Leelo vs. Winter

Leelo vs. Winter

Leelo is in such an odd space right now. He always has a shitty winter.

Right now he is on a meds holiday. Fukalin was fabulous at first, but after a few weeks the attention and language benefits waned and we got a whole lot of aggression instead. You can't imagine how much fun it is to hang out with a kid who may deck you, or anyone nearby, at any moment. If this keeps up we are going to have to go into seclusion. Or do something.

Leelo spent much of the holiday break pushing anyone who came within five feet of him: My dad (who because of his various heart/blood conditions ended up with huge bleeding gouges down his cheek), kids at the trampoline arena, Seymour's mom who was already afraid of him and despite our best efforts, Hayley and basically anyone who would come over, kids in the jumpy house at Sage's house even though jumpies are usually a source of pure enjoyment no matter how crowded--and the crowner of pushing a little kid off of playstructure at the park. The meds holiday started that next day, Jan. 16th.

There were some obvious differences in his non-Fukalined behavior. He was distractable and disorganized for academics and interactions, but was giving me hugs, was much calmer for me unless provoked by overstimulating environments, and was much calmer for Babysitter A (especially during Iz's traditional birthday sushi dinner). He has also been keeping his shoes on more, and we're seeing more of the sweet Leelo we love.

Supervisor M said that during his Jan. 17th home session Leelo was able to work longer without rewards.

He has been asking for us more lately, and has been noticing our facial expressions more. If we're making particularly grumpy faces he will use his hands to mold our mouths into smiles.

His aggression is not totally gone, but it is mostly turned inward and is frustration-based. I appreciate the longer ramp-up to self-injury, and to attacking his sisters. I do not appreciate that he has started waking up at 4:00 AM, or that he is literally climbing the walls all day long (I woke up this morning to the sound of glass smashing all over the kitchen from Leelo climbing on top of the fridge to get at what I thought was a secret madeleine stash, and his then dislodging a empty Strauss milk bottle onto the stone countertop. I am still finding bits of glass everywhere in the kitchen).

Dr. Sheyenne has suggested that we return Leelo to the Land of Fukalin after a week off to see if the meds vacation will "reset" his Fukalin tolerance. As mentioned, he had a wonderful initial three-four weeks on Fukalin, but then--according to Dr. Sheyenne--started metabolizing it too quickly. Then we had less organization and focus and that unnerving aggression.

If the Fukalin reboot doesn't work well then we'll see if alternating Adderupp and Fukalin months can keep him in a good place. If that's a wash then we'll try Stratifera, which is supposed to have less of the stimulant-based aggression side effects. Bummer is that it takes five weeks to kick in.

Funny side note about Fukalin: we have bridge health insurance for January as Seymour's new benefits don't fully embrace us until Feb. 1. Guess who the bridge folks wouldn't insure? Was it the two-year-old who keeps getting sent to the ER and who has been hospitalized twice for respiratory infections? Is it the older girl who has had three costly and lengthy ER visits due to febrile seizures? Nope. It is the kid with the $50/month Fukalin prescription. Apparently that is a pre-existing condition. Bastards. Leelo, do not get sick or injured for nine more days!

Here are some other crappy Leeloisms of late. Meds? Winter? Wish I knew.

We tried him on 2 mg of melatonin as a sleep aid, for about a week. No noticeable effect.

His spontaneous speech is really minimal and also mushy. He's also back to refusing to state colors. He doesn't want to put in the effort to look at objects in question and so will tell you that they're all blue. These kinds of regressions are painful because it not only takes such effort to help Leelo acquire skills, but then he can lose them so quickly.

So I am trying to focus on positive things like singing Shake Your Sillies Out with Mali, which Leelo loves and which they will actually sing together; counting goldfish crackers up to 10 (more reciting than counting, but hey); and the fact that, for now, when he wakes up at 4:00 in the morning he will often let us bring him in bed with us to snuggle and then will go back to sleep. I haven't gotten to really snuggle with him in a long, long time.

Also we are in the middle of transitioning Leelo's space in our house. Right now his therapy is taking place in the office; soon we will get all the rest of the office equipment out of there an up in our living room, and Leelo will have his very own for real space just for him. Should help. I am hoping it helps.

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