Jessie Flips: About Propeller [part 1]

Propeller Christmas Party

I finished writing my Christmas cards last night for people in Propeller Dance and I'm really happy about it. We had the annual Christmas dinner out in Carp, a small town just outside Ottawa, at one of the dancer's homes. I really enjoyed dancing an performing in this company and organization this year and now this year is coming to a close and I'm looking forward to doing more of this in the new year. I'll probably help work behind the scenes too. For example, I wrote my first press release for Propeller two weeks ago and we got more press coverage at the community day last weekend than we ever have before! We had two TV stations and one newspaper there. 

Some of the people that I look up to in Propeller are: (and I will do more next week, but we just got back from the party and its almost midnight and I have to go to bed!) ..

Bella 
Bella is an amazing artist and performer and when she dances she uses her feet and facial expression. Bella and I get together sometimes and cook.

Bella at Community Day

Liz 
Liz is a really talented performer and has really good stage presence  I met her when she was finishing her masters at Carleton University. She was also my mentor in lesson planning. Bella, Liz, and I teach together on Saturdays. 

Liz (by Dave) Liz won the Celebration of People Award for an artist with a disability this year. 

Liz and me in Calgary where we went for a dance intensive a couple of years ago. 

Renata 
Renata is co-artistic director of Propeller Dance and she is a great performer and she knows a lot about technique. Renata is mentoring me in choreography and choreographic work. 

Renata

Amelia 
Amelia is a new dance and she and I work so well together. Both Amelia and I made a duet with Renata's support called "What's in the Box?" Amelia is really funny and we make each other laugh. 

wacky Amelia, and Moni

Amelia and me getting ready for the box dance (photo by Dave)

The First Angel

Yesterday's angel post brought a mama friend to mind, Kate, who had made Jessie (back when she was just a wee thing, but still full of piss and vinegar!) a window overlaid with art (Jessie as an angel) and inspiration (six symbols of spiritual strength and the feminine).

The original source of the piece was a polaroid picture (remember those?) taken at a church bazaar, where you could put your face into an opening in a wooden cut out angel figure and have your picture taken as an angel. Jessie was so small Dan had to hold her up (you can just see him in the background) and she jutted her chin out in a way that she had that indicated the beginnings of either defiance or determination. Anyways, a glimmer of something that all my mama and women friends recognized and honoured.

Kate borrowed the polaroid and created this delight, fashioned from a cast-off window and stained glass paint. It was a miracle gift to Jessie, and to me. A blessing of love, reflection, depth, and beauty.

Today Kate and I messaged back and forth (we no longer live in the same city), sharing images and words from that time long ago. And I thought of all that Kate taught me (and teaches me still), and meant to me (and means to me still), and brought to Jessie's life (and does, in her own way, still). And I am grateful that the window, which transforms the light, is still there for Jessie to explore as she grasps her own womanhood. May all our girls have such magical women in their lives, a clutch of feminist fairy godmothers.

For those curious and intrigued, this is a shortened version of the symbols:
Light One: Full Moon and Three Stars. full moon=matriarchal, primary feminine sign, protected or consecrated space where all participants are equal.
Light Two: Fate. the three goddesses of fate (fairy godmothers) who hover over infant's cradley proteching and supporting the child in mystical ways.
Light Three: Interlaced Cross. a sign of interdependent dualism, think yin/yang. Earthly world is horizontal and green, spiritual world is vertical and purple, and they interlace, what happens to one must affect the other. 
Light Four: Ladder. sacred laddeer with seven rungs, ladder to heaven, also leads to the heaven in the first light.
Light Five: Spiral. Death and rebirth (and of particular meaning to Kate, appearing in each of her pieces and a symbol of divinity for her)
Light Six: Triple Arrow. symbol of unity.    

Thankful Tuesday: A Daughter Like Jessie

This is Tuesday, so I am joining in the Thankful Tuesday party over at Micha Boyett’s blog, Mama: Monk. 

While I kept a list this week of things I was thankful for, it got recycled with the grocery and house to do lists as I was trying to clean the piles of papers vying with the contents of the kitchen cupboards (don’t ask) for space on the dining room table. So last night, as I put aside the editing I was working on and asked Jessie what I should be thankful for, she said “Your friends!” And when I told her, yes, for sure, but I was also trying to keep the focus on these transition years and it would take a full-length book to thank my friends, she said, “You can be thankful that you have a daughter like me!”

And I am! Because even in this mess of growing up, in this mess of driving, problem solving, present buying, sex educating (her me), and money managing, Jessie reminds me that it is all about people. About friends, and lovers, and husbands, and mothers, and spirit cousins who gather in darkened candle-lit rooms to be still and quiet together for half an hour every week. It’s about connectors, and fitness instructors, and old neighbours with new dogs, and strangers who use the “r” word and are then corrected and accept the correction with suitable contrition. It’s about church friends who invite Jessie to sit for a while, and church friends who invite her to work for a while, and church friends who offer to teach cooking and sewing and public speaking when I have lost all patience for any of that.

It’s about mama friends who hug her and love her when I am almost at the end of my patient and thoughtful loving and am running on gut and instinct. It’s about long-time from forever friends who bicycle in sub-zero weather wrapped in layers of wool and Polish-knit sweaters to teach my daughter to sing and want to come back for more. It’s about husbands who vacate basement offices to let mothers work in peace and quiet and without incessant Say-Yes-to-the-Dress whining and drama in the background.

And finally, at the end of a long day, it’s about Jessie who lets me sit beside her as she nestles into her bed, and read her the daily gospel and reflection from my favorite gifted Advent book (God With Us, if you are wondering). And then remembering/telling the beginning of the Godly Play Advent story . . . Advent is the time when we are all (and this is where Jessie gifts me with a long graceful arc of her hand, sweeping, pointing to an imaginary spot in the distance), all on our way to . . .  Bethlehem, we singsong together.

Peace on your journey.         

Thankful Tuesday: Ten Things

Thankful Tuesday: This is Tuesday, so I am joining in the Thankful Tuesday party over at Micha Boyett’s blog, Mama: Monk. I also get to join in the Ten thingsI am thankful for {a writing prompt} over at Ellen Stumbo’s Finding Beauty in Brokenness blog. Thankful, thankful.

So. Ten things I am thankful for that Jessie has brought into my life.

1.      Community. Because Jessie thrives in community and in advocating for her right to participate fully we had to immerse ourselves in our community and oh the people and the laughter and the rallying challenges make every day a delight as we greet and care for and share with our neighbours and community friends (and their cats and dogs falling tree limbs).

2.      Gelato. All flavours, but particularly chocolate raspberry, dulce con leche, and ferraro roche from our local Stella Luna.

3.      Disney movies. Really. While I thought I would gag if I ever saw another sappy Disney movie, the good ones are, well, really really good and bordering on a chocoholic’s version of deep myth. Like last night when we were all tired and Dan suggested that we watch Brave. And we did, and Jessie and I kept looking at each other as if this was OUR movie. OUR discontent, OUR love. It was a great family evening.

4.      Patience. As we believed that she could learn to do many things—including walking, reading, zipping zippers, and the mandatory provincial high school literacy requirement—which she achieved on her third try. So patience for believing, for always believing, that in her own time and her own way she would continue to grow and achieve the things that are important to her.

5.      The Grays. Jessie’s best friend Rachel, who introduced me to my best friend (her mother) Cathy, who introduced us to years of homeschooling part time together (and old lady canoe trips) and to Rebecca, the other sister and both being Jessie’s kindred sisters. The Grays, in their graciousness and creativity and total acceptance of Jessie and our family, have enriched our lives immeasurably and I know I have to write a whole blog about them, because of their central role in our sanity and delight. But mostly, I have had the absolute joy of watching the girls grow into amazing young women, who were (and continue to be) the best adapters of crafts and games and introduced Jessie to both Say Yes to the Dress and Stephen Fry on Language. They continue to invite her to impromptu caroling or canoe rides on the canal, as well as four-course candlelight dinners and lectures on philosophy (which Jessie declines, the lectures that is, not the dinners!). At the Grays and with the Grays, there is no debate or uncertainty about Jessie’s belonging. And that is the greatest gift imaginable, ever ever.

   

6.      The Harts. Who are our other family, our other home, our other place to be when something important happens or needs a celebration. Their daughters bracket Jessie, and their home is always a place that welcomes strays and loved ones alike. It is a warm house, just around the corner, filled with light and the smell of something good cooking. We would not know the Harts if I had not sat on the special education committee with Ken and we had not realized that we had Down syndrome in common, in addition to being neighbours! 

7.      Shakespeare. Who’s plays Jessie fell in love with in grade 4 (the Scottish play to be exact) when her brilliant and amazing teacher Patty Murphy introduced her to the enthralling story involving witches, forests that walk, and slightly (or very) mad men and women. This was the beginning of Jessie’s long love affair, which has been parlayed into going on six years of volunteering during the summer with Company of Fools and in-depth knowledge of play synopses and soliloquies  which served her well in her Trinity Guildhall drama certificates.

  

8.      Patience. For the growing process and for connections and planted seeds to bloom and create the web of opportunity and safety and respect and commitment that is Jessie’s life.

  

9.      A wedding. Mine. Or, more specifically, mine and Dan’s. While Dan is the romantic one and I am sure he would have made me marry him at some point, it was Jessie having planned and schemed and worked with Dan to make me actually commit to spending money on getting married and going to … PARIS! that made it all happen. Jessie and all her delight in frothy romantic fairy tale weddings. Our wedding was her dream, and I helped make it come true! How many parents can say that?

10.  Patience. For my own growing and changing and letting go. As I try to figure my way through Jessie’s growing up, she is particularly patient with my misplaced insistence on doing things my way. But she never gives up. Ever. Ever. And so I am thankful for her patience with me.  

Retro Jessie: Life With Jessie 10: Happy Endings [1996, 6 years old]

Part 10 of an 11-part series about Life With Jessie (written in the early years), first broadcast on CBC radio in 1997/98 and re-shared here as part of 31 for 21. The series will be re-shared and posted here on the weekends through the month of October 2012, as part of the 31 for 21.

Jessie is six years old. She has lost her first tooth, can write her name if you help her with the s’s, mastered the tuck jump, told me to change my attitude, and is learning to read.

One day last month, as we were approaching the school yard, Jessie looked up at a street sign and stopped. “Mommy. Look. I know that word! It says school.” She beamed from ear to ear. “School. I know that word!” She had stopped underneath the sign that said “School Bus Loading Zone” and the delight in her eyes mirrored a sudden revelation that she could read not only the word, but the world.

Nothing, however, quite matches my pride as I watch her learn. She has a sight vocabulary of at least 100 words and we just moved into families of words: the “at” family, as in cat, hat, mat, and bat. What amazes me is her ability to play with word order and meaning. The unrestrained delight in her eyes as she turns a simple sentence into a silly one by switching one word and then waiting for me to laugh.

I spend my evenings cutting out pictures, writing words in bold black print, creating books, and making up games. That Jessie would read was never a question, at least not in our minds. Our house is filled with books and if any child had it in her genes to read, it would be Jessie. Reading and writing is what both Dan and I do for a living (if you could call it that) and for sheer pleasure. But I never thought it would be this easy or this much fun.

Some people would say, well, ya, sure, but she’s high functioning. I’m getting tired of that phrase. Sure, integration works for her because she’s high functioning. High functioning . . .  just exactly what does that mean? Sometimes it means that it’s more difficult for other kids to figure her out. Because at six, kids are into mastery. Who’s better than who. And there’s a general order that they have figured out that is closely hooked to age. When you lose your first tooth, when you turn six, all these rights of passage are tightly tied to the ability to do something. To read, to ride a bike, to draw a figure, or write your name.

Pushing Jessie on her tricycle the other day we met Tim on his two-wheeler. “Why are you pushing Jessie?” he asked. “Because she’s just learning,” I replied. Tim looked at me for a moment, then up at his Mom for support. “She can’t ride a bike? But Jessie is six!” This is inconceivable to him.

If Jessie were just always behind, if her effort and difference were just a bit more pronounced, I sometimes think the other kids would have an easier time of it.

“How come Jessie can read?” asks Tess one day at our house. She was a little put out because she’s used to being better than Jessie at most things. Having finally figured out that even thought Jessie turned six before she did, Jessie was really like somebody a bit younger, she now had to reassess her whole world because Jessie could do something that she couldn’t. I could see her little face struggling with this new view . . .  exactly where, then, did Jessie fit in? That is the million dollar question, and the best “educational opportunity” any of us will ever have.

For Jessie continues to be an enigma, a child who is and is not a peer. She knows her colours in French better than most of her classmates, can recognize a variety of birds, can read many of the signs around the classroom, but she can’t  ride a bike, doesn’t run very fast, and still grabs toys as a way of getting attention. She can, however, do the “Macarena,” a kind of line dance that’s a bit hit in the school yard. And while the Macarena might never show up on her IEP, it’s an important part of her education. An education that she could never get in a segregated setting.

The hard part is not so much in the day-to-day things, but in the things that go on outside our immediate lives. The undercurrent of cutbacks, legal battles, dealing with therapists, preparing for grade one, making myself clear.

There is an air of desperation these days, that makes me very nervous. People are losing their jobs, school boards are claiming that they can’t afford the services our children need. Never mind that integrating children into their neighbourhood schools actually costs less than putting them in a segregated setting. Parents are being told that their child can get an integrated placement, but they can’t promise any supports. But without supports it’s not integration, its dumping.

Jessie would never survive and thrive the way she is without supports. I am so proud of Jessie, of her classmates and her teachers, and of the school community. But there are moments when I get this weird vision that Jessie and others like her will only be this weird blip in time, this strange generation of kids who grew up and went to school together and learned something about meaning and value and caring. I shake my head and clear my eyes. I cannot believe that what we’re doing in not right, is not a step forward, and I can’t bring myself to think that at some point Jessie or the children following her will be forced into segregated settings. Settings that maximize their difference, that deny them the day-to-day opportunity to make friends, to feel good about what they have to offer the world. It’s not that we don’t struggle with how she fits in, it’s that we’re taking the chance to figure it out. Whitout that struggle, we would not have the moments that make it all worthwhile.

The best moment, the moment I would trade all others for, is the moment when, hidden in the closet behind a sheet and amongst the pillows and stuffed animals that I was ordered to supply, Jessie and Claire got the giggles. Singing funny troll lullabies in their own imitation of how a troll would sing, they began to giggle with each successive phrase as each one topped the other in silliness. Nestled there among the pillows in the dark cave of the closet, they wriggled and giggled and I stood quietly in the hallway, holding that moment to my heart. They are so few and far between and I want, more than anything, Jessie and her friends to know what these moments feel like. Moments of connection and delight. Moments when Jessie’s sense of humour and playfulness are appreciated and treasured.

That night, as I was tucking Jessie into bed, she turn to me and said, “Mommy, I like happy endings, do you?”

I do Jessie, I do.

Jessie and Claire went through elementary, middle, and high school together. Claire received funding to do a documentary about Jessie, and has gone on since then to study film in Toronto. Here is a link to this first short documentary, done in 2007.

  

Retro Jessie: Life With Jessie 7: To Barbie or Not to Barbie [1994, 4 years old]

I look around my office and see the paraphernalia that surrounds my desk. The stuff that lets you know that motherhood has invaded every part of my life. Sure, there’s the computer, the overstuffed filing cabinet, and the rolodex. But there’s also the vacuum cleaner, the old diaper pail, and tacked around my planning board a number of bright bold pictures drawn by my four year old daughter Jessie.

Then, there are my bookshelves. Heavily laden monstrosities filled with novels, biographies, reference books, and, if you look carefully, stand on your tiptoes and peak behind the old copies of Ms. Magazine, Utne Reader, and Today’s Parent, you will find my Barbie collection. My Barbies aren’t kept carefully in cellophane or displayed in neat rows. None of them have been loved much and many of them are missing their slippers or shoes or combs. There Barbies are no treasured. They are the disappeared.

These are not, technically, my Barbies. They aren’t the ones I played with when I was growing up. And I do have to admit to having played with Barbies. Although what I remember most is how much we coveted the GI Joe because he could wrap his arms around Barbie and give her a real kiss, unlike Ken.

Just to show you that I’m not totally out of touch, I do know that Barbie can now do weird and wonderful things with her limbs. I just happen to have a gymnast Barbie right here I think . . . . yup, just behind Gabrielle Roy’s Enchantment and Sorrow. She can move in ways I never dreamt possible when I was eight. But I’m not really sure what to do with her. Her and the other Barbies I have stashed in high out of reach places around my office. This is where all my daughter’s Barbies end up. Disappeared.

I always swore that if I had a daughter, she would not play with Barbie dolls. Our house would be a Barbie-free and gun-free zone. Of course that was back when parenthood seemed like a great chance to do everything right. To change the world by bringing up children free of sexism, violence, cavities, and inner guilt. But by the time our daughter Jessie was ready for preschool, our lives had been permeated by a different kind of struggle: inclusion.

Our daughter Jessie has Down syndrome. In addition to her bright smile, her inquisitive mind, and her love of a good joke, she has one extra chromosome. And that one little extra chromosome has made some things more challenging for her and us. Things like walking, cutting with scissors, doing puzzles, and making friends.

And our vision for Jessie has at its core, a contingent of friends. Friends to laugh with, fight with, never speak to again, go to her first dance with, and be there when her heart is broken. But friendship doesn’t always just happen and for some kids, like Jessie, it needs to be nurtured, practised, and practised some more.

I do know that Jessie loves being with other kids. “Let’s go visit!” is a common refrain, or “We  will have guests?” And she gets so excited when asked to spend the afternoon at Tess’s or Charles’s house. I thought the biggest hurdle would be making other parents feel at ease with Jessie, so they would even consider inviting her over. But that doesn’t even seem to be an issue, because they have now come to know us so well—from spending time in the playground, on the streets, and at preschool together—and they know that Jessie doesn’t require any special care of knowledge. She’ll let you know in no uncertain terms, what she likes and dislikes and she’s a pretty tough kid.

No, the real challenge is teaching her skill and, yes, preschool finesse, required to join in. Because as much as she wants, so much, to join in, she can’t always figure out how it works. Her current strategy is to wave one of her ever present trolls in a child’s face or to grab a toy from them. At first glance, this looks like an aggressive act. But all she’s really trying to do, in the only way she knows how, is to get their attention. It works. But it’s not really the kind of attention she had in mind.

So we practice alternatives. At home, when we’re visiting, at school, in the park. We’ll stop to watch children an talk about what they’re doing. Then, with a little bit of help, Jessie decides what she can bring to enter into play. Tess and Natalie are making a cake in the sand, so Jessie brings two sticks for candles and walks over to join them. Instead of stepping on the cake, she puts the candles in and starts to sing and sign happy birthday. Natalie and Tess move over to make room for Jessie. She plonks herself in the sand, looks at them both, and says “I can play?” They pass her a shovel and the grin that spreads across her face makes we want to climb to the top of the rope tower and shout across the canal “She can play! She can play!”

And play she does. When she has a few cues and understands the game or the rules, she and her friends have a lot of fun. They play dress up an store and bear hunt. They laugh, they fight, they ignore each other, they take turns. They’re friends. And somehow, through it all, they’ve come to know and understand Jessie. They’re more forgiving of her quirky social skills than I am.

But, some of these friends have Barbie dolls. Her cousin, whom she looks us to, has a Barbie. Laura got two aerobic Barbies for her birthday and offered one to Jessie. This was such a wonderful moment, I couldn’t say no. Barbie just ended up stuffed into my bookshelf. Disappeared. I couldn’t figure out how to explain to a four year old that I think Barbie promotes a hideous and distorted version of womanhood, but trolls, trolls are okay.

It brings up an important question though. Where do I draw the line? We’ve worked so hard to have Jessie take her rightful place in the neighbourhood, amongst her peers, but we haven’t worked this hard to make sure that she also takes on all the unwanted by-products of belonging. I never thought that integrating Jessie would involve such difficult questions: To Barbie or Not To Barbie . . .

But at four year old, I think we’ll let her friends teach her about Barbie, because that’s what friends do.      

Be Out There, Two: The Ripple Effect

Last month Jessie was invited to speak to a group of students at a school-age daycare program about acceptance and inclusion. One of the program staff (TW) had been in the audience when she participated on a youth panel (of “difference makers”) at a conference. While she has spoken often in the context of performing and has been invited to present to government audiences on employment and on the arts, she had never been the “headliner” (read only presenter) for a group of students. We made sure that she arrived at the right place at the right time with a speech/presentation that had gone through at least one round of edits (with us) and had been rehearsed at least three times in the living room.

The audience (a group of about 35 or so children between grades 1 and 4) was wonderfully attentive and the whole experience was great for Jessie. But the wonder of it all for me was played out first, in the reaction of one of the students with Down syndrome and second, in the ripple response as shared with me by one of the staff.

As I sat at the side of the room listening and watching I tried not to pay too much attention to Jessie (that just made me too nervous), but instead focused on the children’s faces and their responses to what she was saying. The moment that almost made me weep was right at the beginning when she said “I’m a dancer . . . and I also have Down syndrome,” and one young girl’s face just lit up as she gasped in recognition, tugging on her friend’s arm and pointing to herself. “Me too,” she mouthed. “Just like me!” This young girl with Down syndrome could barely contain her excitement that this speaker, this dancer, this competent young woman, had Down syndrome just like her. That moment was pure gift: that Jessie could show this girl that she was not alone, and that this young girl could feel a connection and a sense of pride in herself AND in having Down syndrome.

The second wonder was when TW thoughtfully shared the repercussions of Jessie’s talk at the Centre. She wrote: ". . . honestly it is us who would like to thank Jessie for her Courage, Determination, Confidence, Willingness, and Inspiring uplifting Personality [caps hers!]. We loved having Jessie here to speak and the experience went exactly as I hoped. Jessie is extremely inspirational and moves me and others in so many ways. I want her messages to be heard.

I have to share some of the impact of the visit. One of the children is working of a story called ACCEPT, While other children who normally have nothing to do with M [a student with Down syndrome], took time to speak and include her in play. This makes my heart sing.

Several sang, danced and celebrated the joy of music. Including everyone. So many of the children shared experiences of feeling left our not accepted or not belonging.

We hope to continue these discussions and continue to be the change so that everyone feels valued, accepted, included and heard."

This is the gift of Being Out There: that we share ourselves with the world, and in doing so, transform it.

This is the talk that Jessie gave:

Hi everyone. My name is Jessie Huggett, I’m 22 years old, and I’m a dancer, an advocate and a public speaker. I like music, singing, writing songs, dancing, and ice cream! I also have Down syndrome.

Down syndrome is something you are born with. You know how our bodies are made up of millions and zillions of tiny cells. Well, inside EACH cell are even smaller things called chromosomes. Most people have 46 chromosomes in each of their cells. But people with Down syndrome, we have something extra! We have an extra chromosome, so we have 47 chromosomes in each of our cells.

It sometimes takes people with Down syndrome a bit longer to learn to do things. But we all have ways we are different. And we all have ways that we are the same. This can make life fun and exciting. Or it can make life difficult.

When I was your age, at school, sometimes I felt ignored and invisible. And sometimes It felt like I didn’t belong. I got left out because I was different. It made me feel angry and hurt.

But I want to share a funny story with you about that. It’s about how I met my best friend. This story was set in elementary school at recess time. I wanted to go on the monkey bars and when I tried it the kids were laughing at me because I couldn’t do it very well. I got so mad I sat on someone. And that someone—Rachel—became my best friend. She understood why I was frustrated and angry. It made her mad too. So she included me in lots of games and we invented new worlds where everyone was included.

Now, I don’t want you to go and sit on someone! But maybe, if someone is left out, you can be like Rachel. You can be understanding and include them.

Rachel and I grew up together. We liked the same things: writing, acting, stories, and inventing. She taught me how to play the flute and I got her interested in dancing. And she joined the dance company I was with: Dandelion Dance. And through that company I created a dance called “I AM.” The dance talks about inclusion and the barriers. I am going to show you that video now. [ show video]

Inclusion is really important. Friends of mine in England say “The only real disability is loneliness.” I think this is true. It doesn’t matter if you speak or sign, if you walk or roll, if you’re a girl or a boy, or where you are from. The important thing is that you have friends and you have a voice.

I created I AM for a dance company called Dandelion Dance. Dandelion is a dance company for all women ages 13 to 17. We all create our own dance pieces about world issues that are important to us.

When I got too old for Dandelion I joined another inclusive dance company called Propeller Dance. Propeller is a mixed ability company. In Propeller we have a wide variety of dancers of all abilities some use wheelchairs, some are able bodied and some have guide dogs. We all dance together and we all create and perform. Later this year Propeller is coming here, to perform for you!

Both Dandelion and Propeller are really inclusive. That means everyone is respected and valued. We need MORE inclusive places. Places where everyone can belong. And it can start with YOU!

Each and every one of you is special. You have a gift and a talent and I want you to share that gift with the world. And help other people share their gifts. We’ve got to listen to each other. If you want to change the world you’ve got to start small. And it starts with you.

Be Out There

photo and page copyright Hannah Beach, I Can Dance a Better World

One of the things that I have learned over the years with Jessie, is that just being OUT there in the community—going to the library, walking to school, using the community centre, drinking coffee at the local coffee shop, sending her out for movies or bread, or just to the bank at the corner—is the best inclusion strategy there is. While the goal might sometimes look like getting books or doing the banking, I have come to see that the “real” goal (i.e., the most meaningful goal) is connection, to become insinuated into the warp and woof of this multi-textured tapestry that is community.

This has often meant letting go of certain outcomes (such as learning to do up buttons, or ensuring total safety, or getting the exact movie that we wanted, or paying a reasonable price for bread), but being open to experiencing others (such as learning how to sneak up the down part of the slide without the teacher noticing, or a complex people-based safety net that returns your daughter when she escapes the house without you knowing and heads off to the river, or her being a shoo-in for a coveted volunteer position at the library, or being asked to preach at church in front of an adoring congregation).

Over the years, Jessie has taught me that to be out there is critical: to life, to living, to loving, to contributing. And only IF our children are out there, if we take a risk to let go of some of our expectations and let the world (and God/the universe/or some other un-nameable higher power) help determine outcomes, is it possible to live a good and meaningful life. A life filled with giving and receiving, freedom and responsibility, loving and being loved.

So we committed ourselves to getting her OUT there and continue, as her world expands, to see the unexpected outcomes create new possibilities and connections that nurture her and nudge her into places we might not, on our own, lead her.

As she gets older, being out there also means that she is much less dependent on us for her sense of self. Which is a good thing! As I can be a bit of a naysaying witch master (you call THAT putting your clothes away?) at the best of times. Being out there also means that she builds circles of support and meaning that are rooted in her daily pursuits and passions.

When Jessie registered for the Introduction to Public Relations course, we had a few goals in mind. These included learning to: take notes, track assignments, participate in college-level discussions, negotiate the Centre for Students with Disabilities, take a new bus route, take tests, and begin to find her way around the college campus. Her goals included: being a college student, learning about public relations, being a college student, eating in the college caf, and, being a college student.

Instead of waiting for the perfect circumstance (an inclusive and supportive program and structure), we jumped in with what we thought might be enough to sustain the experience and trusted that the universe might just bless us with a few surprises. And it has.

Jessie has had the experience of a wonderful instructor who fully includes her in all discussions and who seems completely and naturally comfortable with Jessie as a full-fledged member of her class (what does that tell you that we did not assume that this would be so?). While the mark on her midterm is still an unknown (they get their marks tonight), it seems a smaller part of her education and definitely a smaller part of her experience. She has made new friends and contacts . . . eager to share her accomplishments with each other. This is the e-mail that came in the other day:

Good morning all! [sent to class list]
I was enjoying a lovely commute in to town this fine spring morning and what lovely voice did I hear on CBC radio? Our very own classmate, Jessie! Here is the link to the full segment: [click here to link and listen to the CBC morning show item]. Jessie, I recognized your voice and passion for dance right away. Awesome job! Talk about great public relations for such a wonderful initiative!
X

It’s so wonderful to have peers and people with whom to share your accomplishments!

For those interested, I've included a brief clip from the video of the dance that Jessie created below; Hannah’s full website can be found here.



I wonder . . . what unexpected consequences have you had from being OUT there?

A Couple of Days, Just Ordinary Days

This blog entry is about, well, nothing in particular other than a quick survey of how some days go. I have no theme, no burning observations, no particular point, other than to give you a small picture of a few days of Jessie’s life. This was a much more laid-back weekend than normal, but that’s because it was bracketed by holidays on Friday (a PD day for Jess) and Monday (Family Day here in Canada).

A Street View Friday

Jessie had a school holiday on Friday, so arranged (with the help of Storefront and an event planning checklist) to meet some friends from school to go bowling. As it was a new bus route, we did the half-support option: this involves Jessie doing most of it herself, but having quiet support in the background (me driving behind, being there as she gets off buses and makes transfers just in case . . . but not actively telling her what to do). As we were planning this route (the # 1 to 1st Avenue, then the #6 to Westboro) I realized that I could use street view on Google maps and I could show her what the street corner would look like when she got off the bus and where she needed to go next. This was an amazing help and allowed her to orient herself (without any support!) when she got off the bus and head either to the next stop, or to the bowling lanes. Brilliant! She went bowling with friends, I went Nordic walking, and then I picked her up when it was over (as the bus home was more complicated and with longer intervals between). In an ideal world (with an ideal mother and an ideal transportation system), she probably could have learned how to walk to the closest transit station (not bus stop) and taken the quick bus home, but welcome to our less than ideal world! We pushed her outside her comfort zone a bit, did a bit of learning, and she had fun with friends. Then we headed home in time for Jess to walk over to Julia and Krysia’s (where she also does music on Sundays) to join them for dinner and to talk about fashion design and the possibility of Krysia teaching her how to sew.

A Dramatic Saturday

When she got home Friday night, she worked on the character study homework she had for her drama class on Saturdays (at the Ottawa School of Speech and Drama) so she could be ready at 8am to go to the airport to meet Rachel, her “best friend since elementary school” with Cathy (Rachel’s mom and my friend and saviour in many a challenging situation) and Rebecca (Rachel’s younger sister and a brilliant friend to Jess as well). Cathy had invited Jessie to go with them to pick up Rachel—who was coming home from Halifax for reading week—go out to breakfast and then go back to their house to hang with the girls until it was time for her to go to drama. We do have the usual food discussion the night before and Cathy is always primed to give a little guidance as she has ridden the food roller coaster with us numerous times—the short version being that Jessie is very impulsive when it comes to food and LOVES to eat!

I was off at a meditation workshop most of the day, assuming (as I usually can with Cathy) that all would go according to plan, or if not, would be rescued appropriately. And it did! The drama referenced in the title had nothing to do with life, but only with the class. My meditation workshop finished in time for me to drive to Westboro to pick up Dan and Jessie. (Note: Dan and I usually squeeze our ‘date’ into these 2 hours on Saturday afternoon where we laze about—and on more than once instance have even been observed napping—in the sunny window of a local Bridgehead coffee shop reading old NY Times book reviews.) After drama, Jessie is psyched to write some more of her character study and so she goes to her room to write on the computer until dinner and family movie night. Some Saturdays, when Jess isn’t out at a friends or a dance or we don’t have anyone over, we try to hold on to family movie nights where we watch a movie together and I try not to fall asleep.

A Laid-Back Sunday

I leave early on Sunday mornings to go to church, with the open invitation for either or both Dan and Jess to join me. Sometimes they do, sometimes they don’t. This Sunday was a singleton for me, Dan and Jess stayed at home cleaning bathrooms and doing chores. A blessing indeed! After lunch, Jess headed off to music while I finished blessing the house for Cathy, Rachel, and Rebecca who were coming over for vegetarian lasagna, salad, strawberries, and home made chocolate sauce! We celebrated Rebecca staying upright for 24 hours (she is having fainting spells lately, which started after giving blood a week or so ago) and watched the first two episodes of Life Goes On that Cathy and the girls gave Jessie for Christmas. For those who aren’t familiar with the series, it was a wonderful fairly typical family TV drama that had as a main character, a young man with Down syndrome (Corky, played beautifully by Chris Burke). Watching it now, it still is very cutting edge—in that Corky is in a regular class at a regular high school—and deals with the issues of inclusion and equality with a fairly open hand. I don’t know now if I find this inspiring or depressing—while the mullets and big glasses made us all laugh, the issues felt current, not dated.

A Movie Monday

On Monday, we all laid low. Jessie had a friend over from school for a Zac Ephron movie extravaganza and we didn’t deal with chores or calendars or To Do lists at all. Or not until she went to look at her chore book from school and realized that she probably hadn’t done the requisite number of chores. Students at Storefront are required to do two chores a day. These chores are based on a list provided by Storefront and are tracked in a student's chore book and need to be signed off by a parent and the student. Parents are only to sign if the chore has been done a) properly, b) independently (with a little wiggle room if first learning the chore), and c) with a positive attitude. This caused a meltdown (but I don’t WANT to not have 6 chores, it’s not fair, then I’ll have to do everyone else’s chores, it’s not fair, it’s not fair, it’s not fair). Dan did remind me that it was not the time to give her a proper definition of fair.

We did manage, somehow, to get to bed still loving each other. And I did give Jess her usual bedtime Buddhist blessing. That is how I will start the blog tomorrow: with a blessing, and hopefully, it will be blessedly short (the blog entry that is!).

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.

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

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!

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)

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)