Journey to the Center of Sylvie’s Brain

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Some days I feel like Britney… April 21, 2010

Filed under: Uncategorized — janaquinn @ 12:32 am

…  in the throes of a full-on, shave your head on the cover of US Weekly meltdown (complete with pink wig, y’ all.)

Such has been my life as of late- particularly early last week, when I had what I think the experts would refer to as a mother-f-ing nervous breakdown.  Sylvie’s been throwing us curveballs the last couple of weeks, and all the stress finally culminated in a hissy fit the likes of which 50 Nicod Street had not yet seen from me.  It’s funny how a little thing can send me into a downward spiral- I guess that’s where “the straw that broke the camel’s back” comes from. I’m not sure which piece of straw it was that ultimately did the damage, but I guess it doesn’t really matter… regardless, there were a few.

The first whammy to my sanity came when we learned earlier this month that the wonderful practice preschool Sylvie’s been attending twice a week lost its funding and will be closing at the end of the month. This program has provided Sylvie with socialization opportunities most two-year-olds on the spectrum never get.  It also provided me one and only three-hour block of down time I cherished each week, so yeah, I realize I’m being a little selfish when I say I’ll miss that.  A LOT.  The third issue with this little bombshell is that Sylvie’s eight weekly hours of preschool will likely be replaced by at-home therapy. Great. Except summer’s coming. And I suddenly have to be home for 20+ hours of ABA each week. With Amelia. SO not fair to her. I had plans of taking her swimming, to the park, the zoo, etc. every Tuesday and Friday morning while Sylvie was in preschool.  This is no longer possible.  We’re now trying to patch together a fun summer for Amelia through day camps and stuff, but I’m still mourning the demise of the summer that could’ve been.

What else? Oh yes, how can we forget the damned eye patch?! Last Friday, during a follow-up appointment with Sylvie’s ophthalmologist,  he decided that the gap in vision between her two eyes was still greater than he liked, so he recommended patching.  4 hours a day. Just thinking about how I’d manage to administer this little regimen made me break out in hives. Not to mention my shallow side. It was hard enough getting used to Sylvie in glasses- now a patch?! I mean, I’m pretty good at making things cute, but I’m not sure even I can style a patch.

Thankfully, all those hives were for naught- from day one (literally), Sylvie has worn that damned patch for four hours each day with barely a peep. Once again, proven wrong by the bug. 🙂 We’ve gotten into the routine of wearing it 4 hours every morning, when she usually has therapy anyway, so she’s usually not out and about with it on. And as it turns out, even when she is wearing it, her cute glasses kind of disguise it (it’s flesh-colored, so not very noticeable at all.)  I still gag a little inside when she comes up to me and asks, “Patch off now?” but I pray every day that all the stuff we’re putting her through now will spare her lots of pain and suffering later on.

Sylvie’s also suddenly dealing with some digestion issues, which may or may not be an indication of something more serious than run-of-the-mill constipation. With ASD kids, it’s always so hard to tell. She’s currently on a couple of supplements that hopefully will help regulate her digestive system.

So all in all, a lot of unexpected curve-balls courtesy of Sylvie. Add to that Matt’s schedule, which had him out late just about every night last week and in Jamaica for work this week, and BAM!  Meltdown with a side of french fries, coming up! Thankfully, I have Matt and good friends and family to talk with, who’ve helped me slowly find my center again.  I’m still a bit stressed about the summer, but I’m also recognizing that while the summer won’t look like what I’d imagined, it’ll still be okay. And Sylvie’s patch doesn’t make her look any less cute than she is (it would take a lot more than a patch to do that!) And her digestive issues are hopefully going to improve soon. And Matt will be home on Wednesday. And we’re going to Florida on Saturday.  Yay!

P.S. So here I am, about a week following this avalanche of “stuff” that I’ve slowly been digging out from under, and I must say- time really does work miracles. I’m in  a much better state of mind, not as distraught over stuff, and overall in a MUCH better mood. Perhaps that has something to do with my wonderful, lovely, adorable and brilliant little girls.  I don’t know if Matt called them and told them to be nice to me or what, but for the last few days, they’ve been absolute dreams. Silly, funny, charming, loving… the list seriously goes on and on. Funny how they know how to turn it on just when I need it the most, huh? 🙂