Tuesday, November 15, 2011

Retro Jessie: Jumping Over the Edge [1992]

I wrote this when Jessie was just 2 years old. Mary Anne Kazmierski found a bursary for me to go to the McGill Summer Institute. While the McGill Summer Institute no longer exists, its newer form is still alive and well and can be accessed through the Inclusion Network. This piece reflects the beginning of our relationship with inclusion, community, and Mary Anne and Carl Kazmierski. My how they changed our lives with their ideas, their love, their support, and their willingness to do battle. I will never be as strong as Mary Anne, or as faithful, but I hope that when I get tired, I can think of her and remember the difference one person can make in a community.


The birth of our daughter Jessie over two and a half years ago catapulted me over the edge of a precipice into what felt like a bottomless pit of dashed expectations and hopeless explanations. I had no choice about going over the edge of that particular precipice. Jessie, who had just one extra chromosome, also pushed us into territory marked by unbounded caring, love, commitment, pain, laughter, and fear.

The McGill Summer Institute on Integrated Education brought me to the edge of another precipice. A different precipice—for I now have a choice about whether or not to jump.

I went to McGill out of curiosity. I wanted to sort out some of the questions I had about integration/inclusion and (as any parent of a toddler can appreciate) I want to see what it would be like having adult conversations with real adults for days at a time!

In don’t think it was just the novelty of intelligent conversation that made my experience at McGill such a water shed. Nor was it just the electricity of Marsha Forrest, or the quiet concern of Jack Pearpoint, or the penetrating insight of Judith Snow, or the wide range of emotion and experience of the other individuals who were there, like me, to share and learn. It was all of these things together, and then something else. I won’t call it magic, because you may not read any further, but is was something in the realm of magic—a kind of quiet transformation, an inward exploration that radically focused my attention.

I could try to describe who I met there (Inez from Bogota, Sue from England, Chris from the North West Territories), what new information I picked up (MAPS, circles, and PATHs), and what happened (I talked, I listened, I cried) during those two weeks in Montreal, but is seems kind of meaningless out of context. The best I can say is GO! The next best thing I can share is how it affected me.

Through incredibly well-orchestrated community lectures (storytelling really), workshops, group discussions, hands-on learning, and one-to-one sharing, I was challenged to dream and to give voice to my fear. And by doing so my whole perception of our life as a family in a community underwent a radical shift.

From being emotionally sort-of committed to the idea of integration for my daughter and anybody else who had the courage and energy to fit for it, I am now intellectually , philosophically, and emotionally committed to creating a community that can embrace and include all its children. A community that has the ability to celebrate the gifts that each and every one of us bring into the world to share with others.

I ask different questions now.

I used to think in terms of promoting those skills in Jessie that would make her ready to be a part of our local preschool and in the future our local elementary school. Now I’m also asking what skills, what supports our preschool and elementary schools need to work on to welcome Jessie. Maybe it’s not a question of getting Jessie ready for school, but of getting school ready for Jessie an any other child who has been labeled or categorized in order to deny them access to a classroom.

Because it’s no longer about granting access. It’s about basic human rights.

I used to support integration from the point of view of a parent of a child with special needs. Integration then meant that my child would be able to reap the benefits (and the heartaches) of being a part of our community. But maybe the point is that our community, our schools, need to have the chance to reap the benefits (and the heartaches) of having Jessie as a full-fledged participant. The focus shifts from just Jessie and her needs to include our needs as a community. While Jessie needs to feel a part of our family and our community (and that’s a pretty basic human need) our own family, our friends, and our neighbours deserve the chance to re-evaluate and strengthen their own feelings of acceptance, love, understanding, and self-worth. Jessie has a gift to give. The question is: Do you want to find out just what that gift is?

As Judith Snow would say “Walking is a gift. And not walking is also a gift. Speaking is a gift. And not speaking is a different kind of gift. Being able to put your pants on right is a gift. And not being able to put your pants on right offers endless possibilities for different kinds of gifts.”

There are going to be compromises. There are going to be difficult questions. There are not going to be any guarantees. Because inclusion is not a product. Inclusion is a process.

I think it’s the only way to go if we want to try to build caring, creative, and fearless communities.

I’m ready to take that leap over the edge. To commit my energy to fighting for and creating inclusive communities. And it starts right here in my home. I know that I can’t do it by myself, and I’ve found that I don’t have to. That’s the beauty of leaping—it’s amazing how many people are willing to hold your hand.

It’s the only way to go if we want to try to build caring, creative, and fearless communities.

Good Night Mama Kaz

Mary Anne Kazmierski (Mama Kaz) died last week, a short eight months after her husband Carl. Both were vibrant, strong, faithful advocates for people with intellectual disabilities and for life. Carl was strong, pointed, and patient; Mama Kaz strode in and commanded a room. And when she entered, people either ran towards her, or as far away as possible. She was a formidable woman—full of fierce love; a powerful sense of justice; and a tenacious commitment to making schools, teachers, and administrators build inclusive classrooms and treat all students with dignity and respect. Schools hated her, and maybe that’s what I loved so much about her! She went out on a limb where very few were willing to go, pushed back boundaries, and was not afraid to yell “Shame on you!” to a principal who knew that they had allowed a student to be treated hurtfully on their watch.

She was also a very loving and proud mother, and brought those qualities to all her interactions with young people and their parents. She just loved you into being the best you could be and into sharing the best you could be with others.

Her obituary—written by her children Vince, Angie, and Greg (the first student with Down syndrome to graduate from high school here in Ottawa more than 20 years ago)—describes her well. It starts:

"Mama Kaz was called by God late on Saturday, November 5, 2011. After a life-time of fighting for others, mom died after a short, but tenacious fight with cancer. Her response when she received her diagnosis in August was vintage Mama Kaz: "That's no damn good," followed by "Let's just keep on keeping on." She spent her last days on her terms; with friends and family in her extravagantly decorated house, with good food (that she didn't have to cook) being served, surrounded by the sounds of celebration, of song and of prayer. The love that surrounded her was a living testament to her belief that: "if you want to love living, you have to live loving."

When I told Jessie that Mama Kaz had died, her eyes filled with tears and she quietly said “But who will call me to tell me that I’m doing a great job?” Indeed. And who will mobilize us and go in and confront school boards and fight for the very basic rights of myriad children denied not just education, but dignity and respect? And who will support the exhausted single immigrant mom battling with a school board over supports for their child with a disability? And who will encourage the family camped out protesting the school denying their daughter the right to attend the school closest to home? And who will call the father, exhausted from negotiating with the school for basic adaptations, to tell him what a brilliant job he is doing? And who will badger the superintendent and ask him if his priest knows what he is doing? And who will wear turquoise blue anklet boots and a matching Eiffel tower purse to funerals? Who, indeed?

Mama Kaz was one of a kind. She touched everyone she came into contact with in a very unique way. Everyone who knew her has their own delightful and often improbable story, and each story reflects another facet of the diamond that was Mama Kaz.

We first met Mama Kaz when Jessie was only two years old, and she found me a bursary and made me apply to go to the McGill Summer Institute on Inclusion. That experience (I have posted the article I wrote about it here) radicalized our lives and drew us into the circle that was fighting for inclusion. It changed the way I thought about Jessie, and about life. And it connected me to people who were rich in their experience of delight and in their understanding of what it means to be human and connected.

While inclusion has come a long way since then, our kids still need champions. Mama Kaz was one of those ‘til the end, and she will be missed. But we owe it to her to keep on keeping on. That means fighting for every child’s right to be educated, respected, and loved for who they are. That means gifting the world with the best in us, so that we may change the world and make it a place more filled with love and laughter. That means reaching out and encouraging others so that they feel strong and connected. That means not being afraid to stand up to the bullies, and encircling everyone in the embrace of love. Not as simple as it seems, but I will try to keep on keeping on, just as Mama Kaz ordered.

Friday, November 11, 2011

HomeShare

Jessie generates goals faster than her bedroom floor collects discarded clothes. Her newest goal (as if learning to cook, to clean the bathrooms, and developing a speaking/advocacy sideline were not enough) is to move out by Christmas. (See text message.)

At one point, as I was trolling the internet (because I have nothing better to do) I googled housing supports and options and saw a description of a home-share program. Common in many cities, this is where a person with a disability, once they feel they want to move away from their parents, can go and share a home with another family/couple/person. In order to qualify as a home-share partner (i.e., a person who has someone with a disability live with you in your home), you have to NOT be employed so that any job requirements don’t conflict with the time and energy you are supposed to spend on supporting the individual living with you. In addition, you get paid for it.

I had to read it twice, just to be sure: If you have a young adult with a disability, you have to pay a lot of money for services (because there aren’t enough to go around and meet people’s needs), plus you have to lose money because you can’t really keep your job because you have to teach and facilitate a good life for your son or daughter. But if you don’t have a young adult with a disability and you want one living with you, you have to agree to NOT work outside the home, PLUS you get paid. Hmmmm. What’s wrong with this equation?

Being ever hopeful, I thought of a solution.

I quickly called my friend Claire. “Claire, Claire!” I said. “If we all sign up to be home-share partners, we can all just trade children. We won’t have to try to balance work and teaching/managing our children’s lives, AND we’ll get paid for it!”

Claire wasn’t so sure. She thought that it would be the one time that the government paid attention to what was happening with our children’s lives. She could be right.

Monday, October 31, 2011

"Why I Am Late for Cooking Class"

Jessie had three-quarters of an hour when she got home from working at the food bank to eat lunch, pack up, and head off to catch the bus for her cooking class at the community health centre. She made and ate her lunch, and then had a brilliant Jessie-inspired idea for a costume to wear to the class.  What defines a Jessie-inspired idea is that it explodes at the last (if not past the last) possible minute for it to be do-able.

My first inkling of this brilliant idea was when she almost knocked me out of my desk chair as she grabbed the good scissors, and then left me in a cold freezing draft as she forgot to close the door after rooting through the recycling box for cans and containers.

“It’s a great idea!” she exclaimed. “I am going to wear old plastic shopping bags (we do have a very few of those left) and attach cans and things.”

At this point Jessie is due to leave in exactly 1 minute to get to the bus on time. And she still has to pack a container to bring home what they cook, find a loonie ($1 coin) to defray a minor portion of the costs, and review the bus and walking route to get to the class

“Great,” I say. “Good for you!” (See upcoming post on mantras.)

She is excited. She is late. She looks like this:

If you can’t see it, the message (because Jessie always has a message!) reads:

If I had a smart phone I would send the picture to her cooking class instructor right now with the header: Why I Am Late.

But I am not sure how well it will work for my client who is waiting for my final edit on their food safety report.

Friday, October 28, 2011

Text Message Alert: TGIF

I was going to blog about moving out (a different text message), or letting go, or maybe even cooking. A short blog, because I have a ton of work. But as I was sitting down this text message just came in:

Hey Mom. I want to know
if i get my stuff done in . . .

I am pretending that I haven't recieved it yet.
Who is this girl and why does she never send these messages to her Dad?

Wednesday, October 26, 2011

Living the Dream

This is Jessie’s weekly calendar:

Far from languishing at home alone trolling the internet and sneaking bad food, Jessie is very busy. Thanks to the help and inspiration given by her friends, family members, and mentors at her PATH (Planning Alternative Tomorrows with Hope, or futures planning) in the spring, Jessie seems to be “living her dream.” Or at least that’s what she said last week. Of course, this could also be attributable to being madly in love (thank you Drummer Boy!), when the whole world takes on a rosy glow!

I, however, am exhausted! All the training and the figuring out and the teaching is taking a toll on my psyche and our bank account (hours not worked)! You see all those little open white spaces on the wall calendar? Those are the “getting there” and “getting back” spaces, which a) take a lot of time because Jessie is taking the bus and b) taking even more time because I’ve been teaching her how to take the bus and hence end up being out for hours at a time.

Talking to my friend CG the other day, I said I thought it would be manageable (i.e., I might actually be able to get some real work done in a reasonable amount of time) when we had all settled into this new routine.

“But Nancy,” she said (ever the realist, ever the friend), “It’s already the end of October.” Then she handed me some tissues to wipe up my tears and suggested we go have lunch at Costco.

Thursday, October 13, 2011

Street Proofing or, Forget What Jesus Would Do and Just Keep Your Head Down

Jessie has a wild schedule this “first-year-of-no-school” year. While it includes a good mixture of both down and active time to keep her contributing, learning, creating, and growing, what makes the schedule so wild is that it’s not the same routine every day, as it had been for school and hence most of her and our lives so far. And it involves a lot of bussing to different places all across the city. Places that I might not normally go. Places that have no sidewalks and trucks that roll through stop signs (the Food Bank); places that require at least three transfers through points that I can’t access with a car (and hence can’t be a rescue backup); and places with more druggies, homeless alcoholics, skanks, and barely leashed Rotweilers per square inch than anywhere else in the region (downtown Rideau Street!).

Of course, it’s to this last location that Jessie has to travel 2 times a week. At night. To the dance school billed as being “located in sun-filled, heritage studios.” What they don’t mention are the hordes of tattooed and pierced street kids blocking the narrow entrance to the three flights of rickety stairs that bring you up to the creaky and perhaps sun-filled, if one were ever there in the daytime, studios.

While Jessie did a dance intensive at this studio during the summer and managed to get there on her own with no hassles (maybe it was all the tourists balancing out some delicate drug-to-decency ratio?), September’s journeys played out somewhat differently.

Dan was the travel accompanist and on the first night managed to herd her past a drug deal going bad on the way in. On the way out it was a skank fight. Night journey two was a longer story involving a dog, a tattoo, and a pipe, with the added Fellini-esque bonus of some spandexed and feathered street opera singer. We agreed that while Jessie could technically get to and from the classes on her own (she was comfortable with the bus route and knew where to go), it would be just too dangerous.

This, and the dubiousness of certain Christian teachings as practiced by transitioning youth with disabilities, was confirmed on night journey three. This is when Jessie and Dan were approached in the bus shelter by a staggering, red-eyed, malodorous gentleman holding out a grimy hand requesting spare change.

Jessie looked him in the eye and said, “Sorry. I don’t have any money right now. But I really admire you and you should keep up the good work. Because what you are doing is making a difference.”

Dan, taken aback by her response (the gentleman in question was too stoned or drunk to hear anything she said after “sorry”), asked her what she meant. What kind of work did she think he was doing and why on earth did she admire him? She explained that he was probably looking for money to clean up landmines or to contribute to the Foodbank, as the only reason to ask for money is for a good cause, right? And (this is the part where my faith gets me into a bit of trouble, and Dan looks at me accusingly), she said “Mom says to greet every person as if they were Jesus.”

Dan explained that the man was probably looking for money for drugs or alcohol (Jessie’s eyebrows raise in horror) and that she was NOT to greet every person as if they were Jesus—at least not on Rideau Street and certainly not when she was alone—and that he would discuss this with me when they got home.

Which he did.

Which is why we are re-street proofing Jessie and I am re-thinking exactly WHAT Jesus would do. Or what he would do if he were a middle aged mom trying to balance risk with independence in a twenty-something young woman with a disability and a social conscience.

Friday, September 30, 2011

Fashion for the Real World

Jessie and I don’t shop well together. As she told me when we were shopping fashion discount in Maine, “Mom, I have my own style and it is NOT yours. You just don’t understand and I HATE shopping with you.” She is nothing if not direct. Dan claims this trait comes from me, and so I have no one to blame by myself.


Of course her declaration came after she picked out three dresses to try on that had as defining features: gold lamé, a strapless design for the big-busted woman (which Jessie is not), or glitter. All evening wear, which I don’t think would go over well in the recesses of the Food Bank warehouse where she works.

But I do understand the need to dress well and to develop your own style. I think. Okay. Let’s just say that Jessie has taught me the value of being open-minded about style, the same way she has basically taught me to be open-minded about everything—by shattering almost every preconceived notion I have had about the meaning of life and the way things work and making me reconstruct a more fluid yet infinitely more resilient conception driven by my love for her. And the world. But mostly by my love for her.

You see, when she wears glitter and glitz and tight fitting dresses that she has picked out (that make me gag when she shows them to me), she actually looks good! Go figure. So I am willing to open my mind to her style, but also need, as a parent, to make her realize that evening (read “ho”) wear should not make up 75% of your wardrobe. This is where the “But you just don’t get my style . . . “wailing begins and sales people start to herd us toward the exit.

However, we had an exceptional experience at Reitmans (their tag line is “Designed for Real Life”), where the salesperson heard the adolescent keening and came straight to my our rescue instead of scurrying madly off in the other direction. She took one quick look at what Jessie was trying on and said to hold on, as she had something just for her—the most popular jeans for young women her age, in just the right length. And she spoke directly to Jessie, ignoring me with a wink that meant that she knew who she was really rescuing.

Jessie shooed me away with a withering look and a flick of her hand and I skulked around the corner from the change rooms. The salesperson came back with a line of fashionable stretch no-zipper jeans in a 28 inseam that fit her, looked great, and probably wouldn’t even need hemming!

Jessie sashayed out of the dressing room and did a runway walk up to the mirror—turning to admire herself from all directions. The grin on her face (not to mention the exclamation “I look so good!”) had everyone in the change room area smiling, including me!

I quickly pulled the salesperson aside and mentioned that Jessie needed some tops as well, and before I could even turn back she had pulled three off the rack (that I never would have picked, but that, when on, looked great on Jessie) and had Jessie’s full attention. They were now a team and Jessie loved the fact that she had her own “dresser.”

At the end of the day we came out with 5 pairs of pants, 4 tops, 1 well-dressed young woman, and 1 extremely grateful mother who now understands why God(ess) created good salespeople. It’s so mothers won’t throttle daughters in open public spaces.

Saturday, August 13, 2011

End of Summer

She's back. With her laundry. These loads I do (Jessie usually does her own laundry) because we are trying to get back out the door to head to Montreal and then Maine for two weeks. Where we don't have internet access! Hooray! Ciao all!

Saturday, August 6, 2011

Off to Camp

We just dropped Jessie—along with her sleeping bag, rubber boots, and a bag of clothes—off at the buses leaving for Camp Misquah. She’s been looking forward to a full week in a lakeside cabin with friends and high-energy counselors. Misquah has certainly become a traditional part of her summer life.

Country Gal, Black Belt Belle, Lady Lyrics, and Jessie
While some of the campers waved a tearful goodbye to their parents, Jessie made a beeline from our car to the check-in location and then bounded off to find friends and returning counselors. We were really only there to schlep her bags, I guess. She was, however, happy to wave at us from the window as the bus departed and we parents and caregivers were left, a bedraggled lot, to head out variously to delightful vacations of our own or much needed house and garden repairs.

I always feel a bit anxious at the empty space that yawns open after we drop her off, and have, over the years, found different ways adjust and cope. Today Dan and I decided to go straight to the grocery store.

On our way there I told Dan that I was feeling quite sad. “It’ll pass,” he said. I wondered how long it might take and if my sadness would ruin our time together. By the time we entered the store and I got to the produce section, I was feeling anxious. Jessie, the touchstone of my days, was gone and I wasn’t sure how it would all unfold. Would I be able to focus on anything? Would I be kind and loving with Dan or keep thinking about Jessie and her life and her future and whether she had remembered to change her underwear?

I was distracted and wandered behind Dan as he put lettuce and bread and cheese into the cart. I drifted down aisle 1 and thought about how I might not have to fight over my computer for a whole week. That made me smile.

At aisle 4 I remembered that we needed some salad dressing and it occurred to me that for a whole week, we could actually put tomatoes in the salad (Jessie doesn’t like tomatoes).

At aisle 9, I was madly flinging packages of black licorice and Junior Mints into the grocery cart to accompany Dan and I to all the movies we were going to see together.

Nine aisles, that’s all it took. I guess I’m just a resilient kind of gal!

Wednesday, August 3, 2011

Channeling the Power

Jessie has had, and continues to have, a variety of goals for her future. While there is an underlying current that relates to the arts and performance, the flavours of the month day rival, in range and creativity, those on offer by the Baskin Robbins ice cream chain.

Generally her identified passion and career choice derives from whatever movie/TV show she has just watched. From Spy Kids (a spy, of course) to Harry Potter (a wizard) to Little Women (a writer, complete with oil lamp), to Bring it On (a cheerleader), to the Jonas Brothers (a lyricist), to Glee (this one is a little more convoluted and involves travelling to LA with Dan /Dad where he gets a job as a scriptwriter on Glee and writes her into the script so that there are TWO actors with Down syndrome and she is the new love interest for Finn).

As she has matured (sic) and moved into a life phase where she is expected to be a little bit more reality-based in her choices, she often states that her desire is to act, advocate, and/or dance. All things she has had some experience and success with; all things that she has figured out that we have a more positive response to (i.e., it does not precipitate parental eye-rolling or large exasperated sighs).

Of course she continues to throw us loops—such as a consistent urge to follow her passion: her music career. (Hmmmm, where is that chromosome related to singing on key? Certainly not on the 21st you say?) Or a more recent desire to give up dancing professionally (which she does, dance professionally that is, with Propeller Dance) so she can spend more time with Drummer Boy, her boyfriend, and they can work on their combined music careers (he is also considering a career playing with the National Hockey League, so they are not 100% sure about the music thing. )

This week however, I’m glad to see that all our discussions about talent, passion, reality, and the 10,000 hour rule are really paying off! She and some friends went to see X-Men on Monday and I got this text:


I wonder if our college savings will cover it?

Tuesday, July 26, 2011

Identity Theft

The problem with the “family” computer is that it really is my computer, in my office— which actually happens to be the family room. Go figure.

I gave up my basement office years ago when Dan started to work freelance from home. But somehow, when he got a job and started going to a real office in a real downtown office tower, I never quite got my office back.

The point being (yes, the point) that many people end up using my computer in the evening because they don’t want to go to their own offices and computers because then they might have to actually go up (Jessie) or down (Dan) stairs.
So. Many different people log on to Facebook from my computer and unless you are very, very careful you just might end up posting under an identity that is different than your true and rightful identity.

Which might not be a problem—unless someone is posting love messages. And the love message happens to read:

Apparently that is the message I sent Drummer Boy, Jessie’s boyfriend, the other night.

I just have one word, and it’s probably the same word he has: YUCK!!!!

Friday, July 22, 2011

Cheap Heat

It was so hot here yesterday! Almost 36C, but feeling like 46C (that's around 96F, feeling like 115F for those of you in the US). We have no airconditioning; I have a contract to finish; and Jessie was supposed to go to a wave pool with the Ys Owl Summer Program, but ended up having to deal with "girl stuff." This left her sobbing in the bathroom at 6:30 am in the morning. "But WHY today? WHY now?"

I totally agreed that it was totally not fair and so vowed, right then and there, that we would throw it all to the wind (or the heat, as the case may be) and just head out to the mall for some shopping, smoothies, and movies. (We are not lucky enough to live on the West Coast, where Beth and her family are wrapping themselves in sweaters to keep themselves warm from the ocean breeze!)

So we spent the day at the mall, as you can see by our ticket stubs. Three movies in one day! I don't think I've ever done that. And it was cheap! First we went to the mall that hosts a Rainbow Cinema (movies just moments past prime and at a cheaper price--just $6 a person). They had a "heat" deal (see "heat" on the ticket stubs?!) that put the movies at half price (okay, we're down to $3 a person). Then I made Jessie use her access pass (an entertainment pass you apply for for persons with disabilities that allows an accompanying person go in for free, which makes it two for one). So the grand total for each of us was $1.50 per movie! We spent $9 for both us to see three movies!

While the day ended up being a bit more expensive (Dan joined us for dinner after work and so had to pay the full $3 for HIS movie tickets), it was still cheaper than airconditioning.  

Saturday, July 16, 2011

Nick Jonas Will You Work With Me?

It’s a hot Saturday (the temperature is climbing up past 29° Celsius) and we are on our way to the “hottest” location in town—the Bluesfest. Jessie saved her money and bought 2 tickets to see Nick Jonas (so, I guess she isn’t completely over the Jonas Brothers). Nobody else would go with her, not even Drummer Boy! So guess who’s going.

Dan, because of his tinnitus (so he says, but I’m thinking of making him get a note from the doctor to that effect) gets to stay at home and watch the Mets and the Phillies.

She’s dressed appropriately for a big festival on a hot day in a big field by the Ottawa River, don’t you think? I’ll be slumming behind her carting the requisite blanket (don’t bother with chairs, they don’t work in a moshpit), water, and snacks. I drew the line at carrying the sign she constructed, which read, “Nick Jonas, will you work with me?” (One of Jessie’s aspirations being writing lyrics for the Jonas Brothers.)

I was a little nervous that I might be arrested for cougaring.

Thursday, July 14, 2011

Finding Her Way

Jessie has a pretty straight-forward relationship with the GPS.

She hates it.

Apparently it makes me yell and swear.

“Don’t bring that GPS!” she insists if she sees me grab it as we go out the door.

“I won’t go if you bring the GPS!”

This has something to do with the trip to Boston we took last year. How I made her call Dan on the cell phone (he flew into Boston while we drove down from Maine) and say we were going to be hours late because the %^&*$ GPS had me going in the %^&* wrong direction, and now we were somewhere near *&^%(#$ Woburn and &*&^%$@ hours away from ^&*^%$ Boston. ^&*#!!! With another ^&^+#$ for good measure—just in case the cows in the field hadn’t heard me the first time. Jessie didn’t really have to relay this to Dan over the phone, as he was able to hear me perfectly clearly.

However, as I have learned to restrain myself (or how to read the GPS so I don’t end up in a river), Jessie is beginning to see its benefits.

Take, for example, the other morning—the first morning she was traveling to the Y's Owl Summer program completely solo, with no coaching or what I call “invisible support.”

“Invisible support” usually involves me hiding in bushes or sitting in the car around a corner making sure she is getting where she needs to go, but there to intervene or guide if she calls. This is not a strange lurking disease or a bad case of helicopter parenting, but a very well-known tool (at least among some of my acquaintances, which might tell you a bit about who I hang out with)—used by parents of children with disabilities to provide experiences of independence without full frontal pain (such getting hit by a car, for example). I.e., mom’s there if you need her— she appears magically and reinforces your sense of her omniscience, but is not there at all if you don’t need her and you can feel proud that you did it all by yourself!

While we had practiced and rehearsed the trip (me with her; me with her, but distant; me following behind in a car etc…) in all its variations, the trip to Y's Owl is, in all honesty, a challenge. A long bus ride and a long walk down a street with only one sidewalk (and that one under construction). All complicated by the return trip home—which requires the same long walk along the same street with the sidewalk under construction, PLUS crossing (with lights) a six-lane major road. Given that sequencing (not to mention directionality) is not Jessie’s strong suit, there were bound to be some random street crossings leading to unplanned explorations of the city’s nether regions.

So I wasn’t surprised when I got a call from Jessie just at the time that she was supposed to be arriving at the YsOwl site. But I was surprised by her request:

“Mom . . . I think you better bring the GPS!”

And she was right! She was so lost I couldn’t, at first, find her on google maps. (You are WHERE? Okay. Find a street sign and read me BOTH names. Watson Creek? But the only Watson Creek I can find is a greening reclamation project outside the city?!?!)

It turned out she had, as predicted, crossed roads when she shouldn’t have and turned the wrong way down streets. I finally did locate her and told her to stay put until I rescued her. I was no longer interested in teaching, just in getting her to her program on time so I could get back to work (hmmmm, and I wonder WHY I work from home!).

As we drove up to YsOwl Jessie noticed Drummer Boy (also doing the same summer program) at the bus stop, waiting for the others to join him.

“What’s up DB?” she yelled out the window.

“I got lost,” he replied, “I walked the wrong way.”

“Then how did you get here?” I asked, since there was no mother/rescuer/maker of miracles accompanying him.

“Oh, I just know that if I get lost, I re-trace my steps.”

Brilliant boy. And while my daughter may need a GPS to find her way around the city, it looks like she doesn't need one to find a good guy. She's already got one.

Monday, July 4, 2011

Dancing Through Canada Day 2011

On Friday, July 1st, we headed downtown just before noon for the Canada Day celebrations and to get Jessie to Major’s Hill Park for the flash mob that she was involved with doing a choreography to “Like a Waving Flag” by K’naan. (Flash mob = group of people who assemble suddenly in a public place, perfrom an unusual or artistic act for a brief time, then disperse, often for the purposes of entertainment and/or satire see also random acts of culture for some really fun flash mobs). Emphasis on MOB, as we got stuck on the wrong side of Wellington St. when Kate (hold on to your fascinators everyone) and Will were due to pass by on their way from Parliament Hill to the Governor General’s. I have no pictures of that famous couple because we were squashed on the edge of a steep set of stairs along with 30 million (sorry, apparently the official count was hundreds of thousands) other sweating, red-maple-leaf-bedecked tourists and natives (as in native to Ottawa). Also, I wasn’t really interested in photographing them or getting near them and our brush with the royal couple was purely circumstantial—we were trying to get through the Wellington Street madness to join the Majors Hill madness so Jessie could be on time for the flash mob.

I will be kind to us all and not give you a complete blow-by-blow (let's just say some words were said that were not majestic and we had to hoist Jessie over a three-foot metal-pronged fence, going against the crowd) description of our journey. Suffice it to say that we made it, and the video (see below) is the proof!

Then we went home to gather up our strawberries (what is Canada Day without strawberries?) salad, and elderflower water to join the extended family descending on my friend Cathy’s house (Rebecca and Rachel are her daughters and the stars of many previous posts) for dinner. The gaggle of youth that had collected then headed out for a night of swing dancing hosted every Friday night by the Ottawa Swing Dance Society. Accessorized appropriately with large bottles of water. I do bless the Gray’s every day for their unique and delightfully inclusive group of friends, family, and acquaintances.

video

Friday, July 1, 2011

DB Usurps Coveted JB (Jonas Brothers) Spot on Bedroom Wall

It has been a whirlwind of weddings (blog to come), flash mob rehearsals (next blog), graduation preparations (blog to come), and summer program registrations (not blog-worthy, except the bus training part, so . . . blog to come) all culminating in Tuesday’s final high school graduation and celebratory dance at Drummer Boy’s house outside the city. All the Storefront students (12 of them) were invited, with the graduates themselves being chauffeured along Ottawa’s renowned canal and out to DB’s house in a white stretch limousine.

The evening, by all accounts, was a wild success. (DB’s mother deserves a commendation and award for making it a very special occasion—something all the students, and parents, will talk about for a long time to come!) When I arrived to pick up Jessie, I found her seated on a chair like a princess, enraptured by the show DB was giving—a hip-hop song and choreography composed for and dedicated to her. His intense performance was matched by her intense response—an electric current that ran almost visibly between them.

When we arrived home around midnight, I sent Jessie up to get ready for bed while I finished loading the dishwasher. Then, I heard a bizarre tearing/whooshing/scrunching noise echoing down the stairwell. Having admonished her to be quiet because Dan was already sleeping, I went upstairs to see what midnight madness was occurring.

Jessie was trying to shove a large amount of paper into her small room-size garbage can.

“Jess! What are you doing?”

“Getting rid of Joe Jonas,” she replied as she waved her arm across the room, calling my attention to the now bare (previously plastered with Joe Jonas posters) wall beside her bed. The noise I had heard was the sound of posters being torn off the wall and squashed into the garbage pail.

“I’ve outgrown the Jonas Brothers. I don’t need them anymore. I have DB!”

I stood there stunned—it was a moment I had always prayed for (the absence of the Jonas Brothers from our basic house décor and background sound), but now wondered if I was really ready for it.

I then turned and caught her just as she was about to cut into a group grad photo that one of the parents had printed off and given to each of the students when he came to pick up his daughter from Drummer Boy’s party.

“What are you doing?”

“Cutting out me and DB. I’m going to put THAT on the wall beside my bed!”

Jessie has truly graduated.

Friday, June 17, 2011

True Love, Hockey, and Values

In the midst of the madhouse of Jessie hosting her PATH (a planning session for her future held last weekend) and the rehearsals for the Propeller Dance show (this weekend) she has had time to follow (just on radio and the newspaper) the Stanley Cup and Vancouver’s trouncing. Never mind that a year ago she would not have been able to correctly name even one NHL team, she now pounces on the newspaper (another first) to see the hockey scores because the love of her life—Drummer Boy—is an avid hockey fan. This morning’s newspaper was, of course, filled with the debacle of the rioting in Vancouver that followed the Canuck’s loss. Jessie was upset. At the loss that is, not the riot.

Drummer Boy says the Boston Bruins [I didn’t even know she knew the name of the team!] don’t deserve to win!”

“Jessie,” says Dan in a firm voice that he rarely uses. “It was a RIOT! . . . over a HOCKEY GAME! We have to have some perspective here. Rioting over a hockey game is just not right!”

“But Dad, Vancouver should have won! It’s not fair!”

“But a riot? Come on Jessie. You have to have some values. And not just agree with Drummer Boy on everything.”

I do have values,” says Jessie with pride and determination, “And one of my values is Drummer Boy!”

This is where Dan kicks me under the table to let me know that this might not be the time to give her one of my lectures/rants, as it would probably not have the desired impact.

Final score: True Love 10, Feminism 0.

Friday, June 10, 2011

Demit With DeLight!

Its official. Jessie just had her last day of school! she is formally demitted from the public school system, and now the real adventure begins!

Stay tuned! No time to write because her calendar looks like this.





And I am overwhelmed with this sense of bittersweetness and liable to burst into tears at any moment.

Monday, April 11, 2011

Toenails

“But who will cut his toenails?” she asked despairingly. She was an older mom sitting beside Dan and me at a meeting we went to when Jessie was still quite young. I think it was about futures planning. Dan and I looked at each other and thought, “Bhah! What kind of concern is that? We don’t care about stinking toenails! We’re more hip, more progressive than that!” We were much more concerned about inclusion and education and friends. We were, well, a bit smug.

Neither of us remembered this incident until last week, when, after Jessie had gotten out of the shower and I had to remind her for the umpteenth time that she needed to actually DRY her skin, I began to fret over the little details that were hindering her full ascent into independence. It isn’t the larger issues—such as expressing herself or taking the bus—that are the problem, but the so-called smaller issues—such as closing the front door and turning the tap off completely. And my mind began to drift down the list and I became more and more agitated as they added up. I finally turned to Dan—who has invested a whole bunch of energy with me into this planning for Jessie to move away from home at some point—and wailed, “But WHO will cut her toenails?” in deep despair. Yup, the only thing standing between my daughter and full independence were her toenails! I had turned into that Mom who had wailed the same fear so openly at that meeting long ago, and now I understood.

The next morning I called my friend Claire, who always has sage advice and an uncanny sense of perspective. Without even saying hello first (thank goodness for call display) I blurted: “Can Julie cut her toenails?” Claire paused. I think she is used to these random calls from me and actually takes the time to think about my panicked questions. “No,” she said, adding, “And she doesn’t know how to trim or file her fingernails properly either.” “What about her hair?” I asked. “Is she good with her hair? Like, does she rinse it properly?” “No,” replied Claire, “What about Jessie, and her face?” she continued, “Can she wash and tone and moisturize it? Every day?” “Ha!” I replied. Now we were on a roll and kept adding to our list: toenails, fingernails, hair, skin … These were all the things our children did not master while we were busy including them in schools. But then those in segregated settings didn’t seem to have learned these skills either. So possibly, it had nothing to do with the schools and everything to do with us. Oh, here we go again! Blame the mothers!

Well, if we were going to be blamed, we might as well try to find a solution. However, one of the things that Julie and Jessie have in common is an uncommon ability to totally ignore any small (or large) skill their mothers might be trying to teach them. Mothers are unfortunate appendages best left ignored, unless needed for transportation.

Claire came up with a brilliant solution. Figuring that we probably weren’t alone in having failed to teach our daughters the rudiments of self-care (or having failed to teach them to care about self-care), we would find others who wanted to join us and hire someone to do it for us! We would approach estheticians that we knew (Claire and Julie have pedicures regularly and Jessie knows a delightful young woman, Athena, who does her eyebrows) to see if they might be open to developing a series of workshops specifically for our daughters. Each session would focus on one aspect—like nails, hair, or skin—and teach the girls the very basics in a very hands-on manner.

Okay. So here is where those of you with younger children shake your heads and turn away saying to yourselves … Wow! Get a grip! You older parents really have your priorities screwed up! But the crone here, who has earned every wild gray hair on her head—and in her eyebrows, which is why she needs an esthetician—says: start early on the toenails! Or they’ll trip you up every time.

Thursday, April 7, 2011

Time of My Life

Really. Here I am working diligently, hard, in the back room that is my office. Jessie has come home with her new boyfriend, whom I will call Drummer Boy (because he plays the drums, luckily we don't have drums ), before I drive both of them  to H'Art studios for a new Thursday night art session (where old boyfriend, Tall Thing, will also be, that should prove to be interesting!).

They are in the living room. Talking. I am in the back room. Working.

Jessie comes in and turns on the stereo, thoughtfully. She mutes the speakers in the back room, leaving the ones in the living room on where she and Drummer Boy sit. I wait to hear maybe Disney, Miley Cyrus, Selena Gomez, even Blink 182. I listen and expect to hear dance music, hip hop, funk. Because they both love to dance.

But instead, loud and insistently filled with gag-reflex romance (okay, guess I'm old and have turned more toward jazz) and hormones (the teen ones, not the middle-aged faulty ones) I hear "Time of My Life." From Dirty Dancing.

You know the one: I've had the time of my life ... and I owe it all to you ... and lots of oh babies and woooo hoooo and mmmmmmm and with my body and soul I want you more than I'll ever know... and then lots of silence from that front room.

Hmmm. Gotta go!

Wednesday, March 30, 2011

Jessie Flips: About Living in L.A.--The Nicer Part!

We're still going over the videos that Jessie took in L.A., but one particular on-camera essay deserves a posting, particularly in these rough and uncertain financial times when a good place to live can be hard to come by.  According to Jessie, you can avoid the nastier parts, just let it go, and live in the nicer areas! Because living in the nicer areas (of course) is based only on one's desire to live in the nicer areas. Glad we got that straightened out. Now she just has to share this with Obama (and Harper).  video

Monday, March 28, 2011

A Week of Greek: Chronos, Kairos, & Agapé, or Why I Haven’t Posted in a Long Time

When Dan and Jessie were away in L.A., I found myself bereft of my usual anchors and schedules—the things that tether but that also keep me grounded. I am rarely without my family in my own home for longer than two or so days at a time. I have left them to go on retreat or to canoe or kayak, but I am always with other people (even if those other people are silent!). But I had never had such an expanse of me—in my own home, in my own environment, with my own work and work routines—before.

While the trip to L.A. was Dan’s gift to Jessie, I think it was also intended to be a gift to me. An expanse of Nancy-ness for me to fill in whatever way I wanted. It was a strange expanse, because it was still bounded by certain daily and typical demands—the cat needed to be fed, the house vacuumed, freelance editing completed, food made, e-mails checked. But I also had a certain degree of choice about how I would spend my days that offered up freedom for either doing or being. I have to admit that when confronted by the doing list (more laundry, paint a room, patch a ceiling, deep wash a floor, declutter the family room), being seemed the more enticing (or needed?) of the two.

It was not so much a question of filling time—or, as the Greeks would have it, chronos, chronological or sequential time—as of opening myself up to time, kairos, or God’s time. Kairos, as I understand it, is kind of the time in between, a moment out of time when something special happens or is ripe for happening. You have to be fully present to experience kairos; you can’t use it (as you can chronos), rather, if you’re lucky, it uses you.

Now that I have adequately muddled you and demonstrated why I was not a classical scholar in university, I will continue with the Greek theme that haunted me the week they were away. Because having chosen NOT to use chronos to get chores done, but to open myself up to kairos (to see the limits of my un-doing), I was catapulted right smack into agapé. Yes, I hear you gasp in fear and trembling, agapé. A not-so-distant relative of chronos and kairos that lurks in the shadows waiting for dazed and confused parents of young adults to stumble around the corner before attacking them with the true and hence accusatorial meaning of LOVE.

Because, you see, in opening up to kairos I decided to delve back into Madeleine L’Engle’s Crosswicks Journals and was reading the first in the sequence—A Circle of Quiet. In it she offers a definition of agapé (pp. 158–159) that brought me up short—with an unexpected snort of laughter and a sudden stab of revelation.

L’Engle writes, “[A]gapé means a profound concern for the welfare of another without any desire to control that other, to be thanked by that other, or to enjoy the process.”

There, in concise and precise detail, is the definition of the greatest challenge God has ever offered me—the challenge of parenting and loving a young adult through transition. Because, you see, I realized after reading this definition that I had this deep desire, this longing, this absurd need to control aspects of Jessie’s learning and life (Hooray! She remembered to sort her laundry AND wash it before drying it); to receive some appreciation from her for making my schedule her schedule (Thanks Mom, for sewing the costume and driving me to the performance on time when I only told you five minutes before I had to be there); and to experience some small measure of joy from the act of parenting (I really like this part where we argue and argue and argue and then we get to get up in the morning and do it all over again!).

And I was jealous. Jealous of all those other parents of teens in transition who profess deep and abiding love for their children because said children are learning and practicing new skills (that don’t involve lying or ingesting banned substances or breaking laws); and their children thank them (really, and not in that sarcastic way that I do get to hear daily: “Gee, thaaanks Mom.”); and they admit to really enjoying the process of parenting and learning from their teens. Like, whose children have they got and how did they get them?

But I am beginning to see that I shouldn’t be jealous, because they aren’t really being given the same chance as I am to learn about agapé now are they?

And that I should shift my focus from wanting a sort of ego pleasure in parenting to learning to lean into the hard parts so I can grow. In love, and maybe even in understanding what it is to love.

The final lesson perhaps, is to never let your family leave you alone for any extended period because you might be reduced to contemplation, which might change the warp and weft of your being and hence cause confusion in the family unit.

Tuesday, March 15, 2011

Living the Dream in L.A.

I called Dan and Jessie in L.A. yesterday morning to see if they were surviving. The last time I spoke to Dan was a hurried call the morning they arrived (after flying across the country all night and not really sleeping) when he asked me if it was okay to give Jessie Pepto Bismol and if it was normal for Jessie to ask why she was vibrating. Huh? I just said yes, okay for Pepto-Bismol and anything is normal for Jessie on the road and then went back to my Lenten readings thinking L.A. is in the desert right? So Dan gets the wilderness, I get the honey, and I’m not going to ask any more questions!

When Jessie answered the phone, she exclaimed, “I’m living my dream!” I guess the Pepto Bismol worked!

It turns out that the day before they had walked along Hollywood Boulevard and when they got close to Grauman’s Chinese Theatre (where all the stars' hand and other prints are) there were buskers in weird get-ups and loud music blaring. Jessie looked, listened, and then—decked out in her new bright pink sparkly Hollywood t-shirt and sunglasses—began to dance, doing her hip-hop choreography to some Rihanna tune. She refused to look at Dan, who was madly miming for her to stop, and just sucked up the attention as people stopped to watch and then looked around for a hat or some other receptacle in which to place money. When they saw Dan—who had by now surrendered and was filming it on the Flip (we try to chronicle all our daughter’s forays into madness)—they asked if he was her father, and then complimented him on her dancing.

According to Jessie, all their plans for the day were thrown to the wind and they were going back to Hollywood Boulevard. This time she was going to make Dan bring his baseball cap. They’ll either get rich, or arrested. Yup, she’s living her dream.

Thursday, March 10, 2011

Wednesday, March 9, 2011

LA for March Break

Jessie and Dan are getting ready to go to Los Angeles tomorrow for March Break—Jessie’s 21st birthday present from Dan and me. Part of the birthday present is me not going! As I am not the Hollywood fan and as Dan knows LA, we thought it might be much more fun (and economical) for just Dan and Jessie to go.

I, though, get to help pack and make lists, as I am a very good list maker. I say this with some pride, although I am not sure why, as my family seems to see my list making as an anal attempt at total control. While these lists are meant to keep me on track and allow Jessie to be fairly independent (the idea being that by following the list she can complete any one of myriad tasks independently), it never quite works that way. The lists that I make for myself seem to be accusatory compilations of what I have NOT gotten around to and the ones I make for Jessie serve as stimuli for sequential topics of contention (hmmmm, let’s see, there are 8 items on this list; I wonder if I can get Mom to argue about each one of them and how many I can get through before she has a melt-down?).

However, we have made lists for this trip:

Dan’s list looks like this:
* 2 pairs of pants, 5 shirts, 1 fleece/hoodie, socks, shoes, underwear
* Gaviscon for Jessie’s anxiety- and pizza-induced acid reflux, fuciden for skin infections because she forgets to wash her hands, lots of batteries for the iPod and the Flip, whatever else Nancy tells me to bring that I will pretend to bring but leave behind because she always over packs and doesn’t really know how to travel light

Jessie’s looks like this:
* iPod, iPod, iPod
* crocks
* notebook for writing lyrics so I can get discovered and lots of black pens for writing lyrics
* make-up to look good for when I am discovered or meet a star
* money to buy milkshakes at Millions of Milkshakes where I will drink my favorite drink and maybe get discovered or meet a star
* sparkle guitar t-shirt so I might get discovered or look like a star
* some clothes, but only those with sparkles, the other ones mom tells me to bring I will hide under my bed because she doesn’t really understand what Hollywood is all about and just doesn’t get my STYLE!

And after much careful consideration and editing, mine looks like this:
* Drive Dan and Jessie to the airport

I figure that way, we will all be very happy.

Sunday, March 6, 2011

Recovery

I was worried that it would take Jessie a while to get over her break up with Tall Thing. She can sometimes obsess about stressors, “rude” words, her health, and relationships. I guess that makes her pretty normal.

But I was reassured when yesterday, as she got into the car after drama, she announced that she was writing a new song.

“Oh?” said Dan, “What’s it called?”

“I’m Single and Ready to Mingle!”

Guess she’s over Tall Thing!

Thursday, March 3, 2011

Exploring: Y's Owl Maclure

Transition Meeting
On Tuesday, we had a meeting at Storefront to talk about Jessie’s transition out of school and what she might do next year. While T&N (the teacher and the job coach at Storefront) say that we are ahead of some parents in exploring what the options are, we feel very far behind! It’s all one big mishmash out there of things that don’t quite fit Jessie. However, the one thing we are all agreed on (that’s Dan, Jessie, and I) is that we want her to keep learning and growing the way she has at Storefront. For example, she now wears her watch all day long and actually checks the time; she initiates and has conversations with her peers during lunch instead of always withdrawing to write in her notebook; she is able to sort, categorize, and place items in their proper places (organization and categorizing never her strong suit!); and instead of bursting into tears when faced with criticism or being told that something she had her heart set on is not possible right now (such as landing a role in the Jonas Bros. TV show), she removes herself from the room (to bust into tears—hey, baby steps!).

Time-Filler, Time-Killer
We don’t want to sign on to a program or make a plan that is just a time-filler—killing time while you are waiting for something more real to happen… like what would that be? But, on the other hand, we would be likely to pick a time killer, something that was half a step backwards (but not a full step backwards) if there was nothing else that would keep her growing and out in the community. Unless, of course, we won the lottery and we could hire someone to do all coaching and finding and networking required. We learned last summer that while I am a great resource person and connector and planner, I am not her best coach, nor her best teacher, and she still needs (and wants) both.

Because the reality is: she is still in the exploration stage, developing skills, honing her interests, finding out what she is good at, and (as well) what she just sucks at! And that’s okay. Actually, that’s more than okay, that’s great! The big question is how to best support that.

Inclusive Post Secondary Options Few and Far, I Mean Really Far
While an inclusive college or university program—such as those in British Columbia or Prince Edward Island—look like perfect fits for what Jessie says she wants, we don’t live there and aren’t really about to move. In addition, Jess is definitely not ready to live in any kind of residence situation, unless fully and appropriately supported, and the only programs like that exist in the U.S. and at exorbitant prices that we can’t afford. And this is where I restrain myself from beating myself up for not having the foresight or energy to create something like that here in Ottawa. (I am giving up self-flagellation for Lent and am preparing myself for the shock by practicing publically on this blog.)

Range of Options in Ottawa
And the range of options for exploration here in Ottawa is rather minimal, which means we will have to get creative. Sigh. But for the first time in a long time we met someone from an organization who has some ideas about getting creative and linking Jessie’s gifts, passions, and gaps to what is out there in the community. HOORAY! Many organizations say they know how to teach reading and writing or basic frontline retail or baking or gardening skills, but have no idea about what to do with someone who wants to be involved in the arts. So we’ve just used them for those skills (and great skills they are) and tried to sort out her great strengths on our own within the arts community.

Y's Owl Maclure
T&N invited Ms. Bright Smile (that’s what I’ll call her for now!) from Y’s Owl Maclure to Jessie’s meeting and she kindled a bit of hope in us for next year. Y’s Owl does have a program (called Follow Up) that provides continuing job coaching for students who leave school with a job (or a volunteer placement). The coaching can be at more than one placement. And while it is really just maintenance support, it means that many students can continue with their work or their work experience placements with a degree of support.

You are probably wondering why this excites me. As I write it, it doesn’t sound like hot $%^%$. But it allows Jessie to continue to volunteer with the Food Bank (a great and positive experience), while being involved in the community and exploring her interests (like taking a course in media studies at the local college, continuing with Propeller dance and pushing her dance by taking other classes, working on a drama certificate with Ottawa School of Speech and Drama, maybe even H’Art studios and voice lessons or a healthy eating class at the local health centre, or [because we never say never] preparing for college or university). The trick will be managing it, and I think we can figure out a way to do that with a little bit of help (hooray for Sophie and the planned PATH coming up in the spring).

Building a Foundation
The other reason it excites me is that Ms. Bright Smile had some ideas about how to hook into the arts community and to develop learning opportunities for Jess. She was also able to look at the big picture (of a life) and see it as a work in progress. Lots of bonus points.

And the final reason for our interest and excitement is that if Jessie is receiving support from them in the Follow Up program and we put her name on the list for their Foundations Program, they will already have a good sense of who she is and it might make it just that much easier for them to create a fit when an opening arises.

The Foundations program is for individuals between 21 and 28 and is “aimed at assisting young adults with developmental disabilities to make a successful transition from school to a wide range of community participation activities and work. . . . Staff work one-on-one with young adults to explore a variety of support and services in their community in order that they may make informed decisions to direct their own future.” The point being, I think, that it is person-centred and based on the individuals gifts, interests, gaps, and goals.

Life, the Universe, and . . . Nothing
Okay. I realize that this post is mostly a list of what we did. But in trying to chronicle these transition years, some days are just days where you list what you did or explored. They, perhaps, will set the context for some other more pithy or moving post that offers insights into life, the universe, and everything (apologies to Douglas Adams). Or they may not. I will end with one word (okay, number). 42.

Tuesday, March 1, 2011

Jessie Flips: About the "R" Word

Jessie flips . . . a day early, because she wanted to encourage you to join the thousands of others pledging to end the use of the R word to promote the acceptance and inclusion of people with intellectual disabilities.
video

Monday, February 28, 2011

Let's Be Clear

Okay. So let’s be clear—we love our daughter, we really do. With all our hearts. But there are times, like this weekend, like Sunday afternoon from 1 to 3 pm in particular, where Dan and I are tempted to drop her at the bus station with a one-way ticket to Timbuktu.

It was between 1 and 3 on said afternoon that our family had a major confrontation about chores not done and plans in jeopardy (Jessie having her friend Rachel over for pizza and TV) because said chores were not done.

It was a busy weekend—that is true (Saturday morning Jessie helps teach dance, Saturday afternoon she has drama, Saturday evening was a karaoke night at the community centre hosted by Lifetime Networks Ottawa). And I did not sit down with Jessie on Friday night and have her develop her usual weekend planner (see image)—that is true. And she did have a lot of laundry and other chores to do—that too is true.

But she is expected to do her chores, and we are pretty clear about that. In fact, I can’t think of a weekend (other than those when she hasn’t actually been here) when she hasn’t been expected to do her chores. We certainly give her freedom in letting her determine when, and we certainly give her support in providing her with checklists so she knows what is expected of her. We certainly try to model actually doing the chores. And we certainly provide a structure and tell her when those chores need to be done by. That’s pretty clear, isn’t it?

Jessie herself had a plan for getting all her tasks done and had written it down . . . all the steps that led up to the evening including: doing her chores, going the bank and getting money out for the pizza, finding the phone number for the pizza, cutting up veggies (the healthy counterbalance to the pizza), making a curry dip etc… That indicates a certain understanding and commitment to getting certain tasks done, doesn’t it?

And yet, when I came back from church on Sunday, I found Dan huddled under a blanket on the family room couch muttering to himself and Jessie singing and dancing upstairs in her bedroom to some loud Disney-esque tween star music.

Apparently, or from what I could gather from Dan’s mutterings, Jessie was not able to complete even one of her chores in the four hours that I was gone without getting sidetracked, and despite numerous reminders, which he is trying NOT to do because he wants to give her some freedom and was hoping that she would step up to the bat because here HE was doing chores and being a good role model, but oh no! And there is no WAY she would survive out there on her own and how on EARTH is she ever going to pursue ANY of her dreams if she doesn’t have the discipline and gets so DISTRACTED and . . .

I refrained from saying “Welcome to my life”—I had, after all, just gone to church—and instead called Jessie down. Our discussion quickly turned into a yelling match with Jessie having a meltdown and insisting that Rachel was coming over no matter what! and they were ordering pizza no matter what!

What it came down to, once we had all calmed down enough to let Jessie speak without interruption, was that we, apparently, had not been clear. “OH!” she said, when we pointed out the list of tasks that had to be done—but were still undone—before Rachel came over. And then she looked at us straight in the eye with an accusing glare, “But you weren’t CLEAR!”

It was at that point that Dan and I got in the car and drove to the bus station to buy ourselves one-way tickets to Timbuktu.