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Tuesday, March 12, 2013

Janey's sound

Janey has a signature sound.  I've mentioned it in the past.  It's hard to put into writing, but it's something along the lines of "AHHHHahhhAHHHHahahaAHHHH"  It's a loud sound, and not musical, although she is so often singing and very sweet sounding.  This sound, though, is guttural.  She makes it mostly when she's in movement, walking or running or jumping.  When she is watching a video or in the car, she doesn't make it.  It's like it's a motor that gets her moving.  She seems also to make it more in public than at home.  It can be used to locate her.  Often, in a store, Tony will walk around with Janey while I shop, and if I need to find them, I just listen for the sound.  At afterschool, when she has been called to the office to come home, I can hear her being brought to me by the sound.

 We are a fairly loud family.  My husband often sings or whistles to himself, and the boys and I joke about knowing he's on his way when we hear his whistle.  William plays guitar a very lot, and often carries his guitar around the house, so music announces his entrance.  When Freddy was little, he had a sweet hum he hummed while playing.  I don't think I have a sound, but maybe I do and don't realize it.  So Janey might come by her sound naturally.

I worry, though, about how the sound instantly signals something is odd about her.  If she was just walking with us, holding our hand, she might not seem much different than any 8 year old at first glance.  You'd figure out pretty quickly once you tried to talk to her that she was different, or once she started jumping or running, but you'd have the moment first of just seeing her as a "normal" kid.  The sound, though, make it apparent even before you actually see her that she is different.  As she gets older, I see reactions to it, people looking at her, and sometimes looking annoyed.

I have no idea how to keep Janey from making her sound.  It's not something I've seen addressed in anything I've read about autism.  I know I've heard a few other kids with various special needs that seemed to make noises, but none quite like Janey.  I doubt she has any awareness of what she sounds like.  I don't think it would be at all easy to stop her from making the sound while letting her understand that talking is okay.  There's no way to explain distinctions like that to her.  She simply wouldn't get it.

And does she need to stop?  Since she doesn't make it usually except when moving around, she is not doing it, I don't think, in class or at times that there isn't other noise around.  It's loud when outside, but other kids are yelling or talking loudly outside, and she's no louder than them.

I think the sound is not going anyplace.  It's part of her.  It's more my issue than hers, as is the case with so many things.  I wish she didn't make it, because it sounds weird.  That's the bottom line truth.  Maybe in some little way, I love the brief moments when she can pass as a typical kid, when people can see only a sweet, pretty little girl, and the sound stands in the way of those rare moments.  The sound isn't hurting her, it isn't hurting others, it's really a non-issue, but still, I admit, it bothers me.  I need to work on that, not her.


Sophie's Trains said...

Sophie does have a sound. A long, drawn out "iiiiiiiii" (as in Sid). Very monotone and deep, not a sound you'd expect to hear from a cherubic toddler. When she is running her path, making her sound and flapping her hands she seems very autistic to me. She makes it when she's excited and generally when stimming of some sort. For Sophie the sound and flapping seem to go together. I'm not too concerned about trying to eliminate the stimming yet (we got bigger fish to fry) . There are many schools of thought on this- some behavioural, some neurological... I can see how the sound can be frustrating.

mindy m. said...

My little guy has a sound, but it is not really terribly loud. I call it his "chirp" and have remarked, like you, that I know when his aide is bringing him to my at dismissal, because I hear him chirping.

Like Janey, he only chirps when moving, almost to the beat of his footsteps. It is one of the outwardly "different" things about him, and as he is getting older, more people notice him in public now.

I couldn't imagine stopping him from chirping, no more than I could stop him from blinking. Some things I know I cannot change about him, and I am not sure I should want to. It is part of who he is but it does make him stand out more.

Antti said...

You don't think it's a tic, do you? I would also like the people to see my son the way I see him, the way he is beyond his symptoms. It is always a joy when they do.

Bethany said...

Your honesty resonates with me in a way I find refreshing. As a mother to a child with Down syndrome as well as many autistic tendancies, I find comfort when reading your words that indeed I am not alone. I find so many, myself included, try so hard to have our children accepted that we only focus on the good, the easy when sharing with others. Thank you for being real - even when it's not easy. The noises, the stimming, the unusual gait, the spinning... Sometimes I wish they would just stop. But like you said, it's my issue. Thank you for articulating my secret thoughts. Today I feel less alone.

Suzanne said...

Bethany, your comment meant a lot to me! You have a great and kind perspective on why people focus on the good and the easy so much, something I hadn't really thought of---it being connected to the huge desire we all have for our kids to be accepted. I read through a lot of your blog just now---I love your writing, and you have a beautiful family! Thanks so much for reading and commenting.

mknecht24 said...

Lindsey has all kinds of noises. I hardly notice them anymore until someone starts staring. I saw a fellow autism mom in the store one day and her son started licking the light fixture column. I didn't think much of it until she said "I am so glad that I DON'T have to explain that behavior to you." That stuck with me because I so rarely meet people in public who just KNOW...who don't think twice when Lindsey acts "odd".