a playground of words

NetherlandsPlayground2

Yesterday, I sent the following letter to everyone on Brooke’s support team.

Team Brooke,

Hi, all. I hope everyone is doing well. I read something this morning that stopped me in my tracks and I hope you don’t mind, but I feel compelled to share it. It’s a post about echolalia written by an autistic woman named Julia Bascom on her amazing blog, Just Stimming. The following two paragraphs resonated like nothing else I’ve ever read. Knowing my girl as you all do, I’m guessing you’ll know why.

“As much as I can hate words, I delight in them, too. When I’m echoing, referencing, scripting, riffing and rifting, storing and combing and recombining, patterning, quoting, punning, swinging from hyperlexic memory to synesthetic connection, words are my tangible playground.

Make me talk like you, and you’ll get a bunch of syntactically sophisticated nonsense. Let me keep my memories and connections, my resonations and associations and word-pictures, and if you slow down enough, you might hear something ringing true.”

Here’s the whole post.

http://juststimming.wordpress.com/2012/02/16/an-ethnography-of-robotics/#comments

Thank you all so very much, not just for teaching Brooke, but for respecting her, supporting her, and helping her to celebrate who she is.

Gratefully,

Jess

I often caution parents not to assume that anything and everything that they read from autistic adults applies lock, stock and barrel to their own children. Until the day that we can, in some way, ask, “Is this what you feel too?” and our children can, in some way, say, “Yes, Mama! Yes, it is,” we won’t really know.

Autism is a spectrum. Humanity is a spectrum. The intersection of the two is as vast and wide and messy and all-encompassing as either of them alone. There is no more valuable insight than one person’s experience of the world and yet, it is just that – one person’s experience. It takes so much more before we can assign it to our children, manifested precisely the same way because of this one connecting thread.

Ask any scientist and they will tell you that assumption, no matter how well-founded in research, taints the objectivity of further observation and strangles the possibility of discovery. Look only for the thing we’ve already determined that we will find and we will, even if we have to force it into being. But so too, in dismissing anything that doesn’t fit, we will miss everything else there is to see.

The best that we can do is watch, watch, watch our children. Listen with so much more than our ears to not just what they say and do but HOW they experience the world from the inside out. And then gather insight from others. And see what fits and what doesn’t. What might and what might not jive with what we know.

I read a lot that doesn’t resonate. I store it, just in case, holding onto it like a treasure map to a neighboring island I’m not now, but might someday, be on. And then, once in a rare while, I find something that is so achingly familiar that I gather it up and hold it close and revel in the intimacy, the knowing, the reflection of some aspect of my girl in all her wonder, there in someone else’s words.

Julia’s words. My God. This is my girl.

Brooke skips through fields of words and frolics in their sounds. She rolls from one to the next — Water Water Besha Besha — filling her pockets with the ones that delight her senses, dropping the rest on the grass with a satisfying thud as she runs, overcome with squealing laughter, a vocal gymnast throwing sounds twirling, twisting, flipping into the wind. My girl loves sounds. As tongue-tyingly frustrating as they may be when forced into the box of Other People’s Perceptions, words and sounds and sounds that are words are wondrous, joyful, FREE when unencumbered by the burden of Communicative Purpose.

Ugly Pear Lop Ala Kazool 

Words are her playground, and now I know that they are Julia’s too. Perhaps some day they can slide and swing and sift and rift together.

In the meantime, I will be her word playmate any time she wants one. And I’ll have these words in my pocket the whole damn time:

Make me talk like you, and you’ll get a bunch of syntactically sophisticated nonsense. Let me keep my memories and connections, my resonations and associations and word-pictures, and if you slow down enough, you might hear something ringing true.

10 thoughts on “a playground of words

  1. That’s it! That’s totally it! Words are Brooke’s playground. I’ll line up to be a playmate anytime she wants, as well.

    Love you,
    Mom

  2. You have no idea how much I needed this, as I get ready to discuss whether or not my son is ready to be moved into a middle school classroom next year. This goes right to the crux of one of the arguments we’ve been having over his “relatedness”. I say he relates just fine, and you’ve just handed me the tools to explain why.

  3. This has always been my favorite of Julia’s posts, it rings true for my Vincent,too. I love”echolalia is what you use when words are too much. It’s also what you use when they are not enough. These are not opposites.” Such beautiful, valuable insight!

  4. Thank you for these words. They were an incredible blessing today. I’m trying to learn about autism & need reminders that my step-son is an individual. He has been able to verbalize to his mother & I that he’s confused as to why friendships are so hard. He desires true friendships with his peers. In my pursuit to learn more, I’m encountering autistic adults who seem to speak for my step-son & his unique experience. While the opinions of professionals, autistic adults, & other parents are necessary & often valid, I tend to forget the eight year individual & pursuing what he thinks & wants. I pray that society changes & support the efforts of groups trying to change attitudes about autism at a macro level. When my step-son walks out of our house or his mother’s house, I want those he interacts with to show him support, understanding, & encouragement. I also want to listen to him & help him form & maintain friendships by building his social skills, figuring out ways he can process the overwhelming emphathy he really does have for others, & convey care & concern towards others. I’ve been criticized & cut off from some parents of children with autism & many adults with autism because they view my desire to help him meet his goals as trying to change his neurology. It’s very hurtful & was truly refreshing to read this.

  5. Wow…just wow!! One of my most favorite posts that you have written. I am going to check out Julia’s blog. I often tell people…..to know my sweet boy is to sit in his giggles….to be still next to him and repeat his words back to him….the rhythm and cadence in his sounds can bring such joy and peace to him…..and to me. Again, I thank you for this post.

  6. “Water water besha besha” is so catchy I’ve been saying it ever since I read this. Also this makes me think of how this fall, a few days after I rediscovered how much I love running around and saying “Squish,” I got to go to a mattress store. Best coincidence ever.

    A variation on the theme: http://www.bartleby.com/122/66.html

    -Emma W.

  7. Pingback: » My son -Dora, Boots, Mickey, Minnie, The Wiggles and the connection we make through scripts Redefining Typical

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