Monday, November 28, 2011

The week that nightmares are made of

Last night I had nightmares.  Nightmare(s)-plural.  All of them directly correlate to stressful events on the horizon (well, honestly, one might have been related to the Dexter episode that I watched right before going to bed). But mostly they are due to the week ahead.

The week's itinerary

Today: Most of the day was spent trying to clean and restore order, which is apparently unmaintainable when we have a week of vacation.  This afternoon Maya got two fingers caught in the elevator door (to be fair, this wasn't a planned event, but it caused an hour of chaos, nonetheless).  Then came the return of our EI speech therapist (who we will be seeing once a week---very exciting---and I'll have to write about the re-balancing sometime soon). 

Tomorrow: More organizing (yeah, we're that messy), cleaning out old toys & clothes, donation trip to Goodwill, then draggin the Christmas stuff out of storage.  Also, trying to plan this year's holiday card.  (Yeesh--I wish last year's hadn't been so good.  I feel like the bar is set kind of high.)  Support group meeting in the evening (had to skip last time, can't do it again).

Wednesday: Dave &Maya are playing hooky so that we can go to Yale to meet with a new geneticist.  All new appointments are unsettling, but new geneticists are the worst.  At this point, the thought of them finding a diagnosis is more scary to me than the not knowing.  This trip has the potential to link us to a interesting team . . . but I'm getting ahead of myself.  We'll have to wait and see.  But I'm feeling nervous.  (Also, bailed on book club, because it's just not going to happen after we arrive back, physically and emotionall wiped out, from CT)

Thursday:  I start my new job.  In the future, most of my working hours will be logged from home, but I need to be in the office a bit this week and next week to train on the system I'll be using.  (It's academic work for a grad school, drawing on my teaching experience.)  I haven't started a new job in 8 years.  And I'm not really a people person.  So, a little nervous.  (Also, bailed on "Parent's Night Out" with the folks from Maya's class this evening, because I will be beyond frazzled.)

Friday: Maya's asstistive tech re-evaluation at school.  Ugh.  She's had the TechSpeak at school for a month, and is doing well with it.  Now the DOE people will decide whether she should stick with that, or get a Dynvaox Maestro (which seems to be their high tech device of choice).  I don't even know what I want to happen here . . .
  • if they want her to stick with the low tech device, she will outgrow it sometime soon. She already has to supplement heavily with the Word Book, because the Tech Speak just can't hold all of her words. However, at least it's familiar to her right now.
  • if they give her a Maestro, then she loses what she's currently using (and is used to).  Also, now that I've met with the Dynavox and PRC people, I want to trial each one of their devices and figure out which is the best fit for Maya.  What if they give her a Maestro and a month from now (when I get around to training and trialing) I can see that they Vantage Lite is a better fit?  We can't keep switching systems on her, it's not fair.  (sigh)
So, that's the week.

In other, more interesting, news:
  • Last week's Thanksgiving post quickly becamse my fastest shared post ever (surpassing Amsterdam International with over 470 Facebook shares in less than a week).  It also generated the most page views that I've ever had in a day (2,051).  Pretty cool.
  • If you missed it over the weekend, check out the post from Sunday, in which you can see how Maya uses the Word Book.  If you're trying something similar at home, make sure to read the comments---there are a few good ideas there.  (And if you have any ideas to share, don't be shy.)
  • Go check out the 2011 Holiday Toy Guide for Kids with Special Needs, put together by Ellen over at Love That Max.  It's full of great ideas!  Plus, if you scroll about halfway down, you'll see a familiar face!  Hint: It's Maya :)

* I had to write this twice, because the internet ate it the first time around.  This draft is much more choppy and fragment filled, but it kind of matches my mental state anyway, so it's staying as is. 


Anonymous said...

Our daughter has RETT and we're recently going through some of the same battles. We've had the diagnosis just over 6 months and it came with relief but also a total loss of hope initially. Just wanted to share on ACC devices. We ALMOST purchased the Maestro but didn't b/c we opted to go with an eye gaze device. Ellie uses her hands but we were blown away with the ability she has using her eyes! We're buying the PRC EchoPoint2 with eye gaze. Maybe worth a trial!? Ellie can use her hands but her eyes are so much more accurate. It's about the same size as the maestro. Our blog is if you want more info. ~Angie

Annie said...

Hi. I hope my comments are't out of place here. I have a daughter who had expressive language delays but never dealt with what you are. However, I love your blog and wanted to make a few comments based on my very limited experience.

First, from watching your videos it seems abundently clear that you have a daughter whose cognitive abiltiies are very high. Very vey high. I understand she may not be hearing you perfetly and that just makes her ability to process what you are asking her and respond so rapidly all the more stunning. Her visual memory is almost shockingly high for any little kid. Not only her use of the word book shows this but that video where you had the letters taped to the wall and she knew as soon as you asked her for the letter approximately where it was in the alphabet and which side and part of th wall it would be on. My experience is that the therapists and the ones making decision deal with few kids with this high a level of cognition (she's sight reading at 3?!! and then can baby-sign within a millisecond the word you wrote...amazing. So you have your work cut out for you because you have to help the "experts" understand just how special your daughter's needs are. All moms think that their kid is a genius, but you might be right (she's clearly very very bright) and those experts need to understand that.

I hope this doesn't come off as obnoxious, but I am blown away by your daughter's skills and hope you get the help you need for her. She has amazing potential.