Down Syndrome/Speech

Speech, language development, and communication are notoriously huge issues with Down syndrome.  We did a short stint of Speech Therapy for Finn, and stopped because (a) it seemed like a huge waste of time, and (b) the State was changing its Early Intervention policies and requiring families to seek services through their health insurance carriers, and our health insurance carrier was going to require us to drive many miles away to obtain services for Finn.  I’ve had no regrets about stopping Speech Therapy – and all other EI services – for Finn.  I’m sure at some point when he’s older he will benefit from various interventive therapies, but in his baby/toddlerhood, he clearly benefits the most from living in a houseful of people who, although we all dote on him, pretty much treat him like anyone else.  He’s got a whole big family motivating him in the most natural manner possible, and I just can’t ask for anything better for him at this point.

This is not to say that I’m kidding myself about his developmental delays.  Is he behind his “typical” peers?  A resounding YES.  I’m aware of it, but I don’t spend a lot of time dwelling on it.  He’s happy and healthy and continues to make developmental strides on his own timeline, and I just feel pretty at peace with it all.  The only times I feel less than peaceful about it is when we are faced with third-party assessments and evaluations (coming up; we have the first of two assessments scheduled with the school district later this week as part of the transition process, and his first IEP later this month), and when I start comparing him to other kids around his age with Down syndrome.

And this is where the whole speech thing comes in.  I guess I am very unclear about how other parents assess where their child is at with regard to speech.  Since Finn’s birth almost three years ago, I’ve read dozens and dozens of blogs by other parents of children with Ds, and I’ve come across parents who are terribly distressed at their two-year-olds’ lack of language skills, and others who report word usage of up to 50, 60, even 70 words, and signing ability of up to 100 signs.

I’ll say flat out that Finn doesn’t say many words.  His vocabulary is thrilling to me, until I actually sat down yesterday and made a list of all the words I’m aware of that Finn can say:

Uh oh
I love you
Night night
Row row

But what really counts?

  • Do variations of the same word (“Mom” and “Mama”) count as one word or two?  To my way of thinking, it would count as two because it indicates an ability to grasp the concept of two different labels being applied to the same thing.  But maybe I’m wrong on this?
  • Do words only count that are used in the proper context?  It seems to me that merely repeating what he hears doesn’t mean anything unless he’s able to apply it properly.
  • What about words he says that probably only I can understand?  For instance, “Lilah” and “I love you” sound almost identical from Finn (they both sound like “Allah”; we joke that he’s converting to Muslim on us), but I know the difference.  It’s unlikely that anyone else would know the difference, though, or that anyone outside of our house would realize that “Allah” is even anything other than meaningless babble from him.  I guess I question this, too, because when I read on someone’s blog that their kid with Ds can say 50 words, do they mean their kid can say 50 words pronounced intelligibly and used in proper context?  Or do they just mean that their kid makes attempts to mimic up to 50 commonly used words that are not clearly enunciated and not necessarily used in proper context?

It seems to me that at the heart of it is cognition.  Does the kid understand what they’re saying and actually use the words to communicate?  A couple of weeks ago when Finn started stomping his foot and saying “Quiet,” very sternly when the dog was yapping, I was blown away.  He gets it.  He’s not just repeating something, he’s actually telling the dog to be quiet.  Or when he picks up his play phone and goes, “Hi . . . babble babble babble . . .” and then ends every phone call with, “Okay, bye,” I can almost see the gears turning in his head.

Not surprisingly, I think Finn understands a lot more than he’s able to communicate.  For instance, it’s interesting to me that at his age he’s still not saying “No,” but I am positive that he understands “no.”

I am a little bewildered by the whole sign language thing, too.  Finn knows very few signs just because we’ve never made a point of encouraging sign language as a mode of communication for him.  I don’t know if this is good or bad, and I’m certainly not questioning parents who do encourage signing – it’s just not where we’ve landed with Finn (despite, interestingly, the fact that Michael worked as a sign language interpreter for many years and is fluent in ASL), and we’re comfortable with it.  He appears to have the means and motivation to develop verbal language, and I guess we’re just very laid back about it.  Anyway, as far as signing goes, what really counts when parents say their kid can use 100 signs?  Do they mean the kid actually knows what each of those signs means and uses them properly and specifically to communicate?  Or do they just mean that their kid can sign “fish” because they’ve been taught the sign, but actually have no idea what a fish is?

I’d love some input.



12 Comments on “Down Syndrome/Speech”

  1. starrlife
    June 1, 2011 at 11:10 pm #

    Well. I’m no expert but I’ll stick my oar in. I’ve learned via Kayli the difference between language and speech. Speech is mostly about motor/muscle/tongue position/palate etc? Language is about words, comprehension of the idea that you can use words to communicate needs/ideas/events, ability to understand how words are used (semantics and grammar), concepts – in short, cognition? (this is my humble, simplistic version). There is strong evidence that sign language builds parts of the brain related to language that bypasses some of the areas that kids with some language delays have obstacles in. So for many kids it opens up the world of communication in a way that they would have to wait several years for otherwise.
    I always yearned to know what was going on in Kayli’s head and heart, how she saw the world and I felt from very young that she had indeed a lot of inner life and interest in communicating with others. We did use child signs through to K, not more than 20 or so words but they really worked well. I loved saying no and stop with my hands. It let her make requests independently to get basic needs met, ie eat, drink, go etc as well as working on I love you and being able to say it with pride of accomplishment. She could see other people communicating and she wanted in.
    She is 11 now and while she articulates individual sounds clearly, not fuzzy like some kids do, she stammers under stress (flow), she has difficulty with pacing her sentences (long rambling ones with many topics), she is difficult to completely understand when the other person has no context or doesn’t know her well but this improves considerably with each passing year. However, this does not stop her from raising her hand in every group activity and she does not get angry if she needs to repeat herself. many of her friends from pre-school will say- “I know what she says” and they do seem to understand her in a way others don’t!
    As for parent who push their kids with flash cards and measure the amount of words- can’t speak to that – didn’t/don’t do that. I agree with you about the rich environment being important. One thing I wish I had had was the Rachel Coleman Signing Times DVD’s at that point. Kayli would’ve loved them and I think they are fabulous.
    BTW- If you decided to do some sign let me know since I happen to have some of the DVD’s of Signing Times that I won in some giveaway and have been waiting for the right place to give them. Perhaps you can check her out of youtube and see if you like it?
    Hope that helped and not overwhelmed 🙂

  2. Lisa
    June 1, 2011 at 11:38 pm #

    A few things from my perspective…

    1. I think SLPs would say differently, but I think it says something that Finn uses both Mom and Mama… SLPs see that as progression of a single word (e.g., Mama to Mommy), but nonetheless, he’s using two different labels to refer to you. That counts in this mama’s (or should I say “bah bah”?) book 😉 Sheridan still struggles with “mama” and it usually comes out “bah bah” or sometimes “mbah bah” – but he can use the /m/ in other ways spontaneously. interesting 🙂

    2. Words that only you can understand definitely count! Most of Sheridan’s words are approximations and sound very similar to each other – only three people in this world understand him: me, Gary, and Becca (his sitter). But we know exactly what “bah bah” or “dah” means given the context. For example, I mentioned the name Luke in the store yesterday (we were buying a gift for Monica’s baby Luke) and immediately Sheridan started (loudly, I might add) saying “Goo” – that was his version of Luke. And every time he sees Luke’s gift on our kitchen table, he points and says “Gooooooooooo!” So, yeah, nobody else knows what he’s saying, but its a word (approximation) he uses to communicate. They count (and his SLP agrees). The downside, of course, that hardly anybody else understands.

    3. Sheridan has well over 200 signs – but we made that decision late (he was 2 by the time we finally broke down and did Signing Time). The tipping point for us was the cycle of frustration we experienced a couple of times. His frustration. He understands everything you say… but HE could barely say anything at all. He would get so frustrated because we didn’t understand what he was communicating to us. Imagine telling somebody something, clear as day in your mind, only to have them look at you blankly and not meet your needs. Increasing his signing vocab made a HUGE difference. That’s not to say we understand everything he says (sometimes we still stare blankly), but at least for our family signing has done amazing things to bridge the gap

    4. Sheridan says even more words than he signs, but again, most are approximations that few understand. The interesting thing is, you would never recognize the word “radio” when he says it, unless afterwords I told you, “he said ‘radio'” – you would take a second to reflect on what you heard him say and realize that, yeah, you could see how that was “radio” My point is: this all counts as communication and speech.

    5. As you know, my family falls in the “give us speech therapy” category 🙂 As soon as he started receiving therapy (now 2 x week) for apraxia it made a huge difference. So, I do believe that therapy can help… but it’s not the therapy in and of itself. 1-2 hours of therapy will do NOTHING for a child (any therapist worth their salt will tell you this straight up), it’s all about the follow through from the family. Finn has that “natural therapy” in your family because of who you ARE as a family. Fully including him. Giving him experiences. Talking to him all day long. Yes, Sheridan’s therapy gives him a good intensive session to work on some things that help speech development in people who have apraxia, but if I didn’t follow through none of it would matter (e.g., I talk to him about everything, I give him LOTS of experiences every day – he goes everywhere with me and we do all kinds of stuff as a family – and staying home to chill counts, too 🙂 – and I’m patient with his speech (I give him time to think about what I say, I wait patiently for him to respond, if he approximates a word I don’t “correct” him I just say it again so he can here it). In the end, I think Sheridan’s language/speech is blossoming (skyrocketting at times) because he does have therapy to support him, but mostly because he is naturally increasing his abilities. And one last thing on therapy: I have to admit that sometimes it’s hard, especially speech therapy. It’s the one therapy that is most difficult for him, and can be frustrating. I refuse to cross the line from play to tears. All therapies should be play-based… but at times speech is so hard for him he gets frustrated and doesn’t want to do it and you can see it’s close to crossing the line. So sometimes I’ll call part of the session and suggest we move on to something else… but I do struggle with that aspect of speech therapy.

    6. The coolest thing is, if the people most important to Finn understand him, that’s all that matters. And, his peers will understand him, too. Sheridan attends a Montessori school a few mornings a week and despite his speech/language delays, his classmates understand him. They communicate with him without any problems. Somehow they get it. Children blow my mind. His peers know he’s different. But that doesn’t change how they talk to him – they might not understand his signs (he’s the only child who signs in the class) and they don’t necessarily understand his speech, but somehow they still understand HIM. They initiate interactions with him, include him in their games, and they simply get each other. I have no idea how they do it. I just wish adults would get it, too.

    I’ve been meaning to post about this very issue for some time now… I guess I just did 😉 Sorry 🙂

    • Lisa
      June 1, 2011 at 11:49 pm #

      Don’t apologize! I value all of this! Thank you 🙂

  3. Lisa
    June 1, 2011 at 11:55 pm #

    By the way… I meant to say that Sheridan didn’t say “no” for the loooooongest time. A couple months ago it suddenly began flowing freely from his lips. Emphatically. It’s his favorite word. Gary and I long for the days when Sheridan didn’t say, “no.” But, you have other children so you know all about that 😉

  4. Heather
    June 2, 2011 at 4:56 am #

    Morgan was an early talker (for Ds) and had about 100 words when she turned 3. And I am a huge advocate of sign language. Morgan understood the signs and used them when she needed to communicate something to us when we couldn’t understand verbally. She only used them until she was about 5 but it’s funny, she’ll pull out a sign every once in a while when I’m not sure what she’s saying. Cracks me up that she still remembers the sign after 3 years of not using it. She’s got an incredible memory! Her speech is still only 4-5 word sentences and can be difficult to understand. I wish I would’ve implemented the talk tools (the straw and horn therapies) when she was younger but we are going to start the horn therapies now. Apparently it’s never too late. 🙂

  5. Addie
    June 2, 2011 at 1:32 pm #

    Starrlife, if Lisa doesnt want the videos, then Id be happy to have them!

    Well, I wont make a long comment since weve only had Wallace for 6 months now and coming from a country where English was only spoken as a 2nd language, he has a long way to go.

    Personally, at 6 years old, Wallace understands ALOT of English – it is amazing how much he has learned in just the 6 months that he has been here… but since he was in the hospital for the first 2 years of his life, he kind of missed out on that whole developmental stage of learning how to talk… and so therefore, is pretty non-verbal… besides just babbling like a baby would.

    Having that said, we consider it a huge accomplishment when he even mimics us correctly b/c we know that eventually he will get the meaning and understand how to use it… its a big step. Sometimes, we read books that incorporate the alphabet with the story, and on each page, we point out the letter and have him try to mimic us saying it…. this way, we have learned that he just cannot pronounce some letters.

    We dont push flashcards or whatever on him, but we do try to get him to practice his words as much as possible… like when he wants more food at dinner… he cant just hold up his plate (like he did with his foster family in Hong Kong)… he now has to actually say the word “more” and sign it as well – sometimes, he refuses, but we will ask him “do you want more?” (and sign more) and then he will copy us.

    This is imperative for us right now as he’s only been with us for a short period, we still arent super familiar with all of his mannerisms (things he doesnt do every day)… so in order to understand him, we need him to use his words – or just signs if he knows them.

    I think its great that Finn uses so many words – and in context! Thats amazing… hopefully we will get there soon too!

  6. Chrystal
    June 2, 2011 at 3:29 pm #

    Lisa L covered most of the same things that I was going to mention, but I had to jump in and say that M was way “late” in using “no” and “mine” but she has more than made up for it now. She’s downright rude sometimes and I almost enjoy it because I see that she’s moved into the next developmental phase.

    I stopped counting words long ago. It doesn’t go with the philosophy I’ve chosen for myself. And you know what I realized? It feels better. I’m pleasantly surprised when I’m proven wrong. For example, when we had the eval with SRJ six months ago, she asked how many words M knows. I said 30. About an hour later, she looked at me and was like, “Really? You think 30? She knows waaayyy more than that.” So, yay! I mean, it’s totally subjective as you’ve mentioned in this post. And at the end of the day, for me, it’s the communication that matters, not what someone else decides should count.

    • Lisa
      June 2, 2011 at 3:40 pm #

      “And at the end of the day, for me, it’s the communication that matters, not what someone else decides should count.” Thanks for this, Chrystal! This is where my heart is. It’s only when people start telling me what SHOULD matter that I get agitated 😦 And seeing that we have Finn’s first IEP-related assessment tomorrow, I’m pretty agitated at the moment.

  7. Chrystal
    June 2, 2011 at 5:13 pm #

    No, I totally get it. Even when you feel firm in your convictions, comfortable in the choices you’ve made for your kid, those damn meetings and assessments can get you rattled to the core. I can’t wait for the meeting to be over for you because after that you get to come home and resume life as you know it, where everyone treats Finn like Finn and not another case that they have to work.

    • Lisa
      June 2, 2011 at 5:32 pm #

      You DO get it. Spot on. Thank you.

  8. Stacey
    June 2, 2011 at 8:00 pm #

    (((HUGS))) I hope the IEP goes well.

    My ped says that a “word” is any particular sound that has a particular meaning every time the child uses it. So “mama” is nothing more than an interesting sound until it means you, and “fish” might be nothing more than a fun sound to make, or it could be baby’s word for the dog. Does that make sense? For a long time, Weston used the same “ahhh” sound to mean four different words (up & down, and on & off for lights) and it was only the inflection that made the difference. But we counted them as different words. And the bottom line isn’t how many words a child knows, but how much he can understand & communicate with the people in his life.

    I’m a big fan of baby signs, we used a lot of them with Tiven. I’m not sure it had anything to do with interest but more with ability, she seemed unable to make verbal speech, so we gave her different tools to communicate with. If Finn is interested in verbal speech, but having trouble with the motor skills part of it, then signing might be very helpful.

  9. Lisa
    June 2, 2011 at 9:09 pm #

    Chrystal’s post made me realize a couple things…

    1. we don’t know the actual count of sheridan’s words/signs – even his current SLP (or any other therapist for that matter) don’t care about the count. we are all on the same page looking for forward progress. In other words, we care that he is adding language and new speech sounds to his repertoire, and that he continues to improve in his ability to say various sounds (e.g., using my example from my first comment above, he would begin to use “mama” consistently instead of “bah bah”). The only reason we estimated his words/signs is simply because at this transition period all of a sudden people started asking us. So we just simply thought about how many episodes of Signing Time, for example, he can sign most/all of the words to. And he says (approximates) every word he signs and nowadays many new words he simply hears every day. So, we figure it’s more than 200… but we’ve never listed them out and we’ve never taken the count seriously. Like I said, forward progress is all that matters to us.

    2. This is an aside… but, Lisa, I just want you to know (I’m sure you already do) that you do NOT have to consent to all (or any) of the evaluations/assessments. Because we believe Sheridan would benefit from some support in fine motor skills and speech, we consented to the speech and OT eval. We did NOT consent to any of the cognitive testing, psycho motor, etc. assessments conducted by a school psychologist. It threw everyone in to a tizzy when I said we would consent to everything but those, but it’s out right. And I stuck to it. And they haven’t said boo since. I plan to write a post about it soon… but bottom line, we have no problem assessing Sheridan in areas that we feel are most important functionally in terms of his biggest challenges. I do have an issue with cognitive evals done by the school district where they are looking to “qualify” him for services under a label of “mental retardation.” He will qualify for what he needs: OT and speech. He doesn’t need invalid assessments (the district even admitted they are invalid at Sheridan’s age) for a label that does nothing more than label him. Gary and I feel strongly that it’s a matter of human dignity for Sheridan. He is a person who deserves dignity and does not require a label to function in society. In fact, research shows that the exact opposite happens when labels follow people… I will clarify that I think this is a personal decision. I don’t think it’s bad for other families to choose to have those evaluations. But it’s not right (from our perspective) for our own son. He deserves to be seen and treated as a whole person.

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