Monday, October 10, 2011

10/31 for 21 A Supernova of Sunshine

I don't think it'll be a surprise to anyone reading that I have morose streak.  Nothing requiring medication, just a dark side that I occasionally have to sate with my DVR, chocolate, carbs, and red wine.  Running helps, but that's not as fun as chocolate (though it does allow for more chocolate).  So when I call myself a little ray of sunshine, which I'll admit I am wont to do, it is with a massive sense of irony.  There is no irony in tonite's title. 


I haven't pulled together all my thoughts about the school post that I've been wanting to write.  Too many issues playing into it - our schedule, my girl's health issues, her signing, my signing, our absurd parental lapses, etc, etc, etc.  It was going to be a lot of logistics & not much fun to read.  So, instead of presenting this in a logical format, I think I'll dribble it out of a couple days.  After all, today is only Day #10.  There are 21 more days to go! 

One of the the things - actually THE THING - is that my daughter is non-verbal.  Still non-verbal. She has never called me mom.  She signs a LOT.  And she is picking up new signs faster and faster.  Faster, in fact, than I am.  I should take an ASL class.  I haven't.  Squeezing that in would be hard - not impossible, but not dropping-by-the-store-on-the-way-home easy.  Cue guilt.  Matt, much as I adore him (12 year anniversary this week!), is a glass half full kinda guy and thinks it will all magically work itself out.  Proof that opposites attract.  He has not been as enthusiastic about ASL as I've been (massive understatement).   Cue... something. 

And, in full disclosure, even I don't think she'll remain non-verbal.  She babbles, constantly.  She'll be completely quiet in her room but if I come in she lights up and starts telling me all her fantastic stories, in baby-speak.  She'll repeat sounds back -  she says "eeeee" when it's time to eat, or when I ask where her ear is, something approximating "zzzzz" when zipping up her PJs and I think her receptive language is oookkaaayy, but it's all at a very basic level. 

I saw a post today, courtesy of the 31 for 21 challenge (sorry, don't remember where), with a standard Ds developmental chart.  I'm long over comparing to typical kids, if I ever did, but we are now on the far end of speech for the *Ds* chart.  She only got 90 minutes a week of speech in her IEP.  We're clearly not doing enough at home, and I think she needs more at school.  I don't think the last year of speech therapy was effective (our first SLP was focused on the talking part and not so much ASL, feeding into Matt's aversion - I think the vocabulary needed to come first, the understanding that things have names and using them results in fun things like milk, dinner, and kisses).  Also, she's starting to get frustrated when we don't understand what she wants and I don't want her verbal skills to impact her behavior - but I'll save that for another night.

Anyway, seeing that chart snapped me to attention. I've been moping about, idly wondering how we're going to cover extra speech in near-Eeyore like fashion.  No.  WE ARE GOING TO FIX THIS RIGHT NOW.  So I called our health insurance provider, wondering what sorts of sadness merit speech therapy and who I'd have to bribe to get a "better" diagnosis.  (I won't share what I was prepared to do so you don't judge).  I was under the impression they wouldn't pay for it, because it's covered by the school, not a traumatic injury, some other reason dredged up from the murky depths of my half empty soul, but instead.... (sorry for all the caps) OH MY, HOLY $%^&*(%!!!! 

60 visits a year.  $20 copay.  No referral needed.  SIXTY VISITS A YEAR.  How many weeks in a year? Oh, that's right, LESS than 60!  That's 1.15 sessions/week.  We have been paying for the premium coverage but still felt dragged under by the bottomless annual family deductible(s).  This makes it all ok.  I'm not ashamed to tell you that after getting off the phone, there were great stomach-heaving silent sobs.  Luckily my office space is pretty private.  What a tremendous, tremendous relief. 

Also?  How much time did I just waste with my asinine assumptions?  A year.  Maybe a year and a half.  One third of her life.  !#$%^&*()%^  Guilt doesn't even begin to cover that. 

[Just to temper my giddiness, this won't be in home.  It won't even be within 20 miles of home.  We might even spend more in gas then we would have on private in home therapy, but a giant PFFFFTTTT to all that tonight.  Tonite? We dance!]


  1. Sweetie, hugs. She's 3 right? She is certainly as good at talking as my daughter was at that age. I know it's a worry because I know that some kids with DS have more difficulty with speech than others and some have none but you have to trust your instincts and if she is communicating than that is what counts the most. Does your SLP use visuals/cards for her to communicate with?

  2. Yup - the new one actually just sent me the link (busy bee?). (First SLP didn't do that either.) I really should listen to the internet more & the professionals less! :)

  3. I am so, so happy for you! I recognize that guilt. I've had it and still do. This whole ST thing has been a mess since we've moved. Finally, we'll get some through the school district starting tomorrow and then there's HOPE that we're moving up on somebody's waiting list for private (I'm on a million waiting lists).
    So, yeah, I get it. And I'm sure that our husbands could probably have a grand ole time asking each other for crackers and milk...and that's about it. Meanwhile, our kids are speaking in paragraphs that none of us can interpret. Yeesh.

  4. Yay for coverage by insurance!! We have been trying to get coverage for OT/feeding but no dice. She can't chew, but thats not apparently necessary. Ok then.

    And let me just say too... kudos on having 90 mins at school. That's the biggest number I have heard of in our area, even for non verbal kids up to almost 5. So it might be an odd thing to high five ya for, but I think its good!

    I look forward to hearing how the new experience is at the new place. :)