Consider

So I’m pretty sure August is talking now–using words in appropriate situations. The things is, there’s a lot of “air” in his voice. I’m not sure how else to describe it. You know how people sing “Happy Birthday, Mr. President” in the breathless voice to imitate Marilyn Monroe? Well, there’s a lot of that. The alphabet is “ah, bah, sah, dah, eh, ef, hee.”

I describe this to Charlie’s PT, who we adore, and she says, “that’s low muscle tone–you see that a lot with stroke victims.”

And, uh. Oh?

I knew August had low tone when he was baby–it’s common in kids who were preemies and I wasn’t at all surprised considering how tiny he was at birth. It didn’t occur to me that it was an issue that could have far-reaching effects–I mean, he can walk and run, and I just assumed that if you could do that then you had enough tone to get by.

I think this would also be a good time to point out that it was Charlie’s therapist who mentioned this. Charlie’s. Not one of the four specialists who works with August.

Sigh.

I really love the therapists in our life. I do, but I feel like they’re sold on the “August has autism” theory to the point where maybe they can’t see anything else. I mean, low tone? LOW TONE? This is my area! I have done wonders with tone–I have an arsenal of ideas and activities and not one person has mentioned he has low tone.

I asked the boy’s instructor about low tone and she said, “He does have low tone! I just noticed that–he’s very good at compensating, though.”

I could go on and on about all the little things he does that are probably because of low tone–it’s like a million little pieces coming together into a clear picture. Bouncing or jumping when he’s trying to increase his volume, a tendency to watch rather than join it, his easy frustration with motor tasks. . . it goes on and on.

I’m still sifting through this new discovery. Still trying to put together what it means and how I best help August.

It’s a lot to consider.

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Comments

  1. We’ve been told that low tone doesn’t really get better with time, you just learn to compensate better (with strength and what-not).

    But I get the “why hasn’t anyone said anything” part too – we’ve argued with all of Bethany’s docs about her long list of issues….and it took a second opinion (with Alex’s PM&R, who is amazing) to get someone to agree that I’m not crazy, she has tone issues, and one sided weakness, and that the little spot on her tailbone ought to be investigated, because gee, she wouldn’t bear weight on her legs at all until she was 18 months old…..

    • When you have a kid with CP, you read a lot about tone. I have my own opinions of it, which I know are alternative, but I believe there are ways to address it. I’m working on them now! Just hate to think of all the time I lost not knowing.

      I’m sorry it took so long for you to get Bethany’s issues addressed–some days it feels like no one wants to listen to mom.

  2. Is low tone the same as poor breath support? I ask b/c Once E started talking (at 2.5 years) it was one word/syllable per breath, almost like she had a hard time finishing each sound. She has “classic” spastic diplegic CP, which includes a low-tone core. Her speech took off like a rocket after a few months. (All from a kid that everyone assumed was deaf, b/c she hardly made any sounds for so long.). I hate to admit it, but song-along TV/CDs made a world of difference for us! Sesame Street and Barney…gotta love ’em!

    • I think it is the same. Well, I think the low muscle tone is causing the poor breath support. I love the idea of some sing-along DVDs and CDs–I have a feeling I’ll be buying some very soon!

  3. My Luke has weak mouth mussels, not sure if this is the same as low tone or not. He was born with a bilateral cleft lip and a bilateral cleft palate. Both the lip and palate have been repaired, but he still needs a bone graft and two fistulas repaired. So it could be due to that. He spent his first 27 months in an orphanage where he didn’t get much food that he had to “chew” (he was 22 lbs at 27-months!) It could be related to that. And he has autism and is none verbal. Again, it could be related to that. Turned out he didn’t even know how to chew in a circle and use his tongue to move the food. He is 10 now and has been in feeding and sensory therapy for over 3 years. He is eating a little better (still too much mac ‘n cheese for me!) and is starting to approximate some words (yes, no, uhuh).

    At the same time, there are kids out there that just don’t have a strong mouth.

    Wish I had some wise words. You could get an OT feeding type eval. But it might not show anything and it yet another appointment. Based on what you have shared, this seems like a little over-kill to me.

    One thing that has helped Luke is his hippotherapy. He will talk when he is on his horse (trot, go, walk on).

    • It’s weird, but I don’t think the problem is really with his mouth–it more with his chest/trunk. It’s like he doesn’t get a lot of air in, so he can’t say much. Or when he does talk, it’s very faint and hard to hear.

  4. Don’t you love/hate when you have that “duh” moment? My own son (he’s 34 now, yikes!) has low tone and it affects so much of his life. I knew it would when I figured out what he had when he was a baby, but I don’t think I realized all the ramifications until years later. My second child was very shy and slow to speak to anyone but me. I found out years later that she had ADD. She didn’t like to speak when she didn’t know what was going on, had fears of making a fool of herself. Sorry for rambling :).
    Lisa

  5. Hi,

    My son has low breath support also, and low tone. We have a whole arsenal of tricks for this that have helped quite a bit. If you want any info, I can give you details. One thing that helped quite a bit was a simple pinwheel. Have him blow on it. With my son KC, this eventually gave him enough strength to do the spirometer and his breath support has increased quite a bit :) By the way, I can’t imagine how overwhelming this all must be. I hope the answers become more clear. I bet it feels frustrating to have learned so much about how to help Charlie only to have another kiddo who needs something completely different. Hope it gets easier soon :)

    Karen

  6. My son has low muscle tone as well – in his mouth especially- he actually got that diagnose before the autism one.
    He use to drool a lot but I discovered that his sugar in take affects how much that happens. So he gets no sugar from me.
    As you know exercise, swimming in particular helps a lot with this.