Friday, November 30, 2012

Jessie Flips About: Caitlin My Connector

Hey fellow bloggers, I’m so exited to update all of you on the meeting that Caitlin (my “connector” from LiveWorkPlay) and I had at Bridgehead coffee shop after I had my dance rehearsal in Hintonburg last Tuesday.

Caitlin, Jessie's connector, from LiveWorkPlay & Jessie
Caitlin and I discussed and talked about what my goals were for the next year. I told her that I was thinking of moving out in the middle or the end of next year. I had also told her that another goal of mine was to find a paid part-time job. I’m really happy and thrilled that my life is getting started because I want to live more independently. And I want to live with friends in a supported living setting where people would come in once a month and help us with budgeting, cooking, grocery shopping and the basics of independent living skills. Caitlin and I talked about that for a long time and it was really fun.  

Thursday, November 29, 2012

Baby's Got New Shoes

While there are many loves Jessie and I share (advocacy, writing, sugar, the Grays & the Harts, loud music in the car, Maine, snuggling in bed), there are also many things that differentiate us. As she said shopping one time "Mom, you just don't get my style!" She is right. She is glitter and shine all the way, and I, well I am fuzzy socks and Birkenstocks.

So tonight, when her dance class was cancelled and we ended up at the mall we just had to go into her favorite store (Forever 21, glitter and affordable!). Where she walked (sic) out with these:

  While it is true that I may not get her style, I do respect it, and sometimes even pay for it. Lucky girl!

Wednesday, November 28, 2012

What Really Matters {Ellen Stumbo Writing Prompt}

What really matters is love.

Love underpins life. Especially life together, because that is where life leads us—together. Love is about relationship: with ourselves, our children, our family, our lovers and life partners, and, underneath it all, if you are so inclined, God.

Love is my challenge. It’s what gets me up in the morning and then beckons me into tasks and relationships I am not sure I know how to do. But it matters deeply. And it’s what really matters in my life with Jessie, as I try to mother through this transition—hers and mine. Sometimes I stumble upon love in her laughter or her singing scales in the bathroom and it pierces me with its sheer delight and depth. Sometimes I pursue it relentlessly, asking, endlessly asking, what would love do? How would love respond? Because I am at a loss and my rational logical mind is not coming up with solutions that work.

Love is underneath all the therapy, advocacy, learning strategies, rules, and problem solving. But sometimes love gets lost there, under all the layers of care that go into raising a daughter with a disability (or any daughter, so I am told). Because without a gentle touch, a hands-on or spiritual caress that honours and frames her being, these layers of care become intrusion. And I lose sight of what I want and who she is. And I have to parse the pieces and hold them up to the light to find each brilliant colour.

And to lose something too. The sense of molding, shaping, forming. God does that. And I am here to learn to love. That is the only way to mold, shape, or form that matters. And it has taken me this long to even name it. And it will take me even longer to learn it. But I get to practice. Every day.

Go see What Really Matters to others over at {Ellen Stumbo Writing Prompt}

Tuesday, November 27, 2012

Thankful Tuesday: Second Chances

This is Tuesday, so I am joining in the Thankful Tuesday party over at Micha Boyett’s blog, Mama: Monk. This week I am thankful for second chances, however you define them. This is what second chances looked like in our house this week.

The second 192. The 192 is the third (and last) in a sequence of buses that Jessie takes to get to the Food Bank where she volunteers two mornings a week. The 192 is a very important bus, as it allows her to actually get to the Food Bank warehouse without getting killed, because that last little loop in the industrial park has no sidewalks and is an artery for transport trucks that ignore stop signs. Having tried to pedestrian train her with at least three or more hour-long sessions crossing the major 6-lane intersection with minimal success (she lacks a certain finesse needed in judging traffic, a finesse that is critical to life-altering/ending outcomes), we decided that there are only really two options if she misses that last and final morning 192. Option 1 involves me dropping my work and jumping in the car to cross town and either escort her across the intersection or drive her from the bus stop to the Food Bank. Option 2 involves getting back on the bus and coming home. Yes. It’s THAT dangerous. So this morning, when she was late and I was up early working to a 9am deadline and the phone rang I almost didn’t answer it. I just didn’t want to deal with either option. It was Jessie. And she was distraught because she missed the 192. And then . . . and then her voice shot up an octave and became filled with excitement. “Mom! I see another 192!” Somehow she had lucked out and there was a second 192 just behind the one she missed. Rarely do we get second bus chances. So this morning I am thankful for yesterday’s second 192. And so is my client.

The Plan Gifts of Hope catalogue. This year, as we try and try and try to move away from so much STUFF at Christmas (for the best rule yet, go over to for the 4-rule: something you want, something you need, something to wear, and something to read), I was trying to convince Jessie that we punt the gifts for the Grays and the Harts (our alternate and chosen families) and instead clear time to spend together and pool our resources to pick some community/world service gift, like all volunteering together at the Food Bank or doing a Christmas hamper. While Jessie liked the idea of it, she wasn’t absolutely convinced. “But Mom! I really want to get Rachel earrings!” She had her heart set on it. Then, the Plan Gifts of Hope catalogue  came in the mail I put it on the table with the others (some more local, others more specific)  I had stashed away and had her look through the descriptions. Three hens and a rooster for a family. A rainwater harvesting tank for $500; literacy training for two women for $120 … the list continued and Jessie sat enthralled with what we could do if we pooled our money and how we could decide together, en famille. So I am grateful to my daughter for reconsidering my idea, for giving it (and maybe some other girl or community) a second chance.

While there are other second chances I am thankful for this week, I’m out of space and time and I’m giving my nascent cold a second chance to recede. What are you thankful for?  

Monday, November 26, 2012

Sugar Shack Sunday

Yesterday was Grey Cup Sunday, for those of you south of the border, that's kind of like the Super Bowl, and Dan and Jessie had a special football meal planned that included lots of meatballs and grape jelly. I was busy working to a deadline, but I did (again, MoM . . . maker of miracles) volunteer to 1) get Drummer Boy over here to watch the game with us, and 2) make chocolate cupcakes with peanut butter icing (and you wonder why I might have to Tell the Truth About Food?!).

It turns out that number #1 (DB) completely obliviated (I know its not a word, but it makes sense to me) the need for #2 (cupcakes), as their terms of endearment for each other kept coming fast and furious and out-sweetened just about anything I could have come up with for dessert.

I asked them if they minded sharing the variations with me (I try to leave the room when they are talking to each other on the phone or in person, as I am sure I would go into insulin shock) or with any possible readers out there. They got gigglier and gigglier as the list rolled out, laughing as they recalled when they used each endearment. It was almost a travel log of their romantic encounters ... from the boot room where they met to the board room where they advocated together for employment opportunities for people with intellectual disabilities just last week.

Here they are: I dare you not to gag. They include (in no particular order, and I have thrown a few non-food related items in there, but there were very few)
raspberry danish


strawberry tart

sweet cheeks

strawberry shortcake

hot stuff



sugar muffin

sugar lips

honey bunny

hot tamale 

hot pepper

sweetie pie

punkin pie

coco lips

my sweet apricot

short stuff

Most of those came from DB. When I was driving home he admitted, with a grin and a very endearing giggle, that he loves to call her those sweet names to make her giggle.

I have to remember to take my antacid and give thanks for weight-lifting boyfriends with a penchant for advocacy and endearments.

Friday, November 23, 2012

Jessie Flips: About Kingston

line up for Able Artists Forum
On November 21 and November 22 of 2012 I went to Kingston with Shara Weaver, Renata Soutter and Liz Winkelaar from Propeller and it was really fun. We went to present at the 2nd annual Able Artists Forum for artists with disabilities, hosted by H’Art in Kingston. We talked about Propeller and integrated contemporary dance.

I LOVE to stay in hotels
Both Shara and Renata got a drive with me and my mom to Kingston and we listened to Justin Hines’ music and we talked. And when we were in Kingston we stayed at the Marriott Residence Inn. It was so amazing. Shara and Renata were next door in room 310 and it was like they were our neighbors. Liz and David stayed with my mom and me in room 308.

Kingston Old City Hall
Then we went into the space where the forum was going to take place: in downtown Kingston at the City Hall. It is a really old building and just a walk/wheel away from our hotel. We took a look around and Renata talked to the tech person who was helping us about the CD that we were using and we looked to see if the ramp and the space was okay to dance in. Earlier that day we went over our speeches, and it went quite well. Then we went back to the hotel to rest before the show.
Shara, me, Renata checking out the space
Then we went back to the hotel to rest before the show.
I like to write to relax.

Shara was really, really tired! They just came back from Calgary before doing another performance in Ottawa and then driving to Kingston! She even put her pajamas on to rest! 
Some of the other artists who were there included a visual artist with a mental health disability (Don King from Different Strokes), a musician who is blind (Barbara MacDougall), the famous Justin Hines, who was very inspiring, and then 3 dance company/artists. So, as well as us, Propeller, there was Melissa Addison-Webster who is doing performance art in Toronto with people with physical disabilities and who are part of the deaf culture. She talked a little bit about how long it takes to create a piece and to make sure that everyone has the support they need to participate. She has lots of energy and is very creative!

Renata, Liz, Jessie rehearsing on the carpet
There was also Menka from des pieds des mains in Montréal. She talked about setting high professional standards and she showed two videos. One was a dance piece, and the other was interviews with the artists about being an artist. Some of her dancers and performers have Down syndrome. I met some of them last year and we went out for food and a beer after the show and we had a great time. It was great to hear other artists with Down syndrome speak. It was in French, but there were subtitles.   

That night after the presentations were over we socialized and talked with people. It was really fun and really exiting, I talked with Menka from Productions des Pieds Des Mains. In Montreal there is a post-secondary school for artists with intellectual disabilities. They work on drama, speech, music, and dance, and they get jobs in movies and theatre. I’d like to go there and to dance with Menka sometime. But I don’t speak french.

Another amazing moment was when we went out to tea with Melissa Addison-Webster with Renata, myself and my mom, my mom and I had a Veggie burger to share and it was really good. I even had a beer. Melissa Addison Webster is a performance artist. She is way talkative and she asked me lots of questions about my life and my boyfriend and we laughed a lot. That was fun.
Shara, me, Menke (back) then Liz and Melissa

Shara, Renata, me outside H'art
And another highlight about this trip was with H’art of Kingston On the last day we visited and went in and spoke to the students, but it wasn’t planned. I spoke about performing and teaching and advocacy. There were a lot of adults and students with Down syndrome and other disabilities there. They are all artists too. And there was a great idea: Shara and Liz thought it would be great if I went back next year to teach a workshop. We’ll work on that! So that’s a goal. My mom and I also want to go back to visit and to talk with Katherine Porter (she started H’Art) about IPSE, Inclusive Post Secondary Education. They have a program there with Queens University.

Now I have to go finish editing my talk for the transition fair on Saturday.

Thursday, November 22, 2012

The Rule of One: In Which I Tell the Truth About Food

The truth about food is that it is a continual challenge—to eat reasonable portions, to eat at reasonable times, to make reasonable choices for particular times of the day (like, for example, avoiding ice cream for breakfast), and to eat at a reasonable pace. I will not detail what defines “reasonable,” just state that it is a very generous definition.

The truth about food is that Jessie’s difficulty demonstrating self-control around food is limiting her ability to go to certain functions on her own. Because she makes herself sick, or I get calls of concern from her colleagues or mentors.

I will state that we never used food as anything other than food. And we have always enjoyed food—baking, cooking, eating, sharing, preserving. So the root cause of the challenge is something that I am not sure of. I do know that there are certain things we no longer have in our house—like ketchup and nutrigrain bars.

However, we are trying to make certain situations manageable and as easy as possible. So we came up with the RULE OF ONE. When you go out, you can get ONE muffin, you can take ONE sandwich, you can drink ONE soda, you can buy ONE croissant, you can have ONE piece of cake, etc… It covers most situations and is a pretty clear rule. One. Simple, straight forward. Those are things that always work best in the beginning.

And I was speaking to Claire, she of patience and other wise virtues, and she agreed that this was indeed a very good rule. A rule that they in fact use over at their house too. “But,” she said, because we often share our brilliant ideas and the not so brilliant (but certainly creative) variations our daughters dream up, “what do you do when Jessie applies the rule a bit too literally?” Country gal had taken Claire at her word and when she came home from school chose: one muffin, one yogurt, one rice dream, one smoothie, one juice, and one cheese as her snack.

There is no doubt, our daughters keep us thinking and reinventing..

What food rules do you have? And more importantly . . .  do they work?

Wednesday, November 21, 2012

Take Five: Patience in Five (Minute) and Five (Year) Intervals

My friend Claire has taught me patience. In all our discussions about our daughters (who share an extra chromosome and a day at H’Art studios), Claire has always modeled patience—in waiting for speech to occur, in dealing with school boards, in addressing questionable vocabulary, in teaching healthy food choices, in problem solving health issues, and often, in listening to me rant and rave about our latest disaster/challenge/insight. She is a calm voice of reason and I am reasonably  sure she was a Buddhist in some former life.

So I thought about Claire when reading one of Dave Hingsburger’s posts last week called Profound Rights: The Extra Five Minutes I Need to Think. And I thought about Beth hugging her pastor; and about Sammi participating in class; and about Jessie learning to zip up her coat just last year; and about Claire's daughter, country gal, picking up the phone all on her own (after years of absolutely refusing to even answer the phone or talk on the phone when someone called) and calling a coordinator to ask if she could join a program that she was interested in; and all the other individuals who just need a little. More. Time. To do what they have to do to become who they are to become.

I find I have to remind myself of this over and over and over again, because I forget so easily! We are a society that rushes, that values quick response, repartee, multitasking, and instant oatmeal (not to mention gratification). In the midst of all this, it is sometimes hard to remember to slow down, to give Jessie the chance to process and to grow. In both the short (5 minute) and the long (5 year) term. This perhaps, is one of my greatest challenges and one of her greatest gifts to me.  

When I go out with Jess to engage in some of those daily tasks of living—such as going to the bank or buying groceries or making a transaction at the library—I try to remember not to rush her and to actively tell her that she can take as long as she needs. I also usually remind her kind of loudly (well, not loudly, but not in a whisper) intentionally, hoping that others will hear and will think: Hey, it’s okay to take as long as you need! And will remember that when dealing with her or any other person who might need a little more time . . . such as myself when my hands are full, or a caregiver, or an older person whose fingers aren't quite as nimble as they used to be. "Take as long as you need," seems to be the kind of mantra that we might all need to continue to grow, to keep faith, and to honour our children’s right for respect. It’s the rushing for response that takes their rights away at times, that makes them doubt their ability to make choices, to judge, to decide what is right for them.

I have to remind myself (or call Claire to have her remind me) that patience is a key quality in all parenting, but especially in parenting a son or daughter with an intellectual disability. It just takes Jessie longer to process, to learn, to apply, and to explain what is bothering her. Or to accept help when she so badly wants to do it on her own.

So we have a new rule, what I call the five-minute-plus rule (this, in addition to the rule of one, which I will blog about at some other time), which is not really a rule about minutes or numbers, but about taking whatever time you need and I will always be there, I will NEVER give up! Because I know you need to do it your way, and your way isn’t my way (even though I sometimes forget that, but that’s why we have friends to remind us that our way is not always the best way). But when your way doesn’t work, I can show you my way or we can figure out a way that does work. But I won’t make you do it right now. I will wait for you to be ready and for you to tell me.

Whew. That was long! That’s because I am just learning this rule. That’s because I’m really good at being bossy and impatient and certain that my way is best. It is, truly, a learning process. And I am so glad that Jessie is so patient with ME!

Tuesday, November 20, 2012

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.  

Monday, November 19, 2012

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. 

Friday, November 16, 2012

Jessie Flips: About Hanukkah

The Hanukkah Chronicles Part 2: The other side of the family

As you all know, I will be going to Montreal for my first ever Hanukkah. Sure, there was a conflict before but we changed it all around!! I will be going to Montreal for Hanukkah on December 15, 2012. Which is great, because on Dec.8 I have community day with Propeller. And I think that this is a perfect solution.

Drummer Boy is my boyfriend and life partner and he asked me to join him and his dad  to visit his dad’s side of the family. Jeremy’s dad’s family is part Jewish Orthodox. This is my very first time meeting them and I’m nervous but still really excited. I’m excited because this is the next step in our relationship. I already met his mom’s family, their Greek side, I will be meeting his Jewish side of the family. DB already met my family at my parents’ wedding. The reason why I’m nervous is because I don’t know what would they think of me and what if they wished that DB married a Jewish woman?

I know what your thinking, your probably wondering why be nervous? When meeting another side of your boyfriend’s family you need to be yourself and be polite. DB had told me that this side of his family would love me. Sure, it might be scary at first but it’ll be worth it. And in the end if they like me then I’ll be happy.   

It’s great that DB and I are meeting both of our families because it gives us time to get to know each other more and both of us get to know the other’s family traditions. It’s amazing how you can explore the other’s family faith.     

Thursday, November 15, 2012

Retro Jessie: Stop Labeling, Start Enabling

Jessie at 14, with sister friends Alex (l) and Zoe (r)

My daughter Jessie is 14 years old. She loves french fries, short skirts, Hilary Duff movies, boys, writing, dancing, listening to books on tape and baseball. She dislikes all vegetables, cleaning her room, detentions and being forced to walk long distances because her mother thinks it would be healthy for her and the environment. She also has Down syndrome and has been variously labeled as having an intellectual disability, a developmental disability, and special needs. But this so-called “disability” is only one small part of who she is. She is not her diagnosis; her potential and her gifts cannot be defined by her Down syndrome or whatever label you might choose to attach to her. In fact, among friends and family, and in typical settings (including school), her label is irrelevant! What is relevant is her own unique combination of talents, skills, and learning styles that describe who she is, where she wants to go and what she has to offer her friends and community.  

Labels can be useful – but only when they actually convey information that is useful. “Diabetic” can be a useful label in certain situations. “Explodes on impact” is another useful label. But disability labels are rarely useful in the real world – they are too general and often promote limited, outdated and discriminatory responses to an individual.

When our daughter was a toddler and we were applying for Handicapped Children’s Benefits, the worker who came to assess our situation joyfully crowed “Downs syndrome! Oh I love down’s kids – they are so happy!” I was astounded, not so much by the gall, but by how off-the-mark that descriptor was. While our daughter certainly had many happy and joyful moments, come 4 o’clock (the witching hour) she transformed herself into a holy terror intent on communicating her displeasure with both the world and myself. Happy was not a word I would use to describe Jessie. Joyful, playful, persistent, determined, full of glee, mischievous – any one of those might apply, but seeing her as a “happy child” just because she had Down syndrome seemed to me, to take away the richness and strength of her personality and gifts. I was speechless, and quickly decided that was a good thing to be in this situation. We desperately needed any additional financial support we were entitled to, and if it meant biting my tongue and letting the label define our daughter for this stranger, then I was willing to do so.

But it made me think about just what our bottom line was and how far we were willing to go to promote and encourage Jessie and our community to see all children and people as individuals first. While the label “disabled” can be useful for access to services and information (like quick passes at Disney World, the chance to perform at the Disability Arts Festival in Toronto, tax benefits, school funding, and important research on learning and Down syndrome), it is rarely useful outside of that context. Our experience has been that the label limits people’s perceptions of our daughter’s unique gifts, talents, and potential, particularly in school settings. In those situation, it has been used to place very severe limits on her participation and educational achievement – and so we refuse to use the label and force the school to look at Jessie’s individual strengths, needs and gifts. While it has not always been a smooth ride, it has been both enlightening and empowering. And it has served Jessie well (the bottom line) in supporting her sense of self as a contributing, capable, and equal member of her school and neighbourhood community.

Each year we meet with the school team for an annual review of Jessie’s strengths, needs, and placement. Previous years she presented her strengths and needs and profiled her year, then left while the adults remained to battle it out. One of our discussions has always been the label. For both practical and philosophical reasons we have refused the Ministry definition of our daughter’s “disability,” finding it to be discriminatory and limiting.* We allow them to use the standard label, but sign a strongly worded disclaimer stating that we agree with the label for funding purposes, but strongly disagree with the description.

Our daughter just turned 14. In the spirit of “nothing about me without me,”  she was fully included in her IPRC (Identification, Placement and Review Committee) meeting this year. Jessie was adamant that she did not want the label “intellectual disability.” That’s not all of me, she said. “That doesn’t tell you who I am. If you have to give me a label it should be, and she paused for a moment as she thought, it should be… ‘Creative Jessie.’” 

What kind of schooling might our children experience if we listened and acted upon the voices of people like Norman Kunc (1994), a disability rights advocate who himself has cerebral palsy:
"I am not broken! I am not broken! I am a representative of the diversity of the human race!"

*Back in 2004, the label intellectual disability also came with a descriptor that included not being able to “profit” from placement in a regular class.

Wednesday, November 14, 2012

How Being Jessie's Mother Helped Me Fulfill My Horoscope Today

I am sitting on one of the big comfy chairs at the Bridgehead coffee shop with just the right slant of late afternoon November sun backlighting the steam rising from my café au lait. This is the five-minute slice of my life that I am savouring and pretending—if I close my eyes just so and squint, the way you do to see things slant—to own as reality. But this five-minute slice belies the three-hour hunk where you would have found me huddled with Jessie in our teeny tiny bathroom holding her sweaty head as she retched, for hours, over the toilet.

Forward to 8 am phone calls trying to rearrange her day and buy some space for her to recover, while still meeting some of her commitments, particularly those that would have caused her great distress to miss. We settle on the noon-time speech on employment and mentoring for the Women in Leadership meeting and a pared down afternoon dance rehearsal for an upcoming funder meeting, and we punt the morning meeting with a mentor to work on a speech and the evening performance at the university students' union. Then, I rearrange my day to make it all possible, which, in order to give Jessie an exit strategy just in case she feels sick again, means putting my client’s work on the back burner and becoming chauffeur and accompanist.

So, what started out as a full day of work (because Jessie would have been out on the road doing what she loves best all day, and getting to and fro on her own) quickly bled away until all that was left was the chance for a quick pencil edit, in the coffee shop, of a two-page summary.

The trick, of course, is not to hold on to expectations, but to be nimble and quick in shifting gears and not holding anyone hostage in the transition. The trick then, is not to wonder how you would ever hold down a job that wasn’t freelance or to count the hours not billed, but to roll over wonder that you got to sleep in (never mind that you only got four hours sleep) and wake with the sunlight dappling the trees. To sneak into the Women in Leadership meeting and listen to a wonderful discussion about mentoring women and people with disabilities and to the talented and bright and energetic youth with Down syndrome captivating the audience with their dreams, hopes, talents, aspirations, and challenges in finding employment and careers. And to sit in a coffee shop with a café au lait and a newspaper horoscope that reads:

If I am not fulfilled, at least my horoscope is—because being Jessie’s mother certainly ensures that I don’t “waste my day entirely on work.” 

Tuesday, November 13, 2012

Thankful Tuesday: A List

This is Tuesday, so I am joining in the Thankful Tuesday party over at Micha Boyett’s blog, Mama: MonkThis week I am thankful for:
  • Mentors for Jessie who handle her chronic lateness and disorganization with just the right balance of lovingkindness (Jess, you are a very important part of this organization and we all love your contribution and creativity and hard work, so we would never fire you or ask you not to come back) with realistic and accommodating consequences (we won’t pay you for the class you were late for, especially since you were leading it). I am learning so much from them about gentle teaching.
  • Boyfriends who take girlfriends (who happen to be daughters) to Remembrance Day ceremonies and hold them when they cry in remembering all those who died during war. This was Jessie and Drummer Boy’s first date totally devised, arranged, planned, and executed by themselves, independently. What a thoughtful and heartfelt date. Jessie returned at the end of day still swooning from sharing a meaningful time with DB.

  • A lover and life-partner I can call a husband (because we arenow married, after 25 or so odd, really odd years) who is willing to put all to do lists and agendas aside to walk the Westboro strip with me in balmy weather, wandering in and out of bookstores and shoe stores and coffee shops and little local boutiquey design stores, holding hands and kissing every now and then. Ah, for those late warm fall days and someone to share them with.
  • Friends who read your blog and take the time to email you (because you have both been in and out of town and in and out of work, and have not actually talked or seen each other for more than a week) and say they like it and say that what you write resonates with them in a way that is not limited by disability or even circumstance. Friend who like your writing and encourage you to keep doing it, even when what you write about is streaked with desperation or frustration.
  • Opportunities that emerge that coincide with Jessie’s passions and gifts—for performing, for advocating, for infiltrating the mainstream—and that make the world seem like her oyster. She is (we are!) so graced to be living at this particular time, when barriers have been broken down and she is part of a new generation forging new roads into the heart of the community. As an early traveller and pathfinder, she is making connections and dealing with people who crave her generation’s input and are willing to see her and her peers’ gifts and contributions. So even though there is still prejudice, mostly there is opportunity and openness. She is well loved and respected. That is a good life.

And for Mama: Monk’s Thankful Tuesdays, so I can pause at the beginning of my week, in the midst of deadlines and rescue missions, and breath in blessings.

What are you thankful for? Write is and post over at Mama: Monk

Monday, November 12, 2012

Lines, Lines, Lines

Last week Cindy  wrote about whether we keep teaching, instructing, deciding for our sons and daughters (with intellectual disabilities) for the rest of their lives … or how and when we let them make their own choices, poor ones included. That is what I find to be the absolute hardest part about parenting through transition into adulthood and it is so good to hear what other parents do. I love that Joyce gives choice within limits that leaves Sarah in charge, but not in jeopardy. That Cindy wonders, as I do, what exactly you are to do when you know your son or daughter can’t see the consequences of their choices, and those consequences loom large over health, quality of life, and relationship. This is my take (today) on some of those issues.   

This period of parenting or mentoring into adulthood seems to me to be all about lines: drawing the line, crossing the line, walking the line, toeing the line, hanging it all out on the line! Just one big etch-a-sketch mess of lines that we often need to be able to erase just by shaking all our lives and starting over.

And we seem to do that every week—redraw the lines on the map of independence. Yup, she’s ready for that and oh boy, she is so NOT ready for that, and man oh man was that a mistake, and wow, I never would have thought she could handle that, and oops, but what a great learning experience. There is so much growth happening at times (as she pulls a speech together at the last possible minute and delivers it with perfect timing, or wakes up early to have a shower, make a healthy breakfast, and pack a healthy lunch completely independently AND gets out the door on time, properly dressed for the weather and with her bus pass) and then you turn around for a split second and it’s a room full of dirty laundry, no dance clothes to be had, sleeping in past the alarm, and eating 3 cookies for breakfast (but they have oatmeal!) as she rushes out the door in the middle of a rainstorm without a raincoat.

Planning detritus 
We continually bounce around between WHEN will she learn? HOW can we best help her learn?, and WILL she actually ever learn? And there are so many gray areas that are unknowns. So Dan and I spend Saturday mornings—after dropping Jessie and the perennially good-natured Jason the drummer off to help lead the children’s dance class—at a cheap dinner eating eggs over easy with bacon and homefries, and drawing out the lines of support, direction, and danger.

Without going into the food issue (that’s a whole other realm), we have slowly, over the past year, developed a strategy that is not a solution, but certainly a way to go forward.

When Jessie was younger, we built scaffolding and relationships around Jessie to make her pursuit of her dreams and passions in community possible. Then, as she matured, we began to try to find ways to take bits of the scaffolding away to give her more control over and responsibility for her own pursuits, endeavours, and relationships. Now we are in the period where she wants nothing to do with anything that smells of direction, unless it’s offered in the spirit of a meek house elf making magic and then quietly disappearing. I, unfortunately, have never been very good at meek, much to Jessie’s chagrin. So we bounce back and forth between “don’t tell me what to DO!” and “you HAVE to help me!” I often end up in bed with the covers over my head reading Lamentations or Job. Sometimes a Psalm will help. And when all else fails, there is laughter.

But it is a very real challenge to figure out what the non-negotiables are. Do you let your son or daughter . . . eat until they feel sick? Wear dirty clothes to work? Wear sparkly gold-lame clothes to work? Go for days without washing? Miss parties? Doctor appointments? Go late to work? Forget their lunch? Cross at dangerous intersections? What things are teachable, and what are not? When Jessie was little, we assumed ALL were teachable. We are learning now that all are not that easy to teach and that she may need some support in some areas for a very long time, and that is okay. But how do you determine where to keep going (patience, patience, it may not happen in your time, but her time), where to intervene (keep the bank card at home so there is no risk of spending unreasonable amounts of money in one shopping spree), where to let natural consequences do the teaching (if you forget to set your alarm, you don’t wake up, you’re late for rehearsal, and you let down your friends and co-workers), and where to just let go because it’s not really your business (sparkle blingy tops to a yoga class)?

There are so many variables at play . . .  and not all of them are predictable. How is it that Jessie learned to do an impeccable job on her teeth, including mastering the waterpik, once she got braces on with very little coaching from me and she needs no reminders to brush properly twice a day, but she won’t dry herself properly after a shower and has to be reminded to actually have a shower? I really don’t know what makes or motivates her to learn and master certain skills. She wants to learn to cook, but won’t follow step-by-step instructions.

So, we and she are learning by trial and error. It’s the trial and error and review and discussion that help us figure out what kinds of supports she still needs, and what areas we should be letting go of. The bottom line is, will it kill her? If yes, we intervene. We teach, but we’re also not willing to live with the consequences, so we intervene.

If it won’t kill her right away, but may in the long-run, we try to develop some simple rules and supports (around food, it’s the rule of 1: take ONE cookie, ONE slice, ONE, ONE, ONE, you can’t go wrong with one, its simple, it’s a good place to start, it doesn’t require much thinking or decision making) and are ready to intervene when it’s just not working.

If it won’t kill her, but will have a negative effect on her independence, being in community, and quality of life, we try to figure out what supports are critical and put them in place. This is still a work in progress and we have a growing list on the white board that now includes (these are the things that we have found to be critical in supporting her freedom and independence): Sunday review of the calendar and upcoming weekly commitments; Thursday review of accounts & spending, with monthly account session at the end of the month; 1st of the month shopping for basics (bus pass, toiletries, hair); nightly review of what’s up the next day; and an agreed upon basic daily routine (based on a 9 to 5 work day, where there is no media (except work, social, or education related) and a small list of tasks (check, respond to, and file email; work on goals; do chores) to be completed.

And if it won’t kill her at all, we just step back and let her be her sparkly, blingy, Glee-loving, song-singing, romantic, creative, so totally unorganized, messy self.

Friday, November 9, 2012

Jessie Flips: About Glee and the R-Word

Glee as Loser is right!
Last night I watched Glee with my family in the playroom in our central house in Old Ottawa South. And in this specific episode Finn Hudson said the R-word and I got so mad and really sad because I looked up to Finn as well as the actor Cory Monteith. He should NOT have said that. That word is a word that is hurtful, mean, rude and most importantly really Offensive to people who have Down syndrome just like me. How could the writers do something like this? I can’t believe they would they script that line. I think the writers should know that this word, the  R word hurts people’s feelings, the R word is a word that is harmful. It discriminates people with Down syndrome and I hate it.

The show is about inclusion, the show is about celebrating who we are even though we’re different.  The show is about diversity and creativity. And then they use the R word. Come on writers!! Can’t you see that people who have Down syndrome are people too, can’t you see that we also have a voice. Can’t you see that we ALL have the right to be included. 

Thursday, November 8, 2012

A Trip

Jessie and I drove down to Montreal for lunch today, to visit with my Mom (Jessie’s Grams) in her new apartment in a seniors’ residence. While the condo she and my Dad had lived in for more than 16 years is still on the market, she decided to go ahead and make the move this past fall. When Jessie found out that the condo was being sold and Grams was moving she cried for days. “But where will we . . . ?” There is that. As her move changes everything about us being in Montreal as a family. No more staying in the guest bedroom, no more quick afternoon jaunts to the movie theatre, no more Jessie & Daddy swims in the pool downstairs, no more Christmas, Thanksgiving, or Easter dinners—or at least not in the way we used to celebrate them. It will all be new and different, and Jessie doesn’t always do new and different too well.

But today, when she walked into the apartment, her eyes lit up, first at Grams, and then as she surveyed the room. While the apartment is probably one-eighth the size of the condo, all the important bits seem to be there: the art, including the John Little painting of Dorchester Square and the Molly Lamb  parade; the bridge table; the colours and chintzes that, although new, are so typically my mother; the books and the mahogany desk; and the rich warm colours with bold accents that have always graced my mother’s choice of décor.

Grams, Jessie & cousin Derek in Montreal
Jessie turned to me and smiled, and then grinned and ran into Grams’ arms. “I am so relieved!” she said, “It is just like home!” Meaning that it was just like the condo, just like all that she was familiar with and that was important to her. And I realized that she was worried that a new place would mean a whole new Grams and a whole new relationship and a whole new way of being. But it is, indeed, like home, in all the ways that matter. And I am not so sure that that has anything to do with the paintings and the décor, or only to do with the paintings and the décor in as much as they reflect who my mother is, and that which she brings with her where ever she goes. And that, as my smart and loving daughter recognized, that inner kernel of selfhood and rooted grace drawn out to bloom through relationship, is what makes it familiar and “home.” Because she could still be with Grams in this place, and because Grams was still Grams, then it was still, much to her relief, home. 

Wednesday, November 7, 2012

The Hanukkah Chronicles, Part 1

This is how Part 1 begins. Part 1, because I know there will be other parts given that a) this is Jessie,  b)this is Jessie in love, c) this is Jessie in love with Drummer Boy (DB) who is as organizationally challenged as Jessie is, and d) this is seen as a MAJOR MILESTONE on the road to WEDDED BLISS, which involves a beach wedding and living happily ever after in Orange County California with Drummer Boy, as he pursues his wrestling (WWE to be exact) career, and his best friend, who will be managing him. Jessie, of course, will be walking the red carpet right onto the set of Glee along with Lauren Potter. Did you catch all that? So. Just in case you got confused, this is Part 1. And this is how it begins.

Drummer Boy has invited Jessie to celebrate Hanukkah with his father’s family in Montreal. This will be a chance for DB to share his religious and cultural heritage with her, not to mention introduce her to his paternal Grandparents!  This is a BIG deal, for both DB and Jessie. They have talked about this for a long time, trying to figure out when it might happen. This is almost even bigger than, well, other moments you might conceive of in your wild imagination. Bigger certainly if you measure it by emotional energy.

So, they are ready for this. Jessie’s first Hanukkah, first time meeting DB’s bubba. And DB says it’s in December, and Jess is already nervous (I swear she watches the soaps without me knowing, else how to account for this nervousness?) and then we ask DB’s Dad for the date.

December 8. December 8 sounds awfully familiar to me. Too familiar.

After DB leaves with his Dad, we look on the calendar and find that December 8 is Propeller Dance’s Community Day. A very big performance and celebration. Jessie falls to the floor, a puddle of tears. “Remember . . . “ I say and Jessie finishes the sentence through her tears, “every problem has a solution …” but I can tell that she doesn’t quite believe this one.

I do get to hear a diatribe about the importance of sharing your partner’s religious background, about the importance of meeting family, about … well, a number of things that I can’t quite recall because I stopped listening after the first sentence. She didn’t have to convince me of anything. I knew it was important to her and DB and told her so. But somehow this little glitch fed into her bizarre and reoccurring need to re-imagine her and DB as star-crossed lovers overcoming exceptional odds to be together. Exceptional odds like, for example, me and doctor lady (DB’s mom) driving them on dates, or maybe us even setting up dates for them, or maybe us paying for those dates, or maybe us making sure they have uninterrupted and private time together, or maybe … you know, those kinds of exceptional odds.

After recovering from her oh-the-world-is-unfair-and-no-one-understands-true-love meltdown we discussed the options and I assured her that if it conflicted with Propeller, this was one time where I thought she should do exactly what she judged to be best, as I understood how important it was to share Hanukkah with DB and his family. I think I left her gob-smacked, as I had to explain this about 6 times, assuring her that this was probably the one time where work might not take precedence. Of course, I was wrong. Wrong because Community Day is a big day and Jessie is definitely expected to be there as part of her job as teacher and performer.

Three public (i.e., in rehearsal) meltdowns later, I make an executive decision. I step back from real world consequences and having her develop her frontal and other cortices by problem solving and decide to just tell her that we will make it possible for her to do Community day AND get to Montreal in time for Hanukkah.

Guess what I’m doing late in the afternoon on Saturday December 8, right after Propeller’s Community Day?

Thank you, thank you. Just another Hail Mary Pass brought to you by MoM: Maker of Miracles.   

Tuesday, November 6, 2012

Thankful Tuesday: Emptiness to Fill

This is Tuesday, so I am joining in the Thankful Tuesday party over at Micha Boyett’s blog, Mama: Monk . This week I am thankful for empty spaces. Empty spaces that leave room to breathe, room to let beauty appear, room to notice the otherness and is-ness of the person you meet on the street, in your house, at your table, in your arms. If I forget to empty myself, I leave no room for my life to be filled with grace, for it to be graceful. Instead, in the filled-upness of our rushed and rushing lives I erupt into frustrated anger.

Without the emptiness, I cannot leave room for Jessie to be Jessie, to come to her own conclusions or comeuppances. Without the emptiness (the calm emptiness that comes from letting go, not the deflated emptiness that comes from giving up) I cannot breath into mothering, but instead rush in with a whoop or an extended sigh that indicate my discontent with the way things are. And what is mothering, especially during the transition years, but a letting go? A pushing out, a release, the cool echoing air of emptiness. It takes some getting used to, even if you have trained for and imagined this as the pinnacle of your good mothering—this letting go, this independence. I do not do it well.  

But with Jessie, empty spaces—breathing, counting, calming, patience—are required to create room for her to bloom. So I am thankful for the people and the places and the practices that create a certain emptiness in me, that allow me to be more present to the unfolding of the lives around me. And thankful to Jessie for being persistent enough in her Jessie-ness, in what she would call her own true self, for being unwilling to give in or up, so that I have had no choice but to back off and nurture this emptiness each day . . . so there is room for grace and gift and otherness.

Monday, November 5, 2012

Today I Pick Love

A full weekend life—with dinners and dancing and raking and planning—bleeds exhaustion into the cracks and crevasses, leaving time enough, just enough only, for either love or blogging. I pick love. Today I pick love. Because it is Sunday. Because I have too often picked other enterprises over love and have then been diminished, and have diminished. So. Love it is.

I will tell you how it all works out tomorrow.