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.

Janey's Five Step Video Viewing Progression

Lately I've realized that Janey's viewing of movies and other videos follows a very strict sequence.  It's helping me understand some of her previously mysterious fits when watching videos.

Stage One---I put on something new for Janey, on Netflix or on VHS (we don't do DVDs for her much, as she very much likes to handle them, scratch them and lose them.  And VHSs are a dollar at our favorite thrift store, in terrific shape)  This might be a show or movie I'm pretty sure she'll love, something about a topic she likes or with characters she likes.  For an example, recently it was Toy Story.  She likes that type of computer animation, and the music seemed like something that would appeal to her.  However, no matter how perfect the match is, the first viewing is a disaster.  Janey will watch a bit, seemingly interested, and then get very upset and ask for something different.  I used to try to leave on the new video a bit longer, but now, I just take it out.

Stage Two---Two or three days go by.  I don't mention the video.  Then, out of the blue, Janey finds it.  She shows her ability to read in that one specific situation by always knowing her videos apart, even if there are no pictures.  I am not sure how she does it, but she does, even new ones.  It might be font, or letters, or who knows what, but she does.  She brings the video to me, or if it's Netflix, often finds it on her own and puts it on.  I don't mention her previous reaction, and neither does she.  She watches it eagerly and seems to love it.

Stage Three---the video goes into heavy rotation.  We watch, for example, Toy Story day and night.  Janey memorizes it, and says bits of dialogue at random times.  If there are songs, she learns them by heart.  The video is on her mind all the time.

Stage Four---Janey is still enjoying the video, but is starting to get upset while viewing it a bit more.  Sometimes, she starts crying during it, and we use our set phrase "If a video is making you sad, we turn it off".  She will accept that at first, but then obsessively ask for the video, watch it a bit, and then cry again.

Stage Five----The video completely freaks Janey out.  She is terrified of any even slightly scary parts.  This is true of videos you would not even picture having any scary parts, like Kipper or Sesame Street.  She still asks to watch it now and then, but then gets hysterical waiting for the scary parts to come on.  The video is added to the pile of unwatched shows.

I think it takes quite a few viewing for Janey to understand to some extent the plot of shows she watches.  Her initial enjoyment is just based on learning the dialogue and songs, and watching the images.  As she watches the show over and over, she starts to get it more, and characters like Ursula the Sea Witch in The Little Mermaid or Sid the Bad Kid Next Door in Toy Story come alive for her, and they are pretty scary.

I've learned a few things from figuring this all out.  One is that with much repetition, exact repetition of the kind that videos provide, Janey learns first to repeat the elements, and then actually learns what is going on.  It's her way of progressing with learning.  Other people might first watch for plot, and then get so familiar with the show they start to memorize it, but Janey does that backwards.  The other is that when Janey suddenly gets upset, in other contexts, it might be something she's heard or seen a lot of times before that has now clicked in as scary.  For example, she recently became nervous about sirens, after hearing them for years.  I think she finally connected them to the fast vehicles with flashing lights, and they are finally scary to her.

It's interesting that echolalia, or delayed echolalia, seem like vital step in Janey's understanding of the videos for content.  Maybe repeating the lines in her head allows her to work on understanding them.  I wish she'd not have to get scared after the understanding kicks in, or maybe I wish videos didn't all seem to have a bit scary parts.  But gradually, in small ways, I sometimes feel like I'm starting to get Janey.

The Bad McDonalds Trip

Yesterday was really something, but I am hoping perhaps it gave me some insight into Janey. I took her with me to two stores Christmas shopping. Usually she loves to shop, and I have tended to stay home too much with her in the morning before school, so I felt good about taking her out. She asked me at the second store "you want chicken nuggets?" which meant SHE wanted to go to McDonalds, and we have done that before and it's gone quite well. So we went there. I think the first problem was we couldn't sit where we did the 4 or so other times we have gone. Also, there were kids at the next table, nice kids but talkative and Janey kept hearing them. But who knows what really was happening---she kept getting more and more upset. Finally she crawled under the table to me, and just FREAKED OUT---started biting the back of the chair, the table, anything within reach, and then tried her hardest to bit me. I had to hold her coat between me and her mouth, and she bit so hard on the coat her lips was bleeding. I was truly a little scared. I knew I just had to get her out of there, and talked to her as calmly as I could and got her out as quickly as I could. She didn't say a word in the car, but as we got home, she said one of her longest statements "I heard a clicking sound, and the clicking sounded like BOOM! I heard a footprints sound". I really don't know if this was about the McDs, but I think it was---she heard some kind of clicking sound that sounded really loud to her, and maybe like someone was walking over to her. She kept repeating that same phrase many times. I tried of course to ask her more about it, but to no avail.

A long time ago I read a book, I think called "The Sound of a Miracle" about a girl diagnosed with autism that is "cured" by something I think is called auditory training. I thought it was pretty foolish, but now I do wonder how much sounds and extra-sensitive hearing affect Janey. I know William also has very sensitive hearing, and Tony sometimes too. And I know Janey is very bothered by things that sound wrong---songs sung in a silly way, and even things like a burb noise. A few nights ago she went crazy because I was singing "Away in a Manger" to her and said "The stars in the BRIGHT sky" instead of how I usually say it, "The Stars in the Sky". I really don't know what to do about this all, but I might try to do some more research. I know I think the expensive "training" the book talked about is a huge scam. I actually went years ago to a talk about it and was extremely underwhelmed.

Oh, well.