Tuesday, June 15, 2010

Glee, Cranberry, and Creativity

Last night Jessie and I treated ourselves to dinner in front of the TV. Inveterate Gleeks (fans of the TV show Glee) she missed last week’s finale because she had a Down Syndrome Association board meeting (she is co-chair) and Dan recorded it for her. This is the wind-down week of Storefront and Jessie just goes directly to her work placement at a Dollar store in the morning and then comes straight home for the afternoon.

Storefront is a two-year program that focuses on skills for independence and is our first foray into a specialized program … all of Jessie’s school life was spent in a regular classroom, fully included, and that is a whole other story! Which I will try to tell at some other point, but I am still in the recovery phase and my therapist says repression has its uses. Just to clarify: I am a full, active, and slightly rabid supporter of inclusive schools, and that was the problem. While those were some of the best years of our lives, they were also some of the worst—I have both the biker jacket (Mom from Hell) and the scars to prove it. Jessie, tho, seems to have survived and thrived.

So, as a kind of last week celebration we have not entered into our summer routine (because I haven’t invented it yet) and we’ve told Jess that it will be an easy week with few expectations or demands. Hence, TV in the middle of the week (normally there is no TV during the week). Her only task was to set the table. My only task was to figure out how to work the DVD recorder (Dan wrote down instructions for me). I wasn’t too worried about her reaction to New Directions (the name of the Glee club in the TV show, for those of you not yet addicted) not winning the Regionals (I admit, I watched it last week while she was at the meeting) because she already heard the plot from another Gleek at Dandelion. That saved us one meltdown.

You see, while Jessie knows that TV is scripted, written, and acted, like all good soap opera and other viewers, she invests a huge amount of emotional energy into the characters and the plots. Hence why we limit TV! (want her to save some of that energy for what I call “real” relationships).

So we had our plates full of chicken, beans, rice salad, and cranberry sauce and we turned the show on. Now Jessie is not the neatest of eaters. Put food and TV together and you have a reason to purchase a heavy-duty front loader (which we did). And she managed to get cranberry sauce all over her new grey University of Calgary sweats (her trip souvenir from the DanceAbility workshop with MoMo in Calgary, Alberta).

As Jessie does all her own laundry—I gave up trying to keep up with her 10-times daily change of clothes—she was devastated. I told her that if she took them off right after the show (she was obviously not devastated enough to pause the show and deal with it) and soaked them in cold water and put stain stick on it, then the stain would probably come out—ah yes, teaching moments.

She did take them off after the show. But this morning, on my way down to the basement to meditate, I noticed that she had just left them lying on the stairs. “Jess. Your pants are here and you didn’t soak them or put stain stick on. The stain might not come out.” “That’s okay,” she says blithely, “It's creative!”

It’s creative? Not the response I was looking for. And then I remember: to Jessie, every moment has the potential to be a Glee moment—where people sing and dance their way through mishaps, mistakes, and the angst of adolescence. Where creativity is the reigning value and if you slip up—on the job, with a chore, even in trying to zip up your winter coat—it can all be righted by calling it “creative” and you can move on to the next scene. Because just around the corner, there might, just might, be a parade or a stage or a leading man waiting to provide that happy ending that we all deserve. Where moms don’t rag on you and friends always call and teachers just tell you you’re brilliant and no one asks you to change anything about yourself and, of course, the lyricist has written just the right song for the moment. And nowhere in the chorus or the verses is there any reference to stain stick!


Daniela Goldstone said...

Thank you so much for checking out Daniela's blog! I just finished reading yours here and just loved every word you wrote. Your daughter is so amazing. I think Daniela and Jessie could be great friends. The share a love of Miley Cyrus and (off key) singing. I am really looking forward to following her journey and know Daniela will as well (she's volunteering right now). I plan to write about your blog on her blog and add it to our blog list on the site. Your blog is just the type of blog I want to encourage, all of us, as families who have independent minded children with disabilities to share and learn from. I'm looking forward to a growing friendship! All the best,

Christina Goldstone ( feel free to email me anytime!)

Anonymous said...

We're Gleekers here too! I think I'm reliving (or re-inventing?)my high school days through that show. It actually makes my heart soar and I get all happy for an hour or too -- not to say I'm not an usual happy gal, but I figure the perils are peri-menopause are setting in.

I think that everyone should have a piano man somewhere in the shadows ready to accompany you in whatever song you're going to break into! :)