he didn't act on any sudden urges to shove people out of his way.

Things have been getting better. We're still not doing the joyous I'm going to get you chasing and teasing and rolling of pre-Christmas, but we're having some nice interactions and some good language. When Seymour dropped me off at SFO last week, I told Leelo that I was going to go to Vancouver to Auntie Diamond#2's funeral. Leelo said, "Mommy's going on an airplane!" Which is really great language for him.

He has also been paging through his Dr. Seuss books and sitting through us reading them to him, which is reassuring as he hasn't been wanting to sit through any books except bedtime books for quite a while. I wonder if it's because Mali has been asking to watch her Dr. Seuss's ABC video lately. I'll need to get some more Dr. Seuss book videos from the library.

Other goodies:
  • We've been having a lot of fun playing "Spin Leelo in the laundry basket."
  • Snuggling. Much more of this lately.
  • Smiling in reponse to interaction, jokes. Wow.
  • Great listening to requests using casual language, e.g., "Maybe you should put your straw in the trash, Leelo." "Close your eyes so I can rinse your hair." (That last one is major; I've been trying to get him to do this since he was two)
  • Notorious non-biter/"I will only eat it if you cut it into bite-sized pieces" Leelo took a bite of something when I told him to "eat it like a banana."
Last Tuesday the kids and I had dinner at Sewerage with Jo, with no Seymour, and no Leelo help. It was fine. Jo and I are not especially fine, but dinner was an otherwise pleasant and unremarkable experience--which is remarkable for a dining-out-with-Leelo event.

I am wondering if Leelo is in a good space because it's been a few weeks since all the holiday madness and schedule disruptions. Which makes me worry anew; my dad's leukemia may have changed to a more aggressive form (bone marrow biopsy tomorrow to find out, ouch) so I would like to take the kids down to visit him and cheer him up. But this may fuck Leelo up all over again.

I am worried about his mushy speech, and how he seems to have lost his once-legendary ability to remember anyone's name.

Leelo's still not in a great sleep space, though since he's been sick for the past three days I have had to wake him up for the first time in what seems like months. We are definitely off Melatonin after another trial run at 3 mg. Though it did hit him like a "frying pan over the head," to use the words of a parent on a SNK eGroup, it also triggered those lovely 4 - 5 AM waking cycles. We stopped the Melatonin a week ago and he seems to be back to a more regular sleep pattern.

We have switched him from the largest size pullups to GoodNights as diapers. I am tired of poops blowign out his jammies and bedclothes everyday, sometimes twice (after bedtime, before getting up). He has grown and is still not interested in pooping in the toilet, so for now what we need is better containment.

Going back and looking at Supervisor M's notes from December, it seems that Leelo's behavior, etc., took a nose dive, with a couple week lag coinciding with the start of winter break--at the same time he went off rice bread and almond butter. Probably a coincidence, because I really don't think the DAN! (Defeat Autism Now) protocol works for Leelo, or the GFCF diet. I had a brief chat about DAN! with DoubleTrouble last night, but basically we've tried it all, with good-faith full-year efforts, for naught. But I also wonder if it would have been different with a different doctor--DoubleTrouble's doc (Travis) sounds really great--I never really saw our doc connect with Leelo the way DoubleTrouble has described her doc understanding her boys' health and symptoms. In fact our doc originally questioned whether or not Leelo was autistic, whether he wasn't just beyond ADHD (which I have to admit I sometimes wonder about, too).

Although, since I'm sitting here spiraling, I might as well add that in my bones I think Leelo has a specific genetically based autism syndrome that has not yet been identified. It amazes me how many autistic children and adults have faces that look Just Like Leelo's--big round eyes, upturned noses, and triangular mouths.

We are still working on Leelo's behavioral plan, which (thankfully) will be done by Supervisor M. Yet another amendment to IEP--apparently Leelo is the local winner for number of IEP addendums. I also didn't realize that a behavioral plan is such a big deal--the district only does about five of them per year. Leelo is such a multiply exceptional guy. Special, that's him!

We have recently starting tracking those daily factors that may contribute to exceptions from his exceptionality with a collaborative Google spreadsheet that everyone on Leelo's team can both view and edit. So far it has proved marvelously helpful.

Speaking of Leelo's team, Therapist Y has agreed to come back and will be doing the Tuesday afternoon home session so that Therapist L doesn't get totally burnt out. Leelo (and his sisters) were very happy to see Y during last week's first session, and so was I--his energy and enthusiasm are infectious.

The meds questions are still ongoing. Last week when Leelo was sick with a cold (as opposed to now, when he has the barfs and shits) he had three potty accidents. Last week when I was in Vancouver he had another accident at school. Leelo needs to live in a world where there are no cold or flu viruses, and where everyone is home in the same way, every day. That would be good for him. In the meantime Supervisor M has recommended that we look into Singularity for his season allergies. She says that (anecdotally) children who usually react strongly to most meds tolerate Singularity, and that it's a prophylaxis rather than a remedy.

Supervisor M did really great data tracking on Fukalin. Basically, Leelo's behavior at home in session isn't that different on Fukalin or off it--but he is definitely more aggressive on it. So Fukalin really not a good choice for our boy.

Dr. Sheyenne has recommended that we investigate Stratifera. Also Seymour says his research and observation and parental instinct suggest that antiepileptics may be a better choice for our boy. Leelo's EEG did indicate pre-seizure activity in his brain, there is some precedent, and Seymour reminded me that when Iz had her altered phases both in and for a couple hours after her febrile seizures, she acted a whole lot like Leelo does all the time in terms of disorganization, mania, and even chewing (though it was IV tubes in her case). Will ask Dr. Sheyenne.

Think that's it for today.

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