Journey to the Center of Sylvie’s Brain

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You down wit’ PDD? Yeah you know me! July 23, 2009

Filed under: LADDERS,PDD Diagnosis — janaquinn @ 1:20 am

Okay, so it’s not exactly a laughing matter, but it’s common knowledge that I rely on humor (many times too heavily) in times of stress. Why should now be any different? Sylvie’s official diagnosis at LADDERS revealed what we’d been suspecting for a few months now: PDD-NOS.  While it’s been pretty intense to get the official diagnosis, there’s also a bit of relief and validation in knowing that we were right about Sylvie.  We’ve had some time to process this new information and make our peace with it, and for the last few weeks, I’ve been putting on my thinking cap during nap times and sifting through the mountain of paperwork and therapy options before me.  After several weeks of phone calls, voice mails, insurance referrals and a little bit of begging and pleading on my part, Sylvie’s new and improved therapy schedule is now in place. We’re beginning the new treatment regimen this week, which includes an hour of speech therapy, an hour of OT, and approximately 7 hours of ABA therapy, all in addition to her current sessions with her developmental specialist. The ABA sessions will hopefully go up to 10-15 hours per week as Sylvie gets used to this more rigorous therapy session. I’m excited about Milestones, the service provider we’ve chosen, since they offer several treatment methods and can tailor their therapies to best meet the needs and strengths of each kid. They also offer a “practice preschool” that children can attend with their therapist, which provides them a chance to apply skills they’re learning in a setting outside of home. Sylvie will start attending that once a week in the next month or so… practice preschool…  sob.

In the meanwhile, we’ve also scheduled (at the recommendation of Sylvie’s developmental pediatrician) more thorough neurological, speech and OT evaluations to make sure we’re not missing any key pieces of information as we proceed with her therapies. Oh, and she has a follow up with her ophthalmologist as well…  poor kid’s not even two and she has a medical team the size of the Pats’ offensive line. I should note- one of the upsides of all this coordination is that it doesn’t leave me too much time to get inside my own head… I have a feeling if I had a few days to just sit and think about all this, I’d end up in a very dark place. I know Sylvie’s going to be okay, but there’s just SO many questions dancing around in my head now- questions, that for some reason, weren’t there before. It’s funny- she’s still the same kid she was before her diagnosis, but now I think about her future in terms of LIVING WITH AUTISM, and it freaks me out. Funny how my brain likes to mess with me. Maybe it’ll get better with time. Who knows. Like I said, though- I’ve got too many appointments to make to really think about it too much. Thank God.

All in all, though, she’s doing great. She has days where she astounds and amazes us, and days where she frustrates and infuriates us…  just like a typical not-quite-two-year-old, I suppose!  I’m just looking forward to finalizing all these appointments and therapy schedules so I can move on to much more urgent matters… that’s right-  her birthday party. Can’t believe baby girl’s gonna be TWO!!!

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Tentative Diagnosis June 23, 2009

Filed under: LADDERS,PDD Diagnosis — janaquinn @ 11:13 am

Sylvie’s evaluation with Dr. McCormack was yesterday at LADDERS, and like expected, it looks like her diagnosis will be PDD-NOS. It’s a very confusing wave of emotions I’m feeling… sadness, validation, anxiety, even some relief that the doctor didn’t feel her delays qualified her for a full-blown Autism diagnosis (at least not at this time.) We meet with the Doctor again next week to get the official diagnosis and should receive her formal report a week or two after that. I guess that’s when the real fun will begin… in the meanwhile, I’m going to try and focus on all the things we have working to our advantage: identifying it early, her (relatively) good social skills, and the fact that she’s got more support than she knows!