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.


  1. As a fellow lover of curse words, I loved this post.

    As a mom of a child not only with DS, but with a brain injury to boot, I have lots to say. Probably most of which you do not want me hijack your space with. But, with that said, in my humble and so not qualified experience, I agree with the consensus that what I have seen, that 4-6 age range is magic.

    Language tends to be a tough area for most all of our children and the fact that her receptive language is so fabulous, I do truly believe that with a little time, I think you will see her take off.

    Having a person who signs in the classroom with her, is huge to me. Unfortunately, most fairly new SLP's, are not required to know sign. which to me, for our children is too bad.

    so what have you learned from me? Nothing. I gave you nothing. but I am here and have some experience with all this and I have a 9 year old, typical, whatever that is anymore, who had severe apraxia as a little guy.

    So give me a shout out if you want to, if nothing else to chat and find out when you will be coming this way again.

    Glad you are back.

    1. And that email?? Did I miss it or did life have other ideas?

  2. Oh, Oh, Oh - LOVE this post. My little guy is 3 1/2 and we are in the same boat. He says one word - daddy. Rarely signs spontaneously. His SLP wants to throw the autism dual dx on him. Because he doesn't seem to even understand what communication is for. She said she can't dx apraxia because he doesn't say enough words, but he probably has that too. Awesome. She also told us to start using PECS, but I can't seem to get my butt organized enough to use the little cards I made up a month ago, because quite frankly, he'll just eat them if I have them posted where he can see them!

    1. How can she not dx apraxia if he's not talking? Isn't that the point? Or is it that she doesn't see him struggle to form words - which I guess would require intent? Sorry. This IS the hard stuff.

  3. You're back! You're back! You're back! Hurray! I'm so glad to read a post from you!

    And let me just say that I read the ASL words you beautifully incorporated into your post, and I'm with you. Right on, sister.

    Let me also say that I read those words because I've learned basic ASL. Why? Because Maybelle signed for a while. And ASL is a great thing to know because there are a lot of people who sign--who are deaf, or who need visual language cues. So I think it's ENTIRELY reasonable for a preschool teacher to learn some basic signs. Hell, watch some episodes of Signing Times, and you've got a great start.

    If her primary in day care signs beautifully, then I think you should continue with the signing. Your daughter is learning a completely legitimate language. It's OTHER PEOPLE's problem if they don't know it. I could put you in touch with some beautifully outraged Deaf folks who would be happy to reinforce that point.

    1. I should go away & come back more often if there's going to be that much enthusiasm! Missed you all. Catching up on my reader this weekend.

      I think I might give her our baby ST DVDs... we're mostly watching series one & just started in on series two. Will miss some of those songs though.

  4. The part about her signs having to be taken in context applies to speech too, not saying that changes anything though! Kayla had/has a lot of words, but when she started verbalizing most of the time people didn't know what she was saying unless they understood the context. Even know that sometimes still happens! I say continue with the signing because that is what is working for her.

    Can the teacher be given an ASL 'cheat sheet' and given a crash course on some of her most commonly used signs so she can reinforce them and know she is answering correctly to that color is purple? I'm sure you do this already - saying the sign as you sign it - and just let the teacher know to do that as well. I thought if ASL was the child's primary form of communication then it could/should be written in the IEP for an interpreter to help with that. As for PECS - something like I suggested earlier - have pictures of the signs for the classroom so everyone else can learn what she is signing as well.

    1. You're absolutely right - we do sign & say the word together. Simply teaching the teacher would be a positive constructive solution (vs. my quiet hissy fit of yesterday) and she did say she wanted to learn - but then I'm putting all our education eggs into whether or not she takes the time to. So: signing pictorials & I'll give her our Baby ST DVDs.... it's a start!

  5. I have nothing useful, really. Except to say that in the long run, she will be fine and you will be fine. We will all be fine. I am currently on my own mindfuckery train and I am trying to tell myself this, that my daughter is not going to end up living on the street illiterate and penniless if I make one wrong step.

    It sure does feel like it though.

    Anyway, enough projecting. If the teacher is on board with trying to learn some sign, I'd run with that. You're not asking her to become wildly fluent, just to try and work with your kid. Which, you know, ANY teacher should do with ANY kid in their room. Call an IEP meeting and have a chat with them all. I don't think you even have to know what you want to ask for, you can think of it as information-gathering. Tell them what you said here, you're worried about it and want to know what their plan is.

  6. Also throwing out that at our preschool, there are a few inclusion classrooms, and all the teachers use some sign, but there's one teacher who is totally fluent so they place kids who need it more with her. Are there any other teachers to choose from? beginning of the year, not a bad time to switch?

    1. Yep. Meeting in 1.5 weeks. We'll see what they say but I'm leaning toward requesting a switch or a para.

  7. Shouldn't the school be conforming to meet your daughter's needs instead of making her switch from her successful form of communication? I think I would push for an aide that signs if the teacher isn't picking it up...or switching to a teacher that knows some signs. IMHO, having her in a class where she is unable to communicate is not living up to the Least Restrictive Environment rule b/c she is being restricted in her ability to communicate since they aren't providing someone that speaks her language. If she only spoke spanish or french or swahili, they would have to find an interpreter--same thing with ASL! Fail on their part!

  8. You're back! Howdy stranger :) I really like this post. It seems that you are not alone for I have been reading a lot of blogs about the kiddos entering school and only communicating through sign. Our school system only uses the PEC method as an alternative form of communication. Whoopie. I shall see how this goes come mid-September when Ellie turns 3yo.

    Bear uses signs but they are very gross approximations. It is all taken in context as "on, pancake, hot dog, and help" all look the same as do "cow, horse, deer, donkey, and Dad" and she signs pink on her forehead. Ellie uses vowel sounds--ie "Eeeee" for eat, baby, bunny. Like you, I thought about an apraxia evaluation as it seems that the speech approach for apraxia works really well with kids with Ds. Our SLP said that Ellie has more of an oral planning issue and not apraxia, BUT using the Kaufman method and some PROMPT might help her. Maybe this is something Baby Girl's SLP can try with her?

    I am hopeful that Baby Girl's teacher will be receptive to watching a few of those Baby Signing Time videos. Seriously, our babysitter watched a Signing Time on PBS so that she would know a few signs. I did not even ask her to do that! At preschool, I just showed the teacher how Ellie signs eat, water, and help.

    Sorry to have hijacked your blog. I hope that the communication situation at school is worked out--I agree with the above commenter about LRE rule.

    anyway, I really hope that there is a language spurt at the 4-6 range. I am starting to feel desperate.

    1. You never hijack. Interestingly, our SLP is *not* a fan of prompt, which I didn't put on FB because there are a lot of really, really hard core fans & I didn't want to have to defend my SLP who I do think is doing a great job (the approximations HAVE been shooting up). I don't know enough about it right now to judge. So much to research!

  9. You can use most of the same software on an iPod Touch as an iPad and they are much less expensive. Plus, they are really durable and there are a lot of protective cases out there. Our 3-year-old daughter with DS has had her own first generation iPhone for almost two years. We have her music and a few games on it. It still works after being dropped or thrown across the room countless times.

    1. I have an iphone & will let her watch videos on it but I actually think she'd do better w/a bigger screen. Her fine motor skills aren't to the where she can negotiate those small spaces (I can barely manage!). Thanks for stopping by!

  10. Hello, I found your blog through Big Blueberry eyes, and I just have to comment.
    My girl who has Ds, and is now 8, was not diagnosed with apraxia (in Australia it is called dyspraxia and England I think call its apraxia but the terms still mean the same, letting you know so when you research you can look at both) anyway, it took my research to finally convince a speech pathologist to diagnose her with it, and the main diagnostic for apraxia is a child who does not/cannot repeat what you say to them.
    I had noticed my daughter could never repeat sounds or words. Other kids with Ds that we knew were doing this, but my daughter could not. It was so frustrating as speechis would give us activities to do, and I would tell them but she does not repeat the sounds, or even attempt to repeat.
    I finally (when she was 6) found an article by Elizabeth Kummins (I think - she works for DS Ed in the UK with Sue Buckley) and it had steps for diagnosing apraxia, and it also said 'apraxia is usually missed in kids with Ds because of their delayed language development, it is often mistaken as delay only'
    One of the steps in the article was - can your child repeat what you say to them? NO, my daughter does not!! She is only beginning to be able to repeat what we say to her now, and she is nearly 9.
    We have recently adopted a 2 yo boy with Ds, and he repeats everything we say, tries to copy everything....he clearly does not have apraxia, it is so clearly different it still frustrates me that no one picked it up in my daughter earlier.
    Sorry to rave!
    If you would like the article I can find it for you, please email me,
    cheers, jenni

  11. Not much to add to all of this excellence except- sign language is NEVER wasted. It enriches the brain, readies it for language in the brain even if nothing comes out of the mouth! It helps teach kids how to think with language- very important! All of the other things are good too- use it all. It's all great. As for the apraxia or not- there's the many parts to it- what does she get of language and communication (sounds good there), there's the planning, brain to mouth part (sounds like she has things to say her own way) and the motor part (planning, tone, skills). Anyway- what's important right now is what goes into that brain and access to a wide range of ways to express.
    2 bits....