Déjà vu at the new school

Charlie visiting his new school; he'll start next week I picked up Charlie after school on Monday and we headed to the big autism center. We got there a bit before their school day there ends and the front desk told me that our school district has yet to send Charlie's health forms, immunization records, and a letter confirming his going there. I called Charlie's case manager while he and stood in the big circular hallway where the main office and the visitors' entrance is.

 And then a woman who was one of Charlie's first speech therapists in another New Jersey town walked up and said hi and held her hand up to her waist, indicating how tall Charlie had been when she'd first met him. She'd heard that a new student is starting at the center (Charlie) and mentioned that another speech therapist who also worked with Charlie in that New Jersey town and also privately in our house—-that this second speech therapist will be working with Charlie.


Déjà vu continued once we got to Charlie's classroom where one of the aides said "hi!" (Charlie and I had met him at the YMCA pool a couple of times). And then I looked at the one student in the room who was bouncing a big therapy ball and realized, he and Charlie had been in the same class in another New Jersey town. They hadn't always been the most happy with each other in those days, I recall; the other child has a twin brother and while they are fraternal twins, they resemble each other closely, and I used to wonder if Charlie found it disconcerting to be a in class with two children who looked almost alike. We already knew that the occupational therapist who worked with Charlie in our current school district is now at the big autism center, so it looks like he'll be among many familiar faces and I can't but think that this should be somewhat to Charlie's advantage.


Charlie himself was serious and held his body stiffly as we walked in the main hallway and looked at his new classroom. He was glad to get back into the white car and told me he wanted to get something to eat. It was only after that, and a bike ride with Jim (which was cut short because it got too dark), that Charlie's
lag set in. 

We were at the sushi counter in the supermarket and "Lost," which had been one of Charlie's favorite Coldplay songs on the iPod he threw away, had just come on. Before I knew it he was crying loudly and leaning over and flailing around. A woman who's an aide for autistic children came right over and an older man with a thick accent and Charlie was quickly calm with them and a supermarket worker standing by. Jim came as soon as I called him and we walked quietly through the store and headed home as I recalled something called muscicophobia.  This can take the form of musicogenic epilepsy, when a person's favorite song causes seizures. I'm not saying that hearing songs he once/still likes a lot causes neurological storms in Charlie, but we've been noticing a connection between Charlie hearing music he likes and "something" happening. Time to talk to the neurologist again.

Charlie used to listen to "Lost" over and over on his iPod. I can see why; the song had a mesmerizing effect and it's still stuck in my head. Frankly, I'm thinking that Charlie knew what he was doing not to have the iPod anymore—and without it, and thanks to the radio, there's a whole new world of music we've been listening to.

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Comments
18 Responses to “Déjà vu at the new school”
  1. emma says:

    Great about the familiar staff – should be a benefit!
    Strange about the music, but lots of things can easily become triggers for something (I was chatting with a friend yesterday about Dimitri’s sensitivity to smell, and the memory of it being able to cause retching, eg, seeing balloons on the TV). And music is so emotive.

  2. Arthur Golden says:

    Kristina,
    As I wrote to you on Ostober 29 and 30, 2009 – try Facilitated Communication (FC) NOW!
    I will not repeat my specific suggestions from less than two weeks ago, but it seems to me that Charlie is trying to tell you something and has no other way to effectively do so other than FC.
    Done in the quiet of your home, FC is often so simple and effective.
    PLEASE!
    Arthur Golden

  3. Rose says:

    That is something! ( I read about the musicophobia.) I also find it so interesting when you describe “behaviors” without attaching judgement to them.

  4. a parent says:

    We had a small wind-up music box that would play Scott Joplin’s “The Entertainer”. It always drew my son in to wind it up and play it, but then he would be sobbing profusely. There was no association with the music – the first time he heard this song was from the music box. I think the melancholy feeling that ragtime music has just got to him.
    My sone definitely has a strong connection to music – he hears chords and plays them on his keyboard, off-pitch singing isn’t well tolerated, music cuts through the loudest situations and crowds and words from songs are instantly memorized. I’m not sure what it means, but my guess is that the structure and sameness of music is very comforting to him, while the randomness of speech and people can be very frustrating.

  5. karen d says:

    I have been known to cry in the supermarket myself when a song comes on that reminds me of my childhood. I think in lots of ways, it’s really quite normal that music evokes such strong emotions in Charlie.
    I have such high hopes that the new school is going to be a really good spot for Charlie. xo

  6. karen d says:

    I have been known to cry in the supermarket myself when a song comes on that reminds me of my childhood. I think in lots of ways, it’s really quite normal that music evokes such strong emotions in Charlie.
    I have such high hopes that the new school is going to be a really good spot for Charlie. xo

  7. Jill says:

    Music affects some people very profoundly. Look at the big tough men weeping during the playing of the national anthem at a ball game sometime.
    And of course there’s “Gloomy Sunday,” the infamous suicide song. For awhile it was banned from the BBC because so many people killed themselves after listening to it.

  8. autismvox says:

    Thanks for the reminder, Arthur….
    Charlie has those Disney songs on right now; it’s the Mulan song which has a couple of strong references with me (how I would have killed to have seen a Disney movie with an Asian character when I was a kid…..)……yes, feeling a lot of things right now. And now, Meg from Hercules which of course makes me think of the Greeks. Ahem.
    @Rose, I’m striving to just describe “what is,” “what happened.” Thank you and thank you for your post about “neurological storms,” it’s been really on my mind.
    @a parent, that is really interesting about your son and “The Entertainer.” Charlie was really into this one early R & B CD, Louis Jordan, and then finally he “exploded” listening to it (that was last month) . I’ve wondered about him liking the Disney tunes now as, while some of them are a bit darker (like the start of “Out There,” which is playing right now as I type), they all have that upbeat lilt.

  9. Niksmom says:

    I’m thrilled that there will be familiar faces for Charlie to (re) connect with at his new school. And fascinated to hear what the neurologist has to say (if anything) about the music triggers. I see similar things w/Nik sometimes but at the opposite extreme…he gets SO excited he simply can’t function. Exhuberant and wildly endearing to see but a tad disconcerting, too.

  10. Niksmom says:

    I’m thrilled that there will be familiar faces for Charlie to (re) connect with at his new school. And fascinated to hear what the neurologist has to say (if anything) about the music triggers. I see similar things w/Nik sometimes but at the opposite extreme…he gets SO excited he simply can’t function. Exhuberant and wildly endearing to see but a tad disconcerting, too.

  11. Leila says:

    The reaction to the music could be either because songs are starting to annoy him, or because he misses them badly. What if he only threw the iPod away because it wasn’t working as expected? My son sometimes throws toys in the garbage when they are broken or missing a piece; he can’t stand when batteries die, and wants them changed immediately.

  12. Monica says:

    Disney songs often have very easy-to-understand lyrics, sung very clearly, are simple in structure, and, yes, they are basically upbeat in tone. Sounds like Charlie really needs to control what goes into his ears right now.

  13. Monica says:

    Disney songs often have very easy-to-understand lyrics, sung very clearly, are simple in structure, and, yes, they are basically upbeat in tone. Sounds like Charlie really needs to control what goes into his ears right now.

  14. autismvox says:

    @Niksmom, I guess you could say that happens to Charlie, getting so “something” ‘d by the music that he can’t function, deal; somethings gets turned off/on.
    @Leila, thanks for noting that—Charlie never completely mastered using the iPod as far as choosing the songs. He tended to just keep listening to the same ones over and over despite efforts to keep the variety different and to put it on Shuffle. Thinking….
    @Monica, yes, I do think he feels the need for control—and the CDs have the songs in the same order (unless I put it on shuffle) whereas the iPod and the radio have much more randomness. If I may say so, listening to a few Disney songs offers a certain kind of comfort for yours truly (from time to time….it’s a world of laughter and a world of years, if I may say so).

  15. autismvox says:

    @Niksmom, I guess you could say that happens to Charlie, getting so “something” ‘d by the music that he can’t function, deal; somethings gets turned off/on.
    @Leila, thanks for noting that—Charlie never completely mastered using the iPod as far as choosing the songs. He tended to just keep listening to the same ones over and over despite efforts to keep the variety different and to put it on Shuffle. Thinking….
    @Monica, yes, I do think he feels the need for control—and the CDs have the songs in the same order (unless I put it on shuffle) whereas the iPod and the radio have much more randomness. If I may say so, listening to a few Disney songs offers a certain kind of comfort for yours truly (from time to time….it’s a world of laughter and a world of years, if I may say so).

  16. Synesthesia says:

    I never knew something like that existed! When I hear music I love I get so excited I can’t help flapping and squealing and people see and hear this and it’s embarrassing.
    I adore music.
    Also Dir en grey can get me especially flappy. Songs like Kasumi used to hit me like lightning and give me all kinds of chills and aches and emotions.

  17. Few yrs back I said I wanted to look into FC for Matt and got negative attitudes from therapists.

  18. a parent says:

    On the FC front – my son is pretty good with my IPod touch. I bought the Proloquo2Go app and he’s figured out how to use it. No change in his speech patterns, though. When he uses it we get the same echolalia produced electronically. I’m thinking the issue is deeper than speech, so all forms of communication are affected.

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