tag:blogger.com,1999:blog-4473926628506133542024-03-12T18:03:38.887-04:00Special needs disability parenting BLOOMBLOOM covers top-of-mind issues for parents of kids with disabilities by combining firsthand family insights and expert advice from Holland Bloorview Kids Rehabilitation Hospital and around the world. Holland Bloorview is Canada’s largest children’s rehabilitation hospital. Our vision is to create a world of possibility for kids with disability. We
pioneer treatments, technologies, therapies and real-world programs that give children with disabilities the tools to participate fully in life.BLOOM - Parenting Kids With Disabilitieshttp://www.blogger.com/profile/06901482901008135659noreply@blogger.comBlogger1464125tag:blogger.com,1999:blog-447392662850613354.post-32046599031667584762019-08-01T15:17:00.003-04:002019-08-01T15:18:16.413-04:00BLOOM becomes part of Holland Bloorview's new website<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: "verdana" , sans-serif;">By Louise Kinross<br /><br />Holland Bloorview is launching a new website at the end of August, and BLOOM will be a part of it!</span><br />
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<span style="font-family: "verdana" , sans-serif;">Rather than standing alone, BLOOM will be integrated into one site with the hospital and our research institute and foundation.</span><br />
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<span style="font-family: "verdana" , sans-serif;">The new website has been designed with input from children and families. It features gorgeous, large images, as you can see in the screen shot above, is much easier to read and has enhanced accessibility.</span><br />
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<span style="font-family: "verdana" , sans-serif;">Visitors will be able to translate our pages into 100 languages, share our content on social media with the press of a button, and sign up for our hospital and BLOOM e-letters.</span><br />
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<span style="font-family: "verdana" , sans-serif;">As of August 21, you will be redirected from our old site to the new site. </span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span><span style="font-family: "verdana" , sans-serif;">Once live, we'll share more details on how you can give us feedback on our new look.</span><br />
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<span style="font-family: "verdana" , sans-serif;">In the future, you can always find us at www.hollandbloorview.ca/bloom.</span></div>
BLOOM - Parenting Kids With Disabilitieshttp://www.blogger.com/profile/06901482901008135659noreply@blogger.com0tag:blogger.com,1999:blog-447392662850613354.post-6777596686026901332019-07-30T09:56:00.000-04:002019-07-30T10:07:04.878-04:00Click click. Dress your chair with stylish, snap-on accessories<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: "verdana" , sans-serif;">By Louise Kinross<br /><br />It’s a bit of bling for the wheelchair, and security and control for the user. <br /><br />Lucy Jones—named one of the world’s brightest entrepreneurs by Forbes magazine in 2016 for designing clothes for people who use wheelchairs—launches a new line of wheelchair accessories today in New York City.<br /><br />A small US$49 metal clamp with a dock that fits on manual wheelchair tubing is being sold with two leather clutch bags and a cupholder that attach with magnets. It allows you to snap and secure a bag or cupholder to your wheelchair.<br /><br />The smaller bag—available in electric blue, hot pink, tangerine, yellow and black—is perfect for credit cards, keys, a phone and cash. It costs US$108. The slightly larger black bag is made for people who want to carry more makeup, or other stuff, close by. It goes for US$138. Check them out in <a href="https://youtu.be/gDTi1pJPOvA">this video</a>.<br /><br />“In focus groups, people were often telling us that they were sitting on their phone or wallet or keys, because they had nowhere safe to put them,” says Lucy, whose new company is called <a href="https://liveffora.com/">FFORA</a>. “That could cause pressure sores.</span><span style="font-family: "verdana" , sans-serif;">”</span><span style="font-family: "verdana" , sans-serif;"> </span><br />
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<span style="font-family: "verdana" , sans-serif;">Other people carried things openly in their lap. Lucy recalls that one of her friends, who has multiple sclerosis, used to ask her to go into her bag, which was hanging on the back of her chair, to get things. </span><span style="font-family: "verdana" , sans-serif;">“</span><span style="font-family: "verdana" , sans-serif;">I often wondered, ‘How is this safe?’ </span><span style="font-family: "verdana" , sans-serif;">The community wanted fashionable bags, but they often had to jury-rig them, or hack them, so that they fit on their chairs.” </span><br />
<span style="font-family: "verdana" , sans-serif;"><br />Lucy says it was a challenge to make a clamp that was light, sturdy and small, and something people would want to leave on their wheelchair. Early users say the product, which comes in champagne, silver and midnight black, “looks like a piece of jewellery.” <br /> <br /> When attached, the dock swivels at 360 degrees, so users can position it in a way that doesn’t interfere with their movement. “It can go anywhere along the lower wheelchair tubes. We have one guy who places it behind his leg, and others who have it up high beside their knee cap facing forward, and others who position it outward.” <br /><br />Lucy, and her team at FFORA, had to create a product that would work with seven different wheelchair tube sizes. “We’ve created seven different silicone inserts,</span><span style="font-family: "verdana" , sans-serif;">” she says.</span><span style="font-family: "verdana" , sans-serif;"> </span><span style="font-family: "verdana" , sans-serif;">“On our website, the customer will check their wheelchair model and brand,</span><span style="font-family: "verdana" , sans-serif;"> and when the product is shipped, it already fits their chair.” </span><br />
<span style="font-family: "verdana" , sans-serif;"><br />About a dozen wheelchair users aged 22 to over 60 trialled the products for a week at a time, then came back to review what worked and what needed tweaking. “One of their biggest asks was that we make something that was functional and easy-to-use but also cool and stylish, something that their sister or mom might want to use too,” Lucy says. “If you don’t have a disability, and love the bag, you can wear it across your body with a strap. These bags are competing with the rest of the small leather bags market.” <br /><br />Also in the line is a US$25 cup holder that fits in the wheelchair dock—so you can take your coffee with you, and not worry about spills. <br /><br />The new line only ships in the United States, but FFORA hopes to expand to Canada and Europe in the next year. Lucy and her team are working on ideas for products targeted to kids. “Imagine Disney or Marvel. Imagine if we could get a license, so a child could have their super hero character in a cup design?” Plans are in the works to create an attachment that fits on electric wheelchairs and scooters too.<br /><br />In 2016, BLOOM <a href="https://bloom-parentingkidswithdisabilities.blogspot.com/2016/01/in-lucy-jones-hands-disability-and.html">interviewed Lucy</a> about her clothing collection called <i>Seated Design</i> for wheelchair users. She developed it as a graduate student at the Parsons School of Design in New York.<br /><br />Lucy says she named her new company FFORA to recognize all of the wheelchair users she’s worked with. “When we had focus groups, it felt like this was a real honest place where people could make their opinion heard,” she says. “It was a forum. I didn’t like the word ‘forum,’ so I changed it to fora, which is the plural of forum. Then I added the double F, purely for selfish reasons. I’m Welsh, and I wanted to make the word look Welsh. In Wales, there are a lot of double Fs that make the ‘F’ sound. I thought it would be unique. Now we think of the two Fs as symbolizing fashion and function, or form and function, and being future-forward.”<br /></span><br />
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BLOOM - Parenting Kids With Disabilitieshttp://www.blogger.com/profile/06901482901008135659noreply@blogger.com0tag:blogger.com,1999:blog-447392662850613354.post-48287555865447299282019-07-26T12:57:00.000-04:002019-07-27T09:19:39.415-04:00'Foolishness' plays a critical role in rehab <div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: "verdana" , sans-serif;">By Louise Kinross<br /><br />The ‘fool’ in Shakespeare’s plays and the ‘trickster’ in Indigenous stories held an important role in upending the status quo. A <a href="https://link.springer.com/article/10.1007/s10912-019-09570-0">Holland Bloorview paper</a> published this week in the <i>Journal of Medical Humanities</i> notes that the foolishness of therapeutic clowns—their emotional vulnerability and willingness to fail—is at the heart of their work with hospitalized children, producing a </span><span style="font-family: "verdana" , sans-serif;">‘joy without demands.’</span><span style="font-family: "verdana" , sans-serif;"> Clown practices, however, are often seen as ‘secondary to the <i>real</i> work of medical professionals,’ and devalued. <br /> <br /> Lead author Julia Gray, a post-doctoral fellow at Holland Bloorview, argues that all clinicians and researchers could benefit from embracing aspects of foolishness in their own work. BLOOM interviewed Julia about the paper, called <i>Seriously Foolish and Foolishly Serious</i>. It looks at how clowning creates a space of vulnerability, surprise and the unknown in which children feel agency, as well as the freedom to express sadness, despair, pain and delight. This</span><span style="font-family: "verdana" , sans-serif;"> spontaneous, undirected, flexible practice </span><span style="font-family: "verdana" , sans-serif;">isn't usually taken seriously in a medical world grounded in science, expert knowledge and quantifiable outcomes. <br /><br /><b>BLOOM: Why was there a need for this paper? <br /><br />Julia Gray: </b>It came out of things I was observing anecdotally about the clowns’ role at Holland Bloorview, and in other hospitals, and reading in academic literature about how clown practice is framed. I was seeing a strange tension between admiration for the clowns and an attempt to legitimize them by framing them as a medical practice. They had to have certain kinds of medical goals, or be supporting the medical goal of other professionals. <br /> <br /> As an artist and scholar myself, it seemed such an odd way to try to legitimize what they do. The arts do things that may complement medical goals, but they also do other things: they help us be in the world, they help us feel things, they help us see things differently, and they help us see ourselves differently. Those [experiences] are really important in a health setting, but they tend to be overlooked generally, in practice and in research. <br /><br /><b>BLOOM: What kind of knowledge has traditionally been valued in children’s rehab? <br /><br />Julia Gray:</b> Science tends to be valued, and particular kinds of science—objective research. <br /><b><br />BLOOM: So quantitative over qualitative research. You also wrote about “high knowledge.” <br /><br />Julia Gray: </b>Yes. It’s quantifiable, an intellectual prowess that is valued, reasoning. It comes out of the Enlightenment, and the roots of scientific method are revolutionary and incredibly important. But when you value that over other ways of being or knowing, it has the potential to exclude people who may have different abilities and strengths. <br /><br /><b>BLOOM: You wrote about how foolishness is central to the role of the clown. Why is emotional vulnerability, and a willingness to fail, important to hospitalized children? <br /><br />Julia Gray: </b>Our rehab practices are continually encouraging them to be independent, and that independence is where strength is, as opposed to being vulnerable. They’re supported to be a certain kind of ‘strong.’ That has implications for how children with disabilities see themselves. Some of them are never going to fit that mould. <br /> <br /> Rather than pushing children to fit a particular mould that we understand to be success, we need to think more about what ‘that success’ is? At a philosophical level, it asks us to question what it means to be a human being. Is being independent and self-sufficient valued, above all else? Is it holding down a particular kind of job that makes more money? Or is being playful and joyful enough? <br /><br /><b>BLOOM: One of your co-authors, Barbara Gibson, is a physiotherapist, which is a more traditional clinical role in children’s rehab. As authors, you note that typically, play in children’s rehab is not an end in itself. It’s always tied to a therapy goal or achieving a developmental milestone. Why is this problematic? <br /><br />Julia Gray: </b>I think it comes back to what does it mean to be human? Is it not enough to play? Why do we need to use play to control development and decide what is 'normal' or 'abnormal' play? I sometimes think medical culture gets it backwards. These artistic therapies and practices are seen as a way to fix people, rather than as a way to support kids, so they can be in the world as themselves.<br /><br /><b>BLOOM: That approach can also take all of the joy out of life. I remember when every interaction I had with my young son had an agenda—I was trying to get something out of him, rather than enjoying the moment. And if I wasn’t successful, I felt like a failure. <br /><br />Julia Gray: </b>There’s this pressure to always be better, but we don’t question what better is. <br /><br /><b>BLOOM: What if better is happier, and has nothing to do with abilities? <br /><br />Julia Gray:</b> What if better is chilling out in a bath? <br /><br /><b>BLOOM: You note in the paper that hospital clowns are often misunderstood. People think they provide simple laughs or positivity, when what they do is actually very sophisticated. You include an example of an interaction between a nine-year-old patient, Daniel, and Helen Donnelly, a co-author, who is a therapeutic clown at Holland Bloorview known as Dr. Flap. <br /><br />Daniel, who uses a ventilator, accuses Dr. Flap of lying about the death of Jamie Burnett, who was a therapeutic clown at Holland Bloorview. He worked with Dr. Flap until he died of a brain tumour in 2011. Why did you choose that example? <br /><br />Julia Gray:</b> I wanted to show how the child drives the boat, and Helen really follows his lead. Helen doesn’t balk at what he’s putting forward, when he challenges her. It’s really brave for a child to challenge an adult, and accuse her of lying. She doesn’t try to take control by saying ‘No, no, I’m a serious adult. I know what’s best.’ She follows his play, and lets him lead. She makes herself very vulnerable. She recognizes the importance of not always talking and being clever and being in control. <br /><b><br />BLOOM: You write about how fool-like characters historically played an important role in challenging the status quo. You also share examples of how scientists and research students, here and in other rehab facilities, reacted to learning you were researching clowns. They felt uncomfortable and hesitant. In fact, one colleague said she was afraid that if she encountered the clowns, they might make a fool of her. Can you explain? <br /><br />Julia Gray:</b> Our culture really values high intellect, certain kinds of expertise, and being in control, and the clowns do not offer that. They are constantly playing low status. They relish in being ridiculous and weak and failing all over the place. <br /><br />That kind of exposes the ridiculousness of how seriously people take intellectual control. It has a place, and we have discovered all kinds of amazing things. But even in science, you need creativity, and there’s so much ‘not-knowing.’ It’s ironic that people get nervous around the uncertainty and not-knowing that the clowns bring. <br /><br /><b>BLOOM: That’s so interesting, because now I think about it, I remember a couple of times I was having a bad day, and I saw the clowns in the hall, and thought: ‘Oh no, I hope they don’t see me. What if they engage me, and I don’t know what to say? What if I don’t understand the characters they’re playing? What if I can’t say anything, or be cool?’ <br /><br />Julia Gray: </b>People think they need to be funny, and that it’s about wit and intellect. It’s not. It’s about imaginative play, and you don’t have to know anything. You don’t have to know. <br /><br /><b>BLOOM: How does our focus on science and high intelligence and professional expertise potentially impede creativity and more flexible ways of thinking about disability? <br /><br />Julia Gray: </b>When there’s an emphasis on a particular kind of knowledge as being more valued, it delegitimizes another kind of knowledge, which comes from people’s experiences and feelings and emotions and senses. For example, clients are constantly being asked to articulate their goals in rehab, but only in certain ways. We say we’re being client-centred, and doing what the client wants. But we expect them to articulate those goals in a way that fits with a world where independence and productivity are valued. <br /><b><br />BLOOM: There was an interesting quote related to that in your paper. 'Rehabilitation functions in tandem with efforts at home, school, and community to secure children’s futures as productive, contributing, autonomous and ‘normal’ adults.' I’ve always said that in mainstream childhood, parents don’t talk to their children about goals. It’s a clinical concept. <br /><br />Julia Gray:</b> I never sit down with my able-bodied kids and talk about what their goals are for their own bodies. I tell them to go outside and play. When a parent is trying to get a child to do things that will make them more 'productive,' it shapes the whole relationship. This opens up questions about what the purpose of rehab is? When we value independence and expertise over other ways of being, it influences our practice. Could we support kids to be who they are in a variety of ways?<br /><br /><b>BLOOM: There’s a brilliant line in your paper that I want to read. ‘There is little room in the serious scientific aspirations of contemporary rehabilitation practice and research for risking failure through creative experimentation, promoting pleasure, supporting alternative ways of being and doing, particularizing care, and/or thinking about people differently.’ <br /><br />I read that, and I thought: That’s why we don’t do more research on really complex populations. For example, we usually study youth with disabilities who are employable in conventional ways. Why don’t we research youth who will live unconventional futures, and who won't be able to do paid work? What do they do? What kind of a good life is possible for those people? I think we don’t go there because we don’t want to enter into a field where we don’t know the answers. We don’t know how things are going to look. <br /><br />Julia Gray: </b>And it probably won’t show what we consider productivity to be. We’re more comfortable celebrating certain kinds of successes, but what do we mean by success? We’re in a time where we have to account for every dollar spent, and if there’s money going to help kids be successful in particular ways, we have to account for that. If they’re successful in other ways, you can imagine people saying ‘But how is that going to help the economy?’ All of this is situated in our larger culture and its expectations. Those expectations really limit us, because we don’t critique what we even mean by success or improvement. Why do we need to improve? <br /><br /><b>BLOOM: Maybe a goal for a child is acceptance, so they feel good about themselves. Your paper resonated with me because I’ve felt a lot of discomfort with how we promote the academic exclusivity, or high intelligence, of our research work. How does that fit with our vision of inclusion? <br /><br />Julia Gray:</b> We are heavily academically inclined. We are measuring particular kinds of successes and experiences—largely through marks. <br /><br /><b>BLOOM: Yet some of our population, due to intellectual disability, can’t be successful in academics. You suggest that all rehab clinicians and researchers can enhance their practice by incorporating foolishness into it. What might that look like? <br /><br />Julia Gray: </b>My son used to take violin when he was 6, and one day, after about five sessions, he showed up and said ‘I don’t want to be here,’ even though he was the one who'd asked to take lessons. The teacher said ‘Okay, maybe we don’t need to practise bows and techniques. Why did you decide you wanted to take the violin?’ </span><br />
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<span style="font-family: "verdana" , sans-serif;">He said he thought it was a cool instrument. She said ‘Let’s take a look at the instrument,’ and that’s what they did for half an hour. They talked about the different parts of it, without playing it. If the teacher had had in her brain ‘I must teach technique and I have these goals,’ she would have pushed him away and he would have been even more annoyed. She knew that her relationship with him, and with music, was more important than holding the bow in the correct way. <br /><b><br />BLOOM: One of the messages in your conclusion is that relationships, and activities that spark happiness, in the moment, with children, are as important as clinical outcomes.<br /><br />Julia Gray: </b>Therapy and physical function, and relief from pain, are incredibly important, and have a very important place. But it's also important to think about why we focus so much on improving in rehab? What are we improving? What is our understanding of betterment? Why do clinical outcomes take priority over a child being in a good way with a person in a space—being in a good relationship? Isn’t that, really, what life is all about? <br /><br /><b>BLOOM: What do you hope professionals take from your paper? <br /><br />Julia Gray:</b> I appreciate they’re in a tough position. We’re in a culture where the pressure is to be ‘better.’ That, according to the funding, is the point. They need to be able to show particular outcomes to justify their practice. Many feel very torn about existing within that structure that pushes them to practise in particular ways—ways that may sometimes be harmful. I don’t know what the answer is. I think we need to rethink what we value. What is valued as ‘better?’ What is valued as ‘improvement?’ <br /><br /><b>BLOOM: What message do you hope parents take? <br /><br />Julia Gray: </b>To recognize that therapy, or betterment, or improvement goals or practices, can be totally overwhelming, and overtake your relationship with your child. Maybe there are ways to resist that by just being. And playing. Being silly, and sitting in the sun. Try to prioritize that, and remember that the parent and child being together is enough—as opposed to the parent being the fixer. </span></div>
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BLOOM - Parenting Kids With Disabilitieshttp://www.blogger.com/profile/06901482901008135659noreply@blogger.com1tag:blogger.com,1999:blog-447392662850613354.post-31433992292455597502019-07-19T11:23:00.000-04:002019-07-19T11:37:05.637-04:00Diverse dolls help children 'appreciate themselves as they are'<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: "verdana" , sans-serif;">By Louise Kinross</span><br />
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<span style="font-family: "verdana" , sans-serif;">Winnie Mak is part of a multicultural family. She is Chinese, from Hong Kong, and her husband Rafael is French and Greek. They live in London, U.K., and after their son Alex, now 4, was born, Winnie learned that the vast majority of dolls were white, girls and able-bodied. <br /><br />She wanted to create soft dolls targeted to boys and girls that “reflect the diversity of the world.” So she launched <a href="https://onedearworld.com/">One Dear World</a> with four dolls that represent children from Ghana, Mumbai, Norway and Hong Kong. This fall she's adding six new dolls that have disabilities (including the boy doll with Down syndrome, above. Scroll down to see the five others).<br /><br />“Each doll has an identity and comes with a story, and can be used as a tool to help children build a positive self-image and a respect for each other’s differences,” she says. </span><br />
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<span style="font-family: "verdana" , sans-serif;"><b>BLOOM: Why did you decide to create dolls with disabilities? <br /><br />Winnie Mak: </b>When I first launched the company I wanted to include all kinds of diversity. But I decided to start with cultural diversity, because I was just one person starting the company at the dining room table. <br /><br />Last summer my story got featured on BBC, and I got some messages from parents asking for dolls with disabilities. For example, one mother who had a daughter with Down syndrome wanted me to consider creating dolls with Down syndrome. I contacted different charities in London and messaged with parents of children with disabilities through Instagram, and I found them very welcoming to my idea, and willing to have a chat with me. That gave me the confidence to think this was something I should try. </span><br />
<span style="font-family: "verdana" , sans-serif;"><b><br />BLOOM: How did you choose which conditions to include? <br /><br />Winnie Mak:</b> I wanted to show a range of visible and non-visible disabilities. My nephew had been diagnosed with autism, so I had become more knowledgeable about that. There’s a doll with autism, a doll with an amputation, a doll with Down syndrome, a wheelchair user, and dolls with visual and hearing impairment. <br /><br />I was speaking with a consultant in London who gives advice to big corporations on disability policy, and she mentioned that mental [illness] has been classified as a disability. One of my dolls has anxiety. I think young children should learn about mental health and wellbeing.</span><br />
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<span style="font-family: "verdana" , sans-serif;"><b>BLOOM: How are the disabilities conveyed? <br /><br />Winnie Mak: </b>The doll with hearing loss has a pink hearing aid. The doll with vision impairment is wearing glasses and has a guiding cane. When I was designing the doll with Down syndrome, I met with some family support groups to get feedback on the facial features. I wanted things to be subtle, not exaggerated. </span><br />
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<span style="font-family: "verdana" , sans-serif;">Each doll comes with a booklet which gives their name, place of birth and a short story about themselves. For example, one doll is Irish and she’s experiencing anxiety after she learns that her parents are getting separated. She finds she likes hiking and drawing, and these two activities give her some peace of mind and help with her anxiety. <br /><br />Each doll has a hero. The role model of the doll whose right leg was amputated after a car accident is Sudha Chandran, an amputee and also a famous Indian dancer. The booklet also has a section called ‘Do you know?’ about the doll’s disability. </span><br />
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<span style="font-family: "verdana" , sans-serif;"><b>BLOOM: I know Barbie just introduced a black doll who uses a wheelchair, and American Girl has dolls that come with accessories like hearing aids. What makes yours different? <br /><br />Winnie Mak: </b>What makes my brand unique is that each doll comes with a story, which is a guide for parents or educators to start the conversation about differences. My plan is to develop more stories and content around the doll characters. For example, if I exceed my crowdfunding target, I will write a story that includes all of the dolls, or create a card game that can be played with the dolls. The mission of my company is to nurture future global citizens. </span><br />
<span style="font-family: "verdana" , sans-serif;"><b><br />BLOOM: What message do you hope the dolls give children? <br /><br />Winnie Mak: </b>For children with disabilities, my message is that there are people like them, and they’re not alone. We want all children to grow up having a secure self-image, and appreciating themselves as they are.</span><br />
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<span style="font-family: "verdana" , sans-serif;">I want non-disabled children to learn about disabilities and embrace differences. My son is of the age where he’s very interested in dinosaurs. There are so many dinosaurs and they have difficult to pronounce names, and lots of different features, like running speed. My message is that if young children can learn about all of these complicated dinosaurs, and remember all of the names of the Pokemon monsters, there’s no reason they can’t learn about different disabilities. </span><br />
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<span style="font-family: "verdana" , sans-serif;"><b>BLOOM: How do you make the dolls? <br /><br />Winnie Mak: </b>I’m not a doll maker myself. I started with some sketches in a notebook and then did a digital drawing on the computer. I’m originally from Hong Kong and used to travel a lot to China when I worked for an electronics manufacturing company. I found a doll-making factory there that is helping me develop the six new dolls. </span><br />
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<span style="font-family: "verdana" , sans-serif;"><b>BLOOM: What ages are they targeted to? <br /><br />Winnie Mak:</b> Because they are cuddly and soft, they are targeted to children from one to two years old, up to five to six years old. </span><br />
<span style="font-family: "verdana" , sans-serif;"><b><br />BLOOM: What do the dolls cost? <br /><br />Winnie Mak:</b> The new dolls will cost between $40 and $50, because they are more detailed than my first dolls, and more resources were put into developing the booklets that come with them. For each doll sold, 10 per cent of sales will go back to a charity that supports that particular disability. For example, the dolls with visual impairment will support <a href="https://www.sightsavers.org/">Sightsavers</a>. They work in some of the poorest parts of the world to prevent avoidable blindness and to promote disability rights. </span><br />
<i><span style="font-family: "verdana" , sans-serif;"><br />Winnie’s new dolls will be launched in early September through a crowdfunding campaign. You can sign up for more information <a href="http://bit.ly/dollsforall-prelaunch">here</a>. They will be shipped internationally. The wheelchair below comes separately, and can be used for play with any of the dolls.<br /></span></i><br />
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BLOOM - Parenting Kids With Disabilitieshttp://www.blogger.com/profile/06901482901008135659noreply@blogger.com0tag:blogger.com,1999:blog-447392662850613354.post-62357636832025424482019-07-11T15:15:00.001-04:002019-07-11T16:15:53.954-04:00Spiral Garden means freedom, creativity and time together<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: "verdana" , sans-serif;">By Louise Kinross<br /><br />This summer is bittersweet for brothers Osmond (above right) and Edmond Shen (left). <br /><br />That’s because it’s the last one they’ll spend together in Spiral Garden. <br /><br />Osmond, who is 21, has been attending the artist-run camp in the ravine behind Holland Bloorview since he was five, and is graduating out of the program. Edmond, now nine, has been coming for four years. <br /><br />The camp brings children with and without disabilities together under a canopy of trees to tend an accessible garden, sculpt clay, work wood, make puppets and tell stories. <br /><br />Each brother has a different passion. For Edmond, it’s gardening. “You get to water plants and help,” he says. <br /><br />For Osmond, it’s woodworking. Osmond envisions finished products—like a stand for his Nintendo DS, a wheelchair cup holder or a robot—and directs Edmond in how to execute them. “A lot of youth come for an hour and go, but Osmond is determined to stay until his project is finished,” says Brendan Byrne, one of the counsellors. <br /><br />On the day we met, Osmond had Edmond sawing a thick branch into small circular pieces to form the four wheels he wanted on his robot. “He’s the boss,” Edmond says. <br /><br />“What I like about this camp is that it teaches ‘normal’ kids about disabilities,” Osmond says. He and Edmond also appreciate the open schedule. “You can go anywhere you want, and do anything you like,” Edmond says. “At my other camp, we had a schedule, and we had to do this, then this, then this.” <br /><br />Edmond says one of his favourite parts of camp is going to the hospital cafeteria for lunch. “Osmond takes me for lunch, and I get to have a hot lunch.” <br /><br />Osmond encourages other families to send their child with a disability with his or her brothers and sisters. “It’s a great opportunity for siblings,” he says. <br /><br />The camp, which welcomes over 200 children and youth each summer, is donor-funded through <a href="http://foundation.hollandbloorview.ca/welcome">our foundation</a>. </span><br />
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<span style="font-family: "verdana" , sans-serif;"><i>The photo below is of Osmond and Edmond enjoying their first summer at Spiral Garden.<br /></i></span><br />
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BLOOM - Parenting Kids With Disabilitieshttp://www.blogger.com/profile/06901482901008135659noreply@blogger.com0tag:blogger.com,1999:blog-447392662850613354.post-85565380601788058312019-07-09T10:43:00.000-04:002019-07-09T11:26:45.147-04:00'I open up a world for kids to be able to participate in'<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: "verdana" , sans-serif;">By Louise Kinross<br /><br />I have a strong image of Laurel Robinson (standing above), a speech-language pathologist at Holland Bloorview. Laurel is always racing up the path to the hospital, or back down to the parking lot, pulling a cart on wheels behind her. The cart is packed with alphabet boards, picture displays, photos and technology she uses to create a way for children who don’t speak to communicate. Laurel, who is usually on the road driving to client's homes or schools, is always warm and bubbly. What I didn’t know about her is that she was born in Montreal, grew up in Saskatchewan, and studied in Alberta. She's also a sign-language interpreter and was a competitive synchronized skater growing up. We talked about her work at Holland Bloorview. <br /><br /><b>BLOOM: How did you get into this field? <br /><br />Laurel Robinson: </b>I started in pre-medicine. I knew I wanted to work with children. Then I watched a Monday night movie with my mom about a child who was non-verbal and used facilitated communication. It was a child who had been abused, and was in court. I didn’t know what alternative and augmentative communication (AAC) was, but I knew I wanted to do it. I did an honours in linguistics, and a major in psychology, to get into the speech and language pathology program in Alberta. <br /><br />Before I began university I used to skate, but then I had surgery on my knee, so I had to stop. I decided to take some sign language courses instead, and I met the Deaf instructor, who worked at the University of Regina. I wanted to learn more, and we began meeting for lunch. I got immersed in the culture, because she introduced me to Regina’s Deaf community. While I was waiting to get into my master’s program to be a speech and language pathologist, I did the two-year American Sign Language program. The friends I’ve made through the Deaf community are my long-time friends. <br /><b><br />BLOOM: My son primarily uses sign to communicate. It was our developmental pediatrician at Holland Bloorview who first suggested it. It’s always bothered me that sign-language instructors aren't part of the children's rehab model.<br /><br />Laurel Robinson</b>: It’s the medical model we all live in. Several years ago, I inquired here about whether we could bring on a teacher of American Sign Language, when the daycare at the Bob Rumball Centre for the Deaf was closing. I felt it was a piece that was lacking for our clients, especially in the school here. I wanted to connect and make courses for adults and parents who had children with disabilities who signed.<br /> <br /> One of the biggest myths in our own profession is that technology is the answer. <br /><b><br />BLOOM: Yes! Our culture worships technology. <br /><br />Laurel Robinson:</b> It’s not always the most efficient way for someone to communicate. For some kids, it’s a lot of work and effort. My role is to support communication, it isn't to give a device. It might include making a communication book, or assisting the family so they can learn more sign language. Some kids who are visual learners are like a sponge to sign language. <br /><br /><b>BLOOM: What is a typical day like? <br /><br />Laurel Robinson: </b>They’re definitely not the same. Our program goes out into the community. We consult and collaborate in the classroom with school teams, and we go into families’ homes to work with family and support staff. I’m on the road a lot. Communication happens everywhere, and our hope is to create a communication system the child can take anywhere and everywhere, to communicate with everyone. <br /> <br /> Everyone is unique, and it’s not diagnosis-specific. We look at a child’s goals—what they need to communicate about, and participate in—and their physical abilities. The system comes second. The system needs to fit the child’s needs. <br /> <br /> For some kids who have difficulty accessing technology, communication books and displays make sense. Sometimes we train communication partners in how to ask questions in a specific way, and to look for specific signals in a response from the child—such as a vocalization, smile or eye movement. <br /><br />Some devices have face-to-face vocabulary and an integrated computer system so the child can access the Internet and social media. The iPad is an example. The iPad is great, because it’s cheap and all the kids use it, so it’s socially acceptable. But it doesn’t work for most of our complex kids. Not everyone can touch a screen with their fingertip.<br /><br /><b>BLOOM: What are the joys of your job? <br /><br />Laurel Robinson:</b> I don’t consider it a job. It’s something I’ve always wanted to do, and which I’m extremely passionate about. It’s very rewarding to see a child communicate for the first time. <br /> <br /> I’ll never forget the first young girl I prescribed a device for. She was non-verbal. I was training her parents on how to use the device, and she was pushing buttons on it randomly, to figure things out. Then she looked at me and put her hand up. “Do you have something to say?” I asked. She nodded her head and pushed the button with the heart on it, which said ‘I love you.’ Then she gestured to her mom and her dad. Those were her first words to her parents. <br /><br />I open up a world for kids to be able to participate in actively. <br /><br /><b>BLOOM: What are the challenges? <br /><br />Laurel Robinson:</b> I think the funding and resources are always a challenge. <br /><br />Sometimes the challenge is someone who has very low expectations for a child. When I’m designing something, I say more is better than less. The more they have access to, the more the child can show us what they’re capable of. <br /><br />I go into great classrooms all the time. But I also go into classrooms where the expectations are extremely low. That doesn’t fly with me. I can’t change that, but I can work in the home environment. I’m someone who can’t say no, because I care. Every child has the ability to communicate, and every child is communicating, and has the ability to do more. A child not learning isn’t the child’s fault. It’s our fault for not teaching them properly, and not having the right tools in place. <br /><b><br />BLOOM: What kind of emotions come with the job? <br /><br />Laurel Robinson: </b>It can be very demanding, very stressful. We have heavy caseloads. The solutions sometimes don’t just appear. There can be a lot of trial and error, and many of the kids we work with are very complex. Every child, to a certain degree, is unique. <br /><b><br />BLOOM: So you’re kind of starting from scratch every time? <br /><br />Laurel Robinson:</b> Yes. There isn’t a one-size-fits-all AAC system. It takes a very long time to do a complete assessment, and to find something that can work best for a child. <br /><br />We work as a team here with occupational therapists, assistive technology consultants and communicative disorders assistants. It’s very interdisciplinary, and takes a full team approach to ensure a system is suitable. Our external partners include teachers, educational assistants and school board therapists. We might have 15 people around a table discussing what our goals for a child will be. <br /><br /><b>BLOOM: Is there anything you do to manage stress? <br /><br />Laurel Robinson: </b>I like to travel, and a couple of years ago I went back to skating. I had competed nationally at synchronized skating when I was younger. <br /><b><br />BLOOM: What exactly is synchronized skating? <br /><br />Laurel Robinson: </b>It’s like synchronized swimming on ice. I love the team aspect of it, and it allows me to clear everything from my mind. I also do spin classes on Mondays and I love theatre. <br /><br /><b>BLOOM: If you could change one thing about how we approach AAC, what would it be? <br /><br />Laurel Robinson: </b>I think it’s understanding that technology is <i>not</i> the answer. That’s my biggest thing. Everybody feels technology is the answer, and unless technology is in place, a child can’t be a full participant. That’s a myth. <br /><br />I’d also like to see mental health initiatives become a part of what we do, so we give children access to that kind of vocabulary and information. <br /><br /><b>BLOOM: If you could change one thing in children’s rehab, what would it be? <br /><br />Laurel Robinson: </b>Today, everything comes down to funding. We’re trying to change our service delivery model, to accommodate people on wait lists. But there’s a lot of behind-the-scenes work that goes on in creating communication materials. It takes a lot of time and thought and organization. It doesn’t easily fit into a numbers model. <br /> <br /> When I started here, I felt I was able to do a better job, because I had more time to devote to each client. Now it’s ‘go, go, go,’ with an influx of referrals. It makes you have to work in a different way. As a human, and a health-care professional, it’s hard to not try to go above and beyond. That means doing things outside my 9 to 5 work. I still do those extras, because I care. <br /><b><br />BLOOM: You and Elizabeth Baird did a No Boundaries project last year. Can you tell us about it? <br /><br />Laurel Robinson: </b>Working in Toronto, we’re in a very multicultural environment, and lots of our families have a second language in the home. But there are no multi-language communication materials. We decided to create theme displays and communication books in two languages—in English and in the language spoken by families. <br /><br />We identified the five most commonly used languages by families at Holland Bloorview, and added French. So for grandparents or parents who don’t have a strong English connection, they have an opportunity to interact with the display in their own language. </span><br />
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BLOOM - Parenting Kids With Disabilitieshttp://www.blogger.com/profile/06901482901008135659noreply@blogger.com0tag:blogger.com,1999:blog-447392662850613354.post-51470106228509437282019-07-03T15:43:00.001-04:002019-07-08T09:39:53.591-04:00When a child has 24-7 needs, mothers bear the costs<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: "verdana" , sans-serif;"><i>An early photo of two of Sheila Jennings' children</i><br /><br />By Louise Kinross<br /><br />As the mom of a son who had severe asthma and a life-threatening immune condition, Sheila Jennings learned firsthand that it was impossible to work outside the home and tend to her child with complex health needs. <br /><br />“My interest in the support rights of mothers of severely disabled children began after I got divorced and set up my law practice while caring for three children<span style="line-height: 115%;">,”
she says. “My son missed about 40 days of school in Grade 7, and a similar amount in Grade 8. He had severe infections, was followed by four clinics, and was frequently in the Emergency Room. </span>One time I was just about to go into the courtroom, and I had a call that something was wrong at school. I called my son’s father, who is an emergency room physician, to ask if he could find out what was going on, and he said: ‘I have someone here with a screwdriver in their head.’ Even when I had a spouse, he didn’t necessarily have the ability to drop everything. I started to get sick myself in 2005, and when I became very ill, I had no choice but to close my practice.’<span style="font-size: 11pt; line-height: 115%;">”</span><br /> <br /> Sheila recently defended her PhD thesis called <i>The Right To Support: Severely Disabled Children And Their Mothers</i> at <a href="https://www.osgoode.yorku.ca/">Osgoode Hall Law School</a>. “Within complex care, visible and hidden costs have been offloaded onto caregiving mothers by governments,” she writes in the study's abstract. We spoke about her research, and why she believes that the extraordinary demands currently placed on Canadian mothers of children with complex needs might constitute ‘cruel and unusual treatment or punishment’ under <a href="https://www.justice.gc.ca/eng/csj-sjc/rfc-dlc/ccrf-ccdl/check/art12.html">section 12</a> of the Canadian Charter of Rights and Freedoms.<br /><br /><b>BLOOM: What was the purpose of your research?<br /><br />Sheila Jennings:</b> I wanted an answer to the question: ‘What are the legal rights to support for mothers who have severely disabled children, and what should they be?’ I thought it would be a very simple question. But it was anything but. <br /><br />My project looked at literature, as well as 184 cases, which were mostly Canadian. These were cases where caregiving mothers brought law suits or defended against the actions of others. They took on the Canada Revenue Agency or social benefits, or said they needed more spousal support due to their child’s complex needs. I used cases from every jurisdiction and from <a href="https://www.canlii.org/en/">an online database</a>, so mothers can easily access them in support of their own complaints.<br /><b><br />BLOOM: What did you find?<br /><br />Sheila Jennings:</b> It was fairly uniform that if the moms were single and unable to work, they were falling into poverty and struggling, and they were often opposed in cases they brought. There were sympathetic judges, but caregiving mothers’ support needs slid between categories in law, and often couldn’t be helped in court. There was the occasional win, which might take months or years. Litigating mothers became embattled while also providing care. Lawsuits are exhausting and stressful. And each case was usually just one win—there were hardly any systemic wins, where the court said from now on every mother who needs this support will get this amount.<br /><br />One of the problems is that child support is considered for the average child. You can ask for add-ons, but the cost of respite care and basic nursing care must typically be fought for.<br /><br /><b>BLOOM: Can you describe one of the cases?<br /><br />Sheila Jennings: </b>One public law case was brought by a woman who was divorced and had a six-figure income. She had three children. She came to the Social Benefits Tribunal in Ontario to ask for funding through <a href="http://www.children.gov.on.ca/htdocs/English/specialneeds/disabilities.aspx">Assistance for Children with Severe Disabilities</a> (ACSD). ACSD had said no, your income is over the funding cap of $60,000, so you can’t have the amount you say you need. Yet 50 per cent of her income was going to disability-related supports. </span><br />
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<span style="font-family: "verdana" , sans-serif;">She’s a good example of someone who had a full-time job and a big income, but it still wasn’t enough to make it manageable. The tribunal agreed that she'd made the case for the additional money, but it was on a one-off basis. Three years later, she was back in front of the tribunal when her funding application, over what was, in fact, a discretionary cap, was again refused.<br /><br />I have so much admiration for these women. They’re living extraordinarily difficult situations with their children, and they’re rolling up their sleeves and taking on the government, or the other parent who doesn’t want to pay. The other parent says it’s the government’s job to pay, and the government says it’s the other parent’s job.<br /><br />The system for disability supports across Canada is very fractured. It’s not a uniform system, nor can it be easily accessed. The ministries frequently shift people around and change programming. There's rarely an expert in charge with a great deal of knowledge on the file. It’s very hard to get systemic change or sustained change. Much of the work caregiving mothers do is invisible. People can be sympathetic, but they don’t realize how much work is involved and what the implications are. This is a different form of motherhood, and it needs to be supported as such.<br /><b><br />BLOOM: I remember when my second child was born without disabilities, being absolutely shocked at how easy her care was. <br /><br />Sheila Jennings: </b>Yes.<b> </b>Reflecting back on when my third child, who is athletic and healthy, was born, it highlighted for me that the mothers I was studying were different. The support needed for a child who is playing soccer, has tons of friends, doesn’t get sick often and has no physical issues that land them in hospital, is not comparable.<br /><br />I think professionals who are going to be working with caregiving mothers should be going into the home for two to three days, to see what’s involved. In my project I decided not to call the mothers 'complex-care moms.' I decided to use a feminist lens and use the term 'maternally complex care.' It’s a different form of motherhood. <br /><br />Too often, people see a regular mom, and they see the complexity as medical- and hospital- and doctor-centred. That is treatment. <br /><br />It's the mother who is providing the complex care. </span><br />
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<span style="font-family: "verdana" , sans-serif;">Maternal complexity, rather than medical complexity, gives status recognition to the woman who's doing the care, and Canadian research shows it’s 97 per cent women. Many have given up jobs to care for a child with additional needs. It's an important role in society that carries a price, and it doesn't come with workers' compensation, pay or a pension.</span><br />
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<span style="font-family: "verdana" , sans-serif;">I'm interested in how these women are seen and treated in our culture. They get sympathy and sometimes pity. Or even admiration. But care of this kind is not recognized as the work it is. I’ve said before, going to court as a lawyer on a difficult file was easier, any day, than dealing with the objective and subjective maternal complex-care issues that would arise with my son. </span><br />
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<span style="font-family: "verdana" , sans-serif;">Caregiving mothers may be traumatized while providing care, and at the same time you’re also running the house and doing everything else women are socially assigned to do.</span><br />
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<span style="font-family: "verdana" , sans-serif;">My research also showed that it's hard for children with complex-care needs to see their mother's exhaustion from the heavy lifting, so to speak. It's an issue for children too.<br /><br /><b>BLOOM: Did you come up with any recommendations for change?<br /><br />Sheila Jennings:</b> One recommendation I considered is the treatment of caregiving mothers in light of <a href="https://www.justice.gc.ca/eng/csj-sjc/rfc-dlc/ccrf-ccdl/check/art12.html">section 12</a> of the Charter, which provides that </span><span style="font-family: "verdana" , sans-serif;">‘</span><span style="font-family: "verdana" , sans-serif;">Everyone has the right not to be subjected to cruel and unusual treatment or punishment.</span><span style="font-family: "verdana" , sans-serif;">’</span><span style="font-family: "verdana" , sans-serif;"> </span><br />
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<span style="font-family: "verdana" , sans-serif;">I made preliminary arguments that to have mothers alone held responsible for this care, in the manner it’s currently provided, meets a legal test to show section 12 is violated. </span><br />
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<span style="font-family: "verdana" , sans-serif;">Mothers’ health is being negatively affected, and not just a little bit. There’s even a study out of Australia about how mothers of complex children have much higher levels of mortality.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /><b>BLOOM: There was also a <a href="https://bloom-parentingkidswithdisabilities.blogspot.com/2017/01/study-links-high-needs-children-to.html">population-based study</a> done by Dr. Eyal Cohen at SickKids that showed an increased risk of early death in mothers of children born with anomalies like heart disease or Down syndrome.<br /><br />Sheila Jennings: </b>Right. So we know this correlation is an issue. </span><br />
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<span style="font-family: "verdana" , sans-serif;"><b>BLOOM: What was the typical outcome of the legal cases you analyzed?</b></span><br />
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<span style="font-family: "verdana" , sans-serif;"><b style="font-family: verdana, sans-serif;">Sheila Jennings: </b><span style="font-family: "verdana" , sans-serif;">Overall, you can see that the mothers are embattled. For example, there was a 2004 mother with a child with progeria, which causes early and rapid onset of aging. She wanted an increase in night nursing hours, and she wanted the government to subsidize, or pay for, private nurses she had to hire when the CCAC nurses didn’t show up. She also didn’t want CCAC to send her personal support workers who didn’t understand her child’s condition.</span><br /><br /><b style="font-family: verdana, sans-serif;">BLOOM: I looked at </b><a href="https://www.canlii.org/en/on/onhsarb/doc/2004/2004canlii69793/2004canlii69793.html?resultIndex=1" style="font-family: verdana, sans-serif; font-weight: bold;">the case</a><b style="font-family: verdana, sans-serif;"> you sent, and she also wanted registered practical nurses who did overnight shifts to be paid at the registered nurse rate to better retain them. And she wanted a back-up plan with the hospital, so that CCAC-booked shifts wouldn’t be cancelled.</b><br /><br /><b style="font-family: verdana, sans-serif;">Sheila Jennings:</b><span style="font-family: "verdana" , sans-serif;"> Yes. Unfortunately, she had no legal leg to stand on. The CCAC client was her child, not her. I address this issue as one of relational rights in my project. She lost her claim. It’s 15 years later, and these home-care failures haven’t gone away. We read about the same problems from parents like </span><a href="https://bloom-parentingkidswithdisabilities.blogspot.com/2015/11/why-home-nursing-is-not-respite-for-one.html" style="font-family: verdana, sans-serif;">Marcy White</a><span style="font-family: "verdana" , sans-serif;"> and Samadhi Mora-Severino. We have another generation dealing with the exact same thing.</span><br /><br /><b><span style="font-family: "verdana" , sans-serif;">BLOOM: How could section 12 be used to create change?</span><br /><span style="font-family: "verdana" , sans-serif;"><br />Sheila Jennings:</span></b><span style="font-family: "verdana" , sans-serif;"> Lawyers and mothers doing this kind of care need to get together to list the harms they’ve experienced, and to consider what kind of legal action is possible.<br /><br />For example, it’s not okay to be on call 24 hours a day, nor to have consistently interrupted sleep for years. This is way outside the gamut of modern day labour standards. A mother interviewed recently by a Montreal newspaper said ‘</span><span style="font-family: "verdana" , sans-serif;">What kind of world do we live in, where I’m supposed to be up, day and night, providing heavy physical care?</span></span><span style="font-family: "verdana" , sans-serif;">’</span><span style="font-family: "verdana" , sans-serif;"> There isn't a union or workers' compensation to protect these women when they're injured or become ill. Caregiving mothers bear the risks. That's monstrous, and as a society we can do better.</span><br />
<span style="font-family: "verdana" , sans-serif;"><b><br />BLOOM: You mentioned that you looked at how our culture views mothers of children with disabilities.<br /><br />Sheila Jennings: </b>Yes, I did, and it's very interesting. The special-needs mother is romanticized, and put on a pedestal, and is portrayed as having a high cultural value. You think of Princess Diana in Pakistan holding a dying child, or Princess Kate landing on the runway in Alberta, and hugging a child who had obviously been in cancer treatment. <br /><br />But that runs contrary to the way that caregiving mothers, particularly those who provide maternally complex care, are treated at a provincial level. The reality is that they’re often isolated and alone. Donna Thomson’s book <a href="https://www.amazon.ca/Four-Walls-My-Freedom/dp/1770894799/ref=sr_1_1?keywords=the+four+walls+of+my+freedom&qid=1562086537&s=gateway&sr=8-1">The Four Walls of My Freedom</a> alluded to that. There is exclusion, not only of severely disabled children, but of their mothers too.<br /><br /><b>BLOOM: What are your next steps?<br /><br />Sheila Jennings:</b> I hope to teach again this year. I taught last year at the Ontario Tech University, and I was able to bring these issues up in my family law course and also, to a degree, in my human rights course. Students were very interested. I'm also in the midst of writing two papers and preparing a proposal for a book with an academic press.<br /><i><br />In addition to her years practising family and child welfare law, and doing her PhD, Sheila Jennings did an MA in critical disability studies. You can follow her on Twitter @SheilaKJennings.</i><br /> </span></div>
BLOOM - Parenting Kids With Disabilitieshttp://www.blogger.com/profile/06901482901008135659noreply@blogger.com4tag:blogger.com,1999:blog-447392662850613354.post-54165717343839712682019-06-26T15:55:00.000-04:002019-06-26T15:55:26.502-04:00After trauma, parents need space to 'fall apart emotionally'<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: "verdana" , sans-serif;">By Louise Kinross<br /><br />Say the word ‘trauma’ among parents of kids with complex medical problems and disabilities, and the floodgates open. Maybe their child is medically fragile, and they run a mini-ICU at home, constantly ruminating over how to prevent the next crisis. Maybe their child is losing skills over time. Maybe they’re tired of fighting—at school, with doctors—for what their child needs. Maybe as their peers become empty nesters, supports for their adult child vanish, and their caregiving role ramps up.<br /><br />In his new book <a href="https://www.amazon.com/Trauma-Struggle-Open-Up-Avoidance-ebook/dp/B0784V8WJB/ref=sr_1_1?crid=39XASOPVJ8Q2H&keywords=trauma+and+the+struggle+to+open+up+robert+t.+muller&qid=1561578319&s=gateway&sprefix=trauma+and+the+struggle%2Caps%2C147&sr=8-1">Trauma and the Struggle to Open Up,</a> Dr. Robert T. Muller brings together his own experiences working with people struggling with painful histories, the research on treatments, and a history of how culture influences whether we support, or silence, trauma survivors. “In trauma, ideas about the world and how things ought to work—the illusions we operate under daily, to feel safe and secure—no longer fit our lived experiences,” writes Dr. Muller, who is a clinical psychologist in Toronto and a professor in the faculty of health at York University. <br /><br />We spoke about how our parents may experience trauma, answered some questions from readers, and looked at how to find help. <br /><b><br />BLOOM: What is trauma and how does it impact how we function? <br /><br />Dr. Robert T. Muller: </b>Trauma is a big word that’s used to mean different things. Of course when we use the definition post-traumatic stress disorder (PTSD), we mean someone who’s had a real experience in the real world that’s left them really struggling in their functioning. These are truly overwhelming experiences. They overwhelm a person’s ability to cope. <br /><br />It could be physical or sexual abuse in a family, or service people who have been in combat situations, or refugees in war-torn areas. We also see this in people who have experienced huge medical or developmental losses. Perhaps a child has died. They’re left with difficult memories, with flashbacks. These experiences are real and overwhelming. <br /><br />What’s common is the person is left with great difficulty coping. Trauma also affects the body. People’s cortisol levels get affected, their immune system is affected. We see people who have medical symptoms as a result of these traumatic experiences. They may have ongoing headaches or pain-related problems or be more susceptible to illness. They may have irritable bowel syndrome. <br /><br /><b>BLOOM: You note in your book that a common response to trauma is avoidance. <br /><br />Dr. Robert T. Muller: </b>There are people who have known traumas—there’s independent evidence that they’ve had these experiences—yet they avoid thinking about it, they don’t want to talk about it. It’s important to bear in mind that we don’t want to be judgmental of anyone who uses avoidance strategies. They do it for a good reason, because these experiences are truly overwhelming. <br /><br /><b>BLOOM: It’s a natural protective reaction. <br /><br />Dr. Robert T. Muller: </b>It’s what we need to do in order to manage, to try to protect ourselves from overwhelming memories. But after a while it catches up with you. There’s only so long you can avoid these things. <br /><b><br />BLOOM: What kind of trauma symptoms might we see in parents of children with complex medical problems or disabilities? <br /><br />Dr. Robert T. Muller:</b> People respond to the disabilities of their children in very different ways. There are a whole range of responses. For some people, raising a child with disabilities can be a highly enriching, growthful and incredibly important experience in their lives. For others, it can be highly stressful and a lot of loss is associated with it. And there’s everything in between. Sometimes it’s both. It’s really complicated. <br /><br /><b>BLOOM: I’m thinking that there’s a difference between a one-time traumatic event with your child—like learning your child has a disability, but they’re stable health-wise and can learn to adapt—and repeated life-threatening medical emergencies in your child, or dozens of surgeries, and some don’t go as planned, or being slapped, over time, with new life-changing diagnoses that stack up?<br /><br />Dr. Robert T. Muller: </b>It makes a huge difference. With one-time events, the adjustment can be difficult. Perhaps parents are adjusting to a loss of function in a child. But then, once the loss is recognized, and a plan is made as to how to move forward, and the family is supportive, you can move forward and adapt to the situation. You can deal with a certain amount of loss.<br /> <br /> It’s chronic, ongoing loss and deterioration that is so stressful. When there’s chronic deterioration of a child’s functioning, and parents keep hoping, and then that hope ends up turning into more and more loss, that is hugely stressful. <br /><br /><b>BLOOM: For parents facing those repeated traumas, wouldn’t it be even harder to open up? Like how would they even find the mental space to do that? <br /><br />Dr. Robert T. Muller:</b> Parents have to have a space that is their own, where they have licence to fall apart emotionally, and say I’m distressed, I’m scared, and to talk about how they’re feeling. It might be with a therapist or a parent support group. Sometimes people may not even feel comfortable sharing their internal fears with their partner, because they feel they have to put on a brave face. <br /><br />Having a space where you can talk about how you’re feeling, and then, by the end of the hour, put your pieces back together, so you can go out and be supportive of your child, is essential. Of course your child needs to know you’re protecting them as best as you can, and when you’re with your child, you want to be as supportive and positive and hopeful as possible.<br /><br /><b>BLOOM: I have a question from a reader. <br /><i><br />‘I’m very sensitive to seeing or hearing an ambulance. No matter how good a mood I’m in, this encounter sends me straight back to my son being born too early and very sick. I then have a hard time breathing, get a high pulse and I start to cry almost every time. It leaves me drained of energy and becomes a bit awkward sometimes. It is seven years since my son was born, but it still happens. My question: Can I do something to treat this, to better cope? Is it post-traumatic stress disorder? I have told my psychologist about it, but I don’t get any explanation or advice.</i>’<i> </i><br /><br />Dr. Robert T. Muller:</b> The short answer is that PTSD should be investigated, and it sounds like a distinct possibility. Absolutely, there are things we can do when we know people have experienced traumatic events and they continue to get symptoms. </span><br />
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<span style="font-family: "verdana" , sans-serif;">The physiological response this parent has to an ambulance indicates a person is being triggered. There are techniques to help people notice their triggers, to begin to identify them and pay attention to them. If they notice them when they’re happening, they may not be as affected for as long. <br /><br />Then they can start learning grounding strategies: when you notice you’re triggered, you do things to pay attention to the here and now, so you don’t get drawn back into the event. Relaxation and mindfulness strategies can be helpful. Trauma-informed yoga can be helpful. Psycho-education is important. <br /><br /><b>BLOOM: What’s that? <br /><br />Dr. Robert T. Muller:</b> Reading about trauma, and how trauma affects the body. <a href="https://www.amazon.ca/Body-Keeps-Score-Healing-Trauma/dp/0670785938/ref=sr_1_1?keywords=the+body+keeps+the+score&qid=1561558025&s=gateway&sr=8-1">The Body Keeps the Score</a> is a profoundly written and very helpful book. My new book is intended to be helpful for people as a resource to learn about trauma. </span></div>
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<span style="font-family: "verdana" , sans-serif;">Working with a trauma-informed therapist is important. They can teach you how to recognize your triggers, emotional regulation skills, and how to notice, when you’re paying attention to your body, feelings of shame, betrayal and disappointment. These are all feelings that have an effect on the body. <br /><br />In the medical situations we’re talking about, people sometimes feel betrayed by the medical community. Or they may feel profound disappointment and shame about choices they made in the care of their child. Noticing these feelings, and working through them in therapy, is important.<br /><br />Martial arts and trauma-informed yoga can be very helpful for people with a trauma history. They teach us to connect with our bodies. People who have had trauma get disconnected from their own body, and drawn into memories, and they can feel like they’re outside their own body. <br /><br /><b>BLOOM: A few of our parents commented that PTSD is very real for them. But they don’t feel it’s acknowledged. One questioned why they weren’t told in the neonatal intensive care unit that they might struggle with these issues. I thought this tied with a theme in your book about how our culture can make it hard for people to share trauma stories, that there’s a silencing that happens. <br /><br />Dr. Robert T. Muller:</b> I agree with you about the silencing. One of the great limitations of the medical community is that it’s not become trauma-informed. We see this all the time when someone goes to the family doctor with depression symptoms that are secondary to trauma. And we now know that people who have trauma symptoms, very, very often have depression. The family doctor, in a 15-minute visit, who doesn’t know the person well, may think ‘I’ll try them on an [anti-depressant].’ <br /><br />That’s not a trauma-informed approach. If you have a parent struggling with a child who has multiple medical treatments and disappointments along the way, and feels that the medical community has only partially heard them, this parent is not necessarily going to benefit that much from being put on an [anti-depressant]. They don’t have a standard, garden-variety depression. <br /><br />This is someone dealing with tremendous loss, and overwhelming feelings secondary to a traumatic event, and they need to be able to sit down and talk with people. <br /><br /><b>BLOOM: Another theme in your book is about how family members can experience the same event very differently. One of our readers said: <i>‘Our biggest struggle is managing our feelings and worries around traumatic events while supporting the child who has experienced it, and his siblings</i>.’<br /><br />Dr. Robert T. Muller:</b> It is so challenging and difficult for parents to navigate this. In a family where there’s a chronic medical condition, there is the worrying about the child and trying to get the child the support and treatment they need. What happens to the couple’s relationship? Is the couple still able to express love and affection towards one another, or is all of the attention placed on the child with the medical illness? <br /><br />Siblings may feel that no one pays attention to them. I worked with a young man whose brother developed a chronic illness when he was a teen, and it was so hard for him. His father had died, and his mom had to navigate all of the medical care. This client understood what his mom was going through, and loved his mom, and she sounded like a really good mom. Even though a part of him knew that his mother couldn’t, and shouldn’t, have done anything differently in her care of his brother, another part of him felt cheated out of a childhood. In therapy he needed to express his disappointment in his mother. <br /><br /><b>BLOOM: We have a number of programs for siblings, and I think you’ve hit on that conflict siblings can have where intellectually, they understand why their brother or sister has to be the main focus. They get it! But emotionally, they feel like ‘I want my mom!’ <br /><br />Dr. Robert T. Muller:</b> That’s exactly it, and they need a space to express that. <br /><br /><b>BLOOM: Another reader asked whether women and men experience trauma differently? <br /><br />Dr. Robert T. Muller:</b> I think women have done a much better job of making it clear that this is a real thing that needs to be taken seriously. We’re still far away from taking it as seriously as we need to. There aren’t enough support groups for men. There aren’t enough therapists, for example, who focus on treating sexual abuse in men, even though one in six men have a sexual abuse history. Not seeking help doesn’t mean the problem goes away. In men, there’s often a sense that I’m going to tough it out, I’m going to be a guy. <br /><br /><b>BLOOM: So men may feel pressure not to talk about their feelings.</b><br /><b><br />Dr. Robert T. Muller:</b> It’s better than when I was a kid, but many dads I’ve worked with still feel the need to hold it all together and have difficulty being honest about their vulnerable feelings. We’re moving in the right direction, and giving young men more options to express vulnerability. <br /><br /><b>BLOOM: One of our parents talked about the isolation she feels because her parent-child experience is out of step with the norm. When her friends are becoming empty nesters, she is coming to terms with the fact that she won’t have an empty nest, and many of the supports her young adult child used to have will vanish. So her responsibilities will be magnified. <br /><br />Dr. Robert T. Muller:</b> One of the things we’re talking about here is the issue of losses that continue. But it’s not only loss, because it can be very enriching to raise a child with complex developmental needs. </span></div>
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<span style="font-family: "verdana" , sans-serif;">On the other hand, this individual is being reminded that her friends are watching their kids move out. If this parent finds a way for her child to live independently, it may look very different from her friend’s children. Or maybe the child won’t live independently. Do people understand how difficult it is? How stressful it is? Friends may try to get it, but they don’t quite get it. They don’t get that stressful doesn’t even begin to describe it. That is very isolating. <br /><br /><b>BLOOM: You talked in your book about how people who have experienced trauma get used to pretending things are fine. This reminded me of <a href="https://www.amazon.ca/No-Ordinary-Boy-Jennifer-Johannesen/dp/0987736701/ref=sr_1_1?keywords=no+ordinary+boy&qid=1561567881&s=gateway&sr=8-1">a book</a> written by one of our parents, Jennifer Johannesen. Her son Owen had complex medical problems, and died when he was 12. Jennifer wrote about how when she and her son were meeting with therapists, or others out in the world, ‘I would always wear my shining-hero cape.’ We get the sense that professionals expect her to be ‘supermom,’ and keep it all together. ‘There’s nowhere to go with the reality of hopelessness,’ she told me.</b></span></div>
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<span style="font-family: "verdana" , sans-serif;"><b><br />Dr. Robert T. Muller: </b>Part of it is that we have these different personas. She had the role of the rescuer or saviour, but it’s an impossible role. When your child is limited in some way, it’s impossible to be the saviour. You need a space where you can feel sad and worried, and open up about it. It may be very difficult for you to do that, but you need it. <br /><br /><b>BLOOM: You wrote in your book about cultural influences—like the positive thinking movement—that encourage people to suppress sadness. <br /><br />Dr. Robert T. Muller:</b> Yes. On the one hand, the person knows there’s a loss, but there’s a lot of pressure put on them to wear the super-hero cape. Then, when they feel the loss, they feel bad. <br /><b><br />BLOOM: Like, what’s wrong with me? <br /><br />Dr. Robert T. Muller: </b>That’s shame. It’s important for people to understand that it’s okay to feel a sense of loss. It doesn’t make you a bad parent. <br /><br />Of course, when we communicate with our child, we want to be positive and supportive and as hopeful as possible. We don’t want our child to become the parent’s therapist. <br /><br />But a part of us can feel sad and deeply worried. For example, I feel sad that I can’t pay enough attention to my child’s siblings. Parents need to know that it’s okay to feel these things. <br /><br /><b>BLOOM: I googled ‘trauma, therapist and Toronto,’ and was surprised at how few names came up. How can a parent find a therapist and are they publicly funded? <br /><br />Dr. Robert T. Muller:</b> There are a number of OHIP-covered trauma programs that are not only for people who are survivors of physical or sexual abuse. A parent who is experiencing post-traumatic symptoms related to a child’s medical illness may be eligible. There’s a program at Women’s College Hospital, at Mount Sinai Hospital, and at the Homewood Health Centre in Guelph. </span></div>
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<span style="font-family: "verdana" , sans-serif;">What’s important is that the therapist has worked with people who have had different trauma histories. When you’re shopping around for a therapist ask the questions: Have you worked with people who had post-traumatic stress disorder? Have you worked with people who experienced losses because of family issues dealing with a child’s severe disabilities or illness? <br /><br /><b>BLOOM: In your book you talk about how the relationship between a therapist and client is more important to a good outcome than a particular approach. <br /><br />Dr. Robert T. Muller:</b> Evidence-based research has been showing this about psychotherapy in general and trauma therapy specifically. In our quest to say ‘I’ve got the best brand of therapy,’ what is lost is that ultimately any brand of therapy is pretty much equivalent—if you have a good therapy relationship where the therapist is very attentive to what’s happening between the therapist and the client. </span></div>
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<span style="font-family: "verdana" , sans-serif;"><br /> The good news is that if you have trauma symptoms from being in a family situation where you’re coping with developmental losses or illnesses or disabilities, and you seek a therapist, and they say ‘I do cognitive behavioural therapy’ or ‘I do emotion-focused therapy,’ those issues are less important than whether the person is trauma-informed. <br /> <br /> Do they know how to deal with trauma issues that may come out in the therapy relationship? Painful feelings can be provoked in the client and in the therapist. Perhaps the person had doctors who they feel betrayed by, or deeply disappointed in. Or maybe they had doctors who say ‘Be positive,’ and they feel I can’t ever admit that I’m feeling pretty negative right now. The therapist needs to be really attentive to when the client is hurt by something they say, and when they’re encouraged by something they say. </span></div>
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<i><span style="font-family: "verdana" , sans-serif;">You can read more about Dr. Robert T. Muller's work <a href="https://www.amazon.com/Robert-T.-Muller/e/B0033AFO5A%3Fref=dbs_a_mng_rwt_scns_share">here</a>. He is also the founding editor of <a href="http://trauma.blog.yorku.ca/">The Trauma and Mental Health Report</a>, and lead investigator on several multi-site programs to treat interpersonal trauma. His new book was recognized as the best written work on trauma in 2019 by the International Society for the Study of Trauma and Dissociation.</span></i><br />
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BLOOM - Parenting Kids With Disabilitieshttp://www.blogger.com/profile/06901482901008135659noreply@blogger.com0tag:blogger.com,1999:blog-447392662850613354.post-53529308593050565142019-06-18T15:47:00.000-04:002019-06-18T16:01:49.779-04:00'Our nursery programs are a model for social change'<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: "verdana" , sans-serif;">By Louise Kinross<br /><br />It’s a simple ritual, but one of Silvia Souto’s greatest joys. “Opening the door of the classroom at Play and Learn, and seeing the faces of the children—so happy and eager to come and play in our program—that is pure joy,” she says. <br /><br />Silvia is an early childhood educator in one of Holland Bloorview's two nursery schools, which are located in the community. Play and Learn includes children with and without disabilities. Silvia first worked as a volunteer at our old hospital site in 1999, after moving to Canada from Argentina, where she was born. <br /><br />In April, Silvia and Play and Learn co-worker Isabel Zatti made a trip to Macao, China, where they shared Holland Bloorview’s vision of inclusion with early learning educators from 80 countries. </span><span style="font-family: "verdana" , sans-serif;">“</span><span style="font-family: "verdana" , sans-serif;">Isabel and I felt the voice of inclusive programming was not heard at other conferences we'd attended. We wanted to do something about it,</span><span style="font-family: "verdana" , sans-serif;">” Silvia says.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /><b>BLOOM: How did you get into this field?<br /><br />Silvia Souto: </b>After studying psychology and education at university, I worked in special education services in Argentina with children from infants to age five. When my husband and I came to Canada, and were trying to improve our English, my ESL teacher encouraged me to look into Bloorview. You will talk to people who have similar interests, she said, and it will help your vocabulary. I came for a visit and was accepted as a volunteer in the child life program doing bedside play. <br /><br />I vividly remember the nursing station. Cara Sudoma was one of the nurses there, and she would come in and out, full of energy. Later I did an internship in the child life department, was hired at Play and Learn’s summer camp, and accepted a part-time and then full-time job. I did my equivalency and got my credentials as an early childhood educator.<br /><b><br />BLOOM: What is a typical day like now at Play and Learn?<br /><br />Silvia Souto:</b> The day is 'go, go, go,' with no pause button. The program starts at 9, so we're there at 8:30. It’s a high-quality program, which means we need to carefully plan and prepare. We do a lot of hands-on, sensory activities and art. We want the children to express themselves and explore freely. If we see something they’re interested in, we’ll include that into the preparation for the following day. We follow the children's lead.<br /><br />We take early literacy and play very seriously, so we do a guided learning circle every morning and use stories to reflect on what the children are doing in their play, and their interests. When we tell the stories, we use props to catch the children's attention. Our guided learning circle is an opportunity to learn new words, make connections between stories and play. It's an invitation to join in with peers and share the joy that comes with listening to a story. </span><br />
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<span style="font-family: "verdana" , sans-serif;">A typical day happens inside and outside the classroom. In addition to providing children with a rich and meaningful learning environment, we discuss and document their progress, brainstorm strategies to support their participation and learning, talk to their families, and meet with our team of therapists.<br /><b><br />BLOOM: How many children are in a group?<br /><br />Silvia Souto:</b> I work with 10 toddlers and one other teacher. We have one group in the morning and one in the afternoon. We also have volunteers and sometimes co-op students in the classroom. We have a team of therapists who support us in the classroom. They develop a plan of intervention and we find ways we can include it within the child’s play, so it doesn’t look like therapy.<br /><br /><b>BLOOM: What’s the greatest challenge?<br /><br />Silvia Souto:</b> Compared with the challenges our families are facing, I don’t feel I have a right to say it’s challenging. I enjoy it very much. In order to support children and families I do have to take care of myself, because I need to be present constantly in my interactions. It’s a demanding job physically, and you have to be emotionally fit. Sometimes I have to remind myself about what you're told on the plane—to put the oxygen mask on yourself first. <br /><b><br />BLOOM: Is there anything specific you do to manage stress?<br /><br />Silvia Souto:</b> We have a very tight and absolutely supportive team that I can always go to, if I need to. I know I can always count on them for guidance, or support, or for taking a break. When you trust your team in that environment, it’s easier to manage stress. <br /><br />Personally, I like skating in the winter. I keep my skates in the car and sometimes I’ll stop at the local rink and do a couple of laps. The other thing I do to take myself completely out of my worries is jigsaw puzzles. If I need to concentrate on something, I’m going to open a puzzle box. There’s something I love about going from complete chaos to finding the perfect fit. <br /><br /><b>BLOOM: What’s the greatest joy of your work at Play and Learn?<br /><br />Silvia Souto:</b> The trust the parents put in us gives me an immense amount of happiness. For some of the families, our nursery school is where they leave their child for the first time. The other element is witnessing how inclusion works—seeing the interactions of the children, and thinking we are planting the seed for a more just society.<br /><br /><b>BLOOM: What qualities do you need to be successful in your role?<br /><br />Silvia Souto:</b> Energy, definitely. It’s a physical kind of job. You need to be someone who can connect, who can be trusted to develop meaningful relationships with the children and their families. You need to have a solid knowledge of child development. You have to understand children in the context of their families. You need to have a playful soul, to think as a child, and to be creative. <br /><b><br />BLOOM: How do you get your energy?<br /><br />Silvia Souto:</b> At the end of the day, I like to say I’m enthusiastically exhausted.<br /><br /><b>BLOOM: Recently you and Isabel Zatti, Play and Learn’s site facilitator, went to speak at a conference in Macao, China. Can you explain?<br /><br />Silvia Souto:</b> Isabel and I went to the <a href="https://worldforumfoundation.org/events/">World Forum on Early Care and Education</a>, which is a global exchange of ideas on how to develop high quality programs in early childhood. This year there were almost 800 people from 80 countries.<br /><br />Isabel and I felt the voice of inclusive programming was not heard at other conferences we’d attended. We wanted to do something about it. This was the perfect venue, because with so many people, our voices could be amplified.<br /><br /><b>BLOOM: What was your workshop about?<br /><br />Silvia Souto:</b> We presented on a panel on inclusion, from infancy to adulthood. We presented with educators from South Africa and India and Hong Kong. We talked about how Holland Bloorview is a hospital, and within the hospital we have early learning programs like the nursery schools. We took some of the messages from our Dear Everybody campaign, and showed how we embed these messages into the work we do. For example, ‘If we can’t include everyone in a game, we’re not playing it right.’ We gave examples of how we adapt activities and toys to make sure all children can participate. <br /><b><br />BLOOM: How did people respond?<br /><br />Silvia Souto:</b> They were fascinated that a hospital had a community nursery program within it, and that early childhood educators could work in a hospital. They hadn’t seen that before.<br /><br />We made connections with a lot of people. We feel our nursery programs are a model for social change, and we have to invest in those formative years to build a more inclusive society. We wanted to spread the idea that if we support children in developing an acceptance that we’re all diverse, and do it at an early age, it’s much easier than trying to change behaviour later on. The interactions that happen in our programs are so natural.<br /><br /><b>BLOOM: If there was one thing you could change in children’s rehab, what would it be?<br /><br />Silvia Souto:</b> I think inclusive community programs like the ones we have are key. Play and Learn is unique in that we have a lot of support. We have access to training, to other professionals, and we work as a team. But that doesn’t happen in schools, or even in other childcare centres that are working towards inclusion. They may have resource consultants, but I'd like to see a much higher level of support in daycares and schools.</span></div>
BLOOM - Parenting Kids With Disabilitieshttp://www.blogger.com/profile/06901482901008135659noreply@blogger.com1tag:blogger.com,1999:blog-447392662850613354.post-73332085276877793182019-06-17T16:08:00.001-04:002019-06-18T10:15:56.640-04:00Off-duty officer kills non-verbal man, injures parents in Costco<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: "verdana" , sans-serif;">By Louise Kinross<br /><br />This is a <a href="https://www.cnn.com/2019/06/17/us/costco-shooting-questions/index.html">horrifying story</a> for all of us in the disability community who love someone who doesn't speak, and may not be able to comply with police orders in conventional ways.</span><br />
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<span style="font-family: "verdana" , sans-serif;">On Friday night, Kenneth French, 32 (in photo above right, with his parents), was shot and killed by an off-duty police officer in a California Costco store. The officer also shot and critically injured French's parents, who were grocery shopping with him.</span><br />
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<span style="font-family: "verdana" , sans-serif;">Police, speaking to reporters just after the incident, said it happened after an argument between two men. According to this <a href="https://www.coronaca.gov/Home/Components/News/News/4012/1976">news release</a> from the Corona Police Department, "Without provocation, a male unknown to the officer's family assaulted the officer while the officer was holding his young child. This attack resulted in the officer firing his weapon, striking the male and two of the male's family members." The child was not injured.</span><br />
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<span style="font-family: "verdana" , sans-serif;">However, French's cousin, Rick Shureih, <a href="https://www.latimes.com/local/lanow/la-me-ln-costco-shooting-off-duty-officer-intellectual-disability-20190616-story.html">told</a> the <i>Los Angeles Times</i> that French was nonverbal and had an intellectual disability, so a verbal argument wasn't a possibility. </span><br />
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<span style="font-family: "verdana" , sans-serif;">"Speaking about his cousin, Shureih told the paper, 'He was a gentle giant...He's never been violent in the past. He's always been very cooperative and kept to himself.' Shureih said it's possible his cousin may have bumped into someone but he wouldn't have been able to communicate that he was sorry."</span><br />
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<span style="font-family: "verdana" , sans-serif;">Police have not named the officer involved, who was released from hospital with minor injuries. </span><br />
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<span style="font-family: "verdana" , sans-serif;">This BBC piece '<a href="https://www.bbc.com/news/stories-45739335">Don't shoot, I'm disabled</a>,' looks at the hundreds of people with disabilities who are killed by police in the United States each year, because they don't respond in conventional ways to police commands. It could be a person who is deaf, or mentally ill, or who, like French, has an intellectual disability. <br /><br />In <a href="https://www.latimes.com/local/lanow/la-me-ln-costco-shooting-off-duty-lapd-officer-20190617-story.html">a more recent</a> <i>Los Angeles Times</i> piece, we learned that the French family was from Toronto. "Sandra Serrao, who lives in the Toronto area and has been friends with the French family for more than a decade, said the couple and Kenneth moved to California from Mississauga a few years ago to help care for [their] elderly parents...She said Kenneth French was not the type of person to provoke anyone..."</span></div>
BLOOM - Parenting Kids With Disabilitieshttp://www.blogger.com/profile/06901482901008135659noreply@blogger.com0tag:blogger.com,1999:blog-447392662850613354.post-25479743957998822682019-06-13T16:48:00.000-04:002019-06-13T19:27:06.643-04:00In 2019, physical restraint of disabled people is still a thing<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: "verdana" , sans-serif;">Illustration from <a href="https://embracingdiversitynet.wordpress.com/">Captive and invisible</a><br /><br />By Louise Kinross<br /><br />A couple of months ago I wrote down 'physical restraint and seclusion' as a story idea. But when I looked at it on the list, I kept hoping there would be a reprieve. </span><br />
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<span style="font-family: "verdana" , sans-serif;">Instead, every time I went on social media there was a new horror story about disabled children and adults who were restrained, physically or verbally abused, or locked in a school isolation room, hospital, assessment unit or 'care home' for adults. </span><br />
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<span style="font-family: "verdana" , sans-serif;">Yesterday, I read <a href="https://embracingdiversitynet.wordpress.com/">Captive and invisible</a>. It's a series of stories about disabled people who are locked aw</span><span style="font-family: "verdana" , sans-serif;"><span style="font-family: "verdana" , sans-serif;">a</span><span style="font-family: "verdana" , sans-serif;">y<span style="color: #555555;"><span style="background-color: white; font-size: 12px;"><b> </b></span></span></span><span style="font-family: "verdana" , sans-serif;">i</span><span style="font-family: "verdana" , sans-serif;">n </span></span><span style="font-family: "verdana" , sans-serif;">hospitals, institutions and private homes. It was produced by the UN Special Rapporteur on the rights of persons with disabilities. One of the stories is about people in Ghana, for example, who are sent to prayer camps, to be healed, where they are shackled and live in horrendous conditions. Catalina Devandas Aguilar, the UN expert, discusses the <a href="https://www.facebook.com/HumanRightsWatch/videos/people-with-disabilities-locked-awayworldwide-one-billion-individuals-have-a-dis/428646477679684/">series here</a>.</span><br />
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<span style="font-family: "verdana" , sans-serif;">The selection of stories, such as the one in the image above, suggests that the problem is in developing countries. "Amil is autistic, and he lives in a rural village with his family," is the text that accompanies it. "They have no help, and there are no services in the community, so he spends all his days and nights locked up in a room."</span><br />
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<span style="font-family: "verdana" , sans-serif;">But this isn't just happening in low-income countries. It is happening in Europe and the United States and right here at home in Canada.</span><br />
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<span style="font-family: "verdana" , sans-serif;">Last month, the BBC aired a <a href="https://www.independent.co.uk/news/health/whorlton-hall-nhs-cygnet-abuse-learning-disabilities-staff-threat-private-a8925841.html">shocking investigation</a> into a British home for adults with autism and intellectual disabilities. </span><span style="font-family: "verdana" , sans-serif;">The home, funded by the National Health Service, is referred to in the British press as a 'specialist hospital for people with learning disabilities,' which is the term used there for intellectual or developmental disability.</span><span style="font-family: "verdana" , sans-serif;"><br /></span><br />
<span style="font-family: "verdana" , sans-serif;">A reporter went undercover as a worker and filmed her colleagues taunting, intimidating, degrading, provoking and repeatedly restraining patients. They bragged about times they'd assaulted patients, like banging a person's head against the floor. Then it was revealed that patients had reported bullying by staff in </span><a href="https://www.hsj.co.uk/patient-safety/draft-cqc-report-had-accused-whorlton-hall-staff-of-bullying/7025272.article" style="font-family: verdana, sans-serif;">an inspection report</a><span style="font-family: "verdana" , sans-serif;"> in 2015 that was never published. Last year, the home was bought by an American multinational company. What interest, other than monetary, could a U.S. multinational have in a British hospital for people with intellectual disabilities? Ten staff members were recently arrested.</span><br />
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<span style="font-family: "verdana" , sans-serif;">A similar case in New York City came to light five years ago in a home for adults with developmental disabilities dubbed the "Bronx Zoo" by staff. But despite an investigation that found staff at the state-run home smacked, pushed and punched residents, New York State officials who tried to fire 13 employees for abuse or neglect were unsuccessful.</span><br />
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<span style="font-family: "verdana" , sans-serif;">According to <a href="https://www.nytimes.com/2019/06/09/nyregion/new-york-group-home-abuse.html">an article</a> earlier this week in <i>The New York Times</i>, the workers were shielded by the state arbitration process. In addition, The Times found that over one-third of employees statewide found to have committed abuse offences at group homes and other facilities between 2015 and 2017 were put back on the job.</span><br />
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<span style="font-family: "verdana" , sans-serif;">Which reminded me of my own son's experience back in 2009, when a school staff member, angry because he picked a butt up off the ground in a park, and pretended to smoke it, dragged him across the playground and pushed him into his wheelchair. He had a dislocated hip at the time. Other staff reported this person, but the principal didn't deem it necessary to call me until 24 hours later, when she asked if my son had told me about an 'incident.' No, he doesn't speak, he hadn't, I said. It wasn't until that night, when I asked him about it, that he signed the story to me. He never would have told me otherwise.<br /><br />The staff member was sent home, the police were called, and I was asked to check for bruises. I was told that the staff member would never be in a class with my son again. Imagine my surprise, then, when the following year, this same staff person turned up working at the mainstream school my son had transferred to. And had the nerve to approach, and talk, to my son. So I had to call the principal and read him the riot act that this person was to have no contact with my son.</span><br />
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<span style="font-family: "verdana" , sans-serif;">Only two days ago, </span><a href="https://www.theglobeandmail.com/canada/article-cornered-canadian-schools-reach-a-turning-point-in-use-of-seclusion/" style="font-family: verdana, sans-serif;">this piece</a><span style="font-family: "verdana" , sans-serif;"> in </span><i style="font-family: verdana, sans-serif;">The Globe and Mail</i><span style="font-family: "verdana" , sans-serif;"> summarized the Canadian practise of physically restraining or isolating, in locked rooms, children with autism or other disabilities who "act out." Sheila Bennett, a professor at Brock University in St. Catharines, Ont. was quoted as saying she was horrified to hear about a plan to build more seclusion rooms in Ontario school districts. "When an isolation room exists, it becomes a viable alternative for behaviour and inhibits our ability as experts and educators and compassionate people to find solutions that work better," she said.</span><br />
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<span style="font-family: "verdana" , sans-serif;">In April, a British teenager with autism and mental health problems who had spent two-and-a-half months in an isolation booth at school, a variation on the isolation room, where students sit in cubicles in silence and have no direct teaching, <a href="https://www.bbc.com/news/education-47898657">tried to kill herself</a>. Her mother said she was unaware, for months, of what was happening. <br /><br />I'm not an expert, but how could any educator possibly imagine that a child with autism and anxiety would blossom sitting alone in silence?</span><br />
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<span style="font-family: "verdana" , sans-serif;">Just yesterday, I read a post in a closed Facebook group for parents of children with disabilities where a local parent asked if a school has to document every time a staff member physically restrains her child. She'd been asked to pick up her young child in the morning, and it was only after he was in the car that she learned that a teacher had put him in a hold. </span><br />
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<span style="font-family: "verdana" , sans-serif;">A teacher can restrain a child in a physical hold, and not tell a parent about it?</span><br />
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<span style="font-family: "verdana" , sans-serif;">In 2019?</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span><span style="font-family: "verdana" , sans-serif;">In another Ontario online group a parent spoke about how her adult son with autism has spent months in a locked psychiatric hospital because there are no options for him to live in the community. And she knows of a handful of families in similar situations.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span><span style="font-family: "verdana" , sans-serif;">Last week the photo below was tweeted by many British parents to show what it's like for a parent in the U.K. to visit their autistic teen who is locked in an inpatient mental health facility. </span><br />
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<span style="font-family: "verdana" , sans-serif;">How did being held like a criminal become an accepted practice for disabled children and adults in our schools and hospitals and group homes?<br /></span><br />
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BLOOM - Parenting Kids With Disabilitieshttp://www.blogger.com/profile/06901482901008135659noreply@blogger.com0tag:blogger.com,1999:blog-447392662850613354.post-38543028682557767752019-06-11T14:00:00.001-04:002019-06-11T14:08:05.387-04:00Why do so many parents feel inadequate?<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: "verdana" , sans-serif;">By Louise Kinross</span><br />
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<span style="font-family: "verdana";">When I first saw the title of <a href="http://www.anndouglas.ca/">Ann Douglas</a>'s new book, <a href="https://www.amazon.ca/s?k=happy+parents+happy+kids&hvadid=74904299353551&hvbmt=be&hvdev=c&hvqmt=e&tag=msncahydra-20&ref=pd_sl_6gbzdj753v_e">Happy Parents, Happy Kids</a>, I was a bit skeptical. I wasn't sure if it was too simple a premise to apply to the unique challenges of parenting kids with disabilities or chronic health problems. </span><br />
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<span style="font-family: "verdana";">But in <em>Happy Parents, Happy Kids</em>, Ann argues that many of the pressures facing parents today can't be relieved one family at a time. That's why broad changes are needed at a cultural and policy level to create the kind of wrap-around supports that enable all parents and children to thrive. We talked about why so many parents today feel so inadequate, no matter what they do.</span><br />
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<strong><span style="font-family: "verdana" , sans-serif;">BLOOM: In 2015 we spoke about your book </span></strong><a href="https://www.amazon.ca/Parenting-Through-Storm-Everything-Between/dp/1443425699/ref=sr_1_1?ie=UTF8&qid=1430426430&sr=8-1&keywords=parenting+through+the+storm"><strong><span style="font-family: "verdana" , sans-serif;">Parenting Through The Storm</span></strong></a><span style="font-family: "verdana" , sans-serif;"><strong>—which focused on parents raising children with neurodevelopmental disabilities and mental health issues. What inspired you to write another book? <br /><br />Ann Douglas:</strong> I thought a lot of the messages conveyed in <em>Parenting Through The Storm</em> needed to land with a broader audience of every parent. It’s not just parents of kids who are struggling who need to think about self-compassion, self-care and community. Every parent is at risk of feeling isolated and burnt out and self-critical. </span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span><span style="font-family: "verdana" , sans-serif;"><strong>BLOOM: What kind of parents did you interview in your new book? <br /><br />Ann Douglas:</strong> I tried to go for a diverse group of parents. I have people from every kind of income level, and different situations, family structures and challenges. The book includes insights from the parents of a child who is living with a rare disorder that makes the future a wildcard. It includes the story of a mom who is living with stage four cancer. And it features comments from a mom who is juggling five part-time jobs, and who is completely fed up with pat answers and simple solutions. <br /><br />I deliberately asked the technical reviewers of the book to look at inclusiveness and equity. For example, at one point in the book I’d written about doing batch cooking on the weekend, and one of the tech reviewers pointed out “If you can barely afford the groceries for one meal, you can’t afford to do batch cooking.’ I wanted to make sure we weren’t just talking about people in traditional, predictable 9 to 5 jobs, when the new normal for many families is contract and more precarious work. </span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span><span style="font-family: "verdana" , sans-serif;"><strong>BLOOM: I heard you speak recently, and you said many parents who were really interested in the idea for your new book then declined to be interviewed for it. Did that surprise you? <br /><br />Ann Douglas:</strong> It did, because I’ve been writing about parenting for a long time, and I’d never felt that level of fear, particularly here in Canada. It seemed that all parents had a sense that they were parenting wrong. There was a lot of worry about judgment from others. They felt they might not be the best parent to be interviewed about this stuff. There’s been a lot of anxiety happening in the broader parenting culture. Parents are anxious about the world they’re raising kids in today, and what it’s going to be like when their kids are old enough to establish their own lives. They’re anxious about so many things. <br /><br />Locally, in Ontario, we’ve seen parents speaking out about the changes to autism services, and the cuts to education funding. And it's not just parents of children who are directly affected who are feeling this anxiety. Parents worry that the same thing could happen to a program that affects their child, or perhaps to a more universal program that’s available to all families. <br /><br />Parents feel like they’re being asked to shoulder so much responsibility, and they’re worried that the rules of the game have changed. Maybe you can’t get the job that allows you to pay the bills. Maybe you’re piecing together a whole bunch of precarious and unpredictable jobs and wages. <br /><br />Parents are thinking ‘I can hardly do this now, what happens if things get worse?’ Anxiety is a perfectly logical reaction to the state of the world today, and we need to stop blaming parents for being so anxious, and give them less to be anxious about. We all need to link arms and say ‘It’s not right that anyone is losing out on what their child needs to thrive.’ </span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span><span style="font-family: "verdana" , sans-serif;"><strong>BLOOM: What other factors make parenting feel particularly hard these days? <br /><br />Ann Douglas:</strong> In order to pay the bills, in most families you need to have both parents working full-time, and a lack of work-life balance is a huge issue. </span><br />
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<span style="font-family: "verdana" , sans-serif;">A lot of research shows it’s at the heart of what makes parents feel guilty and inadequate on a personal level. Parents think if they just try harder, they could figure out a way to have the energy to be working full time, and at the same time to be parenting to an increasingly high standard. People feel massively overloaded and guilty. A parent named Elaine in my book said it doesn’t matter where she is, or who she’s with, she feels she’s letting someone down at work or home. </span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span><span style="font-family: "verdana" , sans-serif;"><strong>BLOOM: What in your new book will resonate with parents of children with disabilities? <br /><br />Ann Douglas:</strong> I think what’s different about this book is that it’s a much more political book. <em>Parenting Through The Storm</em> was rooted in personal stories and what you can do at an individual family level, and the need to have peer support and community. The new book is about grabbing your community and your picket signs and demanding a better world for kids and parents. </span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span><span style="font-family: "verdana" , sans-serif;"><strong>BLOOM: So the problems we’re facing aren’t ones we can necessarily solve alone? <br /><br />Ann Douglas:</strong> No. One of the parents I interview in the new book said systemic problems require systemic solutions. Otherwise, we feel it’s an individual failing when we can’t make it all work. But how can we make it all work? <br /><br />How can we solve problems like climate change or create universal child care in our spare time? Then, when a parent is dealing with something extra, like a child’s disability, you can turn up the dial by 10,000 per cent. </span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span><span style="font-family: "verdana" , sans-serif;"><strong>BLOOM: You talk about the importance of parents remaining calm. <br /><br />Ann Douglas:</strong> First, it’s important for our own parenting. Unless you can hit the pause button and consider what’s working, or not working, with your child, you can’t pivot and figure out the best way to move forward. It’s also important to provide an atmosphere where kids feel reassured that as parents we’ve got it—we’re going to take care of them, and they don’t have to worry about parenting us. <br /><br />I’m someone who has to work really hard at staying calm. It’s not my natural state, and I recognize that a lot of people are wired this way. We should probably say it’s important to stay 'calmer,' not calm, even if it’s just at the start or the end of the day. We don’t need to be intensively doing meditation for hours on end! That’s never been the reality of my life, and it won’t be for most people. </span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span><span style="font-family: "verdana" , sans-serif;"><strong>BLOOM: How can we be calm when we’re dealing with the uncertainty of a child with chronic illness or complex problems? <br /><br />Ann Douglas:</strong> One thing you can do is find a safe person who can help you to carry the emotional load. There’s an awful lot of administrative work and letter writing when your child is struggling. The next time your child is suspended, maybe you can get a friend to write that letter to the school. Every letter doesn’t have to be written by the parent. Maybe another caring family member or a friend could write it. Maybe instead of feeling that you have to read all of these websites to find out what your child qualifies for, you can tap into a pool of people who’ve already done that reading, so you don’t have to start from scratch. </span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span><span style="font-family: "verdana" , sans-serif;"><strong style="font-family: verdana, sans-serif;">BLOOM: So a group online for parents of kids with disabilities?<br /><br />Ann Douglas:</strong><span style="font-family: "verdana" , sans-serif;"> Yes. We’re also talking more in society now about the idea of being an ally to somebody. So who do I know in my circle who might be good at writing letters? Who is a chatterbox and would love to make a bunch of phone calls to ask questions of service providers? </span><br /><br /><span style="font-family: "verdana" , sans-serif;">Over the weekend I received a message from a friend asking me to write a letter to encourage politicians in a nearby small town to reconsider their longstanding policy of never flying the pride flag. I was so happy he made that ask. I spent half an hour writing a letter I was proud </span><span style="font-family: "verdana" , sans-serif;">of</span></span><span style="font-family: "verdana" , sans-serif;">—a </span><span style="font-family: "verdana" , sans-serif;">letter that talked about how important it is for every citizen of, and visitor to, that small town to feel welcome and included. Too often, we have a misguided notion that it’s wrong to ask other people for a favour, and we forget the times we’ve been able to do someone a favour, and how great it feels. </span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span><span style="font-family: "verdana" , sans-serif;"><strong>BLOOM: One of your chapters is about guilt. I know parents of kids who are born with disabilities may feel guilty because we couldn’t prevent our child from having extra challenges. <br /><br />Ann Douglas:</strong> We need to look at the difference between situations that are, or aren’t, within our control, and be clear where these things fall. In most cases, none of us would consciously choose to make life harder for our kids. With genetics and the environment it’s a bit of the spin of the roulette wheel for all of us. <br /><br />We also need to think about guilt in terms of the expectations we place on ourselves. I often hear from parents of kids with special needs who feel they’re doing it wrong, because they’re exhausted, or not joyous or endlessly positive. When you’re burning out, how can you feel joyful and energized? We have to be realistic, and not add an additional layer of ‘I have to be endlessly positive’ on top of what is already a massive and unsustainable load. </span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span><span style="font-family: "verdana" , sans-serif;"><strong>BLOOM: I’ve found the messages from <a href="https://self-compassion.org/">Kristin Neff</a>’s books on self-compassion helpful. <br /><br />Ann Douglas:</strong> The biggest thing I’ve taken from her work is to reframe what we tell ourselves by asking ‘Would I say this to a friend?' If a friend told me ‘I’m the worst parent in the world,’ what would I say? Then try to say those kind things you would tell a friend to yourself. </span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span><span style="font-family: "verdana" , sans-serif;"><strong>BLOOM: You argue that parents and kids need a village of support around them. Sometimes it's hard for parents of kids with disabilities to find that support, or build it.<br /><br />Ann Douglas:</strong> At a lot of my presentations, parents are telling me that they feel isolated and cut off. Given that so many of us are massively overloaded with work and other commitments, it’s not surprising. But sometimes people get this idea that to have a village you have to have 40 people around you. The village could be two to three people. It doesn’t have to be huge to be strong.<br /></span><br />
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BLOOM - Parenting Kids With Disabilitieshttp://www.blogger.com/profile/06901482901008135659noreply@blogger.com0tag:blogger.com,1999:blog-447392662850613354.post-3891558826409613412019-06-08T20:00:00.000-04:002019-06-08T20:06:49.675-04:00Busy engineer finds happiness in children's hospital<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: "verdana" , sans-serif;">By Louise Kinross<br /><br />Emile Benyamin is an engineer who spends his days taking care of robots. His robots extract DNA from human blood and saliva, so it can be studied in research and clinical labs in hospitals. Emile travels across Canada to train scientists on the robots, and troubleshoot when there are problems. <br /><br />But when BLOOM interviewed Emile, he had come in to Holland Bloorview on a Thursday night to volunteer with young children in our Ronald McDonald Playroom. “Emile is always down at the level of the kids, right in the thick of it all,” says Daniel Scott, who coordinates the playroom. “He’s very eager and hands-on with building or imaginative play.” <br /><br />Emile's presence meant that the children’s parents could attend a talk about getting their kids, who have disabilities, involved in sports. <br /><br />On Saturday mornings, Emile, whose three children are grown, drives in to the hospital from Richmond Hill to volunteer with inpatients with the most complex medical problems. Many, like Krystal above, use ventilators to breathe. Last Christmas Emile dressed up as Santa Claus on the unit. We spoke about why he’s so committed. <br /><br /><b>BLOOM: How did you hear about Holland Bloorview? <br /><br />Emile Benyamin: </b>I work in hospitals—even Sunnybrook is one of our customers. I love kids in general and I always wanted to come here to volunteer. I do a lot of work for SickKids hospital. When I applied to volunteer here, I had to get two references, and one was from a PhD I work with at SickKids. I’ve been working at SickKids for more than 10 years, and they know me well. When I joined here, I was so impressed with the hospital and the services for the children. That’s why I love it so much, and I wanted to give more. </span><b style="font-family: Verdana, sans-serif;"><br /><br />BLOOM: What is a typical shift here like for you?<br /><br />Emile Benyamin:</b><span style="font-family: "verdana" , sans-serif;"> My main shift is Saturday morning from 9:25 to 11:45 on the complex continuing care unit. We have a supervisor who runs a program—like art or cooking—and we usually work one on one with the children. Some are able to participate and others aren’t. But we still work with them, and hold their hands. Some of them we don’t know if they feel or hear us, while others hear and understand. If there isn’t a program, we may sit with a child at the bedside and read. <br /><br /><b>BLOOM: What’s the greatest challenge of the work? <br /><br />Emile Benyamin: </b>My focus is on how to make the children happy, how to comfort them, and most importantly, making sure they are safe. <br /><br />Even though they are not speaking they are communicating a lot. They may smile. When one child is not comfortable, she will shake her head. We know something is bothering her—maybe she needs [her airway] suctioned, or she wants us to change the song we’re playing. <br /><br /><b>BLOOM: So you learn how to read their communication. You’re a very busy person. How do you make time to volunteer here?<br /><br />Emile Benyamin:</b> I don’t go to movies. This work is fun for me. </span><span style="font-family: "verdana" , sans-serif;">Put me somewhere where I can play with kids. </span><span style="font-family: "verdana" , sans-serif;">It’s my relief. It takes away all of the stress and hassle of thinking about work and problems.<br /><br /><b>BLOOM: What’s the greatest joy? <br /><br />Emile Benyamin:</b> I love the kids so much that I find myself very happy being with them. Because the children are weak or sick, I feel good about doing something good for them. I'm always excited to work with them.</span><span style="font-family: "verdana" , sans-serif;"><br /><b><br />BLOOM: I know this place can be like a ghost town on the weekend. How do the children on the unit benefit from people like you coming in?<br /><br />Emile Benyamin:</b> In my opinion, we do a very good program, and the program drives us. I’m just a part of it. <br /><br /><b>BLOOM: How did you get so committed to volunteering in the first place? <br /><br />Emile Benyamin: </b>I volunteer with a seniors’ home close to my house in Richmond Hill. I’ve been doing that for 10 years. I have so many friends there. I had one client who was a very good friend of mine who passed away last year. She was 96 and she had a very sharp memory. She would ask me to sit, so she could tell me stories from when she was four years old. It’s heartbreaking sometimes when I go and I don’t find someone I’ve been seeing for years. <br /><b><br />BLOOM: Has anything surprised you about your work at Holland Bloorview? <br /><br />Emile Benyamin</b>: Yes. The staff are very well trained and they respect the kids so much. They really care about them. <br /><br />For example, sometimes we do reading, and one boy’s eyes are usually closed. I was taught to put the book mark exactly where I stop, so that when the next person goes to read, they know where to start. I see a lot of respect in this. I’m trying to learn from the staff. <br /><br /><b>BLOOM: You mentioned that most of the volunteers are students. <br /><br />Emile Benyamin:</b> Yes. I’m the only old guy there. I love to see people of a young age volunteering. The community needs it and the children need it. When we have a new, young volunteer, I keep an eye on them, too. </span><br />
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<span style="font-family: "verdana" , sans-serif;"><i>Emile and Emma at work making chocolate chip cookies that fill the room with fragrance.<br /></i></span><br />
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BLOOM - Parenting Kids With Disabilitieshttp://www.blogger.com/profile/06901482901008135659noreply@blogger.com0tag:blogger.com,1999:blog-447392662850613354.post-76644239900217425872019-06-07T14:36:00.000-04:002019-06-07T14:37:47.615-04:00'Kindness matters...that is what good care is'<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: "verdana" , sans-serif;">By Louise Kinross</span><br />
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<span style="font-family: "verdana" , sans-serif;">Karen Ward has worked with children with disabilities for over 30 years. I met her 22 years ago, when my son attended a Scarborough nursery school run by Easter Seals (the program is now run by Holland Bloorview). Karen explained how the integrated, play-based program worked. She was so warm and kind and upbeat. Karen hasn’t changed a bit, but she now manages many clinical programs at Holland Bloorview, with a focus on work in the community. We talked about the joys and challenges.<br /><b><br />BLOOM: How did you get into this field? <br /><br />Karen Ward: </b>I took a bachelor of applied science in child psychology at Guelph University. Do you remember Robert Munsch? <br /><br /><b>BLOOM: The children’s book author/illustrator? <br /><br />Karen Ward:</b> Yes. He was one of my professors. He was fabulous in how he engaged students to engage young children. He was someone who made me understand the importance of early learning and that I wanted to be a part of it. My first role after school was running a daycare program for children with special needs at Variety Village. It was run by Easter Seals, but located at Variety Village. <br /><br /><b>BLOOM: And later the nursery schools in the community that were run by Easter Seals became Holland Bloorview programs. <br /><br />Karen Ward: </b>Yes, in 2003 Joan Ferguson and Sheila Jarvis could see that the children we served in the Easter Seals programs were followed here, and there would be better alignment to have the programs run by Holland Bloorview. <br /><br />The nursery schools were aligned with participation and inclusion, because they were community programs. I’ve always been interested in community-based education. Whether we have early childhood educators doing play-based intervention with families in their homes, or specialized teams who go into Toronto day cares to provide therapy or help adapt a program, or therapists who support clients who use communication and writing aids at home and in schools. <br /><br /><b>BLOOM: Why were you interested in children? <br /><br />Karen Ward:</b> I came from a really large family where there was a lot of family involvement. I think I saw the amazing potential in young kids. I saw they were this wonderful canvas for what could be, and I wanted to be a part of that. <br /><br />I remember going for my first job interviews and they were to work with typically developing kids. I thought that might be interesting. But then this opportunity at Variety Village came up and I thought it would mean a huge amount of learning for me. I was fascinated by it. <br /><br /><b>BLOOM: Was that your first exposure to disability? <br /><br />Karen Ward</b>: No. When I was in my teen years I was a swimming instructor and a lifeguard and I had taught children with disabilities before. <br /><br /><b>BLOOM: What is a typical day like here? <br /><br />Karen Ward:</b> You’ve got to be kidding! I’m constantly changing hats. I may get calls from any one of the programs to help them troubleshoot, when we need to make adaptations. <br /><br />I have amazing teams that run exceptional programs, and I’m honoured to work with them. A typical day is always trying to improve the quality of what we’re doing. One of the big things we’re doing right now is building community capacity. <br /><br />A lot of my role is making sure I understand politically where we’re going, and who are the internal and external partners we need to be constantly dealing with to push that forward. Now we’ve become part of ambulatory services, we’ve really broadened our scope. <br /><br />I think early learning, especially, is being recognized as an important enhancement to a lot of programs. For example, when a child under age five comes into our spina bifida clinic, they will see an infant development worker who will help link the parents to supports in the community. <br /><br />Or if we have a young inpatient here about to be discharged, we will give them information about local services, whether that’s in Toronto or Thunder Bay. People are asking our staff to share their expertise, whether it’s in creating play-based therapies for kids with autism, or making sure literacy and communication are embedded in school curriculums for our clients.<br /><b><br />BLOOM: What is the greatest challenge of your job? <br /><br />Karen Ward: </b>Making sure that we clearly hear what our clients and families need. They drive our programs of excellence. They make us think differently. They’re at the core of everything we do. <br /><br /><b>BLOOM: What’s an example? <br /><br />Karen Ward:</b> Well, we’ve looked at revisions to the referral criteria for communication and writing aids. Based on the organization's No Boundaries strategic plan and client and community feedback, we worked diligently to streamline the process. We made it more user-friendly, understandable and easier to access. We talked to families, reflected on best practices and what other agencies are doing, and adapted the criteria.<br /><br /><b>BLOOM: What's the greatest joy?<br /><br />Karen Ward:</b> Talking to the parents. No question. Staying connected with the parents over time. I’m known so many clients since they were two or three years old. They’re the ones who have made me change. I’m fascinated by clients and families, and I listen to them. <br /><br />Then there are the frontline clinicians. I’m in awe of what they do and so respectful of it. I don’t want to be their leader, I want to be their partner. I’m so pleased when we, as a team, make a quality improvement and everybody sees the benefit of it. I’m a real hands-on leader. <br /><br /><b>BLOOM: What other qualities do you need to be good in your job? <br /><br />Karen Ward: </b>You need a tremendous level of awareness and of kindness. You need to figure out how to manage people. You may need to make decisions that don’t always have the full support of everyone. However, you acknowledge that concern, and ask that we all just give it a try. We need to keep trying, and to have a vision of what can be better, even though we might stumble along the way. I’m always telling staff that if something doesn’t work, we will work to make it right.<br /><br /><b>BLOOM: What emotions come with the job? <br /><br />Karen Ward:</b> Tremendous joy, because I absolutely want to be working here. I do have concern about the future of some of our services for our families, based on municipal and provincial politics. I do worry about how some of our families will access some programs. I do get frustrated that we can’t do more, or there isn’t enough time in the day. I’m often concerned about the wellbeing of the staff. They give 150 per cent, and I’m always trying to keep their health and wellbeing in check. I care very much for them. <br /><br />I love the busyness of my work. I love that it’s never the same day. <br /><br /><b>BLOOM: Is there anything you do to manage stress? <br /><br />Karen Ward:</b> I really love walking. I walk on the boardwalk at the beach. And I have a couple of really good friends, and sisters, that I make sure that I see and spend time with. <br /><b><br />BLOOM: If you could change one thing about children’s rehab, what would it be? <br /><br />Karen Ward: </b>I think we need to broaden what we do. We’re trying really hard to expand our hours and the diversity of groups that we offer. Our families have such a hard time when our hours are rigid. </span></div>
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<span style="font-family: "verdana" , sans-serif;">The other thing I think is key to success, and which we haven’t done as well as we could, is to infiltrate the community. We need so much more of our rehab services in core community groups—in camps, sports programs, library programs. We need so much more of us 'out there,' instead of 'in here.' We need to broaden our arms. If we keep rehab within four walls, it will never be as inclusive as we need it to be. <br /><br /><b>BLOOM: If you could give yourself advice on your first day, from where you sit now, what would it be? <br /><br />Karen Ward: </b>Kindness matters so much. I think we need to remember to be kind to everyone—families, staff, each other. That is what good care is. <br /><br />Because my background is in education, people used to say I’m not a clinician, so how can I manage clinicians? You don’t have to be clinical, you have to have solid core values. Kindness and honesty are two values that are very important to me. I’m very good at acknowledging I don’t know everything. When I need to know about speech, I go to an SLP. If I need to know about occupational therapy, I go to an OT. As a leader, you need to be able to pull from different people to figure things out. Together, we can build remarkable teams and programs for everyone.</span></div>
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BLOOM - Parenting Kids With Disabilitieshttp://www.blogger.com/profile/06901482901008135659noreply@blogger.com0tag:blogger.com,1999:blog-447392662850613354.post-65019990983357164032019-05-31T13:00:00.000-04:002019-05-31T13:03:43.458-04:00Friday bonus watch<div dir="ltr" style="text-align: left;" trbidi="on">
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<a href="https://youtu.be/EsVzlyD7ArM"><iframe allowfullscreen="" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/EsVzlyD7ArM/0.jpg" frameborder="0" height="266" src="https://www.youtube.com/embed/EsVzlyD7ArM?feature=player_embedded" width="320"></iframe></a></div>
<span style="background-color: white; color: #555555; font-family: "verdana" , sans-serif; font-size: 12px;"><br />This <a href="https://youtu.be/EsVzlyD7ArM">short film</a> about living with a dad who has cerebral palsy, uses a wheelchair, and communicates with a pointer and letterboard, is now available on YouTube. <i>My Dad Matthew</i> is seen through the eyes of Elijah, who was then 14, and considers his father Matthew “a pretty normal dad.” </span><br />
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<span style="background-color: white; color: #555555; font-family: "verdana" , sans-serif; font-size: 12px;">Want to hear directly from Matthew, who's </span><span style="background-color: white; color: #555555; font-family: "verdana" , sans-serif; font-size: 12px;">a professor in disability studies at Northern Arizona University? Read <a href="https://bloom-parentingkidswithdisabilities.blogspot.com/2017/02/hes-pretty-normal-dad.html?fbclid=IwAR1K4rLZ8xKQ6Fq1Fye_3KrI7F3d4OMooDn1iEh4apxZN6rWKIJaRct4JIQ">our interview</a> with him. Happy Friday!</span></div>
BLOOM - Parenting Kids With Disabilitieshttp://www.blogger.com/profile/06901482901008135659noreply@blogger.com0tag:blogger.com,1999:blog-447392662850613354.post-80439395998913986742019-05-28T16:29:00.002-04:002019-05-28T16:30:08.868-04:00How to keep in touch<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: verdana, sans-serif;">Do you want to read and watch family stories about parenting children with disabilities? And hear about what it's like to work in children's rehab? Plus get links to mainstream disability news and opinion pieces? </span><br />
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<span style="font-family: "verdana" , sans-serif;">In addition to checking the blog, you can follow BLOOM <a href="https://www.facebook.com/BLOOMHollandBloorview/">on Facebook</a>.</span><br />
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<span style="font-family: "verdana" , sans-serif;"><a href="https://bit.ly/2gNtqDq">Sign up</a> to receive our monthly e-letter in your inbox (includes shout-outs to people and groups making the world a more inclusive place and our book shelf).</span><br />
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<span style="font-family: "verdana" , sans-serif;">And <a href="https://bit.ly/2mmQg7n">check out</a> eight episodes of our video series called <i>A Family Like Mine</i>, which features diverse parents raising children with a wide range of disabilities.</span></div>
BLOOM - Parenting Kids With Disabilitieshttp://www.blogger.com/profile/06901482901008135659noreply@blogger.com0tag:blogger.com,1999:blog-447392662850613354.post-36320183104477920622019-05-27T17:26:00.003-04:002019-05-27T17:36:17.313-04:00'We Carry Kevan' aims to inspire a new model of inclusive travel<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: "verdana" , sans-serif;">By Louise Kinross</span><br />
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<span style="font-family: "verdana" , sans-serif;">Kevan Chandler paid a visit to Holland Bloorview last week on a tour to promote his new book <a href="https://www.amazon.com/We-Carry-Kevan-Countries-Wheelchair/dp/1683973178/ref=sr_1_1?keywords=we+carry+kevan&qid=1558963939&s=gateway&sr=8-1">We Carry Kevan: Six friends. Three countries. No wheelchair</a>. <br /><br />We’ve interviewed Kevan twice. Once about his 2016 <a href="https://bloom-parentingkidswithdisabilities.blogspot.com/2016/07/how-to-travel-europe-by-piggyback.html">trip to Europe</a> with friends who carried him in a modified backpack, and once as he planned a similar trip last year to China, where he visited care centres that support orphans with disabilities. Kevan lives in Fort Wayne, Indiana, has spinal muscular atrophy, and weighs about 65 lbs. It was awesome to meet Kevan in person. <br /><br /><b>BLOOM: What is the purpose of your new book?<br /> <br /> Kevan Chandler: </b>The new book chronicles our adventures in Europe and then China, and everything building up to that, with a little bit of autobiographical information about my childhood. It’s a travel memoir of our journey so far, and within that it gives a lot of insights on my perspective about disability and our friendships and how that all ties together. <br /><br /><b>BLOOM: What message do you hope readers take away? <br /><br />Kevan Chandler: </b>I think for folks with disabilities, it’s an encouragement to see someone with a disability living a full life, and in such a way that people can read it and say ‘Oh, yea it is possible. I can do that, too, in my own way. Our story is about how we figured out how to do things. We’re not telling people how, but saying you can figure it out with the people around you. <br /><br />For the able-bodied community, the book is an insight into a world they may not be familiar with, and an encouragement to plug into that world. It’s an ice-breaker. <br /><b><br />BLOOM: We spoke with you before you went to China. Now that you’ve actually been there, what was the greatest challenge? <br /><br />Kevan Chandler</b>: There were a lot of challenges. We went to three cities and we had three very dynamically different experiences. Going into each city, we’d get settled, fall in love with the place and have to leave. We spent most of our time in care centres for orphans with disabilities—really getting to know the children and staff and very quickly building some life-long relationships. It was surprising how you can be somewhere for only four to five days and feel homesick for that when you leave. <br /><br /><b>BLOOM: I guess you were immersed in the children’s lives. <br /><br />Kevan Chandler: </b>To see that 24-7 life of caring and loving for these kids, and being in that community, yes, we were immersed. And there was a physical toll as well. The first city we were in was a village in the middle of nowhere. The conditions were more difficult there. The other care centres were a bit more Western—spectacular, clean and well-equipped. <br /><br /><b>BLOOM: What did you do there? <br /><br />Kevan Chandler:</b> We rolled around on the floor and played with them and held them and cuddled them and talked with them. They loved having us there. Most of the nannies and caregivers are women, so it took a little time for them to get used to a group of guys. <br /><br />There was a language barrier and a lot of the children were non-verbal, so there wasn’t a lot of communicating with words. At first the guys brought me in and set me in my backpack with the kids, but the kids didn’t know what to think of the backpack. I decided it was better to lay me on the floor with them: ‘I’m here, I look like you.’ We talked with them and made noises and rolled around. <br /><br /><b>BLOOM: Did you take any of your backpacks with you? <br /><br />Kevan Chandler: </b>We took two to donate. The staff would bring a child into the room to meet me, and one of the guys would get me set up in my backpack while the child watched. If the child responded well, we’d pull out the extra backpack. We’ve been working with <a href="https://www.deuter.com/DE/en/index.html">Deuter</a> to develop an adapted design. When we get the first order in this summer we’re sending 10 to the care centres, with a plan to send more.</span><br />
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<span style="font-family: "verdana" , sans-serif;"><b>BLOOM: What was the greatest joy of the trip? <br /><br />Kevan Chandler: </b>Being with the kids was the greatest joy, and getting to experience it with my friends. You can imagine the heart of these guys to care for me like they do, so I can travel with them. We saw everything from the care centres to the Great Wall (see photo above) and the Shaolin temple. <br /><br /><b>BLOOM: Isn’t there a lot of stigma towards disability in China? <br /><br />Kevan Chandler: </b>Yes. People with disabilities are hidden away by their families or the system. You don’t see a lot of people with disabilities. We saw one lady in a wheelchair in the market, and otherwise never saw anyone with disabilities in our three weeks there. <br /><br />Something I was surprised by was that when we would walk through the market or the city, people—especially of the older generation—would stop and give us the thumbs up and shake the hand of whoever was carrying me. They seemed to have a lot of respect and appreciation for what the guys were doing. <br /><br />We knew there would be a language and some cultural barriers. But we hoped that the spectacle of one guy carrying around another guy would be a visual that would inspire and encourage people. <br /><br /><b>BLOOM: How often do your friends switch off with carrying you? <br /><br />Kevan Chandkler:</b> We try to do a 45-minute switch, that way no one gets completely worn out. Something really neat was that we had other people, outside of our team, carry me as well. At the care centres, a couple of the workers were big guys who said they’d like to help out, so they took turns when we were in the market. Our translator, who didn’t come to carry, also carried me as well. We had only brought three carriers, so it was cool to incorporate more people. <br /><br /><b>BLOOM: You have a non-profit called <a href="http://wecarrykevan.com/">We Carry Kevan</a>. What is the mission? <br /><br />Kevan Chandler:</b> Our mission is to redefine accessibility as a cooperative effort—people helping people, and getting involved with each other’s lives. Right now our main focus is implementing the backpack, and encouraging people who can, to use it. It will be available this summer and is a one-size that fits up to 70 lbs. <br /><br /><b>BLOOM: What does it cost? <br /><br />Kevan Chandler: </b>It’s US$375. It’s completely adjustable and versatile for different sizes and needs. For the past two years we’ve been developing it with Deuter. We‘ll work with a family to customize it to each individual. Managing that, and with my book coming out, has been a full-time job. <br /><b><br />BLOOM: What makes your travel unique is the participation of really close friends. How can that work for kids who don’t have friends? <br /><br />Kevan Chandler: </b>I talked to my mom about it recently, and she said when I was diagnosed she and my dad decided they would raise us as normal as possible (my sister also has spinal muscular atrophy). They knew that would take a lot more work, but they wanted us to be involved in the able-bodied community. <br /><br />What they ended up doing was that we were out in the world, and we also invited the world in. That introduced that idea of community. It normalized for our community the idea that my sister and I, we had needs, and people could help out. It taught us not just to ask, but to invite people into that. It also taught our immediate community how to respond. As I got older, it became more my responsibility. It’s going to be uncomfortable, but you have to put yourself out there. It’s worth a try. Everyone may not get it. But the people who do get it are going to be awesome. </span><br />
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<span style="font-family: "verdana" , sans-serif;"><i>You can follow Kevan at <a href="http://wecarrykevan.com/">We Carry Kevan</a>. The group is working on organizing international shipping for its adapted backpacks. If you have any questions, please e-mail at wecarrykevan@gmail.com</i>.<i> The photo below was taken at one of the care centres in China where kids got to try out the adapted backpack. Check out <a href="https://youtu.be/DE9nV9VK7Dw">Kevan's Ted Talk</a>.<br /></i></span><br />
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BLOOM - Parenting Kids With Disabilitieshttp://www.blogger.com/profile/06901482901008135659noreply@blogger.com0tag:blogger.com,1999:blog-447392662850613354.post-30396979369034092042019-05-21T11:20:00.000-04:002019-05-21T11:34:48.764-04:00'I'm trans because that's who I am'<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: "verdana" , sans-serif;">By Louise Kinross<br /><br /><i>Logan Wong is known for his stylish bow ties. But in this photo, he's </i></span><i style="font-family: verdana, sans-serif;">wearing a shirt with the colours of the transgender flag: blue and pink, the traditional colours for boys and girls, and white, representing people who are intersex, transitioning or a neutral or undefined gender. </i><i style="font-family: verdana, sans-serif;">Logan is a transgender man who has cerebral palsy and grew up receiving services here. He's also </i><i style="font-family: verdana, sans-serif;">the co-chair of Holland Bloorview’s youth advisory, and works as a host to inpatients in our teen lounge. He’s going into his fourth year of social work at Ryerson University. We talked about his experiences and how Holland Bloorview can better support young adults like him.</i><br />
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<span style="font-family: "verdana" , sans-serif;"><b>BLOOM: What does it mean to be transgender? <br /><br />Logan Wong: </b>It’s when the gender you’re assigned at birth doesn’t match with what you believe to be your gender. Trans is an umbrella. It can mean you’re a guy, you’re a woman, or you’re both. There are new labels coming up every day.<br /><br /><b>BLOOM: How did you recognize you were transgender? <br /><br />Logan Wong:</b> I came out publicly last September. But I’ve known I was trans since I was seven. When I was that age I presented as a male, and I was really self-conscious about my body. I don’t think anyone—including me—recognized it as being trans at the time. I thought I liked boy stuff, and I wouldn’t leave the house in a dress. <br /><br />I have two older brothers. We have a home video of my birthday party when my parents gave me a Barbie. I threw it on the floor and started playing with my brothers’ hot wheels. <br /><br />My parents recognized how terrible I felt about myself, and how much of a struggle it was for me. And my mom got better at buying gender neutral clothes and clothes that weren’t pink. <br /><br /><b>BLOOM: What’s been the greatest challenge? <br /><br />Logan Wong:</b> Definitely finding accessible and trans-friendly health-care, and my name change stuff and government forms. Changing everything from my name on my insurance to my name at school are examples. <br /> <br /> I’m lucky to have finally found a doctor that is really educated in both transgender stuff and disability—which is really rare. I go to Parkdale Community Health Centre, and I had to transfer my whole primary care over there to be able to access testosterone. Before that, when I saw my regular family doctor, they were going to refer me to a hormone specialist. But there was a year wait list. <br /><br /><b>BLOOM: What’s been the greatest joy? <br /><br />Logan Wong: </b>How much pride I have, and how much I can use my experience, both as trans and having a disability, as representation for both communities at the same time. I really appreciate that opportunity. <br /><br /><b>BLOOM: What advice would you give parents whose disabled child is questioning their gender? <br /><br />Logan Wong:</b> I would say listen to what they have to say about themselves. Don’t make assumptions about what they’re thinking. Let them express themselves the way they want to. <br /><br /><b>BLOOM: Did having a disability make it easier or harder to accept your transgender identity? <br /><br />Logan Wong:</b> In some aspects it made it easier. I’m in a wheelchair and no one expects me to stand up and pee. So I don’t have to worry about facing harassment in the bathroom. I usually use a single stall bathroom. <br /><br />Growing up, my life didn’t revolve around the fact that I had a disability. My parents believed that my life shouldn’t just be about therapy. That made me willing to explore other parts of my life and identity, so it made it easier for me to recognize who I am. <br /><br /><b>BLOOM: Is there anything about having a disability that made being transgender harder?<br /><br />Logan Wong:</b> Making people realize that I’m not trans because I have a disability, or because of other things that happened in my life. I’m not trans because I’m oppressed by other things, or because I’m attention-seeking. I’m trans because that’s who I am. <br /><b><br />BLOOM: How does the disability community view transgender people? <br /><br />Logan Wong:</b> I definitely find more community within the trans and queer community. I do associate with the disabled community, but I’ve found able-bodied friends who are trans and queer are way more accepting of my identity. I think it goes back to some people thinking that I’m trans because I want attention. <br /><br />I do feel I’m more welcomed in the trans and queer community. They don’t see my disability as a thing. It’s part of my identity, of course, but they don’t emphasize it as much as it’s focused on in the disability community. <br /><br />Do I necessarily tell new people with disabilities that I meet that I’m trans? Not necessarily. <br /><br /><b>BLOOM: What would you like our staff to know about how they can best work with youth who are transgender? <br /><br />Logan Wong:</b> Ask them what their name is, and what pronouns they use. It’s very simple. Recognize that the documents you get might not have the name that they prefer on it. Don’t take the paper as the most important thing. Value what they say. <br /><br /><b>BLOOM: Have you ever received health care that wasn’t respectful or affirming of who you are? <br /><br />Logan Wong:</b> I’ve only had one experience, and it was recent. My cerebral palsy specialist at an adult hospital was blatantly transphobic. <br /><br /><b>BLOOM: In what way? <br /><br />Logan Wong: </b>He refused to refer to me with my now legal name, because he knew me before. I’ve chosen to not go to that person since. I called and explained that I was transferring to another specialist, because I don’t want this happening to another person. <br /><b><br />BLOOM: What could we do at Holland Bloorview to better support youth who are gay, transgender or bisexual?<br /><br />Logan Wong:</b> I like the steps the equity, diversity and inclusion committee is taking. <br /><b><br />BLOOM: Are you on that committee? <br /><br />Logan Wong:</b> Yes. They’ve encouraged staff to put their pronouns in their e-mail signature, which is really important, and created gender-neutral bathrooms. Instead of using mom and dad, just say parents. We have to think about it, not only in terms of children and youth, but the parents who are potentially trans. <br /><br /><b>BLOOM: What about creating some kind of peer support here for clients who are transgender? <br /><br />Logan Wong:</b> I think support groups, with the right intention, can always be a good opportunity to express the values of Holland Bloorview. <br /><b><br />BLOOM: Why did you decide to be a youth leader? <br /><br />Logan Wong:</b> I decided to become a youth leader before I publicly transitioned. I wanted a platform to advocate for people with disabilities, and specifically youth voices. I feel we don’t hear enough from youth about their opinions on what’s happening in the disability community, or politics, or the world. <br /><br /><b>BLOOM: What are your hopes for the future? <br /><br />Logan Wong:</b> I’m hoping to be a social worker. I haven’t confirmed it yet, but I’m hoping my placement will be at the Ronald McDonald House. I’ve gained a lot of clinical experience in my work here, and I’d like to continue that in another space. <br /><br />After I graduate I’m thinking about master’s programs, both social work and women and gender studies. </span><br />
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<span style="font-family: "verdana" , sans-serif;"><i>In Toronto, there are lots of <a href="https://www.the519.org/programs/category/trans-specific">trans-specific supports</a> at The 519. </i></span></div>
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BLOOM - Parenting Kids With Disabilitieshttp://www.blogger.com/profile/06901482901008135659noreply@blogger.com0tag:blogger.com,1999:blog-447392662850613354.post-50668565371251989692019-05-17T12:29:00.000-04:002019-05-17T14:25:06.997-04:00In nursing 'everything good comes from the heart'<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: "verdana" , sans-serif;">By Louise Kinross</span><br />
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<span style="font-family: "verdana" , sans-serif;">Shevonne Thatham is a registered practical nurse at Holland Bloorview working with children who have complex disabilities and use ventilators to breathe. She just won the <a href="https://hollandbloorview.ca/programsandservices/programsservicesaz/nursing/awards/daisyaward">DAISY award</a>, which recognizes a nurse that uses a strengths-based approach and combines top-notch clinical skills with deep connections with children and families. “Families like my realness,” Shevonne says. “A lot of people say I’m the Oprah on the unit, because people open up to me. I’m able to make them feel welcome and warm.” </span></div>
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<span style="font-family: "verdana" , sans-serif;"><br /><b>BLOOM: How did you get into this field? </b><br /><br /><b>Shevonne Thatham: </b>I never had a thought about working in pediatrics until I did my consolidating year on a student placement here. I knew I wanted to be on a respiratory unit, and I landed here, and the kids just captured my heart. Often there weren’t parents at the bedside, and there was a sense of urgency, that these children needed care, love and compassion. This is my calling. <br /><b><br />BLOOM: How did you choose nursing? <br /><br />Shevonne Thatham:</b> I was inspired by my mom. My mom is a practical nurse working in geriatrics. I used to go with my dad to pick her up on evenings, and we would go a little early so she could introduce me to her clients. I was always that caring person that wanted to help out. I was a little kid listening to their stories about how they got there. That sparked a flame inside me that never faded. <br /><br /><b>BLOOM: What’s a typical day—or night—like for you? <br /><br />Shevonne Thatham: </b>I do rotating shifts. I like nights because you’re the nurse, the respiratory therapist and the doctor—you do it all. The clients I work with require total care. In the morning, we prepare their meds, administer their feeds, and get them up in their chairs. They may wear devices like ankle-foot orthoses. I’m their hands, their feet, their eyes, their ears. Then, I’m with a child for the day, whether they go to therapies, school or off-site. They’re complex, so I support any medical needs they have. I’m their medical parent. For children who have a tracheotomy, they may need a suction to maintain their airway. I ensure their [feeding] tubes are running. </span></div>
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<span style="font-family: "verdana" , sans-serif;"><br /><b>BLOOM: What is it like working with this population? <br /><br />Shevonne Thatham: </b>It’s about empowering the families and giving them that hope and courage that their child will make it home. Some of these kids were diagnosed at birth, so it was life changing for their parents. It’s giving them that hope that everything is okay, despite their differences. You can still have a life and a family.<br /><br /><b>BLOOM: You must develop very deep connections with these kids. <br /><br />Shevonne Thatham:</b> Yes. They can’t communicate with me, because many of them are non-verbal. But I know exactly what’s going on with them. Non-verbal communication is key, and learning to read them—whether it’s an elevated heart rate or a grimace in their face. <br /><br /><b>BLOOM: What’s most challenging about this work? <br /><br />Shevonne Thatham: </b>Advocating for someone who is non-verbal. Every child is different. We’re at the bedside and we’re the first level of contact with these kids. Sometimes it’s hard for physicians, who are more focused on the medical, to understand something may be about comfort. When I advocate, it’s not what I want, it’s what the client needs. <br /><br />Another challenge is that when the family comes to Holland Bloorview, the parents are in that grieving stage. They’re dealing with a lot of anger and emotions. With families, sometimes I need to be a social worker, which is not my field. I need to think about how I say what I need to say in the appropriate way, that is caring and compassionate as well. Sometimes it’s sitting with parents and if they’re crying, I’m crying. <br /><br /><b>BLOOM: What are the joys? <br /><br />Shevonne Thatham: </b>There’s so much. Doing what I love to do. Seeing a smile on a child’s face or parents saying thank you. Knowing that I’ve made a difference or that I’m helping to better their chances of going home quickly. Advocating. Teaching families and teaching clients who are able to do their own self-care. Aiding in their everyday life. <br /><b><br />BLOOM: What emotions come with the job? <br /><br />Shevonne Thatham:</b> Frustration. It’s hard to understand, sometimes, what is going on with a client. Happiness. Moments of happiness. Moments of anger, because why? You just think ‘Why is this happening to these families?’ Being able to be a person in their lives, so when the family comes back here later for respite, the child remembers you, and you know you left an imprint in their life. <br /><br /><b>BLOOM: How do you manage those emotions? <br /><br />Shevonne Thatham:</b> I’m a spiritual person, so I would pray for my families and for myself. I bring everything to God. I also use music, driving home, to debrief. <br /><b><br />BLOOM: What have you learned from families? <br /><br />Shevonne Thatham:</b> They’re taking on a new job that they’ve not signed up for, or gone to school for. And in the end, they’re able to be the parent, the nurse and the doctor for their own child. Families have taught me that they’re strong people.<br /><br /><b>BLOOM: If you had to give yourself advice on your first day, from where you sit now, what would you say? <br /><br />Shevonne Thatham:</b> Put your heart into it. Everything good comes from the heart. If this is where you want to be, show it, and it will manifest a beautiful outcome. <br /><br /><b>BLOOM: If you could change one thing about children’s rehab, what would it be? <br /><br />Shevonne Thatham:</b> I think we’re going in the right direction, and since I got here there are more opportunities for kids who have a trache to do normal daily activities. I’d like it if we had a really shallow end in our pool, because despite having a trache, a lot of our kids want to be in the pool. It would be great if we had some sort of protection for the trache, so that they could go in the water. </span></div>
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BLOOM - Parenting Kids With Disabilitieshttp://www.blogger.com/profile/06901482901008135659noreply@blogger.com0tag:blogger.com,1999:blog-447392662850613354.post-85991149115074175202019-05-16T16:19:00.000-04:002019-05-16T16:24:25.791-04:00Collective advocacy must replace mother-led campaigns<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: "verdana" , sans-serif;">By Louise Kinross<br /><br />A decade of activism by British mothers of children with disabilities hasn’t produced positive change in the lives of disabled people, write two researchers in a <a href="https://www.tandfonline.com/doi/full/10.1080/09687599.2019.1602509">fascinating article</a> this month in <i>Disability and Society</i>. The authors—Katherine Runswick-Cole and Sara Ryan (photo above)—are disability studies scholars and parents to children with intellectual disability. “Despite the efforts of countless mothers of disabled children, and others, over the last 10 years, the outlook remains bleak,” they write. “We live in a world now where our children with learning disabilities will die on average 23 to 29 years before their peers (NHS England 2017), startling evidence of the limits of advocacy for, with and by learning disabled people.”<br /> <br /> We <a href="https://bloom-parentingkidswithdisabilities.blogspot.com/2015/02/sons-death-sparks-search-for-justice.html">interviewed Sara</a> in 2015 about the preventable death of her son Connor Sparrowhawk, an 18-year-old with autism and seizures. In 2013, Connor drowned alone in a bath in a National Health Services treatment unit. The NHS trust that ran the unit initially attributed his death to natural causes, but his parents called for an independent investigation that found his death preventable. Last year, Southern Health in Britain was fined just over $1.8 million dollars for this preventable death. <br /><br />Sara and Katherine, who are at the University of Oxford and the University of Sheffield respectively, argue that campaigns based on mother advocacy have failed for generations. Yet every new generation, not looking back, insists they’re pioneers in the cause. The authors suggest we need to move away from mother advocacy—which is undermined by a culture of mother blame, focuses on individual families vs. systemic problems, and pits mothers of young children with disabilities against mothers of adult children—to a new collective activism that brings all sorts of people together.<br /><br /><b>BLOOM: You note that many parents of children with disabilities believe that the general public just doesn’t understand the discrimination their kids face, and that if only they were made aware, changes would occur. But you don’t buy into that. You say you’ve been doing this work for 10 years and conditions in the U.K. for people with disabilities have only gotten worse. </b><br /><b><br />Sara Ryan:</b> Yes. There was a good chunk of solid policy in the U.K. at the beginning of the 21st century that engaged with learning-disabled people as human beings who we need to value, and who have aspirations. That positive movement has come to nothing. Things have gone backwards. <br /><br />Ten years ago, we thought we were pioneers in raising awareness and we’d sort everything out. We didn’t realize the generations of parents and mothers who had done the same things we were doing. We disempowered the people who came before us. <br /><br /><b>BLOOM: You point to something I’m very aware of—which is a split between young parents of kids with disabilities and older parents of adult children, who have been advocating for a long time. I know when my son was young, I didn’t want to hear about the experiences of adults with disabilities because I wanted to focus on his unlimited potential. I wanted to believe we had the capacity to make big changes.<br /><br />Sara Ryan:</b> As young parents you’re totally fresh, and you think things won’t be as bad for your children. <br /><br /><b>BLOOM: In a way, you don’t want to hear about the real struggles of older parents. <br /><br />Sara Ryan:</b> I understand that. You’re facing something unexpected and unfamiliar, and you have a lot to grapple with. But it’s really unhelpful in terms of social movements and change if the movement is inherently fragmented when people break off when their children go into adult services. <br /><br /><b>BLOOM: It’s so short-sighted, to turn our backs on the families who have done the hard work before us. <br /><br />Sara Ryan: </b>It’s also sustained by big charities who almost 'groom' the younger parents to make them feel they’re pioneers in leading the way. These charities have been saying the same things for 40 years, and it’s not in their interest to say it hasn’t worked. They present their campaigns as something new for parents of young children, while erasing the work that’s been done in the past. <br /><br /><b>BLOOM: I guess promoting a campaign that focuses on young children—and the sense of possibility inherent in them—is more likely to be well received than one that focuses on the realities for adults. <br /><br />Sara Ryan: </b>Young children are cute. But there’s a change happening with young mothers today. There’s <a href="https://twitter.com/mariannesb37">one mother</a> on Twitter who posts a photo of her young son with Down syndrome beside the facts about the early death he faces. She wants people to think about that, and it’s really powerful. <br /><br /><b>BLOOM: You talk about mother blame in your article—whether we’re blamed for our child’s disability, or blamed for not doing enough or the right therapy, or blamed because our children are costly. How does mother blame influence the efficacy of social justice campaigns by mothers? <br /><br />Sara Ryan: </b>That’s an interesting question. In our original paper we were saying that mothering is an invisible endeavour, but by token of having a disabled child, your mothering becomes visible. You’re seen as a poor mother due to your child’s unruly behaviour. <br /><br />When we began our campaign <a href="http://justiceforlb.org/">#JusticeforLB</a> [LB stands for laughing boy, a name Sara used in her blog about Connor], there were attempts by the trust, the local authority and NHS England to blame me, or to cast me as an irrational mother, to diffuse the strength of our arguments. But what was unique about our campaign was that over time, the demand for answers became a collective endeavour by a diverse range of people. Most had never met us. That reduced the potency of the 'mother being the problem,' so our campaign was very effective. <br /><br /><b>BLOOM: You refer in your article to a new form of advocacy called unmothering. Can you explain? <br /><br />Sara Ryan:</b> It’s about loosening that expectation that the child and mother bond is somehow essential, and allowing other people to step up and be involved in a campaign—to take part and speak and act. If the campaign is just about a mother, it’s an individual focus, which is necessarily weaker. <br /><b><br />BLOOM: You write that unmothering doesn’t devalue mothering, but disrupts ‘the idea that the mother alone is responsible for raising children.’ How was the #JusticeforLB campaign an example of unmothering? <br /><br />Sara Ryan:</b> It was the collective approach of it. We ran a campaign within the campaign called 107 days of action, to mark every day Connor had been in the unit before he died. We asked people to adopt a day to fundraise for our legal fees, or to raise awareness. We had a teenager who canoed 100 km to the House of Commons with a photo of Connor on her back. We had a Brownie pack in New Zealand that drew pictures of buses, which Connor loved. We had people who did lectures or sports events in Connor’s name. People adopted a day to do cake sales. These activities had nothing to do with mothers, and in most cases they were undertaken by people who didn’t know Connor or our family. <br /><br /><b>BLOOM: How did you get people who weren’t personally invested in your family to participate? <br /><br />Sara Ryan:</b> I’d been writing <a href="http://mydaftlife.wordpress.com/">a blog</a> about Connor, and early on it was really funny stories about the hilarious things he did. By the time he died, so many people were reading the blog, which was anonymous at the time, that they felt they knew him. That made the impact of his death more powerful. He wasn’t a learning disabled person. He was a fully fleshed out member of our family, and he was very funny. The fact that he was a beautiful young man with funny stories was what took hold. <br /><b><br />BLOOM: Yet you note that storytelling by mothers hasn’t traditionally produced results. <br /><br />Sara Ryan:</b> I think stories are important, but I don’t think they make change. The Disabled Children’s Partnership recently launched a new campaign called <a href="https://disabledchildrenspartnership.org.uk/secret-life-of-us/">#TheSecretLifeOfUs</a> to raise awareness of the challenges faced by families. But the campaign is premised on the mistaken assumption that the lives of disabled children are hidden. <br /><b><br />BLOOM: Yes, you note that children being excluded from school and bullied, and the isolation and poverty of families, has been well documented. <br /><br />When Connor died, the NHS trust first blamed his death on him, saying he had died of natural causes. Then they shifted to criticizing you. <br /><br />Sara Ryan:</b> A day after Connor died, a document called a briefing on the mother’s blog was produced and circulated, which suggested that I might be troublesome because I’d written that Connor had had an earlier seizure. Blame is completely at the heart of it. The biggest example was before Connor’s inquest, our solicitor read transcripts of evidence given by staff. They said things like ‘My relationship with Dr. Ryan: I was very scared of her. She was unusual.’ <br /><br /><b>BLOOM: As opposed to staff testifying as to why it was that Connor ended up behind a closed door in a bath where he had a seizure? <br /><br />Sara Ryan:</b> I had said to staff ‘Connor is having seizures.’ It kept coming up in the inquest that the defence for each of the staff members was that the mother was so difficult it was impossible to provide good care to Connor. When Connor was in the unit I wouldn’t have dared to be angry, for fear of retribution. We were so worried about Connor. </span><br />
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<i><span style="font-family: "verdana" , sans-serif;">Read the <a href="http://www.bristol.ac.uk/sps/leder/resources/annual-reports/">annual reports</a> of the British Learning Disabilities Mortality Review.</span></i></div>
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BLOOM - Parenting Kids With Disabilitieshttp://www.blogger.com/profile/06901482901008135659noreply@blogger.com0tag:blogger.com,1999:blog-447392662850613354.post-59412859367821725362019-05-13T16:58:00.000-04:002019-05-13T18:55:54.523-04:00For many, Joanna is the face and voice of Holland Bloorview<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: "verdana" , sans-serif;">By Louise Kinross<br /><br />Joanna Miedzik is an institution at Holland Bloorview. She’s the bright smile that greets you at reception, and the kind voice when you call in with a problem. Joanna has an encyclopedic knowledge of the hospital, its staff and programs. She grew up here as a child receiving services in our spina bifida clinic. Today, parents regularly turn to her for advice on raising their child with a disability. Joanna has worked at Holland Bloorview for 20 years. As a receptionist, she’s our point person for families, staff and visitors who need information or help. <br /><br /><b>BLOOM: How did you get into this field? <br /><br />Joanna Miedzik:</b> I’ve been here all my life. I came to Bloorview when I was nine. My family originally lived in Poland, and then we travelled in Syria for a couple of years and lived in Damascus. Then we moved to Buffalo, where I had a lot of my surgeries at the Shriner’s Hospital. Some friends of my parents told them about the medical treatment I could get here at Bloorview, so my family moved here. <br /><br />My parents gave up living in their own country in order to give me the opportunity to live in Canada, where there are more opportunities for me to be who I am today.<br /><br />Bloorview has always been home for me. By working here I felt I could give back to everyone what they gave to me. I’ve had help from almost every department here, and every single person that was with me growing up has had an unbelievable impact on me and who I’ve become. <br /><br />I always wanted to work with children and be a helper. At one point I wanted to be a social worker, but that didn’t work out for me. There was no question when I was looking for work that this was the only place for me. <br /><br /><b>BLOOM: What is a typical day on reception like? <br /><br />Joanna Miedzik:</b> Very unpredictable! I open up shop in the morning and get reception prepared for the day. We have daily tasks we need to complete. The mornings are pretty hectic. We often have lots of students come in, and they need help in getting themselves settled for their parking. <br /> <br /> Then the calls start coming in. There’s a lot of action—people-wise and phone-wise. It’s a big juggling act most of the time. <br /> <br /> There’s a lot of multi-tasking, and being a detective to put information together to assist people. We have a lot of enquiries about Holland Bloorview. I have to be on top of it, and figure out who is the best person to help with a particular question. I need to focus on the roles that everyone plays at Holland Bloorview, and how I can redirect people. <br /><b><br />BLOOM: Being a former client must be a huge advantage. <br /><br />Joanna Miedzik: </b>Yes. To come into this role without that background would be extremely overwhelming. I’ve spent half of my life here. I’m 42 and I started when I was nine. Certain pieces of knowledge come naturally to me, because it was part of my everyday growing up. Sometimes I don’t even realize what I know. When I don’t have an answer, I call around and ask questions of my colleagues to put together the information. <br /><br /><b>BLOOM: What are the joys of the job? <br /><br />Joanna Miedzik:</b> To see everybody with a smile on their face in the morning. To see the children go by on their bicycles on their exercise routine. I love to have conversations with the parents. A lot of parents come to me to chat and vent, and have a human body to listen to them when they’re overwhelmed. <br /><br />I feel that is very special. I’m able to be on their level and have a conversation that’s not artificial or scripted. I’m giving them my heart and my soul. When I see the pain and the tears I can actually say ‘I’ve been there and I’ve cried, too, and I’ve had my frustrations.’ And we share our stories. I always try to turn their negatives into a positive. I always tell them that that they’re in good hands, and everything that’s possible will be done for their child here. <br /><br />It’s nice to know I can have true heart conversations with these families. I’ve almost fulfilled my dream of wanting to be a social worker—not on paper, but I get to sit on reception and be that helping hand in a different way. <br /><br /><b>BLOOM: What are the greatest challenges? <br /><br />Joanna Miedzik:</b> I’m the first person that people see, and sometimes I get the brunt of their frustration. Negative energy can surround me, and I have to remember to ground myself and not let it overwhelm me. <br /><br /><b>BLOOM: I guess whenever anyone—staff, family or visitor—has a problem, they call you! <br /><br />Joanna Miedzik: </b>There are so many people who are hurt and frazzled and angry and sad, and sometimes it gets dumped on me. I have to back up and say ‘this is not about me.’ I can’t take it personally. <br /><br /><b>BLOOM: What qualities does someone need in your role? <br /><br />Joanna Miedzik: </b>Patience, empathy and a positive attitude. You have to be good at abstract thinking for problem solving. Sometimes it’s like being a private detective, where you put the puzzle pieces together. <br /><br /><b>BLOOM: I think you probably have a unique window into hospital life from where you sit. <br /><br />Joanna Miedzik:</b> I definitely have a revolving door around me. Some people are waiting for a taxi, or a parent is waiting for their child to get out of therapy. They come to chat. You do hear about their pains and their thoughts and their frustrations and their fears. <br /><br />You also have the opportunity to share some pretty amazing moments. Like when you build a rapport with a mom over six months. And one day she comes downstairs to your desk, squealing with excitement, to show you her phone and a video of her son taking his first steps. And you cry together and hug. ‘I get it,’ I tell her. ‘I remember when I took my first step. I get it, and I’m thrilled for you.’ <br /><br />Sometimes an inpatient mom comes because she’s upset that her son’s stay has been extended for another six weeks. I tell them that an extension is progression, that the physicians see potential for more improvement. <br /><b><br />BLOOM: If you could change one thing about Holland Bloorview, what would it be? <br /><br />Joanna Miedzik:</b> It may not be realistic, but my wish for Holland Bloorview is to treat our clients longer. When I finished up here and was thrown into the real world, it was absolutely horrifying. I didn’t receive the help I needed. I was out there and I was lost and we had no support and no follow-ups. <br /> <br /> So it would be a dream for Holland Bloorview to take the children they’ve cared for all their life, and not give up on them at the age of 18. Extend the care into early adulthood to ensure clients are psychologically and physically safe, and know their routine, and know the doctors they have to see on a regular basis. <br /><b><br />BLOOM: If you could change one thing about children’s rehab, what would it be? <br /><br />Joanna Miedzik:</b> I think Holland Bloorview is doing a pretty amazing job as it is. When I was at Bloorview, we didn’t have many of the support groups for kids and siblings, and extra-curricular activities, that you have now. I think Holland Bloorview is heading in the right direction with those groups and sessions. <br /><br />I’d love to see more help for the parents. And I’d like the opportunities to be for families with all diagnoses, not just for a particular disability. Every disability is valuable, and deserves the same kind of attention. </span></div>
BLOOM - Parenting Kids With Disabilitieshttp://www.blogger.com/profile/06901482901008135659noreply@blogger.com2tag:blogger.com,1999:blog-447392662850613354.post-5929438848636979932019-05-07T15:05:00.002-04:002019-05-07T15:06:38.254-04:00Bobbi finds her dream job in health records<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: "verdana" , sans-serif;">By Louise Kinross<br /><br />Bobbi Champagne is a self-described nerd who loves technology and medicine. She came to Holland Bloorview as a George Brown health information management student in 2015, and was hired after graduating. Since then she’s moved through a number of roles to health records analyst. Last year Bobbi applied for No Boundaries funding and ran a highly successful parenting workshop on video gaming and safety. “I love video games, and I know a lot of parents don’t,” she says. “I felt I could give parents a really good insider perspective on what online gaming is, and how parents can get comfortable setting boundaries.” This interview is part of a series of candid interviews with staff about what it means to work in children's rehab.<br /><br /><b>BLOOM: How did you get into this field? <br /><br />Bobbi Champagne:</b> I was always really into medical science and computers. I’m a huge nerd. I’ve even built my own gaming computer. I thought I wanted to go into psychology but I’m not someone who enjoyed being in school a lot. I studied cognitive science at the University of Toronto. But I found it way too theoretical for me. The George Brown program was a happy medium: it was practical, involved technology and dealt with health information. <br /><br /><b>BLOOM: What is a typical day like here? <br /><br />Bobbi Champagne:</b> In my regular job I monitor all of the transcription workload, the patient reports that go to Connect2Care portal, and I answer questions from families who e-mail support questions. <br /><br /><b>BLOOM: What is it like to transcribe reports? <br /><br />Bobbi Champagne: </b>It’s getting to hear the doctors go through their cases and explain the situation. Every child’s situation is completely different. You never hear a report that’s the same, whether the child has autism or cerebral palsy. I think our doctors do a really good job of making it about the client’s adventure and journey through the system, vs. just the medical story. <br /><br />I’m also involved in medical coding on each inpatient that we submit to the Canadian Institute for Health Information. And I played a major role in our scanning project. We’re scanning all of our paper charts into our electronic health record, so it’s completely electronic. <br /><br /><b>BLOOM: What is your role in our upgrade to a more user-friendly electronic medical record? <br /><br />Bobbi Champagne: </b>I was seconded for a day and a half each week as the co-team lead for the health information team. We’re responsible for the build of the health information management application, medical coding, scanning and archiving and transcription. Meditech Expanse is a new system. It’s like we’re rebuilding in a new way. <br /><b><br />BLOOM: What are the joys of your job? <br /><br />Bobbi Champagne:</b> I definitely like working with technology every day and my job has gotten a lot more exciting being part of the Expanse project. I feel I’m able to make big decisions on how our new system will run and work, and the work flows for our department and for transcription. <br /><br />I’ve been lucky to have the opportunity to work on the Expanse project and in my day to day work I’ve become the tech support for our department. People in our department will come to me before they go to information systems. I like being able to help people. <br /><br />I ran into a mom in the elevator and she was crying and apologized to me. I ended up talking to her, and letting her vent a bit. Even though I’m not clinical, being able to reach out to families when I get a chance means a lot.<br /><b><br />Bobbi Champagne: What are the challenges? <br /><br />Bobbi Champagne: </b>The paper. Since I started our department’s goal is to be as paperless as possible and it can be really difficult to get everyone on board with that. Even for me, I prefer to write paper, handwritten notes. So to get everyone to shift to reading documents on their computer can be difficult. The transition from paper to electronic in health care is a difficult one. <br /><br /><b>BLOOM: What can help staff make the leap? <br /><br />Bobbi Champagne:</b> I think the demonstrations we’ve done in the cafeteria where we show how the system looks and works, and expose them to why it’s easier, helps. <br /><br /><b>BLOOM: What qualities does someone need to do your job well? <br /><br />Bobbi Champagne:</b> You need to have an interest in technology. For transcription, you need to be a quick typist. You need to multi-task, and you’d want to be interested in medical science. You have to have some level of medical and physiological knowledge to transcribe, and to notice when there’s a discrepancy between what’s dictated and what’s going on. <br /><br /><b>BLOOM: So you go back to doctors to clarify? <br /><br />Bobbi Champagne:</b> Yes. The full-time transcriptionists let me know if there are any discrepancies in the information, or if they can’t make words out. <br /><br /><b>BLOOM: What have you learned about families? <br /><br />Bobbi Champagne: </b>They’re very resilient. I don’t know if I could put myself in their shoes. Especially the inpatient families that are here every day, and their kids are going through really extreme, intense therapy. They have the resilience to come back every day and have faith that their child will do better. <br /><br /><b>BLOOM: Why did you decide to run the gaming workshop for parents? <br /><br />Bobbi Champagne: </b>When the No Boundaries funding came out, I had this idea that I wanted to get more involved with our families. Being in an admin role, I don’t get to help them directly. I have a specific knowledge set and interest in gaming, and I felt I could use it to inform families. The workshop was called <i>Gaming and Social Media Tips for Parents</i>.<br /> <br /> I talked about video games and online safety, and the social worker, Gabriella Carafa, talked about parenting strategies. The parents were amazing. They were super receptive and engaged and asked lots of questions. At the end, they thanked me and said they’d learned a lot and gained perspective on what kids can be exposed to online. I was extremely nervous to host it. But I think I did exactly what I was hoping to do, which was fulfilling. <br /><br /><b>BLOOM: If you could change one thing about Holland Bloorview, what would it be? <br /><br />Bobbi Champagne:</b> Improving the navigation of the health system. I know we already work hard towards that, but figuring out where to go and how to get help, and navigating the application forms for funding, can be very difficult—for us and the families. Even though we have a single-payer system, it can still be difficult to figure out how to get extra support, especially as children get older and transition into adulthood, or transition here from out of province or country.<br /> </span><br />
<span style="font-family: "verdana" , sans-serif;"><i>Got an idea for a staff member who would make a great interview? Message Louise at lkinross@hollandbloorview.ca. This interview was suggested by Sean Peacocke.</i></span></div>
BLOOM - Parenting Kids With Disabilitieshttp://www.blogger.com/profile/06901482901008135659noreply@blogger.com0tag:blogger.com,1999:blog-447392662850613354.post-54212875194028674282019-05-07T09:34:00.000-04:002019-05-07T17:42:21.783-04:00Payal sees children's rehab from a newcomer perspective<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: "verdana" , sans-serif;">By Louise Kinross<br /><br />Seven years ago, Payal Khazanchi and her family immigrated to Canada from Oman. At age five, Payal’s daughter Aakanksha was diagnosed with global developmental delay. Payal assumed they’d be connected with rehab services, and be able to meet other families like theirs.<br /><br />But it didn’t happen. <br /><br />“Because education and health are government-supported, I presumed if there was an issue with my daughter, the system would tell me where to go,” Payal says. “But instead of one single, straightforward path, the system is so fragmented that there are a million paths to reach what you need.” <br /><br />It took Payal years to find Holland Bloorview, and it was only due to a chance encounter at a baking class when an acquaintance mentioned the hospital. Before that, Payal had quit her job to take care of Aakanksha, who is now 12. She spent hours on public transit travelling to multiple spots all over the city for services like physio, dentistry, orthotics and optometry. <br /><br />Payal grew up in India before moving to Oman. She says Canadian health providers need to understand that disability is stigmatized in both countries, and in other areas in the region. </span><span style="font-family: "verdana" , sans-serif;">“Newcomers come with the mindset that disability is a taboo, and you shouldn't talk about it. They may be concerned that their child's disability will affect their legal status,</span><span style="font-family: "verdana" , sans-serif;"> such as permanent residency or Canadian citizenship. We didn’t have any family here and we didn’t know anyone in a similar situation.” </span><br />
<span style="font-family: "verdana" , sans-serif;"><br />No one helped Payal navigate the system, so she had to “start from scratch,” searching for resources online. <br /><br />“For the first three years, I didn’t know there was federal and provincial funding for families like ours.” For example, Payal’s daughter wears glasses that cost $750 a pair, but no one explained that a part of it could be covered under these programs. <br /><br />Once Aakanksha was seen by a developmental pediatrician at Holland Bloorview, she began receiving therapies and other services under one roof. “It saves me a lot of time running around as a parent. Holland Bloorview is like a one-stop for resources.” <br /><br />Payal says Holland Bloorview can better support newcomers by identifying them early on, and connecting them with a social worker and a family leader, a parent in a similar situation who volunteers at the hospital. <br /><br />“The social worker has the knowledge, awareness and resources to share with someone new. I only got a social worker after six years in the country. She showed me about 12 forms. In three years of searching online, I had found eight, and filled them in myself. Getting this information, and filling the paperwork out, is a challenge for newcomers. We also need respite, and we don’t know where to go or who to trust.” <br /><br />Payal says meeting Jean Hammond and Beth Dangerfield, parents who run our <a href="http://hollandbloorview.ca/clientfamilyresources/clientfamilycentredcare">family leadership program</a>, was life-changing. “It was wonderful to know that I’m not the only one struggling, and that I could talk with someone who would understand if I was overwhelmed or anxious. If I had been connected with a family leader earlier on, I wouldn’t have felt so lonely.” <br /><br />Now Payal is giving back as a family leader herself. “I want to be a voice for immigrants who were like me,” she says. “I want to be someone they can talk to, who can share what I missed out on when I was first here. I want them to feel that they're accepted and can gather more information—and that they're not the only one.” <br /><br />She’s doing a master’s in adult education and community development at the <a href="https://www.oise.utoronto.ca/oise/Home/">Ontario Institute for Studies in Education</a> at the University of Toronto. </span><span style="font-family: "verdana" , sans-serif;">“I'd like to help other immigrants come out of their shell and help their child feel comfortable in their own skin. I'd like to help newcomers navigate the system and share the knowledge I've gained over the years. If I can encourage someone to access supports, and change their mindset, based on my lived experience, I will have contributed my bit.</span><span style="font-family: "verdana" , sans-serif;">”</span><span style="font-family: "verdana" , sans-serif;"> </span><br />
<span style="font-family: "verdana" , sans-serif;"><br />Payal recently interviewed eight Holland Bloorview parents to get their feedback on a research idea she has where one child with a special talent will mentor another. “When we go to the hospital or school, the focus is on the child’s disability and what’s wrong. I want to change the lens from what’s wrong to what’s strong? If a child has some innate abilities and strengths, let’s focus on those. The parents I spoke with said they believe their children have abilities that can be built upon. They’d like to see their child sharing their skills and feeling good about themselves, as opposed to always being at the receiving end of a support person or therapist or care worker. They feel their children can not only receive learning, but impart it as well.”</span></div>
BLOOM - Parenting Kids With Disabilitieshttp://www.blogger.com/profile/06901482901008135659noreply@blogger.com2tag:blogger.com,1999:blog-447392662850613354.post-46126605773293584142019-04-30T18:38:00.000-04:002019-04-30T18:45:14.256-04:00Jess translates studies into words that families understand<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: "verdana" , sans-serif;">By Louise Kinross</span><br />
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<span style="font-family: "verdana" , sans-serif;">Jess Silver is passionate about health and how we translate research into words the average person can understand. She works as a research assistant in Holland Bloorview’s <a href="http://research.hollandbloorview.ca/ResearchCentresLabs/PRISMLab">Prism lab</a>, where one of her roles is to write and edit materials targeted to youth and families. We spoke about how her own experiences growing up with a disability inform her work. <br /><br /><b>BLOOM: How did you get into this field? <br /><br />Jess Silver: </b>My passion with medicine and health came out of my own experience growing up with cerebral palsy. I was always looking for other avenues to improve my own situation. I wanted to go to medical school, but I knew that would be challenging because of my physical limitations. <br /><br />I found out about a medical communications program at the University of Chicago on how to create content that will be easily understood by the general public. I graduated from that program, and now in the work I’m doing, I feel I have a responsibility to help other patients and their families understand clinically what they’re going through. I’ve always been looking for innovative perspectives and solutions that can help me and benefit other people. <br /><br /><b>BLOOM: What is a typical day like for you? <br /><br />Jess Silver: </b>I may be editing or writing materials, or scoping out medical databases on a particular topic. <br /><br /><b>BLOOM: What’s an example? <br /><br />Jess Silver:</b> Right now I’m working on a project to see whether meditation can benefit a child using a brain-controlled interface to communicate. A lot of the work we do in the Prism lab involves developing technology that allows children who are non-verbal to communicate. <br /><br />In general, I look at how to edit syntax and grammar and language to make it concise and understandable for the families we’re working with today. <br /><br />One of my most interesting projects to date was working on an article about Holland Bloorview’s family engagement program in research. I was writing about what the family engagement program does at Holland Bloorview, but also including my own informed perspective as a patient. <br /><br /><b>BLOOM: Did you come to Holland Bloorview as a child? <br /><br />Jess Silver: </b>Yes. I went there mainly for physical therapy. I did physio and the Fit and Flex exercise program. I also saw Dr. Wedge for pain, and when I was older I saw Dr. Fehlings. <br /><br /><b>BLOOM: Did you feel you got the services that you needed? <br /><br />Jess Silver: </b>Yes. I felt the resources were there. But as a family, we were always looking for more. We believe in Eastern medicine, and we were always looking for alternative approaches to compliment the conventional ones. <br /><br /><b>BLOOM: Was it challenging for you to move to adult care? <br /><br />Jess Silver:</b> There were gaps. My parents and I had to do everything on our own, in terms of finding who was going to help me, and what was out there to benefit me. We did receive services through the transition team here, but when I went to university, I found all of the advocacy, and figuring out how everything would work, and how I’d be integrated, fell to me. I felt like I was well prepared, but it I still found it incredibly challenging. <br /><br />I did my undergrad at Glendon College, and I was the only one in a wheelchair at my campus. I had to explain to everyone that these are my challenges, this is what I need assistance with, and this is how we can work together. Then it was trying to get people to realize that although I have this challenge, it doesn’t mean I’m so different from you. I’m here to get my education. <br /><br /><b>BLOOM: What is the greatest challenge of your work with the Prism lab? <br /><br />Jess Silver: </b>The most challenging thing is not having an engineering background, and having to understand the terminology and the workings of devices that are created in the lab. You need to understand protocols for how to develop materials that are digestible for patients, but you also need to understand yourself how this device works and is constructed. Most of the other staff are engineers. <br /><br /><b>BLOOM: I’ve always had a pet peeve with academic language. I wish we could see lay language in journals. <br /><br />Jess Silver: </b>It does make things more difficult. What I find so rewarding now is being able to understand that language and, because of my background, knowing how to present it in a way that everyone will understand. When I was a kid and didn’t understand, I'd say ‘Whoa, what did that physician or specialist just say?’ But now I know what they said and it’s rewarding to be able to translate it. <br /><br /><b>BLOOM: You mentioned that you work remotely? <br /><br />Jess Silver: </b>Yes. I live in Thornhill and it was difficult for me to commute every day. Also, because of my physical needs, I need assistance from someone for my personal needs. Working remotely allows me to do what I have to do in order to have my quality of life, but still work. <br /> <br /> One thing I do find challenging is not being able to be at every meeting or event. But the team is very open to it and accepting. It’s just my responsibility to remind them that I have to be on the meeting with Zoom, or I need to access certain materials. <br /><br /><b>BLOOM: What’s the greatest joy of your job? <br /><br />Jess Silver:</b> It’s to know that I went from being a patient, and somebody who lives the experiences that many of our kids do, to working as part of the hospital. I can speak to many of our clients’ challenges through my own experiences, and am able to write in a way that can help a family understand a condition or be able to find the care or resources they need. <br /><br />I also run my own non-profit for adapted fitness and sports called <a href="https://www.flexforaccess.ca/">Flex for Access</a>. <br /><br /><b>BLOOM: How does that work? <br /><br />Jess Silver: </b>It creates awareness and raises funds to facilitate adaptive training sessions for individuals who have physical challenges. So we would fund a person’s training, and connect them with a gym or studio that can do it. <br /><br /><b>BLOOM: I notice you use the word challenge and not disability. <br /><br />Jess Silver:</b> Yes. I feel that everyone has some kind of challenge, on some level, and mine is just more visible because I use a wheelchair. I never let my disability get in the way of things that I do and pursue. Just this weekend I went indoor skydiving. Through my job at Holland Bloorview, and running my own non-profit, I feel I’m an agent of change. <br /><br /><b>BLOOM: If you could change one thing about children’s rehab—or research into it—what would it be? <br /><br />Jess Silver: </b>That’s a good, but difficult, question to answer, because there are many things. I’d encourage people, if they’re given one diagnosis, or one option for rehab, or one way of thinking about a diagnosis, try not to be boxed into that. Okay, yes, this is what it is. But seek other options. <br /> <br /> If I could change something in research, it would be to bring a more holistic perspective to the interventions offered as possibly being helpful. For example, the article I mentioned looking at how meditation can or can’t help kids communicate. </span></div>
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BLOOM - Parenting Kids With Disabilitieshttp://www.blogger.com/profile/06901482901008135659noreply@blogger.com2tag:blogger.com,1999:blog-447392662850613354.post-62363642500781546922019-04-25T09:40:00.000-04:002019-04-25T11:23:16.488-04:00A front pack takes Louise where she wants to go<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: "verdana" , sans-serif;">By Louise Kinross</span><br />
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<span style="font-family: "verdana" , sans-serif;"><br /><span style="font-family: "verdana" , sans-serif;">Louise Sertsis never saw herself as an entrepreneur. But that was before she was diagnosed with <a href="https://mssociety.ca/about-ms/what-is-ms">multiple sclerosis</a>, and began using a wheelchair. <br /><br />It bothered her that to carry a purse or bag she had to hang it on the back of her wheelchair, out of sight, and ask her husband—or a friend or stranger—to pass it to her. <br /><br />“I felt very dependent on others,” says the Whitby, Ont. resident. “It gave me the idea of redesigning a knapsack that attaches to the front of the user, to promote independence and safety and the feeling that I can do this myself.” <br /><br />For the last couple of years, Louise has developed prototypes of what she calls the Handi Pac, which is two bags in one, separated by magnets. She started a business, called <a href="https://advancedfreedom.com/">Advanced Freedom</a>. Next month, she's launching a Kickstarter campaign to fund production of the first 300 bags.</span></span></div>
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<span style="font-family: "verdana" , sans-serif;"><br /> One part of the Handi Pac sits on your lap and is attached with a waistband secured behind your back with magnets, Louise says. “You’d put anything you’d normally carry in a purse on a daily basis in it”—like a wallet, keys, tablet, phone and sunglasses. “It’s attached to you, so there’s no concern about the bag falling off when you go over a bump. That’s what used to happen, when I placed my purse on my lap. And because the bag is attached, someone can’t take it from you.” <br /><br />The second part is worn from your knee to the top of your foot. It carries 15 lbs—the equivalent of a carry-on bag at the airport—and is the largest wheelchair bag on the market, Louise says. It attaches to the users’ calves with a magnetic system. “It’s great if you’re travelling, or going to school or going to the gym.” </span><br />
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<span style="font-family: "verdana" , sans-serif;">The pack is made of water-resistant, durable cordura nylon. The large bag sits on your feet, so if carrying a heavy load, you may need to take a break.<br /><br />Louise says she knew nothing about business—she studied science and psychology at school. “I had to learn everything from the ground up. I’m a sole proprietor.” <br /><br />Online, she made a chance contact with a manufacturer of traditional backpacks that are sold in stores like MEC. “When I told him about my idea, he thought it was amazing,” she says. “I was missing the business side, and he mentored me. He’s made all of my prototypes.” </span></div>
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<span style="font-family: "verdana" , sans-serif;"><br />The current design is sized for an adult, but Louise says a child-sized version is in the future. <br /><br />Louise says the first time she tried a prototype she “jumped for joy. I was ecstatic because it worked so well for me that I knew it could help a lot of people. It was so gratifying to see my solution in physical form.” <br /><br />Louise plans to sell her bags internationally, and finds herself on social media at all times of the day and night, answering questions from prospective customers. </span><br />
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<span style="font-family: "verdana" , sans-serif;"><i>Check out <a href="https://youtu.be/8WN5EsgrYQk">this video</a> of Louise demonstrating how to use the Handi Pac. You can find more information on her <a href="http://www.advancedfreedom.com/">website</a>, or follow her <a href="https://www.facebook.com/advancedfreedom/">on Facebook</a>.</i></span><br />
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BLOOM - Parenting Kids With Disabilitieshttp://www.blogger.com/profile/06901482901008135659noreply@blogger.com1