following the script

The other day, my friend Mom-NOS told me that her son Bud had had a rough go at school. His team had reported that he was severely dysregulated and that he had said some very concerning things during the day that were completely out of character for him.

Bud and my Brooke are similar kids. No two of our little snowflakes are ever the same, but upon reading what she’d written, I had a hunch. I was wary about making an assumption, but the scenario sounded eerily familiar. So I told her my thoughts.

MOM-NOS,

I’m just going to throw this out there – please don’t feel like you have to respond; it’s just a thought.

Brooke is so reliant on scripts to communicate that very often the words that come out really don’t reflect reality – or at the very least reflect some skewed, often hyperbolic form of reality – but not remotely her intention. ie – when we got a call from school early in the year that they were concerned that she was seemingly having suicidal ideations when indeed she had said “You just want to see me flat on my back and kill myself’ which yes, many an autism mom would recognize from It’s The Great Pumpkin, Charlie Brown.

And, she tends to go into script-only mode when she’s not ‘present’.

Sooooo, not to minimize any of this IN THE LEAST – but perhaps to contextualize it a bit if it’s relevant.

Again, just thoughts based on my experience, so dismiss at will.

Love you.

Jess

She wrote back later to say that she’d had the same thought and that she was composing an e-mail to Bud’s team to let them know.

And, by God did she ever write an e-mail. And thankfully, because she is who she is, she was gracious enough to share with each and every one of us. And holy hell, my friends, this is something we ALL need to read.

If you have a child who uses scripts in any way, shape or form, you NEED to read this. If you have a kid who gets dysregulated by change, you NEED to read this. If you teach or come into contact in any way with children like mine, I IMPLORE you to read this.

Thank you, MOM-NOS – for sharing your insights about your utterly fabulous kid with us. He is a wonder, and he is incredibly lucky to have you as his mom.

http://momnos.blogspot.com/2012/02/spirited-away.html

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13 thoughts on “following the script

  1. Thank you. We sometimes have to calmly explain to eavesdroppers that our angel really doesn’t intend to “run off into the street and get hit by a car” (probably learned from me and my oblivious ‘dad-speak’ lecturing.)

  2. When the topic first came up, really didn’t think it applied to kids like mine. I mean, he’s nonverbal and, believe it or not, doesn’t even watch TV! After reading Mom-NOS’s email, I realized that Nik has his own version of scripting in which he may perseverate on specific words over and over…not because he wants THAT thing right then but because of the association he has made with either a feeling or some need which THAT word represents. It’s made me start looking at how he communicates (when it’s not clear cut) and what he may really be trying to convey.

    So much wisdom and teaching to be gained from Bud’s experiences. Amazing, isn’t it, how much we learn about our own children when we look through a different lens once in a while.

  3. I’ve said it before and I’ll say it again: I think that our kids are absolutely brilliant find scripts, switch them out, mitigate, edit – to find ways to communicate when they don’t have the words. How ingenious. What problem-solving.

    Bravo to MOM-NOS for putting it all in words, and to you for having the good sense to know her.

    xo

  4. Wow, you have no idea what great timing this post is. How lovely to be a part of such a great community. I’m heading over now to read the post. Thank you so much for sharing this today.

  5. Boy could we have used this information at family events. Maybe it could be on a coffee mug so we could just share it with family, family friends, sitters, educators, etc…

  6. Thank you for sharing this. We are in the midst of trying to get my son’s teachers to understand what his anxiety looks like and how it can be caused and what the can do to help him have more learning moments and less anxious moments. Mom-NOS blog entry was an amazing entry explaining this “stuff” that we know too well. Thank you.

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