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.  

Not So Very Special Needs

I do not have a special needs daughter in the same way that I don’t have a Down’s daughter in the same way that I am not a special needs mom. Ah, deep in denial, you say. And after all these years!

Not really. It’s just that I have become convinced that all these terms take away from the most obvious of obvious—that our children, from the moment they are born, are children first and an integral part of our families, communities, and society just as they are. And when people ask why disability it not a part of mainstream discussion, I think the answer is, in part, in how we name ourselves.

I believe that Jessie (and every person labelled disabled, or labelled in any way) does not have “special” needs, but very typical and basic needs that sometimes (often) have to be met in special ways. If we allow ourselves to admit to just how typical these needs are (for sustenance, shelter, love, a sense of belonging, an education, and a sense of being valued, to paraphrase Maslow’s oft-quoted hierarchy), we can stop focusing on making the story be about difference and start making it be about diversity. We can stop people in systems from saying it’s just all too much, too exceptional, and there is a place (a special place) for that, and start doing whatever it takes to meet those very basic and typical needs, which sometimes might be in a special place.

Maslow's Hierarchy of Needs

Once we, as parents, shifted from seeing Jessie’s needs as special (hence outside the realm of typical or normal), we became more inspired advocates, enticing service providers, educators, and administrators to see Jessie as her friends and family did—as having very typical needs that we had to get creative in meeting. She needed friends, an opportunity to learn, the chance to be valued in her community, the chance to contribute.

And once we saw Jessie’s needs as typical, our allies and advocates became the world at large, not just other parents of children with so-called special needs. And our (and Jessie’s) world and experience expanded ten-fold. There is some great beauty in the common; in all the variations and striations and unique flicks of the personal that emerge, but do not submerge what joins us. And somehow, when we allow ourselves to let go of how we label the need, but focus instead on how we meet the need, we create a space where we can struggle meaningfully, as a family, a community and a society, with how we can make this happen.

I will admit, I did not come to this on my own. It was actually the other parents in our original school community (a small, creaky, no-gym public school with sometimes fewer than 100 students and principals at the tail-end of their career) who kept pointing out that Jessie had the same needs as their kids, just sometimes we needed to meet them in a different way. This included the parent who taught Jessie how to climb up the down part of the slide when the teacher was not looking (because that’s what kids did, and Jess had trouble with timing), the one who made sure she had lunch duty in Jessie’s classroom so she could start games and make sure that Jessie was included, and the one who forgave the biting incident in junior kindergarten and invited Jessie to his son’s birthday party anyways. 

And when the principal changed and with him the supports for Jessie, it was the other parents of so-called typical children who were my allies and advocates as we did battle to remain at the school. These other parents were, and continue to be, my teachers. They keep me honest, they ground me, and when I so badly need it, they fill me with laughter. They remind me that we are none of us so special as not to belong to each other. And that is good. 

31 for 21: BOO!

Twenty years ago today, this was Jessie:

Just discovering the wonders and bounties of the world—dressed up like little red riding hood skipping merrily through the neighbourhood collecting, incredulously, candy! No wolves; neighbours to keep her safe and filled with sugar.

Today, this was Jessie:

Just discovering the wonders and bounties of the Rocky Horror Picture Show (at, believe it or not, the SAME cinema I watched it at back in university more than 30 years ago!)

Dressed up like Columbia, pockets filled with bubbles, the requisite newspaper (for the rain), and a plastic glove to snap, skipping along the main drag with a gaggle of other students dressed variously in drag, maid uniforms, little silver pants, and other standard Rocky Horror fare. Not too many wolves; and friends and neighbours to keep her safe and filled with sugar.

These 31 days of blogging have been a journey, but just a small measure of the journey from little red riding hood to rocky horror.   

Retro Jessie: Life With Jessie 6: Gym Class

Part 6 of an 11-part series about Life With Jessie (written in the early years), first broadcast on CBC radio in 1997/98. The series is being re-shared and posted here on the weekends (plus Mondays) through the month of October 2012, as part of the 31 for 21. 

I thought it was a good idea.

Natalie and Drew, two of Jessie’s classmates from preschool, have been taking gym classes once a week during the year and they love it. They get to run around, climb and clamour, jump on trampolines, and balance on beams raised to incredible mom-defying heights.

Now I know running is something kids just do, something most parents try to control. But for Jessie, even though she took her first step at a relatively young age, running is not something she just does. Fast, now fast she’s good at—fists clenched tight, knees stiff, eyes concentrated and fierce and her little feet barrelling across the expanse of open space. But if you don’t lift your feet up high an risk that moment of balancing one foot, you don’t run. You kind of, well, waddle fast.

And if you don’t or can’t run when you’re a three and a half year old, you miss out on all kinds of opportunities—like being the first on to the tricycle or being part of a game of chase.

So gym class, besides leading us to this very definite goal, would be fun, right? Jessie thought so. We went to visit the gym club and she stood riveted to the window as she watched other children bouncing on the largest trampoline she had ever seen, climbing up the tallest ladders, and rolling and balancing in brightly coloured tunnels. “My turn?! My turn?!!” she kept signing and saying as I tried to explain to her that we were just here to watch. I promised that we would come back to “gym” and she could have a turn. As I watched her, I knew this would be a great idea.

I called the club and registered her for a Thursday morning class. I explained that she had Down syndrome, liked to go fast and climb high, and used sign language. No problem they said. I breathed a sigh of relief.

I still get tense when I make phone calls like that. I used to first explain that Jessie had Down syndrome and then ask if we could participate—not knowing what kind of attitude I would run into. Instead of being reactive, I’m now more proactive: her we are, how can we do this? And to be perfectly honest, I have yet to run into a problem—but I’ve always picked our activities carefully—the Y, the library, places that I knew were guided (at least in theory) by inclusive philosophies. Places that I knew wouldn’t or couldn’t slam the door in our faces.

So we go ready for gym class. I bought Jessie new shorts and a top, we practiced jumping and talked about the big trampoline. The big day arrived. I had Jessie so pumped up she tried to leave the house before breakfast in only her diapers. “Jessie! Where are you going?” “Gym” she replied as she marched out the door. Dan rescued her and then we let him go to work, promising to call later. We did the dishes and played trolls waiting for it to be time to go. Finally, we headed out the door to the car. Which wouldn’t start.

I should have gone back to bed right then, but having convinced Jessie that gym class was her destiny, and myself that the first class is always the most important, I blithely marched in to the house and called a taxi.

When it arrived, she wouldn’t get in. “No taxi, no taxi! Gym! Gym!!” I tried to explain that we were taking the taxi to gym. But in Jessie’s mind a taxi ride was a taxi ride and gym class was gym class. Mommy drove the car to gym and a taxi ride, well, a taxi ride was just foreign territory. I wrestled her into the car, the taxi driver just gritted his teeth and drove. Jessie fell in love with not sitting in a car seat. When we got to the gym club, she refused to get out. “No out. No out. Taxi! Taxi !!” I wrestled her out of the car and left the driver with a big tip and a big grin.

Inside Jessie thought she had died and gone to heaven. All this stuff just for her! There were at least six other classes going on at the same time and Jessie had a hard time figuring out where she was supposed to be, who her teacher was, and what she was supposed to be paying attention to. I stayed to sign and to try to keep her with her class.

It was impossible. The last thing Jessie wanted was for me to direct her, and it seemed that the last thing the teacher wanted was to have to deal with Jessie in addition to five other three year olds. Jessie wanted to jump and explore all the equipment; she had her own agenda and was not going to be swayed. I wasn’t sure what to do. Half way through the class, having battled with Jessie for most of it, I carried her out kicking and screaming. I couldn’t blame her for wanting to try everything, but that wasn’t the way the class was set up. I sat her down in the grass by the fence, turned my head away an started to cry. Out of anger, out of frustration, out of fear.

We’ve had such an easy time of it up to now. Everyone welcoming Jessie’s presence and really trying to find ways to include her. Gym class felt like the beginning of the end. Reality hitting us in the face.

It’s fine to say that your program is open to people with disabilities, but you have to do more than just open the door. You’ve got to find ways for them to participate in a meaningful manner. I was angry. Angry at them for saying “no problem,” when in fact Jessie posed a problem. Angry at them for putting her in such a confusing situation, for not giving her the time to explore or finding ways for her to follow her class. But more importantly, I was angry at myself for not doing more preparation, not going I in to talk to them about Jessie and her needs, for assuming that when they said no problem, they meant it.

We haven’t gone back to gym. We’ll find some other place to run and jump and climb.

Addendum: I was so timid then! And didn’t know much about 2 year olds I guess! Reading this now, Jessie’s behaviour doesn’t seem so different than that of any other two year old! And just in case you’re wondering where we went to run and jump and climb … it was back to that gym club, where Jessie participated until at least grade 4 or 5, along with her friends from preschool and elementary school. And we had stellar teachers and great adaptations. What happened that day? I’m not sure. What brought us back? Other parents from preschool who were convinced that all our kids should do gym together and we’d find the right teacher. Ah, community!  

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?

Retro Jessie: Jumping Over the Edge [1992]

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


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

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

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

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

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

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

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

I ask different questions now.

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

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

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

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

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

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

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

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