3.22.2013

Shutdown, the video

So I thought I'd post a little video. First of all, to see if I can :) secondly, to show people who might be regular readers exactly what we are dealing with here.

This is Sophie, at her Sophiest. The only thing missing is her Thomas video. With autism being a spectrum and all, I know some people deal with tantrums, and meltdowns and over-hyperness... we don't. What we deal with is different, but still hard, and still scary. It's a little girl who is here, but isn't. Or is here for fleeting moments like a shimmering bubble floating in the air, you marvel at its grace and perfection, then POP! It's gone and you can't even be sure if it was as glorious as you remember it or if your mind is playing a trick on you. And she is just that delicate, shatters just as easily.

Little intro. Even the brief exchange you see here is a LOT for Sophie. The moment I turned the IPad on and started to engage with her she began shutting down. The video is about 2 minutes. Few minutes afterward she fully shut down and went into deep sleep standing by my side. I should've tried to capture it but it was an awkward angle and I just shut the iPad down without thinking.

As you will notice once I realize what she's doing I'm not saying too much and not engaging with her too much. If I did, she would shut down even sooner. This behaviour happens at all therapies, assessments, all settings that are one-on-one with even minimal expectation of a "performance" from her. She does not do this when left alone. If anybody has any ideas I'd welcome them. I do think its pretty unique because its not that we don't want to work with her or teach her... It's just next to impossible for us, let alone for an outsider. If I was able to achieve shutdown within 2 minutes, imagine what a therapist would do- she probably wouldn't be able to get her coat off coming in. And yes, we have tried. It doesn't matter what the time, this was about an hour and a half before her usual nap, but she can shut down at 9 in the morning if circumstances call for it.

Oh and by the way, I was not trying to achieve the shutdown. I thought it would be nice to post a little home video of Sophie in her natural habitat so to speak. It is quiet and peaceful, the baby is asleep, Sophie was in a happy, cheeky mood. Only when I started rolling I noticed that it was too much, too much expectation, too much spotlight... Just too much everything.

Open to suggestions.

 

 

 

9 comments:

  1. I loved seeing the video of Sophie---she is as adorable as I had pictured. I do see what you mean with the shutting down. I wish I had suggestions! I can see how it would make it very hard for anyone to work with her, if even you interacting as kindly and gently as you were makes her shut down. I've seen something a tiny bit similar with Janey when she first gets to school, especially on days she has ABA first. She might have been singing all the way in, but she gets the distant look in her eyes when asked to do something like put her coat on her chair, and acts like she can't hear. But she does eventually do it, and it's not as extreme as what you explain with Sophie. I feel like I am not being encouraging enough, but I know you'd rather have honest! The one time with the book it was great to hear her start to make talking sounds---it almost seemed like she scared herself by almost starting to want to say something, and she had to quick cover for that! I wish I could visit you and meet you and Sophie. She is a wonderfully sweet girl and you are wonderful with her.

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    1. She is wonderfully sweet it is true. It is just so often she looks like she is just on the verge of something, like we are having fun! And then poof she's done, just like that. I get these seconds of time with her and I guess I long for more. But if I'm sneaky and kind of engaging with her in a more off-hand way she tolerates it better. I'm not sure why she doesn't want this focused, one on one attention. It's so counterintuitive as most toddlers can't get enough of that. So the key is to act uninterested but its hard when she's there looking so sweet and I just want to play with her! Thanks for your kind words- I would love to have you! Never say never...

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  2. I wish I had something to suggest to prolong your moments with her. I hope it gets better with time.
    As for teaching, nothing else but sneaky works over here. In case you are yet not familiar with these, you might want to check out Symbolstix Online, the apps Photoshop Touch and Scene & Heard. With just these you might be able to give her something to work with on her own that is completely individually tailored. They do have a symbol for Thomas at Symbolstix too :).

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    1. Thanks Antti I will check them out. I'm not sure how ready she is yet for apps so far she likes just one. We are learning that when she likes something, she likes it a lot! Variety is NOT the spice of life for our girl :)

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  3. Re-reading my last comment gave me the feeling that I was getting a bit pushy. I apologize.
    This enthusiasm dates back to some ten years, when the only few computer programs available were unsuitable and really, really boring. They were loaned from the hospital for a limited period of time. If your child wasn't interested, it was implicated that he was too severely disabled. At least that's how I understood it. We were starving for better programs, or at least a possibility to use your own pictures on some occasions. I just could not understand why it was impossible. (I still can't.) Anyway, good luck with S&H, I hope you find a picture to work with that she approves.

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    1. Oh Antti no need to apologize! I welcome suggestions. First of all even for me she is hard to read so sometimes I just assume she isn't ready for something when she very well might be. And second of all even if I do think something is too advanced for her I keep it in the vault, lol. To use in the future.
      I am touched that you care about her so much and offer advice, thank you.

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  4. This is Alice, completely. I try to insert myself somehow in her games, and sometimes I get that shutdown too. It's like she feels pressured or stage fright and she mutes everything out. She'll just walk away, or maybe yell "NO NO NO!" to get me to back off. I wish I knew what to do, I wish I could offer any suggestion at all. Alice used to see a wonderful occupational therapist who would use the crappiest Dollorama toys to get Alice's full attention, and not a single tear was shed in the process. When I try the same I just frustrate her.

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    1. Hi! It is hard isn't it, when it seems that they reject us, the people who care the most
      On the flip side, maybe because they feel comfortable with us, that's why they feel they can be themselves? It is frustrating and hard though when we just want to play! I learn something new about Sophie everyday though, mostly along the lines of "back off and let me try this myself". Thanks for visiting!

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