Monday, September 27, 2010

A Short Bit About Being Alive, or Life, Death, Buses

Fall has set in and Jessie is fully engaged in all of her activities—including Propeller Dance, hip hop, music, drama, and teaching dance—in addition, of course, to school (where she will be doing a work placement at the Food Bank starting later this fall). She is managing her schedule incredibly well (although that’s never really been the issue, the problem is usually how I am managing it!), including learning two new bus routes so she could get herself where she needed to go independently while I was away at a 4-day retreat with a trip to Montreal tacked on to the end.

While not a novel observation by any means, the more responsibility she is given (where there are few to pick up the pieces—except all those neighbours and friends we have co-opted as back-ups and guides) the more she rises to the occasion. While I was away, Dan said she did a great job taking care of herself and supporting him in what he had to do. I know there were probably many glitches, and probably many snacks that might not make it on the nutritionist’s list; however, she not only survived, but felt a proud sense of stepping up to the next level.

This will probably be important as we head in to this fall, as I might be away at unpredictable times; my father (Jessie’s beloved Grumps of the two-stomach fame) was just diagnosed with cancer. While it was odd to go straight from a 4-day silent retreat to a meeting at the oncology department, Jessie’s response put it all into perspective for me. When I called her later that afternoon and shared the treatment plan with her, she was ecstatic. I tried to tone her excitement down a bit, not wanting her to hold on to magic cures (my Dad is, after all, 80 years old, and as I told Jessie, likely to die in her lifetime), trying to keep her focused on a reasonable reality.

“But Mom!” she said, as if I had totally missed the point, “Today he is ALIVE!!” That he is Jess. That he is.

Thursday, September 9, 2010

Who's Your Role Model?

Our constant haggling over the Jonas Brothers (okay, MY constant haggling) has had new wood added to the fire as Tanya and Nancy—Jessie’s teachers at Storefront—told her yesterday that the Jonas Brothers were not appropriate role models for a young woman of her age. She was more than slightly miffed as she shared this little piece of her day with me.

Taylor Hicks, Season 5 American
Idol winner lining up for JB tickets
I do wonder, sometimes, where she gets this tendency to fawn over TV/pop stars from and am quick and happy to blame it on Dan. Not that he would even deign to watch the show, but he is the guy who can relate to late nights watching movies on TV. His are usually in black and white and involve long-dead actors and auteurs, but that doesn’t stop me from pining the fame blame on him.

When Jessie was little, I wouldn’t even have Barbies in the house. At least not until I was forced to let one in when it came as a gift and I was obliged to welcome it as an act in our moral commitment to inclusion. Really! It was my first ethical conundrum around inclusion because all of Jessie’s friends were playing with Barbies and by denying her that experience, I risked further separating her from her peers. Of course, as all parents will tell you, things change. You let your moral compass shift slightly off true North and welcome any diversion that will buy you more than 5 minutes alone in the bathroom, or, in our case, any diversion or interest that will connect your child to their peers.

However, the Jonas Brothers, and all things Jonas and Camp Rock and Disney, are driving me to distraction and may even require some serious intervention. I’m just not absolutely sure who needs the intervention.

Do I lay down the line as to what I deem acceptable as entertainment and as a way to spend one’s time, or do I respect her choices? We have tried to lead her to other sources of joy. There is no doubt in Dan’s mind that my proclivity is toward social justice and that I see beauty in magnolias, not Miley Cyrus. Dan himself loves baseball, biographies, and jazz. Most of our family games (and we have played LOTS of family games) were of the cooperative variety; the TV shows she watched growing up were on TVO and PBS; best-loved stories were often the classics (Wind in the Willows, Little Women, Charlie and the Chocolate Factory, The Story of Rosa Parks); and outings were usually to farms and museums and rarely to any place that had a roller coaster.

When Jessie shared her dismay (or was it disdain?) about Tanya and Nancy’s response to her chosen role models, she was taking a risk, because she knew full well my own opinion about the Jonas Brothers. So I took a moment to reflect (instead of jumping on the bandwagon), and asked her if she could explain WHY the Jonas Brothers were her role models. She came up with a pretty good answer: because they loved music, they respected their mother, they were family oriented, they were fun-loving, and they wanted to share their love of music with everyone. That, I pointed out, made sense. She grinned.

Then she thought for a while and said “Okay. Maybe I just shouldn’t share that with them. Maybe the Jonas Brothers can be my role models but I just don’t tell them that.” That, to my mind, was an interesting and thoughtful solution. And we talked about what we share with other people and how we choose the appropriate place and people with whom we share certain interests. Let’s face it. She does have a few friends (both with and without disabilities) who love the Jonas Brothers.

She was quiet for a moment and then said “But I also think of Nellie McClung, from the Famous Five (women who fought for women’s rights in Canada) as a role model I guess, and Nelson Mandella.” (I admit, this made me feel a bit better about my parenting skills.) We talked more about role models and what they mean to us and how we find new role models as we mature and meet the world in different ways. We talked about her former dance teacher and mentor, Hannah Beach, as being a role model, and Craig Keilburger (Canadian activist for the rights of children), and Alito Allessi (the founder of DanceAbility).

I also realized that since she has exited formal schooling (i.e., classes in English, Civics, Geography etc.) she is not as exposed to new people and ideas as she was. She doesn’t read the newspaper, doesn’t really listen to the news, rarely watches current affairs TV, and our days seem so filled that there is not as much time as there used to be to discuss current events or social issues. That’s something I hadn’t really thought about as we transition into adulthood, and I realized that it’s something we might need to address (although I am not sure how!).

But as I watched her process and think and be willing to consider new ways of stepping out into the world, I began to feel very proud of her. Even though she loves the Jonas Brothers, she also loves her best friends, her family, and her art. She is passionate, determined, loyal, and has an uncanny ability to believe in something even when the world is trying to force her in a different direction. She is unafraid to dance on the beach to music that only she can hear, and if only more of us were willing to do that, it might be a more interesting world. So maybe Jessie should be MY new role model.

Photo source:

Wednesday, September 8, 2010

Day One: Back to School; Back Off!

It’s Jessie’s first day back at Storefront, the two-year public school program she is enrolled in that teaches job skills and skills for independence.

We had planned to have a first-day-back celebration with cupcakes that Dan was tasked with buying on his way home from work. In a rare fit of domesticity, I bought a chocolate fudge cake mix at the grocery store (I can only take domesticity so far) and made peanut butter icing. I was feeling like such a good Mom! Then I got an e-mail from Dance With Alana (where Jessie takes a hip hop class) that offered a series of workshops this week, before the regular session starts. I signed Jess up for the video hip hop (don’t ask me, I have no idea what that might be) and the pop and lock class (I have no idea what that is either, only I know it probably doesn’t have anything to do with breaking and entering because Alana isn’t that kind of woman).

I presume everyone reading this sees what’s coming, but I am still in the first blush of fall back to school and feeling like a generous and kind-hearted parent. Jessie calls on her way home from Storefront, excited because she has NO chores! I proudly tell her about the cupcakes. There is silence on the other end of the phone.

“But Mom,” she says quietly, “I told Dad to buy them on the way home.” “Yes, but I thought we could make them instead. Home made is much better than store bought, right?” Silence again. “Sometimes,” she replies. I try to sell her on making cupcakes but fail miserably.

Then I tell her, all excited, about the hip hop workshop. “But I don’t even know what that IS!” she says. Hmmm. I am detecting a theme here, but I try to sell her on that too. Then I just give up, put on my happy excited voice, and say “whatever!” hoping that it will all come out in the wash. “See you when you get home!”

As I hang up, I realize that I have stepped in too close, re-arranged things that don’t need re-arranging, and without even knowing it, undermined her sense of control and direction. It’s not the growing up that’s tricky; it’s the letting go of old ingrained momhood habits. Wish me luck for day 2!

Sunday, August 15, 2010

And We're Off!

To Maine that is, for 2 weeks, Jessie and I. So no more posts until re return, as I will be seriously offline! I will, however, share one highlight of Jessie's time at camp aside from the cute counsellors. It was the enthusiastic response of one of her cousellors to her helpfulness and organization skills. You heard right! And I quote: Jessie was a fantastic camper. She socialized every opportunity she received. She was also extremely helpful and she always kept her things organized. (My bolding).

Wow!! Could have knocked me over with a feather. And I made sure to let her know how delighted we were! So now there is no reason for me to ever be on her case (as she is quick to point out).

She also spent alot of time with the staff and "...she interacted very will with fellow campers as well as counsellors. She made many new friends with campers and fellow staff."

So another great year and I can now honestly say that the summer wasn't a disaster. It turns out you just have to send your children away to find out what they are really capable of. I must remember this. But now its to the beach!

Thursday, August 12, 2010

Famrers Markets, Puppet Festivals, and the Roller Derby

That’s how parents spend their time when their kids are away at camp, just in case you were wondering! With Jessie gone, Dan and I are alone. Seuls ensemble. In years past, we wondered whether this would be a curse (being alone together) or a blessing. We quickly learned that it was a chance to fall in love all over again, much to our surprise! And so we look forward to her time at camp almost as much as she does. There is a list, of course. A list of things we need to talk about such as: finding a work placement for her that’s near to home; figuring out what happens after school when she graduates; finding a college course for her to try; figuring out if we consider moving so we end up in a city where she can attend a college or university program such as those offered in Vancouver (Steps Forward) or Charlottetown (ACE); hiring a personal assistant/support worker, and of course, finding a place for her to live.

But we put the list aside on Saturday and just got in the car and drove. First to the market in a little town called Carp outside Ottawa. The Carp market was my friend Claire’s suggestion, after I told her that we couldn’t go to the Parkdale Market here in town because it would be bad karma. The Parkdale market is where Dan and I once had a fight and I drove away leaving him stranded in the rain with no bus fare to get home. Dan does not have fond memories of the Parkdale market.

The market in Carp was a delight of dogs and organic produce and flowers and craft stalls. We wandered and sampled and sat to soak up the sun and came away with fresh corn, a bouquet of bright zinnias, and stomachs full of home-baked goods. Feeling both sated and zenned, we slowly made our way back to the car and just kept driving down the road with the windows open and jazz humming in our ears and veins. The delight of an unplanned, unscheduled day kept us on the back roads of the Ottawa valley, leading us to nothing in particular other than our own enjoyment of each other and the day.

A turn in the road and a bridge across a river brought us to Almonte, where there was a puppet festival in full swing. We pulled over to the side of the road and wandered into the town, overcome with puppets of every shape and size. There were puppets in the bookstore and the bakery and the even hanging from the rooftops. We bought a pie, a very expensive pie, and stayed for the parade. Then wandered back into the car, ending up down the road again, at the Mill of Kintail where we paused for tea on the lawn and a short walk along the river, singing to each other to keep the bears away.
We drove home in companionable silence, a brief reprieve before the Roller Derby! Yes, friends, Ottawa has a roller derby! And we had tickets! Our languorous day ended as we watched in awe and excitement as teams of young women on what looked like their grandmother’s skates (and with names like Splat Benetar, Justine Sane, Lacy Brawler, and Platinum Bomb) raced around a flat track at breakneck speeds, jammers passing the pack to score points. (I admit I had to read the game rules to figure this out.) My sweetie even bought me a Slaughter Daughters t-shirt. Ah, true love!

It was the perfect day. A day without boundaries or schedules. A day filled with both relaxation and excitement. A day to just get out and do whatever was offered. And we were rich with it.

While work continues, Jess will return, and the car needs major repairs, we have had this day. And it was good!

Wednesday, August 11, 2010

RETRO JESSIE: Her Bags Are Packed and She's Ready to Go [1998]

An earlier piece—almost 12 years ago!—about Jessie’s first camp experience.

I have fond memories of my own days at summer camp and bless my parents for sending me. I am especially grateful when my own family climbs into a canoe and I realize that I am the only one who has the faintest idea about how to avoid that rather large rock that is coming up on the right.

Looking back, I realize I learned many things at camp. How to sail, how to ride, how to belt out songs with silly lyrics, and how to giggle hilariously into the wee hours of the morning aided only by a flashlight and a few other willing bunk-mates. All things I wanted our daughter to experience.

Of course my husband, he of the mall-mentality, comes from a different background. The threat of spending a week in a cabin in the woods with other kids his age was viewed as a punishment worse than life without cable. Not that his parents ever actually sent him to camp.

So last summer, when I brought up the idea of sending our eight year old daughter to sleep-over camp, Dan was appalled. I have to admit, I had my own qualms. Our daughter Jessie had never spent many nights away from us, still woke up in the middle of the night, and was convinced that having to wipe her bum was an assault on her burgeoning independence. Add the extra chromosome that distinguishes her as a child with Down syndrome and you can understand that contemplating camp required some extra planning and support.

Somehow (praise Gitchigoomi or who ever the native camp deity is, and I know there must be one) everything fell magically into place. Camp Davern, the Y camp for girls, had an available space in the same session as 3 of her friends. It also had lots of experience including children with special needs and introduced us to Project Rainbow, an organization that could help provide the extra support needed to fully include Jessie in all the camp activities. Now all I had to do was broach the subject with Jessie.

I introduced the idea cautiously, not wanting to frighten her off. “No parents?” she asked. “No,” I said, “but…” “I’ll sleep in a cabin with friends?” she interrupted. “Yes, but..” “YAHOO!!” she yelled as she hugged me. “I want to go to sleep-over camp!” Then she paused and got that determined look. “I want the top bunk.” So much for caution.

As the departure date for Camp Davern approached Jessie got more and more excited while I tried to hide my nervousness. We practiced putting on her bathing-suit by herself, she slept in her sleeping bag, we made lists of what to pack. And then there was that sudden realization that with Jessie gone, Dan and I would be all alone. Childless. Just the two of us. The sad fact was, that since Jessie’s birth, we had never actually been alone together for longer than 12 hours. Here we had 5 full days stretching out into an unimaginable void. While this opened up endless possibilities, one of those possibilities was that we no longer had anything in common other than the newspaper, which we fought over every morning.

Nervous and scared (that’s us, not Jessie) we waved good-bye to the camp bus, watching Jessie’s familiar grin fade into the distance. I drove Dan to work and went home feeling empty. I waited for the phone call. Come pick your daughter up…she pushed a camper down those steep stairs to the waterfront…she fell out of the top bunk…she wandered off into the woods and the search and rescue team is out looking for her.

But the fear and emptiness was only a momentary pang. I sat at the computer and wrote, for 6 straight hours. I didn’t cook dinner. I didn’t do laundry. I went for a walk. I laughed. I told a joke. I slept in in the morning and met Dan for a picnic lunch. We talked about jazz and women authors and the names of trees. We didn’t talk about Disney movies or schedules or speech therapy. We went for long walks at night and we laughed. Together. At the same things.

While I missed Jessie and thought about her constantly, I found each day filled with a growing sense of delight - with myself, with my work, with my life. And by the time camp was over I felt transformed.

Jessie came back tanned and bug-bitten, with a smile on her face. Being a typical eight year old, she avoided our blatant attempts to probe and would only tell us that it was fun. I have no real idea of what Jessie did at camp, or what she learned. But I do know that this year, it’s back to Davern! It’s an experience I would never miss!

Tuesday, August 10, 2010

Gotta Get Me One of Them Anxiety Dogs!

Jessie headed off to camp last Thursday. Packed, clean, and excited for another year at Camp Misquah, a summer camp near Gracefield, Quebec for people with intellectual disabilities. This is her first year in the adult camp, and she was psyched. Ready to move up, and certainly ready to leave us behind! The only thing she was really concerned about packing were her notebooks for writing lyrics—Camp Misquah, in her mind, has the potential to be a Camp Rock experience. She graciously left the rest of the packing to me.

On the morning of her departure, Dan got us all up at 6 am. We showered, coffeed, breakfasted, and got the last remaining bits and pieces together in the car and drove the three blocks to the parking lot where the buses sat waiting and the clean-t-shirted counselors milled around looking for their cabin mates.

Jessie scrambled out of the car, leaving Dan and I with the luggage, to meet friends and eyeball the counselors. After checking in with the nurse—with a small bag of medication that only included chewable Advil and was nothing in comparison to some of the rigourous medication schedules that some of the other campers are on—we got her bags out of the car, tagged with her cabin number, and lined up for loading on the bus. As I grab my coffee and head back into the fray to talk with other parents, I notice two small dogs standing quietly, calmly, and tethered to two of the campers. Each of the dogs is sporting a service dog harness. I am curious, as they seem too small to be guide dogs. In fact, neither is much larger than our cat.

I introduce myself to Kate (I love name tags!) and ask if I can pet her dog. I bend down to stroke the black furry creature and am greeted with a wet puggish nose and tail wag. “So, he’s your service dog?” I ask. “What’s his name?” “Buster. He lives with me. He’s an anxiety dog.” I refrain from saying anything about the dog not looking anxious, and ask how that works. “He helps me be calm,” Kate replies patiently, as if answering the question for the umpteenth time. The other dog belongs to her roommate, who has a seizure disorder. The two young women live together with their dogs and the four of them are off to camp! I realize there is a long line behind me, waiting to greet and meet the dogs and I move off to join Dan and say goodbye to Jessie.

As the buses are boarding we find ourselves standing next to Cara’s dad (one of Jessie’s cabin mates) and introduce ourselves. Cara’s Dad is a real estate agent and recently bought a house for Cara, who is a couple of years older than Jessie. She and two other young women with intellectual disabilities live there together, with support. I had heard about what they were doing through the grapevine, and was interested to talk to him about the venture. While waiting to wave to your child (sic) going off to camp is not the best venue for a long discussion, I just wanted to introduce myself, open the doors for a longer discussion at some other point. We talk for a bit about the house and how well it is working out. We lament the lack of paid employment and living options for young people with disabilities, and he admonishes us to consider buying a house sooner rather than later.

Ah yes. Living away from home, leaving the school system, finding a job and a future and a way to be in the world. And funding it all. It’s not that I haven’t thought about. I have. Quite a bit in fact. But right now it’s all I can do to get Jessie packed up and off to camp; thinking about getting her packed up and ready for life is a whole other scenario that includes serious medication, just because of the lack of ready-made options.

When people ask about Jessie’s future I often use the line my friend Claire taught me: “We haven’t invented it yet.” But the time for serious invention is here; I can feel it breathing down my neck. And as we wave to the buses as they leave, I’m thinking that I should make an appointment with my doctor. I need her to write me a prescription for on of those anxiety dogs!

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.

Wednesday, June 30, 2010

Just the Basics

I have work!!!! Which will keep me busy and away from posting on this lovely blog on a semi-regular basis. I will try to post something at least once a week and reach back into the Retro Jessie pile, which is waiting. Our daily summer routine is falling into place, including negotiating (read fighting) about the rules and structures we agreed on. Peace sometimes seems a very foreign concept in this house and I keep going back and re-reading Desmond Tutu, thinking: if they can do it in South Africa surely we can do it here in one house on one street in this little Canadian city! Forgiveness seems to be the key.

So for today … I forgive all teenagers all transgressions against all makers of miracles (read mothers). But just for this one day!

Today=basic chores; basic to do (Which includes “work on your dreams and goals.” Now how hard can that really be and do we really need to argue about it? Note: dreams and goals are NOT defined or vetted by me, they can be (and are) anything, including “write great lyrics and send to Jonas Brothers.”); pretty basic lunch; basic be social with Aunt who is over to stay and very interested in me and tries to make conversation but all I seem to be able to respond with today is “I don’t know.”; basic bleach facial hair; basic dishes; basic cut veggies for pizza dinner because I have invited about 6 friends over to eat here and go to movie up the street; and basic go to bank so I have money to go to the movie with my friends.

Pretty balanced summer day, if you assume that all basic activities require no prompting. Hmmm. So that’s where my day goes when I am supposed to be working straight through! (I work freelance, from home. It has its obvious benefits and, especially in summer, its own particular drawbacks.) Next week volunteering with our local Shakespeare-in-the-park company—Company of Fools—starts and that will keep her out and doing something she loves about three nights a week. This is a different summer for us, as it is the first summer she is not in some form of day camp for July. While as she matured she moved from basic camp to leadership camp to arts leadership camp, she isn’t yet at the point where she can participate in a paid summer job, so she is volunteering.

How that balance plays out through out the month will be the interesting challenge. So. Stay tuned and place your bets:
  • Will Nancy and Jessie still be talking by the end of the month?
  • Will chores and other skills for independence end up in the green bin along with the potato and strawberry scraps, to be pulled out and recycled in September?
  • Will Nancy have been able to put in any billable hours?
  • Will Jessie stay awake through all her volunteer time? (note to readers: Jessie has a tendency to fall asleep at any job/work that requires sitting down for an extended—or even a short—period of time. Unless you are performing Shakespeare!)
Will any of this matter in the long run? As parents, we like to think so, but I am not really sure!

Friday, June 25, 2010

Dancing Down the Street: The Ottawa Jazz Festival

The call came out late Tuesday: Propeller was invited to street dance in the opening day parade for the Ottawa Jazz Festival. Mike Essoundry—esteemed percussionist and composer, and one of the musicians working with Propeller—needed more dancers to accompany The Mash Potato Mashers (his jazz street/marching band) as it lead the parade out from City Hall and wound its way down Elgin Street (one of our major downtown streets) and through Confederation Park to the main stage of the Jazz Festival.

Jess was psyched. “Of COURSE I want to do it!” Dancing, as I noted before, and in public, as I alluded to before, is the way life plays itself out. And so who am I, really, to try to persuade her that it isn’t so, when life’s circumstances and our community keep presenting her with opportunities to dance through life? At first I thought of working on those “independence skills” and getting her to figure out how to get there and take the bus on her own (she’d certainly be able to do it). But then I figured, who would want to miss a parade? As you can see, I am easily sidetracked from some of our goals, but Jessie just knows the most interesting people who invite her to some of the best things going on in the city, so I often find a way to go along for the ride. It may be years before she masters the bus!

Only two other members of Propeller were able to go at such short notice, Shara and MH, but there were other dancers from The School of Dance, and banner holders, and of course the musicians! All decked in red (right down to Mike’s funky Canadian red plaid Elmer Fudd hat) and silver and gold (the instruments). As they marched down the street, with police escort to close off the intersections, people began to join in and dance with them. (See video, just a few clips strung together, I figured it out! Notice how much slower the dancers are moving at the end.)

Jessie, as you can see, was in her element. MH catapulted her electric chair over curbs and grassy hills and spun and intersected with the other dancers and musicians. At one corner the group stopped and formed a circle and Shara delighted audience and musicians alike with some African dancing, inviting others into the circle.

When it was all over and we were sitting together on the bench waiting for MH’s paratranspo bus, the sousaphone player stopped to talk. “Like a Disney parade!” I said. “Not quite,” he said, “While they are fun, they leave no room for mistakes and so no room for being human.” “I like this kind of parade,” he continued, “it’s much more fun and I feel like I want to dance and march along. I’m not just watching, I’m participating.”

I thought about that on the way home. One, how Jessie has invited me into a community that is so open and full of life and creativity, and two, how Jessie (and her peers) invite others to be full participants in a joyful life. Now that is a great gift!

(Photos and video © 2010 Nancy Huggett and not to be reproduced or shared without consent)

Wednesday, June 23, 2010

Avenue Q

Jessie loves musicals, hence her passion for the Glee TV show. And she loves “product,” hence her collection of t-shirts, albums, and posters from everything from Singing in the Rain and Shirley Temples’s Bright Eyes to Rent, and Wicked. She also happens to have some friends who love musicals almost as much as she does. So the three tickets I managed to get at a discount price for the Broadway show Avenue Q—currently on its North American tour—were a great coup and a highly-anticipated end of school/beginning of summer treat.

Before leaving for LA, Dan reminded me to make sure that Jessie took out money to be able to buy a souvenir from the show. We had been to too many shows and events where we didn’t bring enough money (and Jessie forgot to bring her own) for a t-shirt or other smartly marketed merchandise—I swear they only take shows on tour to sell that stuff—and had to negotiate our way through a Jessie meltdown. This time I made sure to write it on every calendar and to do list (I have many, but don’t assume that means that anything actually gets done) floating around the house. And I actually made a point to squirrel away $20 (just in case, and to add to whatever amount Jessie had saved) in the envelope with the tickets.

Showtime arrived. I drove the girls all decked out for their night on “Broadway”—the National Arts Centre here in Ottawa. They were singing, they were excited, they were ready for a show! Jessie checked to make sure she had money. Decided not to buy a drink or a snack at the fancy cafĂ© before the show just so she would be able to buy whatever item she desired to remind her of this special night, this special show—a loopy Sesame Street kind of guide to adulthood.

At 10:30 the phone call came. To pick them up. I can hear a crowd . . . and . . . is that tears? Please! NOT tears!? “Mom! There are NO souvenirs!” Sigh. We go to all this trouble to actually remember the money and there is no merchandise? What kind of operation is this anyways? It’s not bonafide American Broadway without merchandise. I want my money back! Or at least somebody to tell me why we can never quite successfully avoid a meltdown.

You see, Jess wears her heart on her sleeve. And when that heart gets set on things going a certain way, and they don’t, it breaks. Out loud and in public. Sometimes it is a trait of hers I admire. Sometimes not. This being able to roll with the punches is a quality we’re still working on: its called resilience and there are books and research papers and even websites about it. I just want to know if you can buy it, over the counter, and inject it in your children. The funny thing is, there is so much that she IS resilient to (or has at least survived with her spirit intact, which is, I think, a definition of resilience), like years of having to fight to be included in school and managing the social minefield of the playground and high school hallways.

What does seem to work is a liberal dose of commiseration and letting her cry or express herself however she wants without shutting her down. A bit of a challenge for me! Especially in public places. (Hmmmm, what is it with me and public places?)

But by the time I swung by to pick them up she had recovered. And was singing, loudly, with the girls, all the way home:

The Internet is really really great
For p_rn!
I’ve got a fast connection so I don’t have to wait
For p_rn!
There’s always some new site
For p_rn!
I browse all day and night
For p_rn!
I’m surfing at the speed of light
For p_rn!

Its going to be a long summer.

Tuesday, June 22, 2010

Summer, Strawberries, and Skill Building: Oh Let it Go Nan!

Our summer begins, as all our summers have since Jessie was born, with a trip to pick fresh local strawberries. We are lucky to be living in a city where you don’t have to even leave the city to find a pick-your-own field, and so it doesn’t require much planning. Only a thought, a friend or two, and free morning. The friend or two is the key to making it work, as Jess is not one to get too excited about manual labour, even if it is in a field and results in food.

Strawberries are best, of course, with shortcake and a liberal dose of whipped cream. When she was younger, we avoided the whipped cream, intent as we were on keeping her diet “healthy.” We used vanilla yogurt instead. That changed when she was around 6 years old (see journal entry from 1997!) and had lunch at her friend Maddie’s up the street. It was late June and the strawberries were just out. Georgia, the mom, presented the girls with a large bowl of strawberries and an equally large bowl of whipped cream. I don’t think Jessie had ever even seen the stuff before. She dipped her strawberry in, took one bite, looked at Georgia with her eyes wide in wonder and said “I’ve never tasted yogurt like THIS before! Can you tell my Mom where to get it?” That summer it was hard for me to keep Jessie away from Maddie’ house. She would sneak out of the house and arrive in their kitchen through the back door, asking for just a little bit of that special yogurt!

Late yesterday CG called with an invite to go strawberry picking. At least one of the girls (her daughters and Jessie’s best-est friends, Rachel and Rebecca) would be available to go, meaning that we could probably entice Jessie. The weather was perfect, not the usual sweltering heat in which we usually end up picking strawberries. There was a breeze, the field was almost empty of people, and we had row upon row of strawberries to choose from. Some even made it into Jessie’s basket.

Back at home, Jessie dutifully checked off her routine (a draft summer routine that we came up with before Dan left for Los Angeles for the week, in the hopes that Jessie and I would not argue the whole time he was gone over TV and the computer—this is the first year that Jessie has a kind of ad hoc schedule involving volunteer work, teaching, and just hanging out) of reading, chores, planning for time with friends, Facebook, checking her email, exercise, and working on her “dreams and goals.” Then told me that she absolutely needed and deserved TV. I began to argue, then dropped it. It IS the beginning of summer, and I need to let go of what I think she should be doing and allow her to decide, within the balance that we have set out for her.

I begin to prepare the strawberries and realize that this is something I should be teaching her. While I would like her to WANT to help me prepare strawberries, to want to learn to do it, I realize that I will have to let go of it … today. And for tomorrow, I will have to come up with a great enticement that will make her want to learn. Like making jam! With friends! Hmmmmm. I think I need to call CG and see what she and the girls have on later this week.
(Photos © 2010 Paper Clip Camera Cathy Gray)

Monday, June 21, 2010

It's 7 a.m. Do You Know Where Your Children Are?

Yup. And I gotta brag! Because this is definitely not our usual routine (which often involves at least one door slam, one “you’re not supposed to be watching TV in the morning,”, and one “Stop telling me what to do!”

Jessie got up at 6 am (in spite of staying up way past 11 last night to watch the MTV awards and Justin Bieber) and was at the computer writing before I even came down. Notice writing and NOT watching videos or old TV shows. She then made herself a healthy breakfast of scrambled eggs (Mom, I learned how to crack eggs from watching the movie Serena, with Audrey Hepburn. Its ALL in the wrist!) and a whole wheat English muffin. Then she unloaded the dishwasher, put the dishes away, and loaded it back up again before going upstairs and putting away her laundry.

I was going to blog about the fear and loathing in my heart as summer approached and we had no real plans for Jess—but I guess we’ll have to wait for that one. For now, I’m going to let myself enjoy this first real day of summer.

Sunday, June 20, 2010

Dance with Alana, Part 1: The GPS [hijacked]

In which Nan starts to write about a single day, reads it to Jess, gets reprimanded for the use of the word “schmooze,” and Jess takes over the blog.

Another day, another performance, another good-bye! That’s June. That’s Jessie’s life. The only thing that makes it easier is the GPS Dan bought me as a present. I just plug in all the addresses (dress rehearsal here, year-end party there, quick meal on the road here, performance over there) and my true life’s calling as a chauffeur is actualized.

Yesterday presented a bit of a challenge, as Jessie had to go from the Dandelion year end/good-bye pool party (staying only an hour when the party was continuing on past dinner and into the evening) to the rehearsal and performance for a dance studio--Dance with Alana--where she has taken up hip hop. I had tried to talk her out of this performance, knowing that the year-end Dandelion party would be a highlight (it was beside a pool and they were doing spa stuff in addition to eating a delicious dinner with cake!). But her genes (the performing ones, not the Down syndrome ones) dictated that ‘the show must go on.’

Of course, I sent Dan in to pull her out of the pool party—I made the excuse that I had to program the GPS. It’s just way too hard to do ALL the things you want to do without some activities conflicting with others, and its just way too easy to blame Mom (moi) for the conflict or the necessity of leaving. So when I have the chance to put Dan in the line of fire, I do.

We did get her out of the idyllic oasis—believe me, I would have loved for her to stay and maybe even find a way to invite myself in—and headed downtown to drop her off at the university for the rehearsal. Unfortunately, my GPS wasn’t able to account for the Franco-Ontarian Festival, the Fringe Festival, a large group of unruly children wielding drums and banners, and the closed parking lot, which precipitated me yelling at it (notice the “it” and not my family, yet) as it intoned “Recalculating….. recalculating … recalculating….” and I drove around in circles trying to figure out where to park. Jessie added her own refrain of “But I’m going to be late!!!!” while Dan grumbled, “You know, I can take the GPS back if you don’t like it.” At which point I stopped the car in the middle of the street, turned the GPS off, and told them to get out. Nicely. Really. “But …,” starts Jessie. Dan looks at me and just whooshes her and her dance bag out of the car saying, “We’ll meet you inside.”

I did find a parking space after only 3 more times around the campus. It was far enough away for me to have composed myself by the time I got to the theatre. Jessie was in the dressing room, dressing and schmoozing
. . socializing with other people. Jessie was having a great time rehearsing and keeping the vibe going. Her attitude-stricken dance moves were amazing. As I saw the performance I thought to myself, “Wow, these people are amazing dancers and performers.” When I saw Jessie’s hip-hop piece I thought that Jessie did an amazing job with the dance. She has some serious attitude in the dance.

Okay. So that last part is Jessie as she decided to take over the computer and the blog, even the “attitude-stricken dance moves.” Which is why I am trying to convince her to do her own blog. There’s my “Life with Jessie” and then there's “Life BY Jessie.” I know which I would prefer to read!

When I decided to start this blog, I did promise Jessie that she would be able to vet what I wrote, and that I wouldn’t write about anything she didn’t want me to write about, as this is, after all her life! At first she wasn’t very interested, except to know that I was writing about her (which she thought was pretty cool). Then I loaded Google Analytics and brought her in to see how many people were reading the blog (okay, it was less than 5, mostly friends, but still bordering on fame to her). Hmmm. She liked this part, especially where she got to click on the map and see where the people lived.

Then she decided that she wanted to read what I was writing (because I leave it up on the family computer) and she took great exception to me using the word “schmooze.” (Too close to “booze”; she thought I was saying that she was drinking back stage, which, she informed me, she definitely was Not. Phew, glad we got that cleared up). Then I went to help with dinner and when I returned she had taken over the computer, erased the last paragraph I had written, and put in what she thought I should have written. I like her version better. Maybe she’ll get her blog up and running yet!!!