For some reason Blogger has been very flakey about searches. Stuff that I know I have labeled isn't coming up when I search for the label. For example, I tagged a post that I did for our 12th anniversary and tagged it with divorce (okay...okay...stop...it was because I had tried to pull divorce statistics for special needs couples and I wanted to be able to easily find them later...because Leslie and I are NOT divorcing, and I was trying to contrast that with the data I had (or compare it)).
Someone on Facebook made some statement about divorce among parents with special needs kids, so when I went back to find my sources for the information I had already researched; I typed "divorce" and Blogger returned nothing. Anyway, I went post to post until I found it...and there it was, complete with "divorce" tagged. So what's up with that, Blogger? Huh??
Anyway...apart from Blogger glitches, I want to be able to find posts about how Lily reacts to her current 'weaning' from Tenex.
Leslie and I have different recollections of where Lily was when we started her on Tenex last year. Leslie recalls essentially that she was then where she is now...only THEN she wasn't taking meds and now she is, so she's rightly asking, "why are we medicating Lily for no reason." My recollection is that she was grinding her teeth, biting, wringing her hands, heavy breathing, etc, much more than she is now and so I'm saying..."That's why."
In an effort to figure out whether the Tenex is doing any good, we're weaning her off of it over the next month or so and then reassessing where she is.
That said, she's very very stimmy of late. Leslie and I talked about it a day or two ago. She's been very stimmy leading up to weaning her off the Tenex...not just since we started the process (which was Monday of this week). She's been more defiant. She's been more prone to throwing herself to the floor. More prone to meltdowns and biting.
Yesterday while I was trying to get her to put her glasses back on she threw herself to the floor and lay there on her back. When I tried to put them on her, she reared up and then slammed her head against the floor. End of glasses attempt.
I'm not trying to trigger meltdowns. I'm not trying to force her to do something she hates. But there's such a weird moving target associated with figuring out whether her behavior is simple defiance or if she's overloaded and truly needs the break. We need her to comply with our request (for the most part) and so when she's more defiant, the first reaction is to "make her", but when it becomes obvious how adamant her refusal is...well then is it behavior, is it meltdown, is it just stubbornness?
This morning she did not want to get off the potty. She fought and fought and fought. Finally once she got off (on her own), she refused to pull up her pants. Would not do it. Threw herself to the floor several times until she DID half-ass an attempt and I gave her credit. She was so frustrated that she tried to bit the bathroom counter which WOULD have been amusing, had she not misjudged the distance and bonked her lip off of it, bloodying it. She refused to go down the steps, so I ended up picking her up and taking her downstairs, while attempting to avoid gnashing teeth...
I don't know if this is Tenex-weaning. I don't know that it's not. Yes, she's been more defiant lately. But she was sort of leading up to that prior to pulling back on the dose. Leslie opined that maybe she's just feeling "off" because she's gotten used to how her body feels when she's on Tenex...but she's so teeny tiny she was only ever on a half tablet at night (now a quarter) and it should be out of her system by morning.
Anyway, I'll probably tag a few posts with my observations if for no other reason than to capture the memories that flee from my ever-less-reliable brain.
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To more pleasant things. Lily has been eating better in the mornings. For years all we could feed her was yogurt. Every morning...a cup of Dora Yogurt. She's branched out recently, and lately she's been eating strudel or poptarts or cereal and some other stuff every morning. Much better calorie counts. She's still tiny, but she's getting more food in her.
This morning I made a strudel for her, and after she'd calmed down from her morning meltdown, lying on the carpet of the family room face down, and kicking her left foot periodically, she sat down willingly and watched "Blue Nono" (Highschool Musical II) while she ate. Then she wanted chips.
And it's breakfast...and chips are bad for you...but this kid is TINY...and so usually I try to at least get something good for her in her system with a chip reward. So Lily asked for chips and I said, "First we eat yogurt..."
"And then chips," Lily finished for me.
"Right, baby, and then chips."
So I had her sit down at the table and fed her the yogurt and she ate THAT great, and then she asked for chips, so I broke four pringles into bite size pieces and let her eat them while I busied myself with cleaning from breakfast and getting stuff ready. When she'd finished she got up and wandered around the family room watching TV before approaching me at the kitchen table (where I was writing a note to her aide/teacher in our communication log) and said, "I want blue fruit." I had just finished writing: "Breakfast: Strudel, yogurt, chips (don't judge)"
"You mean blue berries?"
"Yeah!"
"Okay, baby. I'll get you some blueberries..."
"And then chips," she finished for me.
"Okay, baby. If you eat your blueberries I'll get you more chips." And again she finished her blueberries without issue, and again I got her four Pringles, broke them into pieces, and finished writing in her log. I added to the previous entry, "Breakfast: Strudel, Yogurt, chips (don't judge), blueberries, and more chips (fine, you can judge)."
When she finished this, I told her she had five minutes before we would try on the potty and set the iPhone timer "duck" to quack. When it went off, I paused the television and Lily walked to me at the table. I said, "Okay, Lily, time to go to the potty..."
"And then I eat all the chips!"
Which made me laugh because I immediately thought of the Allie Brosh cartoon "Clean ALL the things!" that's so oft modified and shared on the interwebz, and I replied with a chuckle, "Yes, baby, then you can Eat ALL the chips!!"
And it looked something like this in my head...
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| From Hyperbole and a Half |
Only the broom was chips, and the person was Lily.
So off we went to the bathroom, and when she was done (more like clockwork this time) she sat at the table and I got her four more chips and she ate those. And then I remembered a picture we had taken of her at her cousin's birthday party one year at a Japanese steak house when Lily was three. She was even less likely to sit still back then, but she was ape over Barney, and I remember when she started fidgeting and getting anxious and upset, I had given her her Barney and she had been. SO! EXCITED!
Seriously...SO EXCITED!!! And I took a picture of her holding Barney over her head like he was fucking Excalibur and she'd just pulled it from the stone...or the Lady of the Lake...or whatever the legend of Arthur is, and every time I see the picture it just makes me so happy. Her eyes were pretty crossy back then. The glasses are to correct that. But when I look at this picture, I don't think of the strabismus amblyopia...so much as a little girl so excited about Barney that her eyes just cross out of the sheer impossibility of how awesome it is to hold him in her arms.
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| AAAAAAAAAARRRRRRGGGGGHHHHHHH!!!!!!! |
It was a cute morning, despite a rough start...
