Journey to the Center of Sylvie’s Brain

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Apparently I post quarterly. November 29, 2010

Filed under: Uncategorized — janaquinn @ 2:57 am

Unacceptable, I know. But I’m not giving up on this blogging thing, I tell ya! Reading back through the last few posts, it is painfully clear that I have a LOT of catching up to do. And doesn’t it figure, the last few months have been among the most eventful of Sylvie’s little life! But I’m here to chronicle her wonderful, crazy, chaotic life, and I’ll do my best…

Summer came, and with it came Sylvie’s new lightweight therapy schedule. In June, we had her first IEP meeting, where the Early Childhood Special Ed Department informed us that she qualified for services (shocker.) I knew she’d qualify, and I knew she’d probably qualify for full-day services, but when they told us that was their recommendation for her, it still hit me like a ton of bricks. It’s like I’m *still* waiting for someone to say, “You know what? Never mind that whole autism diagnosis thing-a-ma-jig… Sylvie’s all good!” I know that’s not the case, and 99.9% of the time, I don’t even think that way, but that .01% sneaks up on me every now and again when I least expect it, and it snuck up on me at the meeting… I fought with every ounce of strength in me to not burst into tears, even though I fully expected to hear everything I was hearing. Funny how your head and heart can betray you at the most inopportune times.

Anyway, we agreed to the full-time placement in the town’s integrated preschool program, with speech, OT, and PT services as well. She also qualified for extended year services over the summer, which is great.  The IEP was hammered out to the satisfaction of all parties involved and was signed, sealed and delivered. I had the rest of the summer to relax.  And wait.  And think.  And worry.  And freak out.  See where this is going, anyone?

By the time September rolled around, I was in a complete state of anxiety. The thought of Sylvie leaving me for 6 hours a day, 5 days a week, was truly more than I could bear. Add to that Amelia’s 5-day pre-K schedule, and I found myself in the throes of a mid-life crisis the likes of which are usually reserved for guys with receding hairlines and Mazda Miatas.  What’s a stay-at-home mom without kids at home?! What in God’s name would I do with myself?

Long story short? Much ado about nothing (from Sylie’s end, anyway). Sylvie took to school like a fish to water.  She connected with her teachers almost immediately, and not long after that, she began making connections with classmates. We did quickly discover that the full-day schedule was simply too much for her, so we now pull her out early 3 days per week.  I love the teachers, the therapists, everyone… They not only made the transition for Sylvie smooth, they made the transition for me smooth, and I’m so grateful to them for that.

It took me a little while to get used to my new “freedom”, but I quickly found a new rhythm… Once the dust of back-to-school madness settled, it became very clear to me that the transition from summer to fall, coupled with my lack of really dealing with Sylvie’s diagnosis the previous summer was having a pretty profound impact on my mental state. Anxiety and stress took up residence in my brain and showed no sight of leaving- this was a feeling I was neither used to nor interested in keeping around. I found a therapist who speciliazed in working with autism families and began visiting her weekly. Turns out I’m all kinds of fucked up! Just kidding… but we’re touching on lots of things in my life that may be playing a role in how I cope with Sylvie’s challenges today. It can be heavy at times, but I feel like I’m finding my center again, slowly but surely.  I’m also back to exercising regularly, which has done wonders for my mental well-being (and doesn’t hurt the well-being of my butt, either).  I’m also volunteering at both girls’ schools, too.  Still haven’t mastered keeping the house clean, but that’s okay. I’m pretty sure they don’t give out medals in Heaven for spotless kitchens. 🙂

Just wrapping up the Thanksgiving holiday tonight, and I’m reminded yet again of how grateful I am to have my family, my daughters and my life. Hell, you could even say I’m thankful for autism. It’s made me a better mom, and allowed me to experience the thrill of celebrating the tiniest little milestones, the ones most families typically don’t even notice, but ones Sylvie has to work so hard for. It’s taught me to not take anything for granted, and to not judge others.  I’m thankful for it all.

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We take a break from our regularly scheduled programming… June 4, 2010

Filed under: Uncategorized — janaquinn @ 3:54 pm

… to whore out some pretty kick-ass pictures of the girlies, courtesy of our handy dandy new camera.  They’ve always been cuter than cute in my eyes, but it’s so cool to be able to capture all that cuteness in a picture, finally!

 

Big Sisters Rule May 16, 2010

Filed under: Uncategorized — janaquinn @ 6:01 pm

Amelia was invited to a friend’s birthday party yesterday, and because Matt was out of town, I had to bring Sylvie along… among the many kiddy  amusements was a big ol’ bouncy house. (Side note- seriously, does life get any better than a bouncy house when you’re a kid?) At one point, the house was jammed with all the party goers, including Sylvie. Amelia suddenly stopped her bouncing, and said quite loudly, “EXCUSE ME, EVERYONE! I need your attention! EXCUSE ME! You need to listen to me!” This went on for about 30 seconds at which point I convinced her that despite everyone’s continued jumping, they could, in fact, hear her. (All of Arlington could hear her, quite frankly.) She continued: “Everybody, my baby sister Sylvie is in the bouncy castle, and you all need to be really careful around her, okay?”

I sat there, stunned, with tears welling up in my eyes. Now, I know Amelia loves Sylvie to the moon and back, but I’d never seen such a proud, brash display of sisterly protectiveness before.  We’ve been explaining a lot more of Sylvie’s “stuff” to Amelia lately, and it’s like she’s really getting it. At 4 years old. That kid rocks my world time and time again.

And it should go without saying that Sylvie had a ball:

And another picture that made me laugh from that day:

Apparently, my never-ending quest to capture a picture of the two girls looking at the camera at the same time has been hit with yet another obstacle- Sylvie’s new found jumping abilities. The kid can’t keep her feet on the ground to save her life these days!

 

Family Vacation = success! May 4, 2010

Filed under: Uncategorized — janaquinn @ 6:26 pm

I can now breathe a sigh of relief and say, with absolutely no worry of karma coming back to bite me in the butt, that our Florida trip was an unequivocal success! Lovely weather six of the seven days, grandparents who were just the right amount of involved (and provided ample hours of free babysitting!) and a few kid-free afternoons by the hot tub made for a vacation the likes of which I didn’t think would be possible.  It was also a good chance to see how Sylvie would handle a stretch of unstructured, therapy-free days, and I’ll admit- I was a little nervous. But she was amazing! Except for a little craying jag on the descent of our first flight (we had connections both ways), she was happy as could be on the planes.  She showed lotsa love to Yiayia and Pappou, and she even warmed up to the pool and the beach after a chilly first impression.  It was so great to get away for a while, and even greater to see how well Sylvie managed “in the wild” (as I referred to it). She really did better than I ever imagined, which eases my worry with regard to the summer a LOT. I’ve been pretty stressed with how uncertain the coming months look, but I’m realizing that she’s not nearly as dependent on the XX hours of therapy as I originally thought. Sure, she needs therapy. There’s no debating that. But I’m realizing that her therapists have passed on to me more knowledge than I realized, and it’s pretty easy for me to turn anything into a learning/growth opportunity for her… at Lion Country Safari, I pointed out animals in the distance to help her work on following my gaze. We asked her what colors the birds were at the zoo, and she happily told us. We dug holes in the beach sand for her to shake her rum in… sensory break, anyone? I’m quickly realizing that learning for Sylvie doesn’t just happen at the dining room table. It can happen anywhere, and I’m excited to see what she’s capable of this summer. 🙂

All this being said, I’m still a little bummed she lost the hours she lost. We also had to say good bye to two of her therapists, which bummed us out as well. But her new schedule is shaping up pretty nicely. She now has therapy Monday-Thursday mornings, as well as Monday afternoons. Her Saturday speech session will also likely move to a week-day afternoon slot.  A little lighter than before, but then again, it’s summer, and everyone slacks a bit in the summer, right? 😉

 

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? 🙂

 

Spring has sprung! March 27, 2010

Filed under: Uncategorized — janaquinn @ 12:58 am

at least for a few days… Mother Nature has been teasing us with 60-70 degree weather for a few days, and the whole family’s been giddily running in circles around the yard. Sylvie in particular is OBSESSED with being outside. In fact, nothing can trigger an instantaneous meltdown quite like the announcement that it’s time to go inside.  Actually, now that I think about it, quite a few things can trigger an instantaneous meltdown these days. Sigh. Sylvie officially received her invite to the “terrible twos” throwdown (albeit it a few months late) and has released her wrath on us in ways I never imagined.  Her tantrums were particularly bad a week or so ago, when she’d turn into a wild animal for no reason at all, raging for up to an hour at a time. And the force of her tantrums- MAN! I mean, Amelia’s a tough kid, but Amelia’s tantrums were like pony rides and ice cream compared to Sylvie’s. Thankfully, those scary tantrums are happening much less frequently, and I’ve received a lot of good tips and advice from her therapists as to how to handle them, so I’m not feeling quite as unnerved and overwhelmed by them as I was. Not gonna lie, though- I’m not looking forward to the next one!

In other news, we have officially begun the IEP/Transition to School process- we met the special ed preschool coordinator for Arlington schools today… really nice guy, with lots of great information. We’ll be starting with the evaluation process in the coming weeks (OT, speech, PT, and a psychological eval- ikes!) In the meanwhile, though, I’m very optimistic that Sylvie will find a great home in the Arlington system come September. Guess time will tell!

And in a slight twist to the usual routine, Matt will be heading down to the Cape with Sylvie tomorrow, leaving me and Amelia to share in some crazy mom-daughter quality time. Can’t wait. 🙂

 

Could I *be* any worse at this? March 8, 2010

Filed under: Uncategorized — janaquinn @ 3:45 am

Apparently I’m attempting to snag the award for “most sporadically updated blog” on the entire interwebs.   I know, an update every 6 months just doesn’t cut it, so here I am, trying to make amends to you, my loyal reader(s).   (Don’t want to get too cocky, you know.)  Enough of my pathetic groveling, though, and on to Sylvie.  After all, that’s why we’re here, right?

We’ve been very busy since my last update in September.  Sylvie’s kicking butt at Clinic (Milestones’ practice preschool), where she goes two mornings each week.  The therapists there help her work on all sorts of skills- social pragmatics in particular, which she obviously doesn’t get a ton of in her one-on-one therapy sessions. I’m starting to see a little improvement in her interactions with Amelia, though my intervention is usually required when the two of them are interacting. (To her credit, Amelia’s been an AMAZING big sister, really learning to be more patient with Sylvie and trying whenever she can to help her out.) Sylvie’s also begun receiving additional speech and OT through Milestones as well. All told, between ABA, clinic and EI, she’s now up to 22 hours of therapy each week. While the adjustment has been a little tough on me (Mommy misses her down time!), Sylvie’s taken all the added sessions in stride. Her communication is really blossoming- if you need any proof, stop by 50 Nicod around bedtime, when she bids us good night with a chorus of  “Sagapo poe-ee!” (greek for I love you very much.) 🙂 She’s a labeling fool, quick to point out a truck, tree, star, bird… just about anything within a ten-mile radius.  Colors, numbers and letters also play a big part in Sylvie’s daily observations.  Yellow, 2 and O are her current favorites (ask my why, I have no idea.)

While she’s making great improvements in her communication, I’d be lying if I said each day doesn’t come with its own unique challenges.  Like a typical 2-year-old, Sylvie’s learned the art of the tantrum. She likes to take it to a new level, though, freaking out at the drop of a hat and remaining inconsolable for longer than I care to admit. She’s exceptionally hard to manage at certain events and venues (the Children’s Museum on a Saturday? NEVER. Birthday parties also make me break into a cold sweat.) And I still struggle with keeping her safe outdoors, as she likes to bolt the second her feet hit the ground.  Feeding is a joke- my once voracious eater’s food preferences have now dwindled to about 6. Luckily, I’m still able to sneak veggies and healthy junk like tofu into her diet through smoothies and the like. But seriously- a kid who doesn’t like hot dogs?!? Does that even exist??

Amidst all our day-to-day “stuff”, Sylvie and I had the chance to participate in our first mother-daughter protest this past week! Deval Patrick and company had proposed some outrageous fee hikes and changes to eligibility requirements within the state’s Early Intervention Program (the very program which helped us get the ball rolling for Sylvie’s therapy.) Last Monday, a “stroller-in” was held at Governor Patrick’s office at the State House, and Sylvie and I attended to show our support. We were even interviewed by Channel 4, and though our lovely mugs didn’t make it on the evening news, we did make it to print! It looks like Governor Patrick has since reversed the proposed changes and for the time being, EI services will remain as they are. Success! Sylvie’s EI service coordinator has started a support page on Facebook, which is a great way to stay current on the situation EI as well as read some very inspiring EI success stories.  Check it out!

And while we’d love to stay in the safety net of EI forever, once Sylvie turns 3, her education becomes the responsibility of the Arlington Public Schools. So we’re also beginning the process of meeting with school administrators to determine how her needs will best be met by the school system. Arlington recently opened Footprints, an early childhood classroom for kids specifically on the Spectrum, so that may be the best fit for Sylvie. I’m looking forward to visiting the various rooms myself, though, to get a better sense of where she’ll be most successful.

It’s definitely a rocky road most days. But on the days it all comes together, when she looks at me, smiles and says, “Hi Mom”, in that sweet little voice, or when she walks up to Matt and says, “I want Uh-oh!” (one of their games), all the frustration and stress just melts away and I know that in the end, we’ll all be okay. 🙂