Saturday, July 31, 2010

Jessie Speaks: About Dance

I love to dance it's one of the ways that we can all express ourselves. And we get to see who we truly are. It's a blessing, gift and talent that god gave you. In my opinion dancing is relaxing and it can help relieve stress. You can believe in yourself. For me it's hard balancing school life and dance life i just wish that it would balance out. The more I’m educated the more I want to dance, teach and perform.

Friday, July 30, 2010

I'm NOT Going to Tell you

It used to be that “I’m NOT going to tell you” was a statement of avoidance—of responsibility or of a reprimand. As in: Jessie, have you brushed your teeth yet? I’m NOT going to tell you (well, you already did). Jessie, have you finished your homework? I’m NOT going to tell you (hmmm, let me guess). Jessie, did you spill this juice? I’m NOT going to tell you (here’s the cloth, dear). Etcetera ad infinitum (to make use of the Latin that my parents paid thousands of dollars for me to learn at private school).

However, as Jessie has entered adulthood, “I’m NOT going to tell you” has taken on a new, albeit equally clear, meaning. As in: Jessie, have you brushed your teeth yet? I’m NOT going to tell you! (yes I have, but its none of your business because they are my teeth). It is a clear statement of independence. It means (if I have the translation right, and given that I do have some Latin (see previous note) I am highly qualified to interpret): stop asking me these questions, what’s it to you, as IF you have any control over me, get a life, don’t you have something better to do?

I look fondly back on those days when I’m NOT going to tell you supported my reputation for omniscience, although I’m not sure why. It reminds me of Jessie’s quip that I have pasted to one of the kitchen walls:

Me: Jessie, your behaviour is getting out of hand.

Jessie: No it’s not, it’s handy.

And what would even be the point of trying to reply to that one?

Thursday, July 29, 2010

Jessie Speaks

Yesterday I finally convinced Jessie to begin her blog entries! While I am too ensconced in work right now to actually lead her through setting up a blog, she is keen to write about what she cares about. That, plus I've told her that if she doesn't write then it's only my voice and my point of view and I'm sure that makes her very nervous, especially these days when I seem to be on her case about everything.

I've realized just how many prejudices I have about what is a valuable way to spend one's time. If she read a book all day it probably wouldn't bother me as much as her spending hours on the computer on the Disney/Camp Rock site. My whole approach to parenting Jess has been about leading her to her own sense of self and then sharing it with the world. About venturing out into community to challenge, build, and make new connections. While we have a fair measure of that this summer (Jessie volunteered with the library, has been helping out with front of house for Company of Fools, our local Shakespeare-in-the-park theatre company at least 2 times a week, and has been teaching dance workshops), there is still too much down time. Or that's my opinion, and I'm not sure how valid it is.

Its the first summer that she hasn't been in a program (again, always a generic program and rarely one designed only for children/youth with special needs) and we are feeling our way through this transition into whatever it is that 19- and 20-year olds do in the summer. Work is not yet an option, but I am also realizing that fighting with your parents over how you spend your time is pretty typical. We sometimes forget just how typical our kids are and think that many of our challenges are due to their so-called special needs, when in fact they are mostly due to their very typical needs (the need, for example, to separate from your parents!!!!) The challenging part is meeting those needs. Still haven't figured that one out. When I do I'll let you know!

So Jessie has gone off this morning to the local coffee shop to buy me coffee and to sit and write in her journal. Now that seems pretty fine to me!

Here is Jessie's post from yesterday:
Hi. My name is Jessie Denise Huggett I’m 20 years old and I have Down syndrome and I am the daughter to Nancy Huggett and Dan Lalande. I like music, songwriting, singing and dancing. I dislike people who laugh at me and judge me just because I have a disability. I can still live a normal life and my mom and I are strong advocates and we fight for my rights and my needs and they need to be heard.

Today I taught a dance workshop for youth with my friend and co-worker Ximena Puente. She excels in dance and in helping children. Ximena and I are teaching assistants in the kids dance program and the ages are three to six year olds, and seven to eleven year olds on Saturday mornings.

The Propeller dance performing group is a non-profit organization and it is the only fully integrated dance company in all of Ontario. Propeller does a lot of outreach workshops and they have a school project where they make dances and they tour schools and perform and they ask the kids about what they saw. Propeller also has a website at

Wednesday, July 28, 2010

Rolling Around In My Head

I just found a wonderful blog—Rolling Around in My Head—by Dave Hingsburger, a disability rights activist and advocate who works out of Toronto. I first ‘met’ Dave when I was looking for resources on sexuality and people with intellectual disabilities. He has done a lot of work in this area and has written some excellent books. (Just Say Know! is one of them.) Dave’s blog has won a number of awards . . . and I can see why! Check out this entry about an overheard conversation (one of my favorites, overheard conversations that is) between a young man with Down syndrome and his mother. Down Syndrome, Off the Clock. We would ALL (but mothers in particular) do well to listen to what the young man is saying.

Tuesday, July 27, 2010

Hit the Re-Parenting Button

On our way from Montreal to Montebello on the weekend, we used the GPS to help us navigate a planned detour to St. Andrew’s East (to visit Hill Head Farm where my father spent his summers and holidays). Dad had one way of going, the GPS another. Since it was my father’s birthday, we followed his directions. But I kept the GPS on, just for fun, and was regaled with “re-calculating” every time we strayed from the GPS road plan. While this was annoying, particularly to Jessie who just wanted to listen to her music and get to the brunch, it kept us on track and heading in the right direction.

I can’t say as much for this summer, which has not gone at all according to plan and seems to have completely lost its direction, at least as far as Jessie is concerned. My thoughts of structuring her day around new skills (chores, volunteer work) and fun (dreams and goals, friends) seems to have devolved completely into a struggle over just getting her off the computer and out into the world.

So for my birthday I’m going to ask Dan to exchange the geographic GPS for a parenting one. A model that has an automatic “re-parenting” function that I can hit when we go off track. Now THAT would be worth the investment.

Monday, July 26, 2010

Two-Stomach Legacy

It is my father’s 80th birthday on Wednesday and this past Sunday we all—Grumps, Grams, Jessie, Dan, I, my brother Bill and his partner Leigh-Anne, and my other brother John—drove to Chateau Montebello on the Ottawa River for its renowned brunch.

Chateau Montebello used to be known as The Siegneury Club, and my father remembers when his father was a member and they would go there in the winter to skate, ski, and sled. It’s now owned by Fairmont and is an upscale yet rustic resort with biking, hiking, horseback riding, fishing, spa, and a famous Sunday brunch to die for!

We figured this would be a great way to celebrate my father’s 80th, as large and sweet brunches are his menu of choice. In fact, he shuns any foods that don’t look like they have either a) been processed or b) contain heart-stopping amounts of sugar and cream. While my father will pick at a salad or a delectable plate of steak and fresh green beans, he has been known to eat third and fourth helpings of praline ice cream with butterscotch sauce and a large side of carrot cake.

When Jessie was little, we tried to convince him that he needed to set an example and could he please eat all of his dinner before dessert, and limit his dessert to what might be considered a reasonable helping. In true paterfamilias style, he came up with his own solution to our effort to keep Jessie eating healthily. He explained to Jessie that he was unique in that he had TWO stomachs. One for regular food and one for desserts only. The dessert stomach was significantly larger than the regular stomach, hence his ability (and need) to eat just a bit of the main course, but 2 or 3 helpings of dessert.

Jessie quickly figured out that, since she was Grumps’ granddaughter, and since she had an extra chromosome and therefore had extras of everything, she also had to have at least 2 stomachs, just like him. And there began their absolutely delightful ascent into dessert heaven. “Gotta feed that extra stomach!” is the refrain at the dinner table when we visit in Montreal, and out comes a frightening array of dessert cakes, ice creams, and sauces. My father smiles sheepishly, Jessie grins full out!

Never mind that he was the top tax man in Canada and Chair of the Montreal Board of Trade in his day. His true legacy, to Jessie anyways, is his second stomach.
(in picture: Grumps, Jessie, Leigh-Anne)

Tuesday, July 20, 2010

Independence Requires a Rescue Plan

Thank goodness our local mall (Billings Bridge) is only a 2-minute drive from our house. A 15-minute walk, but a 2-minute drive. This is important when you need to drop what you are working on to rescue your daughter from a traffic island in the middle of the parking lot of a busy shopping centre.

This morning I sent Jess off on an errand. To the mall (a favorite) to buy her choice of bread for dinner and birthday cards for my mother and father. This is my way of building in time to work when there are no friends and/or planned activities for her to do on a particular day. My way of ensuring that we have a least a few hours where we are not fighting over what to do.

While I could think longingly back to the days when I wasn’t working in the summer and had long stretches where we could do interesting things together, who am I kidding? What 20-year old really wants to spend much of her summer hanging with her mom? Okay. There are some. I even know them! But their moms are much more interesting than I am and seem to come up with fun things to do, which is why I often send my daughter over to their place. Instead, Jessie is stuck with a mom who works from home and can be very cranky when she is trying to edit tables of figures and is interrupted by Miley Cyrus singing Party in the USA at about 85 decibels.

(Note: anything at 70 decibels—such as freeway traffic and a vacuum cleaner—is classified as “annoying,” according to the Dangerous Decibels Teacher Resource Guide. 80 decibels will result in possible hearing damage, 90 decibels in serious hearing damage. Anything with Miley Cyrus gets classified by me as being the equivalent of the 120 decibel range—“human pain threshold.”)

So Jessie gets dressed and heads out the door with the shopping list in one hand and dreams of the Zellers movie section in her head. “How are you getting there?” I ask. “I’m walking. That will be my exercise,” she says. I don’t say anything about that scary intersection that is the only way to get into the mall by foot. I consider telling her to take the bus (which would deposit her at the bus entrance, which doesn’t require crossing lanes of turning cars and drivers who are surprised by the sudden appearance of pedestrians), but I just lambasted her yesterday for not stretching outside her comfort zone (i.e., going somewhere without me driving her), so I leave it. She’ll either figure it out or get killed trying to cross the parking lot.

This is the difficult balance in parenting a person with special needs. Just how much risk are you willing to take? On the other hand, just how much protection can you provide without taking away their power or their sense of efficacy? I do have visions of an article in the newspaper tomorrow about an accident involving a young woman with Down syndrome and readers writing in to ask “Just WHAT was that mother thinking of?” But I push those visions aside and Jessie out the door.

I go back to work. Twenty minutes later the phone rings. “Uh, Mom. I’m kinda stuck here. I can see MacDonald’s and the mall, but I don’t know how to get there. There are too many cars.” I do a quick think. Hmmm. How do I really know where she is and would it even be possible for me to guide her across the lanes? While cell phones have been a lifesaver, I now need a video camera that can transmit to my computer so I can guide her over the phone! Next best thing: “I’ll be there in 5 minutes. Can you wait?” “Okay.”

I hop in the car and drive over, parking near the white-lined walkway that is a substandard imitation of a crosswalk. I look for Jessie and see her stranded about 200 metres away on a small island in the middle of cars turning into and out of the mall at what looks, to me, at breakneck speed. What, does no one pay attention to stop signs in mall parking lots?

I take my own life into my hands (or feet, as the case may be), and walk to where Jessie is, then guide her gently and safely back to the crosswalk. We stand there together watching the cars wiz past, until one slows down. “Make eye contact,” I say. “Don’t move until you make eye contact with the driver and you know that they see you.” We walk across together and she hurries away from me into the mall yelling “Bye!” over her shoulder.

I climb back into the car and drive home. I make sure that I come to a full stop at each and every stop sign in the parking lot.

And my husband wonders why I complain about not being very productive on days when Jessie is home. . .

Tuesday, July 13, 2010

Smeyesing and Rachel

Jessie went off on her own yesterday morning to get her hair cut and her eyebrows done (she is a true Canadian with the requisite unibrow, if left to its own devices). She called me on the bus on the way home, very excited. “Mom! The bangs were too short and in my eyes, so she curled it and braided it out of my eyes!” Jess is in heaven when her hair gets curled, a throw-back to her Shirley Temple obsession.

When she got home, she did indeed look beautiful, so I took out the camera and we sat outside for a photo. I wasn’t sure how long she would be able to leave the braid in, as she undoes anything physically put in her hair (as well as on her body, like jewelry or belts—I’m sure there is a sensory issue here, but have just learned to live with it)
“Jess, smile!”
“Mohhhhm!” She intones disdainfully. “I’m smeyesing!”

How stupid of me not to notice! Smeyesing is, apparently, smiling with your eyes! That’s what we learned yesterday from Rachel when she joined us at the local pool for the afternoon and dinner that evening (the girls, of course, wearing their tye-die shirts from yesterday). Rachel doesn’t travel very far without her camera, and she is a wonderful photographer. She also has the delightful capacity to play with it with her friends—producing everything from artsy film-noire portraits to kitschy, posed, America’s-next-top-model parodies.

Sunday was a parody day. Hence “smeyesing,” which Rachel (in her wry and witty observational manner) informed us was de rigour for all top models. She knows this because she spends her nights, when not out with friends, trawling internet TV and has spontaneous and short-lived obsessions with various reality, drama, and documentary shows. Her passions range from (of course) America’s next top model and House to gory realistic medical procedure shows and late night interviews with Nobel prize winners.

Sunday was a top model day and Jessie was delighted to play. . . right through to the ride home at night, where the girls photographed each other in zany poses with the wind from the open window blowing through their hair.

And as I sat in the front seat driving through the darkness with sudden flashes of light and laughter as they took pictures, I thought about how lucky we are to know Rachel—a fresh wind blowing through our lives and blessing us with random bursts of delight.

Monday, July 12, 2010

At the Cottage

Last Sunday, just as the heat wave started, we were invited for a wonderful idyllic day at a friend’s cottage on a lake in Quebec. The three girls—Jessie, Julie, and Lizzy—giggled and swam and lounged and sang high school musical karaoke songs that drowned out the motor boats and the woodpeckers. Siblings variously hid and rolled their eyes, or went out tubing. Moms sat on the deck sharing stories, Dad’s down on the dock sharing whatever they share as kids, dogs, and spouses nattered and scattered and then generally left them alone.

It was such a wonderful relaxing time, as the girls were left to their own devices and found common ground in giggles and country music star dreams. Jessie and Julie have known each other since almost birth, and have an on-again-off-again relationship where they sometimes test each other’s bossiness and then come together in their passion for music and concert dreams. They are, each of them different in their basic nature (Jessie is a messy kind of thinker and creator, Julie is more measured and detail-oriented, following plans through to their completion), but share a common love of music, rock star/country star crushes, and of course that extra chromosome. Lizzy is someone we are just coming to know through Julie, and is a shy young woman of 17 with a spark of mischievousness in her deep brown eyes that hints at the joy, passion, and humour that erupts when you get to know her better.

So the girls dibbled and dabbled and giggled and laughed and wandered in and out of the cottage on their own rhythm. Content to be with each other and not to have to work to hard to just be. That is the simple pleasure, I think, in spending time with other people who move at your pace and share some of your passions. And the simple pleasure, as a parent, of letting go and letting your child just be who they are and knowing that it works. That at 20, its okay to be in love with the Jonas Brothers and to plan to go on tour with them. That it’s okay, because others share this passion with you and so totally understand it. Not the case so often, with Jessie’s 20-something so-called typical peers.

It’s the balance I think—between belonging to different communities that do not yet completely intersect—that makes Jessie’s life rich. And it’s a balance that is difficult to find as she matures and transitions into adulthood, and grapples with independence and the degree of support required for her to make her own decisions and go out into the world and find the communities that make space for her to contribute.

I do struggle with this, often and in a very fractured way. Always questioning my values and motives and abilities—as a mom, as a person, as an advocate. I am impatient—with Jessie, with myself, with society. And tired too. But sitting down and drinking coffee (yes, even in the heat Claire knows to put coffee on for me) with the Moms is a balm of sorts. And an inspiration.

Because all the love in the world that I have for Jessie does not always translate into action imbued with lovingkindness. In fact, if you happen to pass by our house in the morning and find the windows open, you might overhear what could only be likened to Alice in Wonderland’s Queen of Spades shouting “OFF WITH HER HEAD!”

But spending time with these Moms inspires me to try harder, to let go and be patient. To go with the rhythm and flow of my daughter’s generous and creative spirit. Because what I see in them, and witness in their interactions with their daughters and mine, is an acceptance and joy in their being. And what I love about gathering together, is the way we can create a space to breathe. Where the common attributes of our daughters—persistence, inflexibility, humour, and a certain ‘je ne sais quoi’ in their social skills—play themselves out in unique ways that are recognizable as both familiar ground and very distinct personhood.

We do, each of us, as parents, wrestle with our own daemons and try to guide our children into adulthood in a world that is still not quite open to them. We move back and forth between battering down the barriers and retreating to a comfortable place where we can all just be people. And sometimes its nice not be told by strangers how patient you are, even if it is meant as a compliment, because the flip side of the compliment is that your child is just so stubborn and trying that it would take a saint to raise them. We are none of us saints; we are all of us, just Moms.

NOTE: permission to use photos granted by Moms, and directly by Julie who Facebooked me with: Hey Nancy how's it going i heard from my mom that your trying to put a picture of Jessie and Lizzy and me on your blog are you joking me good grief okay fine you can put that picture of the girls on your blog if you feel like it okay Julie

Saturday, July 10, 2010

Tie Dye Day

Jessie’s friend Rachel called this morning. She’s been working incredibly hard but has a day off and asked Jessie if she wanted to do tie-dye t-shirts. My knee jerk reaction when I heard “tie dye” was NO!

There is a reason that the kit Jessie was given almost 6 years ago has never been opened… I have spent most of those 6 years hiding it in various places so when Jessie and her friends asked for it, it couldn’t be found. While Jessie and many of her friends delight in painting and crafts—Rachel in particular, is quite a wonderful and whimsical artist, in any medium (see picture of the chair she and her sister Rebecca made for Jessie before she headed off to university last year)—Jessie always seems to get more paint or glue on herself and her clothing than on the paper or shirt or piece of furniture that they are working on.

I gave up being a crafty-type mom when Jess was about 14 and I realized that no matter how old Jessie and her friends got, Moms still cleaned up the mess. Instead, I became a crafty mom, one who learned to misplace key ingredients for the more involved crafts—those that required super-indelible-never-come-off-until-you-die kind of paints and markers and glue.

So when I heard the words “tie-dye” I panicked. “No Mom,” said Jess. “I’m going to go over to Rachel’s to do it. I just need to bring the kit.”

I sigh with relief and relax. But that just goes to show you how low I have sunk, because Rachel’s Mom, my friend Cathy, is away and I am so totally willing to let Jessie go over to Rachel’s and do tie-die, knowing that the ensuing mess might still be waiting on the back deck for her when she returns from Cincinnati later this week. Cathy. If you’re reading this, sorry!

Friday, July 9, 2010

The Road to Independence Is Paved with . . . Boulders

We are surviving the heat wave, barely. But it is certainly testing our plan and our patience. While the picture here was taken many years ago, she cycles in and out of that “you can’t make me” phase. It’s an appropriate image for many of our mornings so far this summer.

Today, Jessie went off to H’Art studios for the day. She will have 3 days there next week, journaling and painting, which she is really looking forward to.

We left the house at 8:50 to get there shortly after 9, when it opens (note, I’m trying to get her there as soon after it opens as possible—say no more, say no more). I’m driving her because the bus routes are not simple and it would be just one more thing to argue about (But I don’t WANT to take the bus, I want YOU to drive me). We get out of the car and walk toward the Bronson Centre, where the studio is located. As soon as we walk in the door I ask her if she remembers what floor it’s on (I really don’t remember!).
WHY are you asking ME where it is?” she complains.
“I was just wondering if you remembered, because I don’t.”
We stand there. (Stand off more like it.) I am waiting for her to figure out that she has to look at the directory in the front hall. She is waiting for ME to tell her where to go (I will not succumb to that easy one-liner).

We wait. I give in and walk over to the directory and mimic scanning it with my finger. I am trying so hard to lead her without pushing her, to teach her without forcing her, to support her without, well, without strangling her! As my finger reaches H’Art 3rd Floor, she nods and heads off but then stops, looking around to figure out which hallway to go down.

I stand behind her, willing her NOT to ask me where to go.

“Which way do I go?”

I am silent. Gently silent I think. I am breathing in and out, saying my mantra, hoping that in the silence she will find an answer!

She looks around and sees the sign on the stairwell that says 3rd floor.

Ta-da! She opens the door and I say a silent prayer thanking God/ess for all his/her beneficence.

She holds the door open for me (brownie points), and then says “You go first.”

“Nope,” I say. “You lead. This is your activity. You need to know where to go when I drop you off tomorrow.”

“I don’t want to know where to go.” (Figure that one out!)

”Jess, it’s just like you’re going on your own.”

She knows where I am leading with this one.

“But I don’t WANT to work on my independence skills!”

I sigh. Consider my options. It’s too early in the morning for me to lose it, really. So I laugh. Outloud. That’s the mistake.

WHY are you LAUGHING?”

“It’s the better and least dangerous choice,” I answer, oh so proud of myself for choosing laughter over lamentation.

And so the day begins.

The Dandelion Book of Life

Last Tuesday, just before the heat wave struck, Jessie and a few friends from Dandelion had pizza here at our house and walked up to the Mayfair Theatre (our local movie theatre—really, such things exist!—that plays almost-second-run films, double bills, great cheesy horror movies, and themed extravaganzas like the Jesus week during Lent/Easter) to see Grease, one of Jessie’s all-time favorites. I think everyone likes going with her because she is so enthusiastic and manages to get almost the whole theatre up and dancing. Last night’s version was a sing-along and according to Dan (who met them at the theatre after the movie was done) they all came out doing just that!

As if singing and dancing wasn’t enough, Jessie was also the proud recipient of her “Dandelion Book of Life”—a collection of photos from her years with Dandelion Dance Company, memories, and wishes from the other dancers. Each dancer, as they “graduate” and move on, receives one of these lovingly and zanily produced albums filled with sayings, photos from performances and trips, and notes from other members of the company.

It is a beautiful reminder of all the wonderful adventures and years with Dandelion and it makes me teary just to look at the cover! It is amazing to me how life-changing experiences can grow out of small opportunities that one says “YES!” to!

Jess first started taking dance classes with Hannah at her Tournesol studio when a friend suggested that Jess would fit right in and thrive there. “Fit right in” is not a phrase we heard overly often with regards to Jess! Given that she loved to dance, and that we had tried myriad dance classes with myriad results, we were uncertain, but willing to give it a go. I called Hannah and talked to her and fell in love! She was energetic, young, creative, and honoured people’s differences and delights. She was not your usual dance teacher, and worked with children’s own natural movements and energy, unleashing what I can only call inspired and inspiring dance that encouraged children to explore and experience their own unique spirits, in relationship to others and the world.

Sounds big. It was! And I would have to say that Jessie’s participation in these classes, with these people, has had a profound influence on who she is, who she sees herself to be, what she has achieved, and how others perceive her. Without Tournesol and Hannah—and the offshoot Dandelion Dance Company—Jessie would not, I am convinced, be as solid in herself as she is. It helped that Hannah had had a younger brother with Down syndrome who influenced her immensely. And so, I like to think, his spirit also lives on in all the work that Hannah does with children, young adults, teachers, and the wider community.

Dandelion, of course, is the lynch pin here. Hannah had encouraged Jessie about 5 years ago to create a dance based on her experience of having Down syndrome. I AM was born, with words by Jessie, music by my wonderful musician/cousin Derek Olive, and choreography by Jessie with input from the other dancers. (For just the lyrics and music I will try to put an audio link in)

What resulted was a wonderful piece about difference and inclusion that just exudes “Jessie.” A hallmark piece that has been performed across Canada and won Jessie a number of different awards, including the Jane Cameron Award for an artist with Down syndrome, a runner up designation in Youth in Motion’s Top 20 Under 20 youth awards, and runner up in the arts category of the CAYFO Spirit of the Capital Awards. It also spawned the creation of the Dandelion Dance Company, after a unique performance at an International Symposium on Inclusive Education here in Ottawa, where many of the delegates and participants wanted the girls to come to their communities to perform the work in schools for students, teachers, and administrators. The girls and Hannah realized just how much power they had to create change, and so Hannah got the girls together over the summer to create more pieces about things that they were passionate about.

The brilliant bit is Hannah’s commitment and insistence that the works be created by the girls themselves—that they reflect their passions, struggles, and dreams and that they go into the world and show young audiences that they can make change happen, and “older” audiences that youth have insights and concerns that we all need to listen to, learn from, and address. Hence: Dandelion—spreading the seeds of change through movement.

It was a brilliant run, Dandelion, and for Jessie the brilliance came from her belonging to a group of young women who were silly, fun, diverse, committed, challenged, flippant, and focused . . . all at the same time. It was the BELONGING that was so important and that will be a very difficult thing to replace. And, it was the chance to make a contribution in a way that reflected her own strengths and honoured her own challenges and the gifts that ensue when a community of people who care work around and with those challenges. An inspiration for me, as to how difference is truly gift and grace.

While Jessie is now a Dandelion “graduate,” Dandelion will always remain a large part of who she is and who she becomes.

Thursday, July 8, 2010

RETRO JESSIE: Shhhhh! Don't Break the Rules [February 2004]

A mea culpa to the Anywhere Library Association for the fear and trembling I inadvertently precipitated. It all started with a very simple email request. At least I thought it was simple. And reasonable, given their goal of promoting literacy. It was certainly not my intention to jeopardize the integrity of one of their programs, perhaps even the association itself! All I really wanted was for my daughter to participate, fully, in the RM Reading Program.

The RM Reading Program, according to the ALA website “brings an excellent selection of recent novels to the attention of Anywhere children and young adults. It rewards them for reading by making them judges in a province-wide literary event.” My first inkling of its existence was when our daughter came home excited that her school library was hosting the RM Club. “Mom! I’m going to join the RM Club! There’s these great books! You, like, read them and talk about them. You can email the authors and they email back. And you get to eat pizza!” Pizza? I wasn’t sure how pizza factored in, but the reading part sounded great.

It didn’t sound so great to the teacher-librarian who thought it would not be “appropriate” for our daughter to join. Our daughter is an avid reader and writer (by avid I don’t necessarily mean quick), but she also happens to have Down syndrome. While this doesn’t seem to have stopped her from learning and participating along side her peers, it does sometimes have the effect of reducing otherwise intelligent educators to a just barely contained simmering miasma of fear and preconceived notions about ability and value.

The teaching assistant (may the goddess of literacy bless her visionary soul) was able to convince the librarian that it would indeed be appropriate for my daughter to participate since she 1) loved to read, 2) loved to talk about books, and 3) loved to belong to clubs.

In November we were presented with a delightful selection of 10 Canadian novels for young adults. Parvana’s Journey by Deborah Ellis was my daughter’s first choice, precipitating all sorts of discussion at home about Iran and landmines and the effects of war on children. Run by Eric Walters was next, because 4 of the other participants were reading it and Terry Fox was, after all, one of her heroes. In January she started In Spite of Killer Bees by Julie Johnston, giving a copy to Grams to start a little Grandmother-Granddaughter email long-distance book club.

It was in January that I realized she had read all the easier books (in terms of length and content) and that she might not be able to complete the required 5 by the end of April. Required that is, to vote in RM Award selection. And if you think voting might not be important you don’t know my daughter, who can be quite insistent on having her opinion count.

So I made what I thought was a reasonable request for a child with a developmental disability. Could we set the goal for 4 books instead of 5? It was what I believe the Ontario Human Rights Code would consider an accommodation. But the librarian didn’t agree. The rules stated that to have voting privileges you had to read at least 5 of the books. The rules. Considering our history of breaking rules to make it possible for our daughter to be an active participant in life, the rule bit didn’t phase me. It made me tired, but it didn’t phase me.

I did what any advocate for inclusion (alias Mother from Hell) would do, I wrote to the rule-makers, the keepers of the flame of literacy, the Anywhere Library Association. If the whole point was to promote literacy and introduce young adults to Canadian authors, would allowing one young woman with Down syndrome to vote if she had reached the goal of reading 4 instead of 5 of the novels break the code? I didn’t think so. But that shows you how little I know about literacy or awards.

The ALA Education director was thoughtful enough to respond personally to my request. She assured me that she understood my situation and “heard” me. However, the ALA was not able to make an exception. “After all, these are rules we set and if we officially suggest that readers can vote even if they read fewer than five, we would jeopardize the integrity of the program as this dispensation would spread like wildfire through our membership.” Like wildfire? Whoa, I’d never thought of that!

I suddenly had a vision, perhaps the exact vision that made the ALA tremble: whole armies of adolescents with Down syndrome descending on public and school libraries across Ontario demanding to read 4 (not FIVE) new novels by Canadian authors. How utterly frightening.

She did have other suggestions— I could go back and talk to the teacher-librarian again or find an alternate club at one of the public libraries. Let’s see – I can pull my daughter out of the weekly school club with her friends (yea right, to quote my daughter), or I can make a further annoyance of myself with the school (done that, have the tattoo to prove it).

We do have other options, but there-in lies the rub. Our lives have become quite rich with complicated and time-consuming options that will allow our daughter pursue her quite modest desires (in this case: to read, to vote, to belong). For some reason the most straight-forward accommodations, the ones that will allow her to participate as a valued and equal member of the group, are seen as a threat to the integrity of our public institutions. I’m not sure I understand it. Perhaps that is why I keep coming up with these subversive ideas, ignorant as to their true impact on the basic fabric of Canadian society. Ah well, call me unrealistic. Call me a Mom.