Wednesday, August 22, 2012

More Talky-talky

Oh, hello there Internet!

[blah, blah, blah - insert various excuses for not writing]

I was going to do one more post on the NDSC conference though a full month has now passed & my memory is for shit so let's call this a segue....

One of the sessions I attended was on speech, including the distinction between communication, language, & speech.  Talking, as it turns out, is an incredibly complex and difficult skill to master.  Awesome!

My daughter communicates her frustration by yelling, her need for attention by holding up her arms for a hug, and her happiness by laughing.  I communicate my love for her with kisses, snuggles, and the occasional fresh produce purchase so as to keep her healthy.  Children cannot live on chicken nuggets alone.

Language includes the concept of naming things (this is a "blog", not a !@#$%^&*  - though there's a joke in there about my foul language - of which there will be much in this post), the form of language (written/verbal, physical (ASL), english/spanish, PECs, etc.), and expressive vs. receptive.

The Girl's primary expressive language is sign - she can use her hands to request various foods & beverages, and to identify a menagerie of animal, activities (biking, swimming, playing), body parts, family members, and dogs.  She knows the little dog's name is Moose, even though he's a dog, AND can still identify an actual moose in book.  I find that quite clever.  I've lost count but we're well over 100 words.

Her receptive language skills are in english and ASL.  She understands a LOT and can pick the words "ice cream" out of a conversation behind closed doors.

She has no verbal expressive skills.  None.  Matt will argue with me about this & I'll concede I have heard her say something that sorta kinda sounds like "Daddy".  Once.  And she said "monkey" one time in speech therapy clear as day.  She had word approximations - "buh" for bread, bath, & ball, "eeee" for eat, and "uhhh" for up.  But she has never said "Mommy".  It requires her full focus & attention to make a "mmm" sound and there's no transition into the "omm".  She just turned 4.

Though she's definitely not silent.  She babbles non-stop with tone & inflection.  She'll tell you long complicated stories in toddler-ese and then laugh at the punchline.  And, yes, we did have her hearing checked with an ABR (auditory brainstem response) - the input is there.

You need the desire to communicate and a language before you can talk.  Then speech becomes a physical activity. You need to coordinate your breathing, move your tongue & lips around and then move them into new positions for different sounds.  You need to be physically able to make these movements and then remember which positions belong to which sounds.

That seems to be the part we're hung up on.  I've heard a wide range of estimates on the average age kids with Ds start talking - we're on the far side of most of them.  One lady in the speech session at the conference said her pediatrician recommended her two year old be evaluated for apraxia because she only had 20 words.  TWO.  TWENTY.  BWAHAHAHAHahahahahahaha(whimper).

After The Girl's ABR, the audiologist suggested the next step was an apraxia evaluation and I had a bunch of conversations with her private SLP, the school's SLP, and anyone else who was unfortunate enough to be within earshot.  Both SLPs (gently) said they though her speech delay was cognitive and developmental and they were more/less really already working with her as if she had apraxia.  I dropped it.  What's the point of slapping another label on her?

Except her four year check up is coming up & I was thinking it might not hurt to ask for a referral.  I queried facebook, wondering if anything magical happens after we get a diagnosis (surprisingly, no).  I selfishly thought about the fees and copays, and taking ANOTHER day off work to sit in a neurologist's waiting room.  I wondered if the school would use that label to argue against inclusion in a year or two when she goes to kindergarten.  No crushing immediate need to make a decision though.

And then, today.  We were stuck in Denver airport (different post!) and missed The Girl's back to school night last week.  Matt drove her in the first day but today was the first chance I was able to meet her teacher.  She's...young.  She knows NO signs.  None.  So when my girl correctly signs horse or signs purple instead of red, she will get ZERO reinforcement or correction.  Excuse me, but then WHATISTHEFUCKINGPOINT?

I cornered the SLP in the hallway and expressed my, um, concerns as to how her school days are going since my girl is now effectively mute.  The SLP, who does have a background in sign, asked if we had considered an iPad or PECs system, "since most people don't sign".  Well, fuckity-fuck-fuck.  We have been doing in wrong.  I left the building nearly in tears.

I don't know what to do.  The Girl loves her Signing Time DVDs and is picking it up faster than I am.  I think the physical movements involved is a terrific mnemonic to build language.  It's easy, free, & mobile.  At the grocery store today, for example, she spontaneously signed 'pasta'.  We talked about the red, green, & purple grapes.  I have a signing app on my phone and looked up tomato, since I couldn't remember...  when I signed tomato later at dinner she got it, right away.

The downside:  her fine motor skills are not great (upside:  what greater way to work on them?).  A lot of her ASL has to be taken in context.  And, as the SLP noted, a lot of people don't sign.  Including her entire extended family.

An ipad/PECs/proloquo could fix that.  It might build on her pointing/selecting skills.  I'm assuming there are words to go with the pictures so it could help her learn to sight read.  It might also be enormously frustrating for her to make those choices and to transition to a new system when all she wants is a goddamn glass of milk.  I don't really see us hauling an ipad around a grocery store or the park, & certainly not at dinner near the aforementioned dangerously spill-able milk.  iPads are REALLY expensive and she's going thru a lovely phase where she throws things.

I certainly don't think the ipad is a lesser choice but the ASL is working for us - working for her - and I'm pissed the school isn't supporting it.  I can request an IEP meeting but I'm not sure what to ask for yet.  New teacher?  An ASL para?  (this is pre-school - it's 12 hrs/week).  Ipad support?  If we are going to request modifications I feel like we should pursue the apraxia diagnosis as leverage.

Then again, this is pre-school and it's only 12 hours a week.  Her primary in day care, where she spends another 30 hours/week, signs beautifully.  A few people on FB said their kids' speech really took off between 4-6 so we might not be at crisis point yet - exceptionally long post notwithstanding.  I just don't know and don't want to screw it up.  This is HARD sometimes.