A Farewell to His iPod

Charlie had Monday off from school for Yom Kippur and got up really early. (He was the alarm clock to get Jim on the 6.52am train.) He conked out, woke up again and got himself dressed, said "yes" to getting bagels, asked to go swimming. Our YMCA pool was almost empty, though we did see our neighbor, Marie (she is over 80 years old) doing water aerobics. (She used to go for daily walks 'round the parking lot and I'd see her as I waited for Charlie's bus.) Charlie settled himself on the big airplane-toy-float and tried to get it to move by rocking his body (Jim said he does the same in the kayak). A couple of preschool age children trickled in with their mothers. I asked the lifeguard if it was ok if we stayed in the pool while there were swimming lessons and she said, no problem: "We know you guys."

Charlie at the YMCA pool

When we got home, Charlie told me "bye," as in time for me to get lost; ok by me. I went to check my work email. I stepped back into the kitchen and found Charlie with a white plastic garbage bag at his feet. He directed a somber look at me: "Bye bye mom." "Um, just a moment," I said and took a quick glance into the garbage bag where I beheld Charlie's iPod in its bright green case and his headphones.

Um.

Charlie told me "bye" again and took the bag out the door and put it in the garbage. I waited until he was in his room and then snuck out to the garbage and retrieved both items. And hid them.

What do I think might be going on?

If you really want to know: Charlie is a super-sensitive kid, especially to the emotions of people around him. He is very attuned to what anyone says, however much he might appear to be listening. (And the helmet does not cover his ears.) My (maternal) interpretation, but it's possible he is punishing himself for the current very difficult situation in his classroom. 

Further, Jim and I also think, as in we think we know, that Charlie is quite aware that it's thought that he should be removed from his classroom and school, and that he's perceived as a problem.

Again, that's all our parental intuition and we know we could be wrong. But as I've realized time and time again, Jim in particular has a deep-running intuitive grasp of Charlie's internal states. And I remember two things:

When Charlie was not quite 7, we again and again noted a puzzling pattern. He'd ask for a Barney video after doing some activity we'd requested he do. We'd turn on the video, Charlie would sit and watch for a few minutes, and then he would bang his head on the floor and, well, much else. One day after this had happened, I put all the Barney videos and (mean mom here, oh boy) Charlie's stuffed Barney himself in the garbage and dumped the bag. The response from Charlie was expected—grief. For awhile, he didn't head-bang but ever after, "Barney" is one of the words he says out of the blue (the school terms this a "non-contextual utterance"). Over time, Jim and I have realized, Charlie says the name of the big purple dinosaur to comfort himself.

Also, it was when Charlie was 8 that we were in the same situation we are currently in regarding his school placement. The special education director of another New Jersey town had informed us that Charlie could not stay in his public school autism classroom. With what seemed like only undesirable and inappropriate options, Jim and I took Charlie out of school and homeschooled him for over a month, until we found a place at a small private autism school. My mom (aka "PoPo") came out from California and stayed with us and, much as Charlie loves her, he was pretty unhappy for much of the time and kept asking to go back to school. For the next two years, he often seemed nervous and worried when told that there was a holiday or a vacation or that he wouldn't be in school. I suspect Charlie still thinks—just as he did four years ago—that it's not right for him not to be in school. Plus, he's more attuned than ever to what the adults around him—teachers, school staff who walk into his classroom, ABA consultants; his parents—are saying in hushed tones.

And all of that is perhaps behind why, to Charlie, the iPod had to go.

And it's all why I love my boy so much, so much, till it could break your heart.

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Comments
16 Responses to “A Farewell to His iPod”
  1. Jennifer says:

    I know you mentioned it the other day, but I really don’t get that “non-contextual utterance” thing. Just because it isn’t “contextual” to the teacher doesn’t mean it isn’t for Charlie.
    Case in point: one day, one of my students was sitting at his desk after finishing his work. He put his paper away and said, “Hey! You’re being crushed by a giant corn!”
    Certainly non-contextual for me.
    Not being up on kiddie movies, I didn’t immediately connect that with Cloudy With a Chance of Meatballs, but it turns out J was telling me wanted to see that movie that weekend (it was a Friday).
    He came back on Monday, and I asked him what he did that weekend. “I go the movie,” he said. When I asked him what movie, he grinned and told me again about the giant corn.
    Shouldn’t the goal here be to figure out what Charlie is trying to say, even if it’s by scripting or pulling up some previously learned (though perhaps superficially unrelated) phrase? If the concern is other people understanding him, surely knowing what he’s trying to communicate would help teach him a more easily understandable alternative?
    Personally, I know my brain often goes from A to D or E or F, and I often preface something I’m about to say with, “I got here logically, I promise, but . . . .” We’re not all contextual all the time.
    Sigh. I know at this point it’s probably pointless, but I can’t help but boggle at the attitudes Charlie is facing.

  2. Bonnie says:

    Their intuitiveness and understanding goes far beyond what we know I believe. That is so sad that Charlie is sort of punishing himself. THe hard part is too, you just know that the staff in question probably speak about him often as if he isn’t there, assuming he’s in “his own world”, when in fact, his world is their world! Idiots. I hope Charlie wants his ipod again and will in some way, realize he deserves that and so much more! Great post!

  3. Niksmom says:

    I echo what Bonnie wrote. It simply breaks my heart AND makes me mad as hell that people treat autistics and any nonverbal people like they are imbiciles and can’t understand what’s being said/done around them.
    Sending hugs to Charlie. And you, too!

  4. karen d says:

    From afar, I love Charlie too. I’m so sorry he feels the need to punish himself for just being who God made him to be. I’m thinking of you guys every day and praying for a solution that is far better than Charlie’s current placement. xoxo

  5. Jen says:

    It may be non-contextual to them, but surely to Charlie it makes perfectly good sense. I work with a girl who does that, she starts asking for a whole list of things, none of which she really wants. This tells me though, that there is a problem, and she is upset about something. This can tell me that I need to do something before this escalates to something serious, and that maybe I do need to tell her mom to take her brother away so he doesn’t get hurt. She does this when she’s happy too, but the words, the intonation, the speed, all of that are different. The upset chatter can be a hint to take it easy, hold the more difficult stuff off for a little bit, and give her a few minutes to hang in her room before facing the world, so to speak.
    Perhaps these people need the experience of having someone talk about them like they weren’t there, or they couldn’t hear. A parent, of all people, did this to me once. It upset me, but it does help me consider how I speak. Would I talk this way if this person could talk? What if one day, this kid learns to speak, do I think he would be angry at me in the future? I try to be able to say no to both of those.

  6. Moi says:

    {{{Kristina}}}, this is just so sad, I cannot imagine a child of his age wanting to punish himself. I hope the idiots in that school read this blog just to know what kind of harm they can do to a child.
    Remember, though, if this new placement stinks, the school district is once again responsible for placing him in a different one if you want out of this new one. It may be hard to prove that this placement isn’t “appropriate”. If you have to go back to them, take an advocate or lawyer or third party. They will walk all over Charlie and you and Jim as they have all these years, and they have no right to. But they will do it again because they Can.
    Have you given the iPod back yet? Put on a new skin, see if he will go for it. Never let him associate music with something bad. 😉

  7. gretchen says:

    Hmmm. Sometimes Henry will, when he’s upset with himself (when he’s been corrected for something), say “I just want you to throw this movie away” or “this book” or whatever special thing he has with him. I am having a hard time putting this into words, but I have seen the same type of behavior in Henry. Like he wants to be punished? Or he thinks he will be punished and so at least wants to have some say in it?

  8. Emily says:

    Poor little man. It does sound like “self punishment.” TH does it ALL the time…including throwing away things he loves, tearing up something important to him to punish himself, grounding himself, etc.
    I’m glad you retrieved them! Yes, he’s definitely trying to tell you something…and I think he’s succeeded.
    That “bye” stuff sounds so teenagery to me. And I mean that in a good way. 😉
    E

  9. a parent says:

    We’ve got a set of phrases for leave me alone:
    – “Mom can go.”
    – “Bye.”
    – “Leave him alone.” starting to get angry
    – “He doesn’t seem very friendly.” Really annoyed that you aren’t taking the hint
    I would have grabbed the iPod as well, but I have a feeling that my son wouldn’t take it back – once he’s made a decision to throw something away or crumple it or whatever seeing the object again just makes him angry.
    So sensitive…it’s pretty painful to watch. The problem we have is the non-typical responses make people think that he’s got no feelings. He feels plenty, it’s just expressed differently. When he sees someone get angry, he gets excited. To others this might appear like he enjoys other people’s anger, which implies that he doesn’t care about other’s emotions. I don’t believe that’s the case, they just hit him differently than neurotypicals.

  10. Monica says:

    My heart breaks for all of you. Perhaps Charlie is also showing that he doesn’t want to be cut off; that he wants to hear and be aware and included in all that’s going on around him, even during this painful time of transition. He’s taking such a huge step. I think he knows that all of the things that once soothed him, whether it be iPods or Barney, also run the risk of making him unaware. He wants to face life head-on, difficult as it is. What a brave, wonderful boy.

  11. Eileen says:

    Maybe a different ipod (color) that you can swap with new, different songs downloaded? Maybe as a reward for being the great kid that he is? 😦 I hate hearing about this whole crappy school situation and knowing that they are giving up on Charlie! I hope that the out of district placement happens as quickly as possible. Maybe once Charlie is in a new school, he will accept his ipod back again.

  12. Emily says:

    Oooh, Eileen, that’s an interesting idea.

  13. autismvox says:

    hm, Eileen, maybe this is why I have waited so long to get him that iPod touch!

  14. autismvox says:

    When I checked the garbage can, I did discover that the garbage men had been earlier in the day, so the bag with the iPod and headphones was still there…… I have asked Charlie if he’d like it a few times, but he has said no.
    Monday he showed no signs of anything unusual with the iPod. Took it in the car, sang along to some of the songs. The only thing that was different was that he handed me the headphones before we’d even gotten home and asked me to pack them into the case.

  15. Club 166 says:

    So sad to hear about the iPod. But glad to see that all of you are maintaining your routines as best you can.
    Must admit I’m a little envious in a way, though. Buddy Boy will never throw away anything! Not ripped up pieces of paper, things he hasn’t looked at in 6 months. Anything.

  16. Dwight F says:

    >> hm, Eileen, maybe this is why I have waited so long to get him that iPod touch!
    Perhaps he’s heard of the new Nanos with cameras and this is about him wanting to upgrade? 😉
    P.S. At our house it’s “Ok, bye” when ‘visitors’ are not welcome in his room. 🙂

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