Avery’s words

From a blog reader:
Can I ask you a personal question? Did Avery lose speech he had or did it seem like he was on the way to talking but then got stalled?    

You have shared on your blog that he doesn’t speak much which always made me wonder.  How does a child go from saying a full phrase like, ‘I love you’ to not speaking at all?  If that is what happened, who could blame you for thinking that kind speech might not happen again!  Glad Avery proved you wrong.  I’m sure the waiting and wondering were not easy. 

Wishing you more special moments, 
C.
And this was my reply:
Sure, ask away…
 
I liken Avery’s speech development to swiss cheese.  There are times when it seems as if we’re going good, he imitates sounds and is more vocal, but then there are times when it’s as if we’re starting from scratch.  I have no idea why this is.
And too, he’s never strung so many words together before (as he did when he sang, “Happy Birthday to you.” ) The “ahluvyou” was like a long word, or one word with many syllables.  It was rough, too, but recognizable.  Then, nothing.  For a long time, just one word sentences, and lots of signing.  Until this (the happy birthday song).
 
I really think there’s something going on in his brain, and  I hope researchers can figure out why its happening.  He understands everything, completely, but somewhere in the getting-the-words-out stage, it all gets lost.  I now have the opinion that maybe many of the people with DS who have been diagnosed with learning disabilities are maybe just nonverbal, and they tested poorly as a result. 
 
With Avery, I’ve been down this road before, the doubt-filled road, the worry road, when I was obsessed with his not-walking.  And of course, he did learn, in his own time.  He’s in fact hopping, and climbing, and running, and doing all the things you’d expect a 5-year-old to do.  Not only did he walk, he made up for any “lost” time, too.

So we keep trying different things regarding his speech, and will always keep trying, and it’s my hope that he will achieve the language we hope for him, in his own time.  But his Happy Birthday song was soooo heartening.  It was like a little glimpse into the future, of a day when Avery can talk to us all the time.

xo

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14 thoughts on “Avery’s words

  1. This is our big area of struggle with The Biscuit as well. Which is sad because pre-mommyhood I was a sign language interpreter and could wax poetic on why speaking and English specifically are horrible and the glories of a 3-D language like ASL. Now I just want someone to call me Mom, Mama, Mommy, Ma; something other than “AAAAH!” Our daughter seems to think that there’s nothing wrong with her big brother and follows his footsteps when it comes to speaking — which means she doesn’t much. Sigh. It’s only been 3 years. Everyone tells me that some day I’ll be sorry I wished for them to talk to me. Bring on the sorry, I say!

    I’ve been away for a long time, but I’m back now. I finally got a copy of your book (after a pre-order snafu — we moved and the post office sent it back) and read it in 2 sittings. I’ve already reviewed it on Amazon and am working up a post on my blog. I tell ya, I love it as much as I loved “Gifts” and that’s saying a lot. Our local parent group is just starting up a New Parent Outreach committee and these 2 books are at the top of my suggestion list. My plan is to have a lot of doctors offices and hospitals tired of looking at my face bringing them copies.

  2. Thank you all for sharing your thoughts in this area. I have an almost 11 month old and maybe I’m just worrying early but I feel like our ST has sort of given up on her. Maybe it’s just me though.

    Maya only says daadaa and not as often as she used to. I’m trying to find more info to help her. so anything that anyone can put out there would be most appreciated. I have been incorporating signing also but she has not picked it up yet.

    Just reading all of your comments helps me feel better and hopeful that Maya will do things in her own time. I guess I just need to have some patience. =)

  3. What a great discussion. Speech (and using his hands) are Max’s main challenges. We are so grateful he has any words, because we were told he probably wouldn’t. He is apraxia, amongst other challenges—even when he is able to try to get out words (which is complicated by muscle challenges)—the right signals don’t go from his head to his mouth.

    I celebrate his speech word by word, and am grateful for every new one. We have a speech communication device now, a Dynavox, which we expect to open up worlds for him. We’re not concerned it’ll make him not want to speak—we think it’ll only encourage him.

  4. Oh, thank you for this discussion!

    Speech is our biggest deficit too and I have been wondering where the hang up is for her. This is the area of DS that is the hardest for me right now. Probably because she is doing SO well in every other area, it makes her speech so glaringly behind. I know there are different forms of communication, but I long for the day when she just talks…
    I wish I knew what to do to help her.

    We HAVE discovered though, with the help of her ST, that she is a LOT smarter than we were giving her credit for! She knows a lot though she doesn’t say “words.” So I am trying to acknowledge her receptive language skills better as a parent and learning to hold on to hope for longer than I like. My “time frame” isn’t the same as hers. 🙂

    There are days when I can, like hannah m, just “relax and enjoy the moment;” but on many others, I am concerned about how we will ever get past this obstacle.

    Niksmom said, “Help your child find a way of communicating that is effective and let them develop from there.” Do you all have ideas for doing this? What methods have you found to be helpful? At what age did you child seem to grasp the potential of signing in communicating – when did they really start to take interest in learning new ones in order to be able to communicate their wants?

    Your comments are usually so heartening and I read through them for glimpses into what is to come and for encouragemnet for what is now. Thank you all for your discussion. 🙂

    Mylie’s mom

  5. Thank you for sharing this about your Avery, Jennifer. For the first year of my Vivian’s life, she didn’t babble or squeal much (she has hearing loss as part of CHARGE diagnosis) or do many of the “typical” communication milestones.

    When she was about a year old, she was REALLY into pointing – to everything: toys, people, trees, birds. I told my husband “I don’t know why exactly, but pointing is one of my favorite things that Viv does.” To which he replied “Well, it’s her strongest form of communication, isn’t it?” And of course that was why I loved it so much – Vivian was communicating to us about the world around her.

    Two days after I made that comment she started saying “dadadada” then “nananana” and within a week she had expressed her first ASL sign (milk).

    When I worry (because I do) I remind myself that Viv is communicating. Like your Avery, she’s experiencing the world and telling us about it in her own way and in her own time. And that relaxes me and reminds me to enjoy this moment – the one where she’s pointing enthusiastically for some book or toy – and together we’ll figure it out.

  6. They are so amazing, are they not?! I can see so much thought and understanding in my son Sean, but also see the struggle to get his words out. Like others have said, he is the master of expressing himself in ways other than words.

    I’m just holding on to paitence.

  7. Avery IS communicating, that’s the most important thing!!!. I know in my heart that Avery is a smart boy that “knows” what he is doing, he will do what he has to do when he is ready and you know that too. Avery just by BEING himself is loved so deeply by all of you and that LOVE will continue to help him overcome any challenge. Avery will keep showing everyone all he is CAPABLE of doing and he will continue to give all of you the best surprises. Jennifer, soon Avery will be talking to all of you all the time, just like he did when he learned to walk. Everything is going to be OK ~

  8. oops, wanted to add this:

    I think it’s a waste of anyone’s time to fret and stew over the “what if’s” in terms of spoken communication. The greatest disservice we can do to our children is to make spoken language the most important thing. Help your child find a way of communicating that is effective and let them develop from there.

    There are many people who can speak but for whom the sheer energy it takes to process and form the sounds is exhausting. There may be any number of reasons a person might not speak at all or speak much.

  9. Yes, yes, yes! I aboslutely agree with your thinking that our non-verbal children get short shrift and sold out because of the lack of appropriate methods of measuring their knowledge. That’s one of the things I think which pushed me over the edge to take Nik out of school; it seemed no matter what we did, there would never be a way to measure his true skills and intellect. And yet, he shows it every single day.

  10. Yes, Nick is a bit more than a year older than Avery and shows many similarities. He’s starting to use 3 and 4 word sentences but will use one word, or sign or even one syllable of a word if he can get his point across. But, he understands everything and demonstrates it daily.

    The other area that is so interesting in demonstrating his deficits is numbers. He knows all his letters, can name them, tell you the sound they make and even words that start with the letter. But he can’t count, shows no interest in numbers, can’t name the numbers or point to them, if you ask him.

  11. Aaron is the same age as Avery. He’s the master of the one or two word sentences. He finds that’s all he really needs to communicate. He’d rather say, ‘chocolate milk’ (that sounds like chakmilk) than ‘I want some chocolate milk please’. I personally think he’s smart and realized that he has these ‘work arounds’ so he doesn’t have to use a lot of words – which is hard for him. He’d rather communicate through non-verbal and one or two words…

    I agree that speech is our number one issue too. But as I’ve learned over the years, there are many different ways to communicate other than the verbal word.

  12. Paige has very, very few spoken words too. And her words come and go too…only a few of them have been steadfast in her vocabulary.

    I agree with you, I think that sometimes when speech is difficult, we often mistakenly think our kids are a bit more behind than they actually are.

    Even without speech, Paige knows all of her colours, all of the letters of the alphabet, and can easily sight read well over 100 words. She loves books and words.

    Don’t let anyone tell you Avery won’t read until he speaks – we are living proof that is not true! There can be great differences between receptive language and spoken language.

    “I love you” in our house is “I-ub” 😉

  13. Words. They don’t come easily around here either. There are those crystal clear moments when it’s like turning a corner expecting to find a glorious rainbow on the other side (complete with magical leprechaun) only to realize your about to step into a mud puddle.

    One moment those words are there and the next they are gone. The long strings of sing-song-y syllables are by and large the most communicative of the communicating in E’s vocabulary. Real words, spoken with any clarity…. pop up randomly and disappear just as quickly and unexpectedly as they had appeared.

    Speech is by and large the biggest struggle my E faces. I can certainly relate.

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