spiky

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I bumped into an old friend at the Autism Speaks event on Saturday night. She asked how the girls were doing. I told her about Katie getting ready to transition to middle school (Good Lord, when did that happen?) and heading off to sleep away camp for the first time this summer. But then I was stuck. I had no idea what to say about Brooke.

“She’s doing wonderfully!” would be crap. The med change disaster is still dragging on. Her anxiety is – in some situations – at all time highs. We can’t cook anything on the stove in our house when she’s home. Dinners are baked, boiled (as water makes steam, not smoke) or grilled – as in outside in the middle of winter in New England. Good times.

Yet, “She’s having a rough time,” leaves out all of the good stuff. And there’s been lots of good stuff. The quantum leaps forward in communication, emotional identification, connection. What about those? What about all the questions she’s been asking at the dinner table or the actual conversational volleys she’s been attempting with her sister? What about the pretend play with her beloved American Girl dolls?

And so I answered, “Spiky.”

It was a funny word, but it felt like the only one that was real.

“The lows are tough,” I said, “but the highs are pretty incredible.”

*

Yesterday morning, a little girl who was in Brooke’s class last year – not this year, last year – came to find her. She had something she wanted to give her.

 

 

I melted when I saw it. There are kids out there who are seeing my girl. Who are truly getting how utterly fabulous she is. Who are going out of their way to tell her that.

After dinner (hamburgers cooked outside on the barbecue), we went through her envelope of Valentines. Third grade is the last year in which the kids all bring them for the whole class, so I knew the envelope would be full, and it was.

We looked together through the cards and set aside the little trinkets that came with many of them. Soon we had piles of Valentine pencils and temporary heart tattoos. Brooke read the names on the cards and even added an enthusiastic, “I love it!” after opening a couple that struck her fancy.

One of the last ones she opened didn’t hold a pencil or a tattoo. In fact, it contained nothing store-bought at all. It was handmade –  drawn in careful crayon on simple white paper. And what it delivered was far better than any trinket.

If I thought the teddy bear had done me in, I had no idea what was coming next.


Front

Middle

(Ed note: I hope you’ll forgive my extremely clumsy photo editing. I had to take out real names but had no idea how to put pseudonyms back in and my IT guy is fast asleep.)

*

Yup, the answer I’ve got is spiky. The lows are low, but I’ll be damned if the highs ain’t pretty amazing.

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22 thoughts on “spiky

  1. That’s incredible. Spiky is the word, Jess, because the highs are “way up there”. There are so many kids and adults who will see Brooke’s sweetness and all of her talents.

    Love you,
    Mom

  2. She is wonderful!! If that comes across so very crystal clear through your words – I can only imagine how it must scream aloud to everyone who actually knows her!! Glad your Valentines Day was Great!!!!

  3. You know Jess, I’ve been mulling over your problem with the smoke alarm, and I think I might have a solution. Since you’re going to be standing right there anyway when you’re cooking, would it be safe to disconnect it when the stove goes on? You could maybe let her take the battery out herself- that way she would be ‘in control’ of the noise she hates so much. The only thing is I’m not sure if they beep once when you reinstall the battery… you might want to give it a practice run while she’s in school or something. Just a thought. :)

  4. Yup, spiky. Perfect description. But those highs? Somehow, they soften nearly every minute of the excruciating lows. Here’s wishing for many more highs to come!

  5. I like it very much and will use it! Thanks for showing the special gifts Brooke got – kids get it so much better sometimes..

  6. That’s a perfect word to describe it. And some how, over here….it seems to be both at the same time, Cymbie’s making incredible gains in self help, fine motor, and verbal ability. We also potty trained her in less than a month!!!!!!!!! At the same time behaviorally, she is in pieces. Screaming, frustrated, hitting herself in the face. It breaks my heart and I don’t know how to help her. I try calming techniques but it doesn’t always work. So yes, Spiky…up and down…all at once.

  7. Spiky. That is a perfectly chosen analogy (or euphemism?).

    In my past life (pre-autism), I remember saying something like ‘Life is like a wave, so grab a board and learn to surf.’

    So if life is spiky, do you grab some cramp-ons, hiking pole, and get ready for the climb? The views at the top of the spikes are definitely sweeter.

    Love that your girl was shown some real, thoughtful love for Valentines’.

  8. I so often feel the same. When we see those glimmers of hope…of breakthroughs…it’s incredible! Of course, we have to wade through all the mucky times to get to those little glimmers. It’s always nice when I feel like I’m getting a glimpse into WHO my son is and what he is truly capable of. When he squeezes his little arms around my neck so tight and lays one of his open mouthed kisses on me…I melt :-)

  9. Spikey – yup!

    Spikey development profile….
    Spikey speech and language profile…
    Spikey hours, days and weeks…

    But when people get to know our spikey little ones they find out how lovely spikey can be xx

  10. Pingback: Autism Hero Highlights

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