Mama and Dad

By Louise Kinross

Today is International Day of Persons with Disabilities.

We're marking the occasion with an interview with Pia Pearce, mom to Kevin Pearce (above), an American snowboarder who was expected to win gold at the 2010 Vancouver Olympics.

Then a crash head-first into ice almost killed him.

The Crash Reel is a raw, exuberant film that follows Kevin's wild success, devastating accident, and hospitalization for a life-changing brain injury. The film takes us into the world of Kevin’s close-knit family, which includes four brothers, one of whom has Down syndrome, and the gruelling rehab that follows.

BLOOM: What is it like to have two children with disabilities?

Pia Pearce: What’s even more interesting is that in addition to David having Down syndrome and Kevin having a brain injury, my husband Simon and sons Andrew and Adam have dyslexia, so my whole adult life has been about special education. I have a doctorate in education. So it’s interesting how life turns out and we all get what we need.

BLOOM: How did having children with disabilities influence the way you responded to Kevin’s injury?

Pia Pearce: I think it was incredibly helpful to me. I had learned, over the course of time, a lot about patience and acceptance and a lot about understanding differences.

Even though David, who has Down syndrome, didn’t have major health challenges, we started early intervention with him when he was only three months old. I feel I was very fortunate in many ways with my background in education and experience with the medical field.

I had learned that you can take things that can be challenging and difficult and see a silver lining and a positive side to them. For example, my husband, who didn’t do well at school, was a huge success at home and his family celebrated all the things he was good at.

BLOOM: What kind of prognosis was Kevin given early on?

Pia Pearce: We were never given definitive information because all brain injuries are different and everyone’s rate of recovery and ability for recovery is vastly different. When we were at the rehab hospital there was a floor for patients with spinal-cord injury and a floor for those with brain injury. It was surprising to learn that everyone with a spinal-cord injury seemed to have a very similar recovery process but with brain injury there was a huge variation.

BLOOM: How long was Kevin in hospital?

Pia Pearce: He was in intensive-care for 28 days and a step-down unit for six days at the University of Utah and then he was in the Craig Rehabilitation Hospital in Denver for three months.

BLOOM: How did Kevin end up in Denver when you live in Vermont?

Pia Pearce: When Kevin was in intensive care, a good friend of ours said he’d help by doing research on rehab hospitals. He spent a lot of time on the Internet and making phone calls to other parents whose children had been in rehab. He determined that Craig Hospital would be best and then my husband and son Adam and our friend went to visit Craig Hospital and made the decision.

BLOOM: How were you able to pack up and move to Denver?

Pia Pearce: I was very lucky. It’s amazing how things fall into place and friends step up when you need them. One of my closest friends from my first year in college lives in Denver and she had a friend who had a house available. The house was on the market and they said that until it was sold, they were more than happy for us to stay there. It wasn’t far from Craig Hospital. So Simon and I moved there and our son Adam decided to take a year off from his job to be with Kevin every day in therapy.

BLOOM: The bond between Adam and Kevin really came out in the film.

Pia Pearce: They were very, very close before the accident and Adam knew exactly what would motivate Kevin. Because of the lack of insight that comes with brain injury, when Kevin came out of intensive care he thought he was way better. He wanted to go home. Adam was with him all day, every day, in therapy and was able to bring humour to the situation and make it bearable.

BLOOM: As a parent, what was most challenging?

Pia Pearce: We’re coming up on five years and Kevin is still working on his recovery. Kevin has always been very particular about the therapists he worked with. He either really liked them or he didn’t. One of the hardest parts was finding the right therapist that was best matched for Kevin.

Kevin’s had a terrible time with double vision and trying to find people to help him with his vision has been a major struggle. He’s hugely excited right now because he’s finally working with a doctor in Atlanta, Georgia who specializes in brain injury and has helped enormously.

I feel really fortunate that Kevin has been so motivated about his recovery. He was born a very determined little boy. He came out into the world with perseverance, determination and wanting to work hard and that’s why he got so good at his sport. He then took those gifts and talents and applied them to his rehab. I think the hardest thing for parents would be having a child who doesn’t feel motivated and who gets discouraged easily—and the amount of extra support that child would need.

BLOOM: What helped you keep a positive mindset?

Pia Pearce: I can’t say enough about family support and the hospitals we were in valuing that part of the process and including our whole family. I didn’t have any experiences of places where we as a family were pushed aside and that would have been incredibly difficult.

I was able to support Kevin because I was getting support from my family.

I think family support, in all different ways, is critical. I learned early on that it was better if fewer people were with Kevin, because he got easily overwhelmed. I come from a big family and I had to ask them not to come and tell them they were supporting me by not coming. Some of our family was front and centre, taking shifts with Kevin and rotating. To other people I said ‘This is a marathon, not a sprint, and we’ll need you later.’

BLOOM: Families here say they often receive tremendous support initially but then people go back to their own lives.

Pia Pearce: It’s hard for others to sustain that kind of support when it’s not something like a broken leg that gets better in six weeks. For other people, your situation falls off their radar. The same is true for the friends of the young person. Kevin was very fortunate to have very good friends. But I’ve talked to other parents who were desperately unhappy that the friends of their son or daughter were leading their child astray, minimizing their injury and saying things like ‘You’re okay. You can come for a drink.’

BLOOM: Some parents say they have to mourn the loss of the child they once had to accept their child after brain injury.

Pia Pearce: I have to be totally honest and say that wasn’t a big issue for me. I didn’t see any value in going there. Or maybe it’s what we talked about earlier—that because I’ve had so much experience with accepting differences, my focus is on acceptance. We’ve worked forever with our son David, who has Down syndrome, on accepting who he is.

I’m a firm believer in the importance of feeling your feelings and feeling the grief. I’m not about denial.

However, there was a lot about Kevin’s extreme snowboarding that was nerve-wracking for me. So I thought at least I don’t have to go to those events and stand at the bottom of those mountains freezing cold and full of anxiety. What he was doing snowboarding was very hard for me.

The other big thing was that even though he had setbacks, overall he kept getting better.

BLOOM: Some people with brain injury have a change in their personality. Was this the case with Kevin?

Pia Pearce: Some of Kevin’s friends would say he’s quite different now. But I just experience who he is now and in some ways he’s more open and communicative than he was before and more aware of how blessed he is and how important it is to live in the moment.

I understand the sense that the person isn’t exactly the same, and some people with brain injury change more than others. It’s good to acknowledge one’s feelings about who the child was in the past, but getting stuck on them isn’t very helpful.

My present moment is so full and busy I don’t see the value in choosing to spend a lot of time grieving what was or could have been. I was amazed that Kevin did as well in snowboarding as he did. Maybe if I had been the parent who wanted more than anything for my son to win a gold medal in the Olympics, I would have felt differently. But that wasn’t the important thing for me.

BLOOM: What would you recommend for parents who may be stuck in grief?

Pia Pearce: Support groups for caregivers are very helpful. I’m also a big fan of talk therapy.

BLOOM: In the film one of Kevin’s friends talks about how their roles shifted. Kevin used to be like his big brother and mentor, and now their roles are reversed. Have roles in your family changed?

Pia Pearce: I’m the mom and I’m still the mom and I’ll always be the mom! My role hasn’t changed. Adam’s role changed the most. Adam and Kevin were in the world of competitive snowboarding together and travelled together. They went from being brothers and best friends to one being so injured and the other being part of the caretaking team.

I think it’s important for family and siblings and friends to adjust their expectations of the person with brain injury, based on the ramifications of the injuries. I remember a therapist said it was hardest for parents when they didn’t get enough information from doctors so that they could adjust their expectations realistically.

BLOOM: What kind of brain injury did Kevin have?

Pia Pearce: He had an injury deep in the centre of his brain. He had to relearn everything—to swallow, walk and talk. It was like starting over with a baby, but on this warp speed. The major issues were memory, his balance and vision. He still has a lot of problems with double vision.

BLOOM: Kevin’s brother David, who has Down syndrome, plays a central role in the film.

Pia Pearce: A number of people say that David is the secret star.

BLOOM: I agree! How important was David’s plea that Kevin not return to competitive snowboarding because he didn’t want him to die?

Pia Pearce: Kevin and the other boys are very independent-minded and I realized that if I put on too much pressure it wouldn’t be helpful. But David could speak from his heart and Kevin could really hear him.

BLOOM: In one of the most moving parts of the film, David talks about hating Down syndrome.

Pia Pearce: David has a therapist and we’ve worked on that in therapy. We’ve always told David we want him to love who he is. Kevin, Adam and David have taken the film to the National Down Syndrome convention and other self-advocacy events and focused on the theme of acceptance. It’s had a very positive impact and David now is able to say that he does accept his Down syndrome.

It has been hard for him to make close friends—not so much in the elementary grades, but as he got older. More recently he has a close friend who he’s calling his girlfriend and that’s making a big difference in his life.

BLOOM: Does David work in your husband’s business?

Pia Pearce: He has three part-time paid jobs. He works in our glass-blowing business, and at a payroll agency and at our local fitness centre. He loves to work out at the fitness centre and they employ him in the operations department folding towels and filling soap dispensers.

BLOOM: What did Kevin find to replace the joy he got out of snowboarding?

Pia Pearce: He does still snowboard, but he does it for pleasure. He goes where it’s safer, where they have deep powder. He’s more aware of what a huge risk it is.

The biggest thing for Kevin and Adam right now is the foundation they started called Love Your Brain. They want to improve the quality of life of people living with brain injury. Their big push is offering free yoga classes to people with brain injury and their support workers. They’ve got pilot programs in Vermont and New Hampshire. Kevin has benefited so much from yoga and mindfulness meditation.

Kevin and Adam were just speaking to 900 managers at a Lululemon conference in Vancouver about partnering with them to promote yoga.

BLOOM: The film covers Kevin before and after the injury. Did you begin work on it before his accident?

Pia Pearce: No. We had a lot of family footage we’d taken and when Kevin began rehab, Adam and my husband Simon were great at having a camera around all the time. The doctor said that Kevin wouldn’t be able to see how he’s getting better, so it would be important to show him through video. We were able to give that footage to the director, Lucy Walker.

BLOOM: Has participating in the documentary helped or harmed the healing process for your family?

Pia Pearce: The process has been hugely helpful to Kevin and David. I can see how much it’s also helping other families who watch the film. That’s been a fantastic feeling for me: to take something that’s been so incredibly challenging and difficult and stressful and have amazing, positive things come out of it. One of the things I was happy about was that when we watched the rough cut I felt it was really honest. I felt it was an honest, accurate portrayal of who we are and how we dealt with it.

I just read this exquisite piece by Kari Wagner-Peck, above with son Thorin, 8. Thorin attended Grade 1 at public school last year in Portland, Me. Kari is a fabulous writer who blogs at A typical son about raising her son with Down syndrome. Make sure to bookmark her blog. She always has a unique perspective. I can't wait for the next one in this series! Louise

By Kari Wagner-Peck

We started homeschooling or unschooling or what you might call practising loving and respectful learning in September.

This is the beginning of the next chapter in our lives. How we got to THAT is a whole other story I have not wanted to write about. Expect a post on that soon entitled something like: It Was Not Just One Reason.

When I explained to Thorin we were homeschooling he had two questions. The first was easy to answer:

“I call you Kari?”

“If that’s important to you, sure you can,” I said.

“Thanks you, Mom.”

The second question was difficult and painful and probably at the heart of learning at home:

“Who the teacher?” he asked.

“No one is the teacher,” I said.

“No! Who the teacher?”

“We could both be the teacher?”

“No!”

“We are both the student?” I offered.

“No! Who the teacher!” he screamed.

“You need to learn reading, writing and math. I have to figure out how to help you by learning how to help you. Confusing, right?”

Silence.

“Thorin, I am not sure what I am doing, yet.”

“No!!!!!!!!”

“I am your mom. I am learning, too. I don’t want to be a teacher. I want us to be a team.”

Silence.

“Can we be a team? See if that is okay?”

Long silence.

“Can we try?” I asked.

“Okay, Kari.”

THEY say start with what your child loves. So, Thorin and I are writing a book together. My co-author and illustrator (see below) does not want to share anything but the central characters in our story although we have a title, character names and a plot. As a team member I have to honour his request.

Thorin’s word use has quadrupled, reading and math levels have increased more in two months than the entire first grade. Most importantly he is happy again.

I have learned that the greatest teacher is: belief.

Expect more on all of IT.

By Louise Kinross

Northern Irish composer Deirdre Gribbin has produced over 50 works—from orchestral music to her opera Hey Persephone!—that have been performed around the world. Her UNESCO-winning work Empire States has played in 28 countries.

Writing music began as a way to express the conflict Deirdre witnessed growing up in Northern Ireland in the ’70s. “I saw things that kids don’t normally see,” she says. “Hijacked public busses blocking the road so you couldn’t go through, bomb blasts. I went to London to study and found myself writing about Northern Ireland. At a time when people couldn’t speak about Belfast politically, I could write about it in my music and I found it a powerful tool.”

Deirdre’s orchestral piece Unity of Being: A Peace Anthem for Northern Ireland was the first international work to be performed in New York City after the 9/11 al-Qaida attacks and was the subject of a New York Times piece. “It made me realize how music could cross barriers, redefine boundaries and have such strong purpose in people’s lives,” she says. “Music didn’t need words to communicate solace, sharing and comfort.”

After her son Ethan was born with Down syndrome in 2006, Deirdre came to see music as a potential voice for people with intellectual disabilities. “Why can’t someone with a learning disability who can’t speak write the most moving or the most joyful or the most angry piece of music?” she says. “If given the right and best technical support, people with intellectual disabilities can be the controllers of their own musical fate.”

Rather than skills-based music therapy outcomes, Deidre is interested in how music making builds self-worth. “If you give someone the skills to make decisions about how they want something to sound—about the shape of the piece or the structure or whether it expresses a certain emotion—it becomes their music, and then they have the confidence to be able to assert their own decisions in other areas of their life.”

Deirdre, who lives in London, is starting a composing group for eight-year-olds with Down syndrome—called Down Right Excellent—which includes son Ethan. “We may use colours or shapes to represent notes or emotions or types of music. I’m going to give them the language of music—so not just describing rhythm as fast and slow, but spikey and energetic, and how that links into emotions. They’ll learn about how to put music together. And if you can hear something that you’ve done, the sense of self you gain from that can really build your self-esteem: ‘I can’t do this and this and this. But I can do this.’”

Deirdre says raising Ethan has had a huge influence on her work. “The expectation when he was born was that he would compromise my work, or that I wouldn’t have the time to write music. But I’ve written some of the best music in the past few years.” Deirdre attributes this to her time being more focused—she goes away on retreats where she can write all day—and a greater emotional freedom in her work.

“I’ve always felt instinctively that it’s important to express emotional states through what I write, but now it’s very much at the centre of what I do,” she says. “I feel much stronger as a person because I’ve had to develop and nurture Ethan’s life and our family’s life. When you’re the parent of a child with a learning disability—and the mainstream is often acutely aware and subliminally critical of difference—you have to develop a side of yourself that is quite defiant and tough and never be afraid to challenge.”

After Ethan was born, Deirdre became interested in human DNA and how it works. “We were told that Ethan had an extra set of chromosome 21 and I came away thinking ‘What’s a chromosome and what does that mean?’” Last year Deirdre set a fragment of genetic code to music while working as artist-in-residence at the Medical Research Council’s Laboratory of Molecular Biology in Cambridge. Hearing Your Genes Evolve is the resulting string quartet.

“I learned that my son and a child without Down syndrome have 99.9 per cent the same genetic code,” she says. “And in that big 99.9 per cent, there are more similarities than differences.”

Deirdre wants to learn more about the content of chromosome 21. “Empathy, which is seen in people with Down syndrome, is genetic. It’s something in the genetic information that’s not just nurture. We should be looking not just at negative effects of Down syndrome, but at what it enhances.”

And instead of only measuring human qualities that have a market value—such as intelligence or athleticism—we should be interested in “things that make us better people, such as being selfless, caring and open.”

Photos by William Suarez

By Louise Kinross 

I’m a little stumped.

I read this piece called Genetic screening to enhance IQ should be embraced in The Conversation. In it, an ethicist argues we should test embryos for gene changes associated with low intelligence (70-85) and discard them because of “the bad things” low IQ portends: poor job opportunities, low income, increased risk of poverty and welfare dependency, greater likelihood to drop out of school and increased chance of incarceration and being murdered (quite a mouthful).

This 2013 Psychological Medicine study seems to support the association between low intelligence and less happiness. Of almost 7,000 people, those in the lowest IQ range (70-99) reported the lowest levels of happiness compared with those in the highest IQ group (120-129). When asked to rate their level of happiness, 12 per cent in the lowest group said “not too happy” (that doesn’t strike me as a huge number. I don’t have the full study to look at what portion of the high IQ group said they were “not too happy.”)

However, the study authors suggest that it's not the degree of intelligence per se that leads to happiness, but the fact that people with higher IQs have better incomes and health and less mental illness.

But isn't stigma one of the main reasons that marginalized groups make less money, have poorer health and experience more anxiety and depression (I'm thinking historically of women, minorities and people with a range of disabilities)? What role does discrimination have to play in these outcomes?

Remember the 2012 French study that showed that even adults who outwardly say they accept kids with disabilities carry a negative bias against children with Down syndrome at an automatic, unconscious level (deduced through implicit-association testing)? In other words, they react to people with Down syndrome based on a negative stereotype they may not even know they have. “These implicit associations are the result of social values...carried by our culture,” says the lead researcher Claire Enea-Drapeau, a school psychologist in Marseille, France. “They are likely deeply embedded and difficult to break.”

However, in spite of the pervasiveness of automatic bias against kids with Down syndrome, this 2011 American Journal of Medical Genetics study found that nearly 99 per cent of 300 people aged 12 and over with Down syndrome say they are happy with their lives; 97 per cent like who they are; and 96 per cent like how they look. 

How does this finding fit with the Psychological Medicine research above?

Further, would we ever expect people in the general population to say they were almost 100 per cent happy and okay with themselves? The AJMG study seems to fly in the face of this statement from our ethicist above: “It is pretty clear that low-normal levels of cognitive function tend to reduce well-being.”

Then I googled IQ and depression and found this article about how the rate of suicide in undergrads at Harvard over a recent five-year period was two times the national average for college students. Wouldn't Harvard students be among some of the brightest? And, according to the earlier research, happiest?

I remembered this BLOOM interview we did with Holland Bloorview neurologist and autism expert Evdokia Anagnostou about how high IQ doesn’t predict happiness in people with autism. In fact, there's a high rate of anxiety and depression in youth and young adults with higher-functioning autism.

I felt like I was being buffeted back and forth between arguments suggesting that happiness was dependent on high intelligence and those suggesting it was independent of it.

And I started to think about how perhaps we were looking at this in a simplistic way. I was reminded of Harvard psychologist Daniel Gilbert’s Stumbling on Happiness—a book that looked at common blind spots in how we imagine the future. These include a lack of empathy that allows us to imagine an experience different than our own and a tendency to overestimate the negative impact of an event and underestimate our resilience.

Gilbert said this helps explain a study that showed sighted people will pay more to avoid going blind than blind people will pay to regain their sight. It also explains why most people assume they couldn’t be paralyzed and happy, even though surveys of people with quadriplegia show the opposite (in fact, sometimes they rate their quality of life as better post injury).
I wondered how much resilience on the part of children with low intelligence and their families might ameliorate some of the supposed negative impacts.

During this time I read A Healing Family, a memoir by Japanese Nobel Prize winner Kenzaburo Oe, about raising a son who was born with brain damage. In it, Oe keeps coming back to the fact that despite the challenges, having a son with intellectual disability came to define his worldview and enabled his family to adapt in ways that readied them for other challenges.

“Twenty-five years ago, my first son [Hikari] was born with brain damage. This was a blow, to say the least; and yet, as a writer, I must acknowledge the fact that the central theme of my work, throughout much of my career, has been the way my family has managed to live with this handicapped child. Indeed, I would have to admit that the very ideas that I hold about this society and the world at large—my thoughts, even, about whatever there might be that transcends our limited reality—are based on and learned through living with him.”

And further on: “On a more personal level, I can imagine a very concrete example of what happens to a society that shuts out its disabled by asking myself how we ourselves—[the Oe family]—would have turned out if we hadn’t made Hikari an indispensable part of our family. I imagine a cheerless house where cold drafts blow through the gaps left by his absence; and, after his exclusion, a family whose bonds grow weaker and weaker. In our case, I know it was only by virtue of having included Hikari in the family that we actually managed to weather our various crises, such as my mother-in-law’s gradual mental decline.”

I guess I'm not sure what I think anymore.

I had some special visitors yesterday! Tekeal Riley (left), a BLOOM reader in Bern, Switzerland, was visiting her family in Toronto and stopped by Holland Bloorview. You'll remember this beautiful piece Tekeal wrote for us: Growing up.

Tekeal visited with her mother, her grandmother (second from right), who just turned 100, and Livia, her six-year-old daughter. Livia has Down syndrome and by extraordinary coincidence Tekeal had met my cousin Jennifer -- who also lives in Bern -- at a support group for parents of children with special needs a couple of years ago.

Livia loves to dance and she soon had us in a circle, following the movements to one of her school dances -- which she pulled up in a video on Tekeal's phone. The highlight was when Livia asked me to do a dance just with her, and led me through the steps, including some "swing your partner" moves.

She speaks in High German (is that right Tekeal?) and I was thrilled when Tekeal interpreted and told me Livia had asked if I could be her babysitter (high praise!).

As we chatted, Tekeal's mom mentioned that she and Tekeal's grandmother had attended a performance of RARE in the summer -- the Toronto Fringe Festival play in which nine adult actors with Down syndrome tell their stories. RARE is produced by Madeleine Greey, a dear friend of mine, whose daughter Krystal is one of the actors. Krystal was a BLOOM role model several years ago. Tekeal's mother Bernie raved about RARE and we soon realized that the "beautiful woman with blonde hair" she'd spoken with afterwards was Madeleine.

I reminded Bernie that RARE is doing a BLOOM speaker night for us Jan. 9.

I e-mailed Madeleine last night to tell her about the connection.

"You've made my day!" she wrote.

Sometimes the world of special needs is very small and very cozy.

 

Canadian playwright Judith Thompson’s RARE debuts on July 5 as part of the Toronto Fringe Festival. The play stars nine adult actors with Down syndrome. Through a montage of monologues, members of the ensemble tell their stories in their own words. While Judith helped to curate and fine-tune their work, the play was mostly written by its performers. BLOOM spoke with Judith about the production process, and what audiences can expect. Photo by John Gundy.

BLOOM: Describe how the play was written.

Judith Thompson: We basically start for weeks and weeks of rehearsals just sitting in a circle. I’ll say ‘Let’s talk about childhood memories.’ Everybody has a story. And I have to have a script assistant on a computer getting this down.

Sometimes I ask things like ‘If I feel like a wet street on a hot day, what do you feel like?’ Their answers have been amazingly creative. Nick felt like tall sexy grass. All their images are incredible. James felt like a diving eagle. They just came up with these themselves. It’s absolutely important to me that it’s their words. They might give me a few and I’ll keep asking until I get one that really reflects who I think they are.

BLOOM: What have been the joys and challenges of working on this project?

Judith Thompson: The joys are daily because there’s so much good humour. There is, in (the Down syndrome) community, a greater emotional openness, I will say that. That is a difference that I see…They’ll give you a hug and say I love you. They’re open and out there.

We’ve been instructed to be closed in order to succeed in this society we’ve constructed. We can’t suddenly burst into tears; we have to shove it down. Even though members of the theatre community have more emotional access, the performers that I’ve met with Down syndrome – I think ‘Wow, you should lead theatre classes.’ But that same emotional availability though, if somebody’s upset, can cause problems. Somebody who doesn’t have Down syndrome may hold it in or hold a grudge, but in this community they just burst into tears right there and fall on the floor. That’s a challenge because we have to keep going with rehearsal. I never lower my expectations. We just have a hug, and we talk about it, and then we move on.

BLOOM: What are some of the things you’ve learned through this experience?

Judith Thompson: Before, I tended to just think ‘Oh, (people with Down syndrome) are God’s special angels,’ and painted them all as lovely and warm and sweet. I’ve learned to think ‘No, they’re as complicated and prickly and difficult and wonderful as you or me.’
There was a dynamic that had to shift. I was treating them unconsciously like a younger sibling or something. But I’m an adult and so are they… So they’re not cute, don’t condescend to them. They’re people of profound and complex thinking.

BLOOM: What are you hoping the performers will take out of this?

Judith Thompson: That they own it…and that they’re writers as well as performers. That’s why it was really important to me that it’s their words and they create it. Putting them in another show as performers is one thing. But they’re creating it. And so for them to have that agency I think is extraordinary for their confidence generally. They can actually make change and not be passive. So often people with disabilities are made unintentionally to feel passive. But they are making themselves visible. I’m just the guiding hand, and they are out there telling their stories to the world. No one is telling it for them.

BLOOM: Could you give me a couple of examples of what stories performers will be telling?

Judith Thompson: One of the performers talked about how his greatest wish is to have sex. He’s 22, he’s allowed to say that. And I’m not sanitizing anything that way. And nobody laughs. I mean yes, he’s a 22-year-old male, of course he does.

They also talk about the fact that about 97 per cent of parents, when they find out their baby is going to have Down syndrome, terminate the pregnancy … Krystal actually wrote a letter to pregnant women that she delivers on the stage that is so heart wrenching, and it’s basically saying ‘Keep your Down syndrome baby.’

They talk about their struggles. And they’re very much invested in their families. Some of the parents have said ‘Why is it such a serious play?’ And I’ve said ‘It’s every bit as funny as it is serious, but I’m not here to entertain.’ There’s enough of that around. There’s nothing wrong with entertainment, but that’s not what I do. Theatre has to hold a mirror up, it has to illuminate, it has to make what is invisible visible, and what is silenced, heard. And they are doing it, in their voices.

RARE tickets can be ordered online.

Many of you follow Enjoying the Small Things, Kelle Hampton's blog that chronicles her life with four children, one who has Down syndrome, in words and images. Last year Kelle raised over $100,000 for the National Down Syndrome Society in the U.S. and she's at it again this year, edging closer to her goal of raising a total of $200,000. Check out her 2 for 2 campaign video above to honour daughter Nella's second birthday.

Have you seen Noah's minute? A dad video-blogs about life with an adorable toddler with Down syndrome at Noah's Dad.

This is an interesting piece in the Globe and Mail today: Why care less about the disabled fetus?

Here's a blog about acceptance by the mom of a child with intellectual disability: Realistic optimism.

Of interest to those of you who read about the GQ story that refers to 'Style Down Syndrome' in slamming Boston as the worst-dressed in the nation.

Mock my pants, not my sister