How It All Ended or College Course I, The Test

I have time to write tonight because Jessie and Dan (Dad/husband guy) are off at the college taking the Introduction to Media Studies course.

Jessie took her first college course last year. Having opted not to attend a segregated program for students with intellectual disabilities at the college (there is no inclusive program here), she decided, upon leaving high school, to focus on dance and take a few courses to see what kinds of things she was interested in. Of course, she’s interested in everything—from music recording to physics to fashion design—with the flavour of study changing about as quickly as her clothes (read: at least 3 times a day, that’s why she does her own laundry).

The last time I blogged about that course—Introduction to Public Relations—we were uncertain as to the outcome, at least in terms of her mark. We had already determined that the outcome in terms of connection (with peers, a mentor, people in the field) and learning was pretty fine. But as for her actual grade? Still a great deal of uncertainty. The whole course was largely test-based and the only accommodations Jessie had were the use of a computer and time and half. She bombed the first three tests (all the questions she answered, she answered well; but the ones she didn’t answer counted for more than half the test), scoring just under 50 %. She was devastated, but also knew that she aced all her assignments and loved the interaction in class.

So. She decided that she wanted to continue, even if she didn’t pass the course, and we would use it as a test (sic) case for determining what worked and what didn’t. We were also fairly certain that we could work with the instructor (an experienced and well-respected PR professional in the city) to make suggestions for future accommodations that would meet Jessie’s needs without major changes in course expectations.

Our goal, at least for her first course, was to go in slightly under the radar, working with the most basic accommodations offered by the college and without ruffling any feathers or making even “reasonable” demands. We wanted to see how Jessie negotiated the class; find out what her natural inclinations, talents, and challenges were without us intervening too much. After all, we were in the thick of transition, switching gears and making her responsible not only for driving (we’d help her with the map if she asked), but also for filling the engine up with gas. No more parental determining what and when to study or prepare for the course—that was now up to her. And we (read I, I with an old biker jacket with Mom From Hell emblazoned across the back stuffed in the back of the closet, where I wanted it to remain for a while longer) did not want to push the college until we knew that Jessie was motivated and would follow through to the best of her ability.

As we moved towards the final exam, we realized that there was a lot on the line. Jessie had to pass with at least a 75 to pass the course. Could she do it? This is where the instructor stepped in and suggested that Jessie write the test along with another student (whose first language was not English) in the room next door, so she could ask the instructor any questions that might help her target her answers.  Jessie studied. Hard. She wrote the test. She came out beaming because she knew that she had answered all the questions; being able to ask for clarification helped a lot. And then we had to wait. And wait. And wait. For the final mark.

Which, when it came in, was a solid B–! Which, when we thought about it, meant she did really well on the final exam. Which, when we asked the instructor, she did! She actually got a 92 and the second highest mark in the class! Whoee Jess! We had some cake that night!

But for me, and I think for Jessie as she moves forward, the icing on said cake was the delightful letter she received from the instructor after the course was over.  A full and beautifully written page of appreciation (for her contribution to the class), of thanks (for the privilege of being her first college teacher), and of advice (for growing in the world). It was a wonderfully wise and encouraging letter. One that I think shows, once again, just how blessed we are to have Jessie lead us to these inspiring and wonderful individuals. While I could easily tell you our war stories and regale you with the downright insensitive and litigious things people have said or done to Jessie (yes, there are many of those stories), what I have loved about our journey into community are the people we have met who have embraced us, been willing to struggle with us to find solutions, changed our way of thinking, and shown us how to be better people.

So I will give Jessie’s instructor the last word, with her last words:

My warmest wishes to you, Jessie, as you dance forward in life. I know it can be confusing at times. I know that you will always have more questions than answers—that is true of all of us. I know that you will never get yourself or the world figured out—none of us do. But celebrate the wonder and the confusion of life. Being alive is not a destination; it’s a place on a moving bus. And if you have family and friends on the bus who share your life and your values and your beliefs, who share the laughter and the worries and the sorrows, you know your trip will be memorable.

Imagine Hope Inside My Dream

That phrase has echoed around in my head and heart for a long while and it is still not finished changing me. That’s the kind of transformation that happens at H’Art studios—for both the artists and those lucky enough to own or view  some of the paintings—a jolt of recognition and joy, and a slower more gradual process of awakening to a slightly new way of seeing or being in the world. A way that is firmly rooted in life—with its joys and sorrows—and hope.

Many of these painting make me laugh out loud in joy and delight—Mark’s Rake Tree, Julie’s Rainbow Butterflies Dancing, Anna’s Fancy Dress Cupcake Ball; others draw out a certain sadness or even grief—such as Joe’s This Is the Way Friends Used to Be. All are fairly vibrating with life, as was the Green Door restaurant this evening, where H’Art’s most recent show opened. 

The artists greeted friends, supporters, collectors, and strangers, welcoming each one into the circle of creativity and community created by their bright colours and bold imaginings. A creative community built for artists with developmental disabilities, honouring their way of seeing and being in the world, and giving them a space to share their vision, and themselves, with the wider artistic and urban community of which they are an integral part.

Jessie is lucky to have snagged a spot at H’Art this year. While her primary medium is dance, she has participated in H’Art during the summer or on school breaks (it is tailored to adult artists) almost since its inception in 2002 (with original funding funneled through the local Down syndrome association). When a regular spot came up this fall (Fridays), Jessie was excited and determined to make it fit in her schedule. I have to admit, this surprised me. I’ve never really pegged Jessie as a visual artist (I know, I know, so many individuals with Down syndrome are visual learners and communicators, but, as with many other so-called typical traits, this one didn’t seem to be attached to Jessie’s extra 23^rd, —in fact, she was assessed as an auditory learner early on. Although that doesn’t quite explain why she doesn’t listen to me. Or, maybe it does!) As a child she loved to paint and glue (or, let’s be honest, loved to squeeze out the paint and the glue, I think it was more of a sensory thing), but even with paint and other materials within easy reach, as she matured she rarely chose crafts or painting or even pencil and line drawing as an activity. It was (and is.) mostly dance and writing.  

But I think that being in an artistic/creative environment, where self-expression is honoured, encouraged, and celebrated [see this post about disability and art], offers Jessie a kind of freedom to be that is rarely found in other spaces. For many of the other artists, who, like Jessie may have been bound by preconceptions and imposed limits, the studio has become a very special, safe, and exciting place to explore and share their perceptions of the world around them. For some, the studio is a safe harbour, for others it is their calling.   

 

So now Jessie goes to the studio every Friday, spending the morning exploring themes, journaling, being supported in the creative process, and the afternoon prepping her canvas and painting, working with other artists, some of whom have exceptional talent and are willing to mentor those just beginning. And tonight was the opening of this year’s fall show, and once again the art invited me to slow down, look, and be infused with a kind of joy and respect and wonder that is at the heart of all true art. It will feed my soul for months to come.

What art programs are out there in your community? How are artists with disabilities included in the creative community where you live?

The H’Art show, Moon Is Laughing Gas, is at the Green Door Restaurant in Ottawa, October 1–27, 2012.  

31 for 21: My Top 5 Reasons

I’m joining in the 6th annual 31 for 21 Blog Challenge, hosted this year by Michelle at Big Blueberry Eyes. That means I will be posting every day (yikes!) for the month of October (that’s the 31) in honour of Down syndrome (or Trisomy 21, hence the 21), because . . .

1.       I’ve never done one of these bloggy things before.

2.       If I post, that also means that I get to read what all these other wonderful bloggers are writing and nudge some of the bloggers I read regularly to join; I also get to find out more about all these delightful and wondrous children/youth who happen to have Down syndrome, and the families and communities who love them.

3.       I just came back from a 5-day canoe trip into the backwoods of Algonquin Park, tired, sore, smelly, and grinning from ear to ear because I survived, and I am hoping that this blog hop might provide a similar challenge, but for my writing (and without the odour, or the whitecaps).

4.       Since I have been remiss in blogging, but was looking for a way to jump back in, this just seemed like too much of a gift to ignore. According to the Rule of Benedict—at least in Joan Chittister’s interpretation, which I am using as my daily lead in to meditation— “it is not perfection that leads us to God; it is perseverance.” And so, by persevering (blogging, writing), even when I have given up so many times (blogging, writing), I figure I am engaging in a practice that can only lead me closer to understanding (and honouring) what God has in mind for me.

5.       My daughter Jessie, 22, has Down syndrome, and I cannot think of what my life would be like without her, and I so want to share the adventure. Where adventure (thank you Wikipedia) is defined as an exciting or unusual experience; it may also be a bold, usually risky undertaking, with an uncertain outcome. The term is often used to refer to activities with some potential for physical danger, such as skydiving, mountain climbing and or participating in extreme sports. The term also broadly refers to any enterprise that is potentially fraught with physical, financial, or psychological risk.

YUP, that’s pretty much life with Jessie. And that’s what I hope to explore, every day, in October.