Uncharted Waters

Once, Charlie said his Feldenkrais practioner’s name: Evelyn.

Sometimes my husband and I will both know that he said “I love you” or “water.”

Yesterday I was sitting on a swing, singing with Charlie, when he said the last few lines of the song with me, “all through the town.”

When these moments occur, the words are never terrible clear–a garbled string of sounds–but with the context, we’re able to figure it out.

Despite Charlie’s challenges, I always thought that he would learn to talk the way regular children do–one word at a time. I thought that one day I’d record that first word for all of you here.  These days, I realize that’s not really the way it’s going to go. Things will be different with this little guy.  He’s “talking” to us more and more and yet. . . I usually don’t know what he’s saying. We communicate all day long, but not with words–with the cut of an eye, the turn of his head, or a reaching grasp. And let’s not forget the whining and the smiles–they speak volumes.

He’s not terribly interested in communication devices. He’ll use them for a bit, but there’s only so much you can do with four choices and with his other limitations, I’m not even sure how accessible these devices are. The lovely people at school are testing a variety of options, so we’ll see where that takes us.

It’s frustrating, but it’s encouraging too–this revelation has been coming to me slowly over the last few months. He talks. It’s weird to even write it, but it’s true. It’s not what you would recognize as speech and it’s not nearly as often as I would like, but it’s there. Now to figure out the next step–whatever it’s going to be.

boy smiling while doing a craft

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Comments

  1. I found the same thing with Loren. It was his lack of muscle tone more than anything else that stopped us from hearing what he was saying.

  2. Awwwww… Stephen “talks” the same way. It’s never been one word at a time, and he will NEVER repeat himself (which is SO annoying), even when I didn’t catch what he was trying to tell me the first time. He says phrases and sentences, garbled, yes, but we can usually figure it out. He won’t do it at school, though…

    Last night we were watching a cartoon, and at the beginning of the DVD (it was one my husband copied, shhhh! Don’t tell!), there was a picture of Stephen, and he screamed “MEEEEEE!!!!!!!!!!!!!!!!!!!!!” It was awesome.

    Charlie is making so much progress. I’m sure you are so proud of him, and congratulations for all of your hard work!

    • I love hearing that other kids talk like this–makes me feel less crazy.

      Charlie doesn’t do it at school yet either. He was doing it one day when we left school and they were all like, “he never does that around us!”

  3. yea charlie!

  4. Oh, man, am I with you on this one. It’s the same boat for us too. Understanding sounds/words in context is what we have going on… we get it because we know how to figure it out but noone else does. We know what Oia’s gestures mean and her sound effects but again, no one else does. Thankfully, school is beginning to evaluate her for some devices and we’ll see how that pans out. I’m just having a hard time wrapping my brain around a communication device when they seem to be anything but spontaneous and *right there* in the moment. Learning as we go…

    • Charlie has little patience for the communication devices. Maybe when he’s older and can understand the more complicated ones. Right now he finds them momentarily interesting and then moves on.

  5. Does he have enough muscle tone and control over his arms & hands to sign?

    • Charlie had a couple of signs when he was very tiny. Since then, he seems to dislike all the effort involved in signing. I think he really believes that he’s going to talk and this is one reason why he dislikes other forms of communication.

  6. This was like reading my own post just a few years ago. Jack’s language has been built in the exact same way! Now, at 7.5 years old he is speaking in nearly complete sentences. Most people still have a hard time understanding him but just this past summer Ive noticed even that is changing. It is a thrill beyond words and it continues to amaze me each and every day!! Charlie reminds me so very much of Jack and reading your posts truly feels like reading about Jack :)

    • I remember when I found you blog and immediately I felt like Jack and Charlie were dealing with the same issues. I love to hear that he’s still making progress at seven and half! We’ve still got lots of improvements ahead of us.

  7. What great progress Charlie has made! Enjoy every one of those words! And encourage, encourage, encourage!

    • We try! We’re always telling him, “I love your voice.” or “do you want to say anything else?” It’s hard, though, when we’re not really sure what he’s saying!

  8. Whatever manner he chooses, I believe he has the will to make himself known.

    You gotta catch some babble on video!

    I wish I had more of it from when Owen’s speech was emerging…

  9. I love this! And I just want to jump through the computer and bite that cute little dimple of his. This might be my favorite Charlie pic yet!!

  10. Yeah, it has been the same exact way for us. We are still there. I could have written this post. Emma talks in the exact same way. Her language started at about Charlie’s age, and it has slowly progressed. Emma just turned 7, and it keeps getting a tiny bit better all the time. She has many words now that are pretty easy to understand. Just in the past year, some of those words are being understood by others too. Emma and I still get many compliments on the “sounds” that she makes too–which seem to be longer or more complex mumbling like sentences. I really appreciated Angela’s perspective up there. I follow Jack too. He reminds me a lot of Emma. Of course, he is a bit further along on the motor front. Even though Emma is seven now, I still feel encouraged about the hope of continuing progress. I can never quite give up that she will make herself understood to all those that hear her one of these days. I just wish she would get more comfy with it around other people more often. Thanks for the post. Put some things in perspective for me. Big help!

  11. Oh my! That’s such exciting news, brings tears to my eyes! GEAUX CHARLIE!!!

  12. He is an amazing child. And has come so far … You know, I’d love for those doctors that said he didn’t have a chance to see him. Serve them up a little crow!
    Go Charlie Go!!!

  13. I conpletely understand what you mean! Emily babbles a lot too and lately I have started to think she is saying words (maybe she has been doing that for a while and I just didn’t catch on). Sometimes it is a guess but the other day, she definitely was repeating after me (she did it 2 or 3 times). I have been calling her “baby girl” since she was born. I was saying it the other day and she distinctly said “ga” after I said girl. Since she repeated it, I know it was not a fluke! I always joke that if she could talk she would probably talk nonstop – she is that kind of girl! That would be music to my ears.

    I am so excited about this new development for Charlie. He is so smart and of course, adorable as ever! I absolutely love that picture of Charlie. I can barely stand all that cuteness!

  14. Kobi’s story is a long one but… Although she uses ASL, her language ability is very low. She tries to “talk” verbally and she mostly just strings sounds together. What is so cutemis that she can mimic the expressions of hearing people so well. It is so funny and mask me rethink my expressions – facial, body, eyes alone, hands etc.

  15. My goodness how you have grown young man!!! Its so lovely to see your beautiful little face again! And a chatterbox too : you must certainly have some Irish blood in you! Well done Charlie boy, you are making great progress!

  16. GEAUX Charlie, indeed!

    yay!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

  17. This story truly makes me want to cry. Such great news glad to see he is communicating in his own way. Its truly special to see it happen especially the expressiveness you can find in the eyes or just a touch, its mindblowing.

  18. Wow! That is fantastic! I know you said that his teachers are testing out options to help with communication. Since you mentioned that he is not interested in devices I wanted to throw out one option… PECS (Picture Exchange Communication System). I have used it successfully with many children. We would created a binder with all the words/pics necessary for the day and they were able to communicate with teachers therapists throughout the school. If the student showed a picture of water…anyone knows that they want water. Not everyone knows signs or can interpret verbalizations. It also made it easier to transition to a device once they were older and had too many words for a binder. If you want more info on this let me know! I’d be glad to talk to you!