Crazy Season of Joy

mold
Looks like a snow flake? think again…

We are fugitives this Christmas. Running from the mold spores populating our home. The wettest season in recorded Maryland history left standing water in our crawl space, and havoc in our lives.

Owen was aware of the problem before we were. In October he spelled to me  “I hate our house.” Many weeks ago he sensed the presence of mold there “generally in every room.”

Today at the doctor’s he wanted to clarify this enough to grab his Apple tablet and shove it at me, until I got the idea that he had something to say. We sat in the waiting room, since we had run out of time with the doctor. The keyboard board rested on Owen’s knees, his typing hand (right) supported awkwardly by my left. With my right hand I tried to keep the tablet from crashing to the floor. Owen’s left arm thrashed about, as usual, pulling office magazines and costs into piles on the floor. But he kept typing slowly, letter by letter, with his right forefinger. He needed to be heard.

“I want to say that he. helped me. last time. (…) I think that he is right that mold in the house iuolloi is making me have  behavioers. [sic] please give him this.”

(this word “iuolloi”  makes a mysterious appearance now and then in Owen’s writing. Asked what it means,“very” he types back.)

And so the Christmas holiday finds us escaped to a Marriott TownHill Suite hotel, behind a mall in Bowie, while remediation and cleaning go forward.  It is easy to get gloomy. Still, in the  midst of our uprooted chaos there is still Joy.

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Last Sunday Owen, Edward, and I attended our first party for individuals who type to communicate — a holiday party! It was organized by Sarah Sohne (thank you! thank you!) and held at Reach Every Voice of Rockville, MD.  Finally — a local social network!!

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Attendees created collaborative poems, passing the paper around the circle, adding words to each other’s pages. It was a great non-threatening way to spell together (these individuals were all spellers on paper card and stencil, not yet using the keyboard as Owen prefers).

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Then typers shared new year’s resolutions.

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“Invite!” Owen instructed me, as the party was coming to a close.

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So I made sure to tell everyone there about HANDS the brand-new  social and support group for those with autism, especially those who type to communicate. Over on our side of the Beltway, Bowie/ Mitchellville – second Sunday of every month!  7:30 pm, at the Washington New Church! Faces brightened. Hopefully the word will spread.

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(Trevor’s poem – thx Trevor!)

Although Owen went out on a limb for our kick-off meeting  in November (prodded by his mom), reached out to write and deliver a few personal invitations, no one came. No one came in December either. But we aren’t giving up. It can take time to get something new started.  “HANDS” was the name of a support group many years ago begun by myself and two other moms. But that group was for the parents of special needs kids — this one is really for the young adults themselves.  Owen wants to organize people to go hiking, among other things.

And so, mold crisis or not, we are joyful. It is now six  months since our personal long-looked-for Annie Sullivan arrived, in the form of Marilyn Chadwick, to reveal for us the brain, heart, and humor lurking behind Owen’s behaviors. To  show him that he had a voice. This has been a miracle year — a messy, expensive, miraculous season of birth and growth. For Owen and for me and for Edward. For any of Owen’s family who engage with it. And, actually, even those who don’t.

Mold isn’t the only thing we’re growing around here.

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7 thoughts on “Crazy Season of Joy

  1. Owen Smith December 23, 2018 / 2:58 am

    I just LOVE to hear about Owen’s thoughts. Please keep sharing!

    Like

  2. Janice D Lumsden December 24, 2018 / 12:15 am

    Love this, Wystan! So happy for your family and the whole new world opening for Owen and your family.

    Like

  3. Ann December 24, 2018 / 2:59 am

    I’m ashamed to not know Owen better. I am moved by how brave and hopeful he is. I am grateful to see that great smile of a happy mother in one of the photos. And Owen seems to be standing more upright. He is changing.

    Like

  4. Lori Odhner December 24, 2018 / 11:26 am

    Thank you. I’d love to send the next blog about Hercules to my kids. Is it on a link yet? Most are not on Facebook where I read it

    Like

    • wystansimons December 31, 2018 / 3:46 am

      Oh thank you Lori. Isn’t it amazing with all this great technology it seems to only make things more complicated than before? Facebook will no longer allow things to automatically be posted there. So I have to carry it over and plunk it down there after I write it.
      The link and blog name is embracingchaos.net

      Like

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