Retro Jessie: Life With Jessie 11: Falling in Love Again [fall 1996, 6 years old]

The last 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.

I’m still reeling from the expanse of a full day before me, trying to adjust to Life Without Jessie, since Jessie is in grade one and at school all day. I miss her more than ever this fall because something wonderful happened over the summer. I fell in love with her all over again.

You know, the terrible twos lasted a long time for us. About four and a half years to be exact. And while my love and delight in Jessie never stopped growing, it certainly hit a number of rocky patches. Patches where the thought of waking up and battling over getting dressed, or walking to school, or brushing teeth just made me want to stay in bed. But this summer I can honestly say I finally reached a point where I found her persistence admirable.

It has allowed her to learn to swim, to get on the swings by herself, to talk to other children, to continue to try to play tag and hide and go seek when she can’t quite keep up. And this summer Jessie and I were actually able to do things together without either of us insisting on going in different directions.

Perhaps it’s because she has the skills to be more independent now and doesn’t need as much support—she can get most of her clothes on by herself, get her own breakfast, look both ways before she crosses the street, answer the phone, get out her paints  . . . she doesn’t always have to ask for help or have me in there interfering in her life. Or maybe it’s because I eased up this past summer.

Not by choice, mind you. I had grand plans: swimming lessons, summer camp, reading, writing. We were going to get a head start on grade one and really work on developing friendships. We were going to have a “productive” summer.

But just as our productive summer was about to start, my aunt began to lose her battle with cancer. My Aunt Kathy. I don’t know how to describe who she was or what she meant to me, except to say that she was a perfectly ordinary woman with an extraordinary impact on my life. She loved me. But I mourn the space that her dying has left in Jessie’s life. A space that has no real meaning to Jessie, but that strikes me hard and at awkward moments. Jessie needs people who just love her. People who will continue to love her and support her through the different stages of her life. And Kathy won’t be one of those people, which is unfortunate, because Kathy knew how to love unconditionally. That was one of her gifts.

So this summer I spent as much time in Montreal as I could, needing and wanting to be with Kathy and our extended family. Trying to give back a small measure of what she had given me, and scrambling to learn how to love as she did.

When I was at home in Ottawa, a bit dazed and saddened and thinking, that way that you do when you are losing someone you love, about life, I found myself watching Jessie. Not with eagle eyes, but with open curious eyes as she splashed and giggled and did tricks in the pool, or as she transformed herself into a princess and demanded that I be the frog. “No, not that way. You have to hop Mom.”

I listened as she tried to join in on conversations with other children and invented a brother and a sister that lived with her in her house. “A long, long time ago my brother and my sister . . . .” And instead of seeing the falseness of her conversational offerings, I was impressed with her ability to understand that she had to share something that was on topic, which, in this case, happened to be siblings. Searching for something appropriate and finding only what her imagination could conjure up, she boldly offers it and waits for a response. I don’t intervene right away because I don’t want to interrupt the flow of the conversation, the back and forth jangle of 5-year-old banter, in which my daughter is an active participant.

It felt so good to watch her get excited by the prospect of a new day, of going to the pool, of painting , of having a friend over. It felt so good to watch her being happy. I had forgotten, in our struggles over process, just wat a joyous, curious, excitable, perceptive, and creative child she is. I hate to admit it, but I had forgotten to let her be happy, to let her be. And Kathy’s dying made me more aware of just how important it is to be.

The summer passed, not without pain, but certainly with a lot of love.

Jessie drew many pictures for Kathy. Pictures that surrounded her at home, in the palliative care unit, and when she died. Pictures of family, of birds and sunshine and rainbows. The last picture Jessie drew for her was done in bright green paint—a picture of Kathy in bed in the hospital. And beside her she drew pictures of all the things that she thought Kathy would like with her: “Toys, a book, coffee, a ball, and you and Grams. She would like you and Grams to be there. But oh, there is no room . . .” and she pointed to the full page and looked at me with disappointment as she struggled with how to get two more figures on the page. “That’s okay,” I said. “Our spirits are with her.”

While Jessie might not have known exactly what those pictures meant to all of us, she certainly put her heart and her love into them. I was reminded, between Kathy and Jessie, that the most powerful and enlightening force is love.

I fight for Jessie. I advocate for her. I speak to doctors and students, I sit on committees, I stay up late reading and stay out late at meetings, I find resources for teachers, I struggle with existing systems and for changes to the system . . .  because I love my daughter Jessie. That is the underlying force, the ghost in the machine. Sometimes I forget why I’m doing all these things, and they take on a life all their own. Sure, they’re all noble and challenging commitments, often they’re necessary parts of planning for Jessie’s inclusion. But this summer I began to realize that if all these other activities only lead me away from loving Jessie, from having Jessie know and feel that love, then I’ve got to stop doing them. I get tired of having to struggle and be polite and find ways to support the people who are supposed to be supporting us. I get tired of being an advocate and want to shout, “Just let me be a Mom!”

Jessie loves grade one. She gets off the bus smiling, ready to play or paint or do homework. Happy to see me, but also happy because school has been such a delight. She proudly shows me her home reader and says “We have homework” then she pauses and looks at me “What’s homework?” As I explain it to her, I realize that she has been doing homework all her life. It’s time to play. To follow her lead and delight in the messy black paint we are using for the witch’s tower she has created or to act out, once again, the story of Cinderella.

This morning on the way out the door to school, Jessie and I pause for a moment on the front porch. The wind chimes that Kathy gave us tremble and gently ring in the cool wind. “Listen Mom. It’s Aunt Kathy’s spirit,” Jessie says with joy and delight. And I think about how much I miss Kathy, and how much I miss Jessie. Sometimes you have no choice but to let go. And it’s only in the letting go that the joy and delight shines through.  

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.

  

Jessie Flips: About Being in a "Regular" Class

Two weeks ago Michelle asked: “. . .  I have a question for you about when you were in the regular education classes—aside from how the students treated you at times, how did you yourself feel sitting in the regular education classes? Was the work too hard? Was it over your head? Did you understand what was being taught? Did you have modified work? How did it make you feel if you weren’t doing quite the same work as your classmates? . . . I’ve been told that during some of the time in the regular classroom the teachers/administrators feel like since the work is too hard for her right now and she’s not doing 3^rd grade level work, that it’s just making her feel bad about herself and as she gets older will cause low self-esteem."

Hi Michelle this was a great question I’m glad you asked. Here’s my answer:

In the regular education classes I felt fine and comfortable. Sure, the school work was hard but I had asked them to adapt the work to my strengths and to my level. The work was exactly the same they just modified it. And it actually made me feel like I can learn. It really helped me a lot. And I learned a lot of new things. I remember in Geography class in high school, we were learning about different kinds of rocks and the work wasn’t adapted so I raised my hand and I asked my teacher to try to adapt the work to my level. Then the next day in class we all used all sorts of visuals that my mom had made to help me learn, and it was really fun. 

This should NOT make you have low self-esteem, or make you feel bad about yourself, you need to adapt the work and if they can’t do that then what you should do is to fight for it. And if the work is too hard try to strike up a compromise where your kid / child can learn. And if they have quizzes or tests then you can use those regular pullout sessions to the resource room as extra time for your kid or child to finish the quiz. Then when they’re done, your kid or child can go back into the classroom.  Your child or kid is learning. No child should be denied the adaptations to learn. They need to learn. They have the right to have an education.

In a segregated classroom it’s hard to learn, in a segregated class you’re not really learning and you’re not really making new friends, and your separated from your friends that you grow up with and play with. But in a regular class you are learning, in a regular class you are making new friends and being with your old friends. In a regular class you feel a sense of belonging and being connected with all the students. In a regular class you work all together. Other people can learn from your strengths and gifts.

Nancy’s says: if they are saying the work is too hard for her, then they have identified what they have to do—modify it! The first response should be modify, not remove. Inclusion is NOT and never has been about everyone doing the same thing or working at the same level. 

This seemed to be something I had to reiterate with Jessie’s teachers: OF COURSE she won’t be doing the same level work in every area. She is not in a classroom with her peers because I think she is exceptionally bright or because I think that she doesn’t have an intellectual disability. She is in a regular classroom with her peers because I think that is the best place for her (and her peers and her teachers) to learn and to create a learning community. 

The bottom line is that including all students teaches all students (those included and their peers) that all persons are equally valued members of this society, and that it’s important and worthwhile to do whatever it takes to include everyone because everyone has something important to contribute. There are always exceptions and variations, but I think the starting point has to be inclusion. And inclusion only works when we accept that we have diverse learners in our classrooms and diverse people in our society. 

I think being fully included all the way through school gave Jessie two key qualities: resilience and a very strong sense of herself as a valued member of a community. While you could call it self-esteem, I think it goes much deeper and stronger than that and is related to her place in the world. 

Retro Jessie: Life With Jessie 8: School [1995, 4 yrs]

Jessie is in junior kindergarten at St Margaret Mary’s school. What a simple straightforward sentence. I can say it and people nod and smile. Off to kindergarten—how fast they grow, how cute, how wonderful. Off to kindergarten, like I’s just another step, one that happens naturally, without effort.

But, just like Jessie’s first step, it has not happened without a great deal of effort, angst, and emotion. Generations of effort, angst, and emotion in fact. Because if this were 1964 not 1994, Jessie would never have been allowed in our local school, would never have had the chance to play and learn with her neighbours, and would probably not have shouted “I’m not your friend anymore, at me when I told her it was time for bed. Oh the delights of integration!

I look at the picture of Jessie’s first day at school and cry. There is nothing in the picture itself that would make you cry, just a proud little girl with her backpack standing on the front steps, ready, just like any other child for her first day of kindergarten. She has not yet got that ticked off look that she gave me when I was hovering too close at snack time or helping her to line up for recess. The look that said—get out of here mom, I know what I’m doing and you’re bugging me.

And while Jessie knows what she is doing and is perfectly confident about where she belongs, I still cry when I look at that picture. It represents five years of struggle and growth. Five years of questioning our own values and figuring out what we believed in. Five years of getting to know Jessie and finally realizing that all we wanted was for her to have the ability and opportunity to feel at home in, to have a sense of belonging, to a community.

When Jessie was born and we were told that she would have to go to a special school, a segregated school for children like her we didn’t question it. Let’s face it, school was the least of our concerns at that point. And while it’s still true that Jessie belongs in school with children “like her,” what has changed is how we define “like her.” Like her doesn’t mean other children with Down syndrome or a developmental delay. Like her just means other children—her peers (some of whom may, or may not, have a disability or even Down syndrome), her neighbours, her friends.

We’ve learned to look at Jessie’s needs, not just her special needs. And the ones that take precedence are those that will contribute to her sense of self and belonging. Those that will give her the chance to lead a challenging and rich life and will allow her to share her very unique gifts.

When she was small, I was committed to the idea of integration for Jessie and for anybody else who had the courage and energy to fight for it. I knew that integration meant that Jessie 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.

I’m passionate about this issue, not just because I love Jessie, but because I‘ve seen and felt the effect she has had on others, myself included. She offers us the chance to build caring, creative, and fearless communities from within. The problem is, some people see inclusion as a product. It works or it doesn’t. But it’s not a product, it’s a process. And like all processes it can be messy.

Those first few weeks of school were hell. Not that anybody would have noticed, because I was so very careful about being nonchalant, relaxed, easy going. I felt this tremendous pressure to just kind of go with the flow and keep all doors open. Jessie is the first child at St. Margaret Mary’s with a developmental delay and I wanted to make sure that I appeared relaxed and comfortable enough for everyone else to take their lead from me. But underneath I was a seething mass of tension and fear.

What if . . .  the kids make fun of her, no one understands what she’s trying to say, she pushes all the time, they don’t tell me what’s really going on in the classroom, they don’t give her enough time to respond . . .  But St. Margaret Mary’s has lived up to its logo: the little school with the big heart. Soon everyone (all 115 students and 6 teachers) knew Jessie and all the other children in junior kindergarten. Her peers and big buddies run to greet her when she enters the school yard and they don’t even seem to mind that she won’t look them in the eye. When Jessie pushes, she gets pushed back; when she grabs a toy in the sandbox, Alex has figured out that she just want to join in and finds a way to include her.

The big joke in junior kindergarten this week is “1,2,3,4,5,6… banana!” All the kids are saying it and I’m sure none of the parents get it. But when it was Jessie’s turn to do the calendar, she began to count the days, got a little bit lost, and then turned to her classmates, grinned, and said “banana!”

When I see how the other children in her class and in the school have just taken Jessie in as part of their lives, I begin to relax a bit. And thank God for great teachers like Betty Clough. Great, not because she knows a lot about special needs or Down syndrome—which she didn’t before Jessie entered her class—but great because she knows a lot about children, and cares about them. I get the feeling that together, we’ll be able to figure things out and make this year a success for Jessie, her classmates, and the school. 

31/21: Jessie Flips About Inclusion

A while ago Jessie started contributing to the blog by recording video segments on her Flip video camera (hence Jessie Flips) about random topics that meant something to her. When I asked her to share her thoughts about inclusion with others (especially parents of littler ones) for the 31 for 21 challenge, she agreed to start the tradition back up again, but wanted to start by writing something first. Please note, this is ALL hers, including where the new paragraphs start. Fridays will be Jessie Flips days … and you may get a video or something she wrote. If you have anything you’d like her opinion on or you would like her to write about, just post a comment and she’ll start a list.

Hey fellow bloggers!! I’m so excited to be back and to write for all of you again. I hope all of you had a wonderful thanksgiving. Today I want to talk to you about inclusion, but first I want to give you a bit of a background to what inclusion is. All of us have basic human rights and some of those rights are the freedom of protection from harm, the right to play, the right to an education and the right to be included.

I’m Jessie Huggett, I’m 22 years old and I have Down syndrome. And when I was in high school I was the only person with an intellectual/developmental disability who was in the regular mainstream classes. To me high school was a bit of a challenge because other people were laughing at me and judging me because of my disability. I felt alone, I felt as if I didn’t fit in. And the only friends I had were in lunch club. But my mom and I made a group with other high school friends that I had made and we had called it the J-Squad. The J-Squad helped me with socializing and getting involved in extra circular activities where I could and would learn new things and make new friends. It really helped me to fit in, this group really helped me to be more included.

In a high school setting there are lots of difficulties and challenges where people label and judge people with different abilities  but if you ground yourself with friends and you socialize with others you have a solid ground and a solid base where you can stand up for what you believe in, and the people that are behind you 100% will follow in your footsteps.

I highly recommend that your son/daughter should be included in the community and at school. It’s really important that your son/daughter contributes to the community, it is also really important to be social and to make new friends. And to parents out there I suggest you should believe in your child’s gifts and talents, advocate for your child and tell them that anything is possible if you set your mind to it.

Sure, going through high school can be a challenge and is hard but my mom, dad and I are really proud of what we did. We advocated, we fought for my rights and we accomplished lots of milestones. I agree that inclusion is hard, but it’s worth the hard times because it’s important to be equal. We all learn from people of different abilities. If we don’t go to school together then how can we learn from each other?  But if we do go to school together we can make and build friendships and relationships. 

How It All Ended or College Course I, The Test

I have time to write tonight because Jessie and Dan (Dad/husband guy) are off at the college taking the Introduction to Media Studies course.

Jessie took her first college course last year. Having opted not to attend a segregated program for students with intellectual disabilities at the college (there is no inclusive program here), she decided, upon leaving high school, to focus on dance and take a few courses to see what kinds of things she was interested in. Of course, she’s interested in everything—from music recording to physics to fashion design—with the flavour of study changing about as quickly as her clothes (read: at least 3 times a day, that’s why she does her own laundry).

The last time I blogged about that course—Introduction to Public Relations—we were uncertain as to the outcome, at least in terms of her mark. We had already determined that the outcome in terms of connection (with peers, a mentor, people in the field) and learning was pretty fine. But as for her actual grade? Still a great deal of uncertainty. The whole course was largely test-based and the only accommodations Jessie had were the use of a computer and time and half. She bombed the first three tests (all the questions she answered, she answered well; but the ones she didn’t answer counted for more than half the test), scoring just under 50 %. She was devastated, but also knew that she aced all her assignments and loved the interaction in class.

So. She decided that she wanted to continue, even if she didn’t pass the course, and we would use it as a test (sic) case for determining what worked and what didn’t. We were also fairly certain that we could work with the instructor (an experienced and well-respected PR professional in the city) to make suggestions for future accommodations that would meet Jessie’s needs without major changes in course expectations.

Our goal, at least for her first course, was to go in slightly under the radar, working with the most basic accommodations offered by the college and without ruffling any feathers or making even “reasonable” demands. We wanted to see how Jessie negotiated the class; find out what her natural inclinations, talents, and challenges were without us intervening too much. After all, we were in the thick of transition, switching gears and making her responsible not only for driving (we’d help her with the map if she asked), but also for filling the engine up with gas. No more parental determining what and when to study or prepare for the course—that was now up to her. And we (read I, I with an old biker jacket with Mom From Hell emblazoned across the back stuffed in the back of the closet, where I wanted it to remain for a while longer) did not want to push the college until we knew that Jessie was motivated and would follow through to the best of her ability.

As we moved towards the final exam, we realized that there was a lot on the line. Jessie had to pass with at least a 75 to pass the course. Could she do it? This is where the instructor stepped in and suggested that Jessie write the test along with another student (whose first language was not English) in the room next door, so she could ask the instructor any questions that might help her target her answers.  Jessie studied. Hard. She wrote the test. She came out beaming because she knew that she had answered all the questions; being able to ask for clarification helped a lot. And then we had to wait. And wait. And wait. For the final mark.

Which, when it came in, was a solid B–! Which, when we thought about it, meant she did really well on the final exam. Which, when we asked the instructor, she did! She actually got a 92 and the second highest mark in the class! Whoee Jess! We had some cake that night!

But for me, and I think for Jessie as she moves forward, the icing on said cake was the delightful letter she received from the instructor after the course was over.  A full and beautifully written page of appreciation (for her contribution to the class), of thanks (for the privilege of being her first college teacher), and of advice (for growing in the world). It was a wonderfully wise and encouraging letter. One that I think shows, once again, just how blessed we are to have Jessie lead us to these inspiring and wonderful individuals. While I could easily tell you our war stories and regale you with the downright insensitive and litigious things people have said or done to Jessie (yes, there are many of those stories), what I have loved about our journey into community are the people we have met who have embraced us, been willing to struggle with us to find solutions, changed our way of thinking, and shown us how to be better people.

So I will give Jessie’s instructor the last word, with her last words:

My warmest wishes to you, Jessie, as you dance forward in life. I know it can be confusing at times. I know that you will always have more questions than answers—that is true of all of us. I know that you will never get yourself or the world figured out—none of us do. But celebrate the wonder and the confusion of life. Being alive is not a destination; it’s a place on a moving bus. And if you have family and friends on the bus who share your life and your values and your beliefs, who share the laughter and the worries and the sorrows, you know your trip will be memorable.

Who's Your Role Model?

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

Taylor Hicks, Season 5 American
Idol winner lining up for JB tickets

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

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

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

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

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

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

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

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

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

Photo source: http://igossip.com/gossip/Photo_from_Taylor_Hicks_is_not_a_Hick_Till_Proven_Otherwise--/633