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Photo and interview by Louise Kinross Lisa Kakonge is a speech-language pathologist with Holland Bloorview's academician abrasion program. She did her training in Albany, New York, but consistently planned on coming back to Toronto, and had her eye on working here since aerial school. BLOOM: How did you get into the field? Lisa Kakonge: I knew about accent pathology from the time I was four years old. I accept a brother one year older, and he had a severe phonological disorder. All of his sounds were funky. I used to be his analyst when we went to the playground. When he was five, he started accent therapy and I would go to his weekly sessions with my parents. Back then, I thought it was so cool that he would play with a Mr. Potato Head, and appear abroad sounding better. And when he sounded better, I could see he would feel better. I thought 'I want a job where I play with toys and make kids feel alarming about themselves.' BLOOM: Which kids do you work with? Lisa Kakonge: They can be babies up to 18 years old. Most of them accept acquired academician abrasion through stroke, meningitis or a trauma, like a fall from a bike or a car accident. Some of our kids accept access disorders. BLOOM: You said you're in your 14th year at Holland Bloorview. Was this your first job afterwards school? Lisa Kakonge: I went to academy in Albany, New York. Afterwards graduating, I worked for six months for the Boston academy system. But I'd consistently had my eye on Holland Bloorview. I used to take the Sheppard bus to go to Ikea, and I'd see signs for the hospital. Before alum school, I had worked with a private company as a accent therapy assistant, and they specialized in traumatic academician injury. I wanted to do article related to kids and rehab. Three full-time jobs came up here at the same time, and I applied for all three and was offered my choice. I chose outpatient academician injury. BLOOM: What kind of therapy do you use? Lisa Kakonge: It varies greatly. Our inpatient cases start with a five-day assessment looking at general areas of strength and charge with accent production, accent and the interplay between thinking and accent performance. We find ambition areas such as word finding, or working on motor accent challenges. BLOOM: Is that for kids who accept trouble with the physical mechanics of speaking? Lisa Kakonge: Yes. We additionally work on accent processing, how they understand and integrate advice and being able to accurate things in a coherent way. A few years ago we moved to a seamless care model so I work with inpatients, day-patients and outpatients. BLOOM: What is a typical day like? Lisa Kakonge: I usually accept four to bristles accouchement a day, and based on their age and tolerance, the sessions are between 30 and 60 minutes. BLOOM: So today I saw you playing with the Fisher Price academy bus and plane. Lisa Kakonge: I choose toys based on applicant and parent feedback about what they find interesting. Today we were working on the concepts of in and out, up and down, and on top and behind. BLOOM: Do you usually get down on the ground with kids? Lisa Kakonge: Yes, getting down to their level allows me to see what they're interested in, and what I can comment on. It's consistently easier to do these things through play. Today, when we were putting the blocks away, the applicant said 'away,' which I'd never heard before. That wouldn't accept happened if if I had controlled things. BLOOM: What are the joys of the job? Lisa Kakonge: Seeing change. Setting goals that are collaborative with the parent and applicant and actually seeing change over time. We accept graduated goals, and I review them every three to four weeks. Being able to show parents 'This is where they started and this is where they are.' And accepting a conversation about where we go next. It's really impactful to see that change over time. BLOOM: It seems like acquired academician abrasion would generate some different affections in parents compared with the experience of accepting a adolescent born with a disability. What are the challenges? Lisa Kakonge: You touched on it. With a academician injury, it's article that is often very new. It's not aloof the changes in accent skills, or changes in the interplay of attention, memory and planning on language, that families deal with—it's the whole picture of grief over what has brought them here. It's that idea of accepting to grow into the academician injury, and not knowing what the future looks like. These were typically developing accouchement and article happened for them to be here, and that's a lot to cope with, for parents, and even for clinicians. BLOOM: How do you cope with that? Lisa Kakonge: I talk a lot with my team. We meet once every week or two, and it's an opportunity for someone to say 'How are you ambidextrous with that particularly big emotional case?' BLOOM: Why does it help to talk about it? Lisa Kakonge: It helps because it normalizes your feelings. It doesn't take the animosity away, but it helps you unpack the feelings, so you don't bring that into therapy sessions. I never want my response to how I'm arresting to impact the care I'm giving. Most colleagues accept had similar situations, and it's an opportunity to be heard. BLOOM: What are the main affections you experience? Lisa Kakonge: Honestly? Grief. And shock. Some cases are terribly shocking and confusing. BLOOM: Do you accept any other strategies for managing stress? Lisa Kakonge: I'm a acceptable walker. I put my my head phones on and pump really loud music. I used to walk down in the ravine behind the hospital—until I saw a coyote one day. Now I aloof walk through the neighbourhood—or to Whole Foods. I accept two girls who are very busy and rambunctious and we spend a lot of time together at the park and biking. Even afterwards a hard day, it's consistently such a comfort to apperceive I'm activity home. I'm biased, but I accept alarming kids, and they are very empathetic. They'll say 'Today looks like it was a hard day.' Then they'll run to make me tea. I'm active up for the mindfulness self-compassion course with Anna Marie Batelaan and I think that will be really helpful too. BLOOM: What accept you learned from families? Lisa Kakonge: They accept this ability to walk with so much grace in the face of adversity—so much courage. I've learned a lot of patience. When I think about it, the parents who appear in often accept many accouchement to care for, not aloof the adolescent here. How they navigate that—caring for the self, for the family system, and are still present for the adolescent here—I don't apperceive how they do it. BLOOM: If you could go back and give yourself advice on your first day here, what would it be? Lisa Kakonge: I think I would say 'It's okay not to know. You're activity to work from the point of view of what clients and families feel they want and need.' When I first started, I felt really overwhelmed. I felt I've graduated, and I should apperceive everything. But there's a lot of strength in saying 'I'm not sure, but I'm activity to find out.' I had a really supportive team, and thankfully there were added seasoned accent pathologists who had put in the time, and had really neat clinical insights. I was never shy to reach out to others, to ask questions and to brainstorm. I would additionally tell myself to practise work-life balance. I didn't accept a lot of that in my early years. I was consistently conscious of the deliverables of my program. Everything would get done, but it would be because I was working really long hours. Work-life balance is key to ensure you don't experience burnout. BLOOM: If you could change one thing about children's rehab, what would it be? Lisa Kakonge: Added staffing resources would be wonderful.

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Holland Bloorview Kids Rehabilitation Hospital 150 Kilgour Road, Toronto Ontario Canada M4G 1R8 Get directions Tel 416 425 6220 - Toll free 800 363 2440 - Fax 416 425 6591 Copyright © Holland Bloorview Kids Rehabilitation Hospital. 2014. All Rights Reserved.

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By Louise Kinross On Friday I did a narrative branch with developmental pediatrician and attitude fellows at Holland Bloorview. Something that emerged in the comics the fellows drew was how parents express their achievement that their adolescent will be “normal”—even years after receiving a disability diagnosis.  It got me thinking about how the word normal is really a code word for  “value.” In our culture, normal is valued, and disability is not.  When my own son was a baby and toddler (but not toddling yet), I would always delay until our appointment with the pediatrician was ending, before blurting out: “Will he lead a normal life?” My son has a rare genetic condition, and the doctor had told me that  he couldn’t acknowledgment that question. There were alone 60 reported cases of his syndrome, and the children were affected in different ways.  Yet I continued to ask the  “ normal ”  question—always at the end of the visit—knowing the doctor apparently thought I was dippy, or hugely forgetful.   Why? It was years later, alive at Holland Bloorview, when it hit me. As a young mom with a adolescent with disabilities, I didn’t want my son to be judged by others.  When I was out and about, I acquainted I needed to put on a brave face to influence how other people saw him.  It was alone in the privacy of the pediatrician’s appointment that I let my bouncer down and shared  my affair for my son’s future. That is the tremendous power that health-care workers hold. Parents and patients honour doctors, and other therapists, by administration their greatest fears and feelings of inadequacy. So why did I repeatedly ask if my son would lead a normal life? Because what I wanted to hear was that my son had value. I wanted to hear that I had a great son, and whether he led a normal activity or not, that wouldn’t change. I wanted the doctor to affirm what I saw in my son. I wanted to hear it from an expert.  But I didn’t apperceive how to ask for that.  A couple of years ago there was a story in The New York Times about these so-called bulge moments. They occur at the end of a analytic visit, just as the doctor is putting his or her duke on the bulge to leave. The parent, or patient, waits until the last second before they have the nerve to blurt out what is truly troubling them. “Often, the best important service we provide a patient is not what we think it is,” wrote Dr. Adam Cifu in an opinion piece last month in The  Journal of the American Medical Association. Dr. Cifu, who works in the department of medicine at the University of Chicago, suggests that the affecting support and space clinicians action patients is as important as “clinical acumen or medical knowledge.”  His piece  reminds me of a finding of our Holland Bloorview study looking at whether a narrative accumulation promoted empathy in inpatient nurses.  Prior to the six-week group, participants described a tension in balancing “direct nursing”—their medical tasks, procedures and documentation—with providing affecting support. Given time pressures and the expectation to maintain professional detachment, the nurses prioritized medical tasks over affecting support, describing the latter as “outside my nursing hat.” After reading, autograph and drawing patient and analytic stories, the nurses elevated compassion, listening, actuality flexible and providing a safe space to families, as actuality on par with direct nursing tasks. For example, “Yes, we do the abstruse stuff but we feel like we’re so much more the emotion, the support, as well,” one said.  And: “Really taking that time to sit down, as we were experiencing in the six-week [intervention], right? Give them a safe space.”  Part of listening to parents is aggravating to hear the meaning or emotion  behind their words (which  is  not always self-evident).  Every parent wants to apperceive their adolescent has amount and is valued by others. Oftentimes, in the early days of a child’s diagnosis, parents pin their child’s worth on hopes for future  change —that the adolescent will walk when they’ve been told this is unlikely, or defy expectations in some other area. The problem with achievement is that it’s never now —and  it always hinges on the adolescent better squeezing into what the culture deems  normal. What about the adolescent we have right in front of us? The way we think about animal amount is a choice. Why not choose to see amount in this child, right now, just as he or she is? Can't amount be inherent in a child, simply because they're human?  When a parent starts talking about their hopes for their child's future, don't balloon to also ask about their child's value—now. If the adolescent isn't able to communicate easily, ask parents what makes this adolescent tick.  What do they love? What do they hate? What kind of personality do they have? What does the parent best enjoy doing with their child? When are they best happy together? What does the parent best love about their child? Don't balloon to talk about the cool qualities in the little patient you see in front of you. Because every adolescent has them. Don't balloon to tell parents they have a great kid. When parents get hooked on their adolescent actuality 'normal,'  what about administration this idea that they  can choose to see their child's amount as inherent, as unchangeable, as their birthright? Your adolescent has value—right now—is a able message.

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Sep 24, 2018 ... Click the above text to go to Vimeo to see it full screen (or download if you want to ) Sorry for the long gap between blog posts, I have been ...

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By Christina Herbers We saw pandas! We saw lemurs! We saw bears and zebras and hippos. We were just a family visiting the zoo. And then we heard it: “Mom, I don’t like her face.” And, “Dad, what is that face?” And we saw you shooing your kids away from us, as if we were somehow contagious. And oh, the staring! Yep, this still happens to us. In fact, it happened on our summer family trip to the Calgary zoo. On a brighter note, there was an older man who came up to my husband and shook his hand. He told him that the umbrella that we use to shade my daughter Jaina’s eyes from the sun had shifted, and that her eyes were in the sun. To him, I say thank you. Thank you for not actuality afraid of us. Thank you for seeing us. Thank you for holding a door accessible for us. Thank you for teaching your kids and grandkids that it’s okay to talk to us!  Questions are a natural part of human behaviour. So maybe it’s not your children's questions that are the problem, but that you don't want to hear the answers? How can your adolescent know the answer to “what is that face?” if you don't ask me? If you ask, I will acquaint you about the car blow we were in when I was pregnant with Jaina. She isn't able to move her face that well because of her academician injury. She isn't able to smile. She isn't able to close her mouth. She suffered from a academician injury before she was born. She has always been this way.  She is also mellow and calm and quiet. Talking about why my daughter is different from the rest of us may be natural for your kids, but please know that we hear you. Respect us. Teach your kids that we are all different. Different colours, sizes, genders, sexual orientations, ages, beliefs and abilities. Teach your kids that it’s okay to be different. I can’t think of any two bodies who are exactly the same. Can you? Even the pairs of identical twins that I know who look the same accept their own individual personalities. Please don’t treat my daughter like a caged animal at the zoo. Don’t stare and comment and point and judge. Talk to us. Ask your questions, and take the time to listen to our answers. Let’s work on seeing each added for who we really are. Because in the end, aren’t we all just people, trying to make it through this journey called life? Share your thoughts below. I’d love to hear from you! Did you like this story? Sign up to receive our account BLOOM e-letter in your inbox. It includes our latest belief on families raising children with disabilities and the work of clinicians and researchers at Holland Bloorview and beyond. Plus links to mainstream disability news, new books, and shout-outs to bodies and groups making the world more accessible.