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!

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)

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 café 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.

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)

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.

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!!!

RETRO JESSIE: Best Laid Plans: The Jonas Brothers [November 2008]

We are negotiating these transition years with a great deal of angst, frustration, and—when we can step back and look at the bigger picture—laughter as our daughter Jessie’s drive for independence often leads us down what we (as her parents) feel are major detours or even crashes (of will). Of course, as parents our opinion is suspect at best.

Anyone who has been to our house knows that, while the house is a disaster, our plans for independence would rival the best book on the subject. We have checklists (for her morning routine, for the evening routine, for food, for homework, for breakfast). We have visual cues (for laundry, for making and packing lunch, for taking a shower). We even have clocks colour coded to support her telling time. What we don’t have is any degree of ‘buy-in’ from Jessie, or what we as parents would label ‘success.’

Our biggest challenge these days is getting Jessie to plan. Plan her day, plan her goals, plan her homework, plan her precious time with friends, plan getting out the door on time so she doesn’t miss the bus. We have backed off on rescuing her (we no longer drive her to school when she is late, remind her when her homework is due, gather her dance clothes and costumes together, or make her check her email) and then have to lock ourselves in the basement to stop ourselves from intervening to make it all work out.

Somehow, she does not quite grasp that telling me that she needs hawk wings for a performance that is in 2 hours is not a terribly effective plan. She looks at me first in desperation, then in anger. What kind of a mother am I, that I can’t make hawk wings in a ten-minute time frame. “But, I’ve made a commitment!” she wails (oh yes, she has the language down, just can’t make the connection to HER role in it all).

Then yesterday she came home from school very excited about . . . yet another scheme. Jessie always has lots of schemes ... for creating a choir, making a movie, writing a documentary, going on the road with Miley Cyrus, living in New York with her best friend, buying our local rundown movie theatre—the Mayfair, stopping all injustice in the world, being the most popular girl on the planet ... and the list goes on. Great, I say. What’s the plan?

And low and behold she had one! A very detailed plan! That started with a rough copy of a letter she wrote to the Jonas Brothers (I refrained from asking WHICH class she wrote this in. I don’t want to know, and if I ask then, as a parent I will have to say, again, you need to be paying attention in class to what is going on IN class! Which I am tired of saying and I am sure she is tired of hearing and which really makes no difference. Ah yes, the humbling experience of parenting a teen—when we are faced with our utter powerlessness, which I have heard is supposed to lead to a spiritual awakening but has only really sent me into expensive therapy.)

I do have to share the letter with you, because she said I could and because, when I ignore the fact that it is to the Jonas Brothers, it actually demonstrates a certain degree of skill in its structure and its argument. It goes like this:

ROUGH COPY
TO: Jonas Brothers.
Please
Respond
Politely !!!!!!!! (yes, 8 exclamation points)

Jonas Brothers,
My name is Jessie Huggett and I write lyrics and I was wondering if we could get together so I can show you my lyrics and you guys can help me with the music and the beat and the tempo and everything. And maybe I could come on the tours to be your lyricist? I know Nick is the songwriter, but have you tried to get a lyricist to write the songs for you?

This will be like a huge opportunity that you cannot miss out on. Please. Pretty please. With whipped cream on top.

It will be great opportunity for me as well, because when I grow up I want to be a Hollywood lyricist. That is my dream.

I also have a laptop. I can type. Plus I have a printer. If you guys let me go with you on tours, I can type the lyrics out and I can print them out and you guys can have the printed copies.

Thank you so much,
Jessie Huggett

Now, the letter is pretty good, but the piece de résistance is the plan. All neatly written out and the key to the whole scheme.

Here’s my plan (writes Jessie)

Step 1: Make Letter.
Step 2: Type out the letter.
Step 3: Ask Mom to print it out.
Step 4: Get stamps.
Step 5: Address the letter.
Step 6: Mail the Letter.
Step 7: Wait until they respond.
Step 8: Receive the responded letter and read it.
Step 9: When they say yes, say “Oh Yeah” very loud.

“Oh yeah!” very loud, is what I exclaimed when she shared her plan with me. All our hard work has paid off! Not in the way that we had planned (we still despair her ever getting out the door on time), but in the way that SHE has planned. And that’s the point isn’t it? When it comes to something truly meaningful and important to her, she can plan how to get there. Baby steps, baby steps. Both going forward (her) and backing off (us).

It's Not Leukemia!

I made Jessie read about blood on the Internet the other night.
Not the Twilight/vampire/movie kind of blood, but the kind that courses through our bodies sustaining life. To get her ready for her appointment with the hematologist yesterday. It’s her second appointment. The first was in the fall 2009, after at least 4 different sets of blood work that showed her white blood cell (WBC) count way below the low-normal range at which she usually clocks in.

I had already done lots of Internet research, and found much of it confusing. I had avoided talking to people about bone marrow tests, because the only people I knew who had had them had died. I didn’t really want to go there. But I considered the fact that Jessie really didn’t get sick very often, wasn’t tired, didn’t have night sweats (a sign of something, but I’m not sure what), hadn’t lost weight, and nobody seemed to be in a rush to get in and figure out what was going on. This was a good sign, surely?

However, the blood work from the fall still showed low WBC levels, and so I needed to prepare her for the fact that the doctor might say something about doing more tests. I didn’t want her to freak out in the doctor’s office, but I also didn’t want her worrying about it too much before hand. So I left it to the last minute.

“Why do I have to read this?” whines Jessie.
Her usual Internet reading material covers only pop stars and quizzes such as Which Cheetah Girl Are You? “Because you need to know how blood works so you can understand what the doctor says and ask any questions you might have.” I say, not very convincingly.

I pare it down a bit for her. “Okay, you only have to read about what blood is made up of and how it’s made.” I am guiding her gently towards understanding that her WBC is low. And that she might need tests that involve her bone marrow. “But I don’t WANT a bone marrow test!” she wails. This is where parenting gets hard. Because neither do I! I stop to check her understanding (something we learned to do a long time ago). She thinks a bone marrow test would mean cutting her open and digging out part of her bone! “No, no!” I say. “That would freak me out too!” Now for the little white lie. “A bone marrow test is just another needle.” I capitalize on the fact that she is now an old hand (and proud of it!) at needles and blood work. I can see the relief on her face and hope that she doesn’t read the concern on mine. She sleeps well that night, even if Dan and I don’t.

We go to the clinic in the morning. The doctor fits us all into the small office and shows us the blood work results from last week. While her WBC count hadn’t skyrocketed, it had shot up to within the low-normal range, as had her neutrophils.

“It’s not leukemia!” he exclaims.
Stunned silence from all three of us as we, each of us, look at him terrorized. We didn’t know that leukemia was an option!

He looks at us confused. He’s just delivered the good news, why aren’t we reacting ecstatically? I try to give him what he wants, authority pleaser that I am (NOT!) “Okay. That’s great! So what does this mean?” “Well,” he says. “We’d only be worried if the levels kept going down or stayed down. They vary, so it probably means that that’s just her normal. We can follow her, if you want. That would just mean blood tests every six months….” Jessie grins. “I’m really good at that!” she says proudly. “And a follow up in a year,” he says. Okay. Sounds good. We exit. All slightly stunned by what could have happened but didn’t.

Jessie stops by the elevator and looks at me accusingly. “But you didn’t TELL me that it was leukemia!”

“It’s not!” I can say with relief, willing to take the brunt of her accusation and whatever fall out ensues. Because its NOT!

How To Be the Best Mom Without Even Trying

Just have a few (well, you only need one) great friends like CG. I first met CG when our daughters were in elementary school and my daughter (Jessie) sat on her daughter (Rachel) in the play ground. (As you can see by the photos, some things don't change.) Somehow they became great (and I mean great in every sense of the word you can imagine) friends.

Rachel went off to university on the east coast this year, but is back now for the summer, working at one of those typical summer jobs we’ve all had to get us through school (stocking shelves and dealing with customers who alternate between being irate and effusive), and spending time just hanging out with friends.

Today, Rachel had planned an impromptu canoe/picnic—lugging her Dad’s red canoe over the fence near their house and into the canal and padding to the arboretum—with friends and CG convinced her to invite Jess, after we had worked out that I could drive Jess to meet them at the arboretum. The canoe part was a bit out of her (Jessie’s) league, although CG has great plans for getting her up to speed so we can do another camping trip (this time with the red canoe) together.

Jess called home on her cell after work and I told her to hurry home, as Rachel wanted her to go with them to the arboretum for a picnic. Silence on the other end of the phone. Then a burst of glee as she shouted “Mom! You are the BEST mom in the whole world!!!!!!! I’m going to text Rachel right now!”

Well, that was easy!

So off they went. An idyllic afternoon spent under the willows by a meandering river with a lunch prepared by CG, a copy of Twilight to be read aloud, water colours to paint with, and a camera to take pictures. Jess was in heaven, her joy almost palpable. Mine was perhaps subtler, but just as intense, as I watched them from atop the hill.

There are so many heartbreaking moments as our children grow up and away, sometimes away from the friends who have made their lives richer and more meaningful. To be included in a moment of random and spontaneous adventure, with friends, is not something that happens often for Jessie. And the times that it has happened has mostly been with the G’s, who have given her the gift of true friendship (which includes acceptance, shared joy, patience, a large measure of creative insanity, and the ability to listen (every now and then) to the Jonas Brothers).

As for CG, I can honestly say that SHE’S the best mom, and the best friend, in the whole world!

(Photos © Rachel Gray 2010) 

Glee, Cranberry, and Creativity

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

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

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

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

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

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

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

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

RETRO JESSIE: Art and Disability [June 2008]

In the Press
June 2, 2008 (yup, 2 years ago!)This in another “in the press” week for Jessie. A radio interview about the upcoming Propeller Dance performance at the National Arts Centre 4th Stage and a TV interview. Propeller Dance is one of the performing groups that Jessie belongs to (the other being Dandelion Dance Company). Propeller is an all-abilities/integrated dance company that includes persons with a wide range of abilities—including those with intellectual and physical disabilities)

Jessie has had her fair share of press, when I look back at it, for all her dancing and performing, and she has an uncanny ability to speak about what moves her. I forget, sometimes, just how articulate she can be. There is a proud Mom factor here, but also, when I step back, a wonder at what she reveals. That she speaks from the heart and somehow finds the words to express her joy and her intention. She blows interviewers away and absolutely loves the attention.

The Mom Factor
The Mom factor here tries to deflate her getting too used to it. But also needs to step back to let her enjoy the limelight and remember that as others listen to her, she is breaking down barriers and opening doors for all people with disabilities. She speaks from the heart, and when others listen they stop and wonder at all the spirit and understanding that exists in her heart and head and maybe, just maybe, stop to think about their preconceptions about persons with intellectual disabilities. There is so much there for us to learn from. Jessie is just one voice (of all the voices that we tend to discount), and maybe her voice opens up doors for other voices to be heard.

The Circle Widens . . .
. . . and Jessie is on a high, even this morning as she gets ready for school. I drove her this morning, because she was late and because she has another performance tonight. And in the car she smiled and said “I am so excited about tonight!” Another performance would just exhaust me. But she is excited! That performing part of her certainly comes from Dan, not me! And she just exudes life on stage. And joy and a certain generosity of spirit that catapults energy across the stage and out into the audience. Tonight she and the group perform Underground Wonder —a piece that she has choreographed and I am looking forward to seeing that. In her own words, “it’s about living in darkness underground, caught in the cold and the snow and then breaking free so each of our colours, our beingness can emerge and greet the world.” She does go deep sometimes!

Opening Up Vistas . . . Painting with a New Palette
The Propeller Dance performing group has opened up vistas for her and has given her a space to work with other performers and to create and to perform from her inner sense of joy. For me, the Propeller Dance classes and performing group has opened up a whole area of my heart that makes me look at the world differently.

It also generates a measure of anger, when I look at what an amazing performer she is and how much that is her passion and how the “regular” channels (school) cannot shift the elitist attitude that constricts what is valued to only those who fall into the “established” palette of value. While drama has always been a strength for Jessie, she was not allowed to apply to the high school for the arts (we don’t take kids like her—i.e., kids with an intellectual disability), nor was she allowed to apply for the drama focus program at her own high school —because she didn’t have university or college level English (one of the prerequisites).

What then, or how then, do we foster the passion and strengths of each of our students? And in the arts, of all places, where seeing and being outside the box is often the norm and the place from which many create? This continues to frustrate me, although you think I’d be able to let it go. I can’t, for some reason. BUT, am so grateful for all the opportunities outside school that the community offers for individuals like Jessie and others who don’t fit the mould. She is also lucky to be living at this time and in this place where new arts groups and opportunities are growing and where the wider community is opening up and making room for artistic expression for those with disabilities, who in turn are changing the environment in which we all create.

Connecting to Our Deeper Selves
We connect to our deeper selves through art and performance. To a deep sense of love and laughter and joy and pain. To a celebration of just breathing, of turning in a chair and flying with our arms through the woven ties that sometimes bind us to the ground and to each other and, if we watch and listen with our hearts, to a certain freedom that allows us to fly beyond the lies and the pretences.

Okay. Then there is the other side of our experience. This part tells you that it is all about people. Tis people, tis people, tis people. Jessie also loves to sing. She is a wonderful performer on that front as well. But she cannot, and I mean this seriously, with all the love that a mother has, she cannot sing on key and only recently has managed to keep a beat. By her own admission (through tears, when listening to a tape she made with friends) “why does my voice sound so wrong when theirs is so right?).

So. We have a child who, over the years, has belonged to a number of school and church choirs and who absolutely loves to sing! She stands on stage and it’s hard to take your eyes off her because she exudes joy and her whole body sings with her (if you can get past the off-key part...and usually we hope that the choir is big enough that most people won’t notice that). But there is no doubt that she sings off key. Really off-key.

And Yet . . .
And yet, and yet....the choir and voice director at her school asked her to join the voice program! Jessie came home from school one day to tell me this with pride. I was sure that she a) got it wrong or b) the choir/voice teacher was just being kind and thoughtful. But when we were choosing classes for next year, the high-needs coordinator at school reiterated that yes, Mrs. B thought it would be wonderful if Jessie took the voice/choir class. I smiled and nodded. Jessie beamed! And it is a curiosity to me that the school makes it impossible for her to pursue her passion (and what she is really good at), but will make is possible for her to pursue a passion where she has little talent. Go figure.

Exit Left

A half decade of sustenance and inspiration—exit left. Saturday was Jessie’s last performance with Tournesol and Dandelion Dance Company. How do I begin to write about that without breaking into tears? Not possible. This transition is even greater than her prom was, or than her graduation from the high school where she the majority of her teen years. As with all of Jessie’s major transitions, I sidestep the full impact by and to-ing and fro-ing with the little details (buy flowers, sew a prop, plan a lunch, pack a costume bag, make sure I have gas in the car) and then, when I have a moment, sit still with the feelings welling up inside and burst into tears of sadness mixed with pride and wonder—at Jessie and her amazing growth into a young woman, and at the people who have blessed her life and made it far richer than anything we could have envisioned by their belief in her abilities, her artistry, and her gifts. No small task when you look at all the barriers she has also encountered along the way—barriers that she has been able to slip under, climb over, or just detour around or break down with the help and support of these “soul guardians.” There is no way that I will ever be able to thank these “soul guardians” enough! (Hannah Beach, the girls and parents in Dandelion, Ms. M (her grade 6 teacher), my friend CG, Rachel (Jessie’s “best friend since elementary school!”), Shara and Renata at Propeller, Janet at church … and the list goes on. It makes me think about what Anne Lamott wrote about all writing often starting out as a thank you to an important person, and as there have been so many important people in Jessie’s life, look for them as inspirations for this blog, even if I will never be able to write well enough to thank them properly.)

Ubuntu.The older I get the more I realize what Jessie has been trying to teach me right from the beginning—it’s ALL about relationships. All learning, all loving, all grace is about relationship. Or Ubuntu: a person is a person through other persons . . . My humanity is caught up, is inextricably bound up, in yours. We belong in a bundle of life. (see Desmond Tutu’s No Future Without Forgiveness, p. 31)

For more than 9 years, Jessie has been taking dance classes with the incredible Hannah Beach at her dance school, Tournesol (sunflower for those of you without French, turning always toward the sun). Six years ago Hannah encouraged her to create a solo about having Down syndrome, which Jessie called I AM and which helped to launch the Dandelion Dance Company (Dandelion needs no translation, just a reminder that dandelion seeds spread far and are difficult to eradicate! And to learn a bit more about Hannah go see the Regional Contact documentary on the Dandelion site). Dandelion has been a major part of Jessie’s life this last half decade and has had a profound influence on her sense of self, her sense community, her sense of belonging, and her sense of her own value. On the one hand, she has garnered much press (print, TV, and radio) and accolades from a wide range of audiences from teachers to policy makers to parents to students (we all love recognition). On the other, she has learned what it means to be an integral part of a community committed to both creating and performing art and nurturing the spirits of those young women involved.

I cannot even begin to imagine what Jessie’s life would be like without this experience: without the relationships she learned to develop with the other Dandelion dancers, without Hannah as a mentor and teacher, without performing and developing her own movement vocabulary, without a place to express and struggle with her own feelings of what it means to be a part of this fractured yet sacred world.

Dandelion and Hannah have been such an important part of who Jessie has become, who she is, that I find it difficult to even conceive of her life without the weekly routine of Dandelion dance classes, rehearsals, performance, celebrations, emails, and just the ebb and flow of girls becoming women. While Jess is lucky in that she has Propeller to “propel” her on and keep her sailing on this artistic journey that she has embarked on, graduating from Dandelion will leave a huge gap in her life and I know she will struggle with this particular emptiness as we move through the summer and into next year. I will need to remember, when she can’t articulate it or even put her finger on it, what kinds of sadness and loss she will be dealing with. And I will need to remember to be patient with her as she processes and grieves. None of us is very good at grief, really. And Jessie’s usually takes the form of extreme anger at, you guessed it, moi! Or extreme anxiety, which means being called into her room in the middle of the night to reassure her that she is not, in fact, dead, or missing a limb.

But for now, we enjoy the celebration of moving on: a roomful of praise from other dancers, parents, friends; a unique painting of sunflowers with a bronze plate with Jessie’s name on it; dinner out and a sense of joy and wonder at the years spent nurtured by this very special community.

Jessie did perform “I Am” for the last time (tears here), and a piece called “The Struggle” about growing up and moving out (large tears here, I will confess that I probably even sobbed). Then we ate cake. That is how all good transitions should go, n’est pas?

Coming soon on the blog: The Struggle (the last dance piece Jessie created for her final performance about growing up and moving on); Up A Notch (the Propeller show Shedding Light); and Retro Jessie: Thoughts on Art and Disability.

Animated! [Friday night]

Friday’s rehearsals for Dandelion and the Propeller show went great! I “animated” the silent auction without a hitch and the Propeller show was sold out. So sold out that there wasn’t even a place for me to sit so I had to wait until Saturday to see the show. The perquisite: hanging out with all the amazing support people running the silent auction and the snack bar. Propeller has amazing supporters and I had a chance to get to know some of them a bit better … and to suss out the silent auction items for Saturday!

Jess her very usual welcoming self (her job was to welcome people as they arrived at Arts Court and to direct those using wheelchairs to the very awkward—but accessible!!!—wheelchair entrance). At first I wasn’t sure how she would handle not performing in the show, but she took her role as greeter seriously and she does have this innate ability to draw people in and make them feel welcome.

After the show I couldn’t find her anywhere and grabbed Shara to ask if she had seen Jessie. “I think she’s in the theatre dancing,” she said. I peaked in and sure enough, there was Jessie with the stage lights on, the music blaring (apparently the technicians turned it all back on for her), dancing her little heart out. I won’t make a big deal of the fact that she actually took her street clothes off (she had her dance clothes on underneath from the Dandelion dress rehearsal) and flung them into the seats then was in her element hanging off the railings—an amazing set constructed for the Propeller show. She had an audience too! It was hard to tear her away (by now it was after 10:30), as I think she handled the fact that she wasn’t performing extremely well. One thing about Jess, she is also a great audience and if I had to perform anything anywhere I would gladly hire her to be in the audience! Her whole face lights up and she actually vibrates (I have this from someone who was sitting next to her) as the performance mounts or as different dancers take centre stage.

It's Showtime!

Its the beginning of the onslaught: that weekend in June when, for whatever reason, ALL Jessie’s performances and parties fall! This weekend: Friday = dress rehearsal for Dandelion/Tournesol dance show (2 shows, am and pm Saturday) at the National Arts Centre Fourth Stage, then across the canal to Arts Court where Jess has volunteered to greet and welcome people to the Propeller Dance show (Shedding Light) and I am “animating” the silent auction. Saturday = 2 shows during the day (her final performance with Dandelion Dance Company, after being a member of the company for more than 6 years, sure to be tear-jerker for everyone and apparently she has created a piece about leaving home, so check back later for my thoughts on that), back to Propeller to volunteer and see the show. Sunday = sleep in a bit before driving Grams (my Mom) back to the train station, then a hip hop rehearsal (she is having to miss music class for this), then late to a Dandelion Girls get together at E’s house where they are meeting and then going down to Westfest – a great neighbourhood arts festival with lots of music and performances. (When I get it up, you can go to “About Jessie” to get the background on all the things that are making no sense to you—like Dandelion and Propeller.)

My toilet floweth over. Why is it that toilets block just when you have guests and no time to deal with them? Today I am in the semi-panic lead-up to the onslaught weekend wondering why I procrastinate on everything. I need to sew elastic and random colourful shapes on to a pillow (a prop), figure out a healthy way to eat dinner on the road (sushi?), type up the list that Jess made for how the weekend is going to go (with a big BE FLEXIBLE across the top that I have added), change the sheets in the guest bedroom for my Mom, and try to fix the blocked toilet in the family room! Added fun: this morning a cameraman and Dan are at our house using the backyard to shoot an ad. What are the chances that no one will need to use the bathroom? How do you tell a stranger that they can pee in your toilet, but they just can’t use toilet paper? Ah, the million dollar question.

Bang On

Today (June 10) Jessie met me at the mall after school so she could get her hair cut. That was a disaster, although she is fine with the cut now. Jessie has developed her own relationship with the esthetician (a delightful young woman with brightly coloured hair and a way with Jess) and the people at the salon. She negotiates her own way with the hair dresser, but yesterday was a challenge. Jessie kept telling her to cut the sides shorter, but she didn’t want bangs. Insistent about that. But what is the demarcation point for bangs? “Shorter,” says Jessie. “Do you want bangs?” asks the hairdresser. “No!” says Jessie. So the hairdresser stops just short of bangs, but Jessie doesn’t like the way the hair falls into her eyes. “Shorter!” she commands. “But I can’t go any shorter without turning them into bangs!” says the hairdresser! (I exit at this point. Is that cruel of me? I just wander out into the mall.) “But I don’t want them falling into my eyes!” says Jessie! She flips her head angrily. The hairdresser eyes me with what looks like panic as she sees me walking out of the salon. I leave them to figure it out. When I turn around Jessie is walking towards the cash with tears in her eyes, shaking her head and trying to get the bangs/not bangs out of her eyes. I let her pay, then meet her outside the salon. “But I don’t like them falling in my eyes!” she wails. The hairdresser comes out. Everyone is looking at us. “Is she all right?” she says? “She wanted them shorter, but not bangs, so I tried to do what she asked!?” I tell her its okay. It’s a learning opportunity! (She looks at me as if I am the most insane mother she has ever met . . .) Jess and I sit down at a table in the food court and go over what happened. I’m still not sure what she envisioned, but we talk about communication and I assure her that she looks beautiful (she does!). Then, as she is walking, and she flips the hair out of her eyes, and suddenly turns from sullen into delighted! “I think I am just like Stella in the Jonas Brothers, see!” and she flips her hair again, in some—only known to her—gesture that is obviously mimicking what she has seen on TV. It’s all okay now! She is just like a character on TV that she idolizes and life is fine. Hooray for TV I say (but not out loud)!

Retro Jessie

As I move forward with this blog, I will also be moving backward! Posting pieces that I may have written a while ago about different phases/stages/stories in our life with Jessie! You'll be able to know when this is a "past" post by the title. I'll call these Retro Jessie (and put a title and a date on them). I may even reach way back into what I wrote when Jessie was born and during her first few years of life. These early pieces were originally aired on CBC's Morningside and published in one of the Morningside Years/Papers books. My advisors (aka friends and soul mates!) tell me that people might want to read these! If anybody ever finds this blog!

Sugar, Sugar!

While the picture is from her birthday at Disney World, it perfectly sums up Jessie’s delightful, yet challenging relationship with sugar!

Yesterday when Jessie called on the cell after school was over, her opening line was “I had sugar!” No mention what exactly she ate/bought that had sugar, just “I had sugar!” “Okay,” I said, “did that sugar come in any form of food, or was it just sugar?” “Mooooom (the long oh of course). I had money and I bought a SMALL sundae after school because I was hungry.” Silence on my end. Then, “Jessie, that’s not a good or healthy food choice. When you get home we need to talk about healthy food choices.” Click. Or whatever sound goes with the slamming shut of a cell phone. Then a few minutes later the phone rings again. I don’t answer it. (I’m getting good at that.) There is a message however. So I listen: “Mom, I’m sorry I hung up on you. I was being defensive and I’m sorry. I didn’t want to hear what you had to say. You’re right (huh?). Maybe when I get home you can print out a problem solving sheet and you can help me figure out how to make healthier food choices. We can do it together.”

Wow! First, the fact that she used the word “defensive” in terms of her reaction, second, that she recognized her defensiveness, and third, that she was willing to do something about it. Most of the adults I know (myself included) rarely recognize their defensiveness so quickly and are usually never ready to do something about it until at least a day later! I need to learn something from this … about myself in particular. But food continues to be a challenge, one that I can relate to, except I am graced with a overactive metabolism that allows me to eat “sugar” with abandon. I am sure that will change as I age, but Jessie has inherited my love of sugar, without the metabolism that makes it not so apparent. Jessie LOVES food—sugar and carbs in particular—and combined with little self-control and a sluggish metabolism it is a bit of a struggle. Food gets mixed up with all sorts of other issues as well, such as independence.

This weekend, for example, we got to sleep in on Saturday for the first time in what feels like a million years, as Propeller Kids is finished for the summer and Jessie doesn’t have to get out the door by 8:30 to go teach. As Dan and I were lazing in bed (at 8!) Jess slams into our room and drops a pad on the bed saying “I’ve written you a note, read it!” She is fully dressed, we are barely awake. Dan’s the only one who can read without glasses these days, so he picks up the pad off the duvet, pushes himself up and reads: “Mom and Dad: I am trying to be more independent because its important and its what Storefront is teaching me, so I am going to Tim Hortons to buy myself a breakfast sandwich. Jessie.” I am too tired to be kind or thoughtful or measured in my response. “You are NOT going to Tim Hortons. (I count myself lucky that she is not willing, these days, to completely ignore my commands.) You don’t have to buy your food to be independent. Making your breakfast also counts as independence you know!” She slams down the stairs and the house shakes, but at least she doesn’t go out the door.

Part of this is due, I am sure of it, to the fact that she has just spent the last two weeks or so eating out—the dance workshop trip to Calgary and the school trip to Montreal. And despite my best efforts and guidance, we consumed a lot of “unhealthy” food, and boy did it taste good! So the food battle continues. We try to celebrate the little gains (other than weight!), and her willingness to recognize that it can be a challenge.

And so, true to her word, when she got home we did the “problem solver sheet” together. I did reiterate that we weren’t trying to get her to never have sugar or ice cream or any of those delightful things, but to try to create a balance in her diet that gave her room to eat any and all of the things she loves without harming herself or her health. The solution (after defining the problem and the goal) was to 1) not go to school everyday with money so that she is tempted (she did recognize that it was REALLY hard to walk by Baskin and Robbins each day after school on her way to the bus stop, and felt better when I agreed with her that that would be really hard for anybody!) 2) to pick one day a week when she would bring money to buy a snack after school, 3) to mix up what she bought and maybe to choose a frozen yogurt instead, and 4) to pack a snack that she likes that she can eat after school. We also talked about what would happen if she bought a snack everyday and how much money she would then NOT have for some of the things she wants to buy … like clothes, movies, dance classes, and fixing my old guitar. Ah money …. And budgeting. That is a whole different post!