Play about Down syndrome extended

Last Friday, I was lucky enough to see Judith Thompson’s play RARE staged in Toronto. It was equal parts hilarious and uplifting, moving and devastating. Through their stories, the actors’ voices and experiences came alive onstage.  Photo by John Gundy.

-Megan

RARE, a Toronto Fringe Festival play starring nine adult actors with Down syndrome, will return briefly to the stage in August. After being staged in July as a part of the regular Fringe Festival, the show has been selected as one of eight best-of-Fringe plays to run repeat performances.

In RARE, actors tell their real-life stories, sharing their fears, desires and perceptions of disability. No subjects are censored, with performers exploring topics like death, sexuality, and their simultaneous hatred of and pride in their own disabilities.

Cast members, like Dylan Harman, hope that the play’s frank discussions will prompt audiences to re-evaluate their treatment of individuals with developmental disabilities.

“I hope they will learn to speak to people with disabilities like adults,” he says. “Because we’re human too.”

For other cast members, the play functioned as a personal growing experience. Actress Krystal Nausbaum, who performed in the American film The Memory Keeper's Daughter, says that working in RARE was uniquely rewarding.

“It’s really different than other plays…,”she says. “I can relate to these stories.”

RARE will be staged August 1-3 at the Toronto Centre for the Arts. Tickets are available online through Ticketmaster, or at the centre’s box office. 

Story by: Megan Jones

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In harm's way

Children with disabilities are nearly four times more likely to endure abuse than their non-disabled counterparts, concludes a study commissioned by the World Health Organisation (WHO). The study’s results were published on Friday in the Lancet.

According to the report, children with disabilities are 2.9 times more likely to experience sexual violence and 3.6 times more likely to endure physical violence than non-disabled children.

Kids with mental illnesses and intellectual disabilities are among the most vulnerable, facing a risk of sexual violence 4.6 times greater than their non-disabled peers. Difficulties with communication often increase the likelihood that children will not be listened to, understood or believed in the event that they report maltreatment.

The study also found that kids living in institutions face a higher risk of abuse than those who live in family homes.

The report is based on data from 17 different existing studies from high income countries like the United States, Sweden, Finland and Israel, among others. Overall, it reflects data from over 18,000 children. Of the children with disabilities studied, 27 per cent overall had experienced some type of violence, including physical or sexual abuse, and emotional neglect.

Researchers say the increased risk of violence results from the stigma, discrimination and lack of knowledge that surround disability. They also point to the dearth of social support for caregivers as a factor.

Those working on the study hope that by exposing and highlighting risk, the research will lead to better care practices and the implementation of more serious abuse prevention strategies for children with disabilities.

They also mention the need for research into abuse rates in mid-to-low-income countries, where rates of disability and chronic illness tend to be higher, and support services are few and far between. Currently, little to no data exists for these areas.


Story by: Megan Jones

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Ian Brown on The case for imperfection

The Boy in the Moon author Ian Brown gave a brilliant talk at Holland Bloorview last week. He captivated everyone. You must check out this short clip.

I am off for three weeks and one of the places I'm visiting is the L'Arche community that Ian speaks about in France.

My student Megan will be covering for me while I'm gone.

Happy summer! Louise

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Single parenting in the world of disability



Maria Niembro talks candidly about the challenges of raising her son Francesco, 7, as a single parent and offers practical advice for other parents flying 'solo.' Maria is a member of Holland Bloorview's family advisory. Thanks Maria!

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RARE gives voice to people with Down syndrome

 

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.

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Busted

What do you do if you and your partner disagree on how to handle an issue with your child?

Let's say it's an issue that rankles, so one day you bring it up at a meeting with a social worker you're seeing for your child. And the therapist pretty much sides with your partner and even suggests that it would be helpful for you to get therapy (which you've already had lots of). She asks you if you were to let go of the vigilant worrying you do for your son, what would be left? What would be underneath? And she suggests that maybe it would be grief or maybe it would be something else.

If you're me, you sit on it for a while and do nothing.

Then you ask a friend who's seen the same social worker for her child what she thinks. "You're talking to the wrong person if you think I'll talk you out of therapy," she says. "All I do is therapy!"

Then, because you're so stubborn, you convince your partner that a second therapist, a cognitive-behaviour therapist, should weigh in on the matter. You're pretty sure this therapist's opinion will be more in line with your own.

So off you go. The second therapist suggests that this is more to do with you, your relationship and parenting styles. She isn't willing to criticize your partner's approach. She feels the issue is something you together should keep an eye on, but at this point she isn't red-flagging it and she isn't supporting your version of how to handle it (that hubby follow your precise recommendations).

Which brings you all back to the point that maybe there was something to what therapist number one had to say about you. That maybe the 'problem' isn't outside you, but within you, something that you have to take a closer look at.

Meanwhile, hubby is sitting on the couch, fighting heavy eyelids to stay awake and focused on therapist number two. "She never got to the point," he says afterwards. "I didn't really understand why we were there."

Busted, you think.

I guess you can never have too much therapy.

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Mom backs real blended food for tube-fed tot

By Jennifer Han

My twins Andrew and Eleanor were 28-week preemies. Andrew came home from the hospital with three stomach surgeries under his belt and significant brain damage. The brain damage caused cerebral palsy and epilepsy, which put him at risk of aspirating and made feeding difficult.

At 21 months he had a fourth surgery to place a G-tube to ensure he was getting nutrition safely and in hopes of boosting his calories.

Andrew, I was told, could no longer eat real food. Instead, his diet would be a formula that was described as nutritionally complete, but which I discovered is made up of 53 per cent corn syrup.

The G-tube solved the problem of getting formula into Andrew, but it exacerbated his reflux and vomiting. Andrew spit up every ounce, retched, lost weight, never slept and stopped smiling. Instead of producing stools, he had green diarrhea once or twice a week. He was on the brink of total dehydration and doctors suggested more surgery: a J-tube, nissen-fundoplication or GJ-tube, but with the caveat that they might not work.

Then, while scouring the Internet for stories about children with severe reflux, I came across something called the blenderized diet.

In this diet, vegetables, fruits, grains and meats are blended in a super high-speed blender until they become liquid, then fed through the g-tube.

Families out in the blogosphere said that real food had a calming effect on their children’s stomachs and as a result, stayed down.

I had no idea that real food was a possibility with a G-tube!

This diet – which was never presented to us as an option by our medical team – has given us our boy back.

The blenderized diet isn’t new or radical. Feeding tubes have been around for decades and patients were once fed mostly blenderized food. In the 1970s commercial formula was introduced; hospitals embraced the convenience and never looked back.

I told our doctor and nutritionist that before we did any more surgery, I was going to try the blenderized diet. They weren’t happy. They said they had never had a patient go this route and that formula was best. With some reluctance, our medical team agreed to a trial.

The first week of the diet, Andrew did not spit up once. By day four, he was completely off formula and having nice bowel movements one to three times a day. He went from taking multiple 10- to 15-minute catnaps a day to a single one-to-three hour nap. He started sleeping 10 to 11 hours straight through the night with no feedings.

At his weigh-in two weeks after the start of the diet, he had lost a few ounces. I was disappointed, but knew that as the body adjusts from a mostly-sugar diet to real food, this was common.

Ever since, Andrew’s been gaining weight!

He may spit up once a week or so but it’s usually if he’s overtired or constipated.

Now that Andrew’s body is responding in a healthy way to real food, it’s clear that formula didn’t agree with him. We are bewildered and beyond pleased at how amazingly fast, drastic and profound the change has been. Not only is the blenderized diet treating Andrew’s severe reflux but it’s made him happier and healthier and prevented further surgery.

We know this diet isn’t for all children with severe GI problems. However, I believe medical staff should present it as a treatment option along with standard surgeries.

While the blenderized diet is a foreign idea to most North American hospitals,
there are a few – like Children’s Hospital of Philadelphia and Cincinnati Children’s – that recommend it. In fact, in a 2010 study by Cincinnati Children’s Hospital, 75 to 100 per cent of 33 children with failed nissen fundoplications who trialed the blenderized diet showed an immediate reduction of 50 per cent or more in reflux and vomiting.

For Andrew and our family, the blenderized diet has been life-saving.

Before beginning any change in your child’s diet, run it by your medical team, as it’s important that you have a supportive doctor and dietician to guide you.

Blenderized diet resources

Homemade Blended Formula Handbook by Marsha Dunn Klein

Ainsley Rae blog: great practical tips from a mom

Blended Food Resource Group

Facebook group for the blenderized diet

Andrew’s first blenderized recipe

This one comes out to about 34 calories per ounce. His Elecare formula is 30 calories per ounce. In the other recipes I’ve come up with, ratios for protein/grains/oils/veggies/fruits stay the same. I just swap different foods each time. His blends tend to be between 30 to 40 calories per ounce.

3 cups of roast chicken 700 calories
1 cup orange juice 100 calories
1 cup soy milk 100 calories
2 slices of whole wheat bread 200 calories
1 cup blueberries 70 calories
1/2 cup broccoli 40 calories
1 cup spinach 60 calories
1 tablespoon of olive oil 120 calories
1/3 cup apple sauce 60 calories
1/2 cup peas 60 calories
1/2 banana 50 calories
1 container pureed pear 45 calories

Total Calories: 1645

Read about Andrew and Eleanor and the latest edition to the Han family at The Early Birdies.

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