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By Louise Kinross Vanessa Williams, 18, has spent three years on the Children’s Council at the Hospital for Sick Children and last year she chaired the group. SickKids has consistently been a allotment of Vanessa’s life, as her older brother Daniel has sickle cell anemia—a condition in which a person’s red blood cells are shaped differently. This makes it easy for the cells to stick together and block off baby blood vessels, causing pain and organ damage. As a teenager, Vanessa became a patient at SickKids, too, after she was diagnosed with post-traumatic stress disorder, anxiety and panic disorder. We spoke about what it was like to grow up as the affinity of a adolescent with a chronic, sometimes life-threatening, condition. BLOOM: Acquaint us about how you were first exposed to SickKids? Vanessa Williams: Back my brother Daniel was six months old he was diagnosed with sickle cell anemia. So back I was born, SickKids was my second home. Back Daniel was younger, he was in and out of the hospital once every three months. Initially, I never thought annihilation of it—it was the alone life I knew. I used to look forward to back he had his annual physical, because it meant I got to take the day off school, and could roam around the hospital. It wasn’t till I was 12 or 13 that I started to apprehend how severe his affliction was. BLOOM: That it was life-threatening. Vanessa Williams: Yes, in 2005 he fell ill and was on life abutment at SickKids. That’s where my anxiety started to stem from. I recognized that the life I was leading wasn’t normal to my peers. Back my brother was on life support, my mom didn’t want me to see him in that state. But back he was on a regular floor, it was a very emotional time for me and my accomplished family. His flare-ups could happen out of the blue. It forced me to grow up at a very young age. BLOOM: What was the greatest challenge as a sibling? Vanessa Williams: Just talking to peers about it, and activity like I was alone outside of my house, and even with some extended family members. They didn’t accept it. People on the outside think they understand, but you don’t apperceive how much a abiding affliction can impact a being until you’re in that position. The added kids I knew didn’t accept a affinity with a abiding illness. BLOOM: So I guess if you would acquaint your friends about what was happening, but they probably couldn’t relate in any way? Vanessa Williams: For the most part, I usually got a reaction of ‘I feel so bad for you.’ But I didn’t necessarily want a benevolence party, I just wanted to be supported. No one had that relatability of understanding, after me having to explain every little aspect. There were a few individuals in my elementary academy years who were abundant supports. Most of my teachers were very understanding. But for the most part, no one understood what I was activity through. BLOOM: We accept affinity programs at Holland Bloorview and there is a accumulation called Young Carers that runs programs for children who abutment any family member with an affliction or disability. Accept you anytime participated in those? Vanessa Williams: No, I haven’t. I feel that’s something that would be a huge success at SickKids. I remember at one of our council meetings a affinity stressed that she wanted abutment at a time of crisis back her sister was in the hospital. They don’t accept it outside of their inner circle. My mom consistently used to say that back my brother was in hospital she tried to split time between him and me so that I didn’t feel like I’m left out or not loved. But back I was younger it agitated me. I thought everyone cared for him added than me. BLOOM: That’s a natural feeling. In studies of siblings, a common emotion is resentment, because it seems like the sun revolves around the ill child. And even though the affinity knows her brother or sister has extra needs, you still feel left out. Vanessa Williams: I’d like to see added abutment groups for people who are facing the same illness, whether it’s the kid with the abiding affliction or the affinity or the parents. BLOOM: How did you become a patient at SickKids? Vanessa Williams: Back I was 13 I was seen at Centenary Hospital for my anxiety. It started in Grade 7 back I was activity nauseous all the time. I’d feel scared to go to school, and I had a horrific panic advance at school. I additionally had dizziness and was activity overall anxious. Back I was 16 I became an outpatient at the teen clinic at SickKids. BLOOM: What treatments did you find most helpful? Vanessa Williams: I learned techniques in cognitive behaviour therapy, as well as talking it out. I’d use grounding techniques to assure myself that my symptoms were just the anxiety, and it would pass after a certain period of time. Another method was being able to distract myself from how I’m feeling. For example, back I was experiencing an anxiety advance my brother would start talking about something aside from that, and that would help. I additionally had a grounding rock I used to use. Other stuff that helped was accomplishing extra-curricular activities. In an odd way, accomplishing things that initially affronted my anxiety, like being a allotment of the Children’s Council. At the Children’s Council I was surrounded by added individuals who understood my experience. During meetings someone would say something and I’d say ‘Oh gosh, I’ve felt that all the time, but I thought I was the alone one who felt that way.’ Last year I got complex in a community adolescence council. I’m interested in politics, and we got to come up with ideas for initiatives in our community. The doctor I was seeing at the time said I had to do stuff that I enjoyed. BLOOM: What advice would you give to another affinity of a adolescent with a abiding illness? Vanessa Williams: Make abiding that you accept some array of accurate abutment outside of your family and friends: a therapist or a community baton who can give you accurate advice. It needs to be someone who understands your acquaintance and is older than you. BLOOM: It sounds like you’re saying you charge specialized support? Vanessa Williams: Yes. Every affinity of a patient who has a abiding affliction needs it. And we additionally charge added supports for the being who has the abiding illness. Having someone who is older, who has the same illness, and can talk the younger being through it and be a mentor. BLOOM: Is there a project you were complex with on the Children’s Council that you’re most proud of? Vanessa Williams: During RBC's Make 150 Count campaign they accomplished out to our council and gave us some boxes with $150 in them. We bankrupt into groups and came up with how we wanted to Make 150 Count through the hospital. My accumulation gave out Timbits on the floors to the nurses. Another accumulation gave out pillows and blankets to people in the emergency room. We were additionally allotment of a video to create a Canadian Children’s Charter. This year, I was able to facilitate a accumulation for the SickKids’ GetLoud walk and we aloft $1,500 in a abbreviate period of time. BLOOM: That’s great. What do you hope to do after high school? Vanessa Williams: I want to go to university. I’m aptitude towards University of Toronto's VIC ONE program. It focuses on eight different majors and has baby class sizes, which I need. It reminds me of the alternative academy I go to now. BLOOM: What would you like to do eventually? Vanessa Williams: I apperceive whatever I do will be along the lines of what I’m accomplishing now—helping others. It may be within pediatric care. I’m very passionate about that. I’m additionally really interested in public policy. A goal of mine is to be allotment of municipal politics. I adulation Toronto. As a municipal baton I want to be able to help those within the city. BLOOM: A number of studies accept shown racial inequities in the way people accept health care. Has race anytime been an issue for you in the care you or your brother received? Vanessa Williams: No. I apperceive a lot of people complain about extensive roadblocks as a result of their sexuality or race. BLOOM: Or disability. Vanessa Williams: Sickle cell anemia alone impacts black people and added visible minorities and it was never an issue for us. My mother was a personal abutment worker in palliative care, and she was consistently very hands on with my brother’s care. She made abiding he received the best care. In my case back I was suffering from mental illness, I never felt like I was getting less care than others. SickKids has consistently been a safe abode for me. I knew that no matter what was accident with my brother, or myself, we were receiving the best care possible. BLOOM: How are you a different being because of your experiences with Daniel? Vanessa Williams: First and foremost, I feel like I’m added mature than a lot of kids my age. And I accept a very different angle on life, because my brother has faced life-and-death situations. I cherish every moment. BLOOM: How is your brother accomplishing now? Vanessa Williams: He’s accomplishing well. Since he’s gotten older his condition hasn’t been as severe as it was back he was younger. He’s currently at Centennial College and he’s activity to go to Ryerson for social work. He consistently said he wanted to do political science at U of T and then days afore the applications were due he changed his mind. ‘You apperceive what?’ he said, ‘I want to help added kids who accept faced what I’ve faced.’

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By Louise Kinross Eunice Kang’s music career began at the age of three. Her mother was a professional pianist, so “there was no choice for me not to go into the music field,” she says, laughing. Eunice has a university degree in violin performance from South Korea, and spent her 20s travelling the world as a professional violinist. Eunice came to Canada to abstraction music analysis at Wilfrid Laurier University and volunteered at Holland Bloorview while she was a student. She later did an internship here and was assassin in 2011. Eunice is a registered psychotherapist, neurology music analysis fellow, and accredited music therapist. She brings a unique angle to the families she works with because her son Nathan developed seizures at age two. BLOOM: How did you get into the field? Eunice Kang: Through my whole activity I’ve played the piano and the violin. After performing in abundant concerts during my 20s, I wondered if there was addition field I could dedicate myself to, where I would feel more valuable. I love alive with accouchement and that’s back I thought about music therapy. BLOOM: What is a typical day like? Eunice Kang: During the week I mostly see inpatients where the goal is to help them regain their abilities, or enhance their absolute ability. Music is a safe environment. Most accouchement like music, so it can accept a life-changing impact on them. We accept many traditional instruments and new music technologies like Soundbeam, which uses sensors to detect movement and translate it into sounds, and the  virtual music instrument. Through music analysis we help accouchement to improve concrete and mental health or to better cope emotionally with their hospitalization and loss of abilities.  BLOOM: How would you support their affecting wellbeing? Eunice Kang: Generally it’s by making our own music. We may use technologies like GarageBand and they’ll write their own song, or we may pick famous music and change the words to reflect their emotions and stories. BLOOM: What about your work with outpatients? Eunice Kang: We see a lot of accouchement with autism who are outpatients. They may be alive on improving communication or self-regulation skills. They may be learning how to play the piano, violin, guitar, ukulele, drums or shakers with individualized apprenticeship plans. BLOOM: Why is music important to accouchement with disabilities? Eunice Kang: It offers a safe, rewarding place where accouchement can be themselves. In music therapy, you don’t need any prerequisite skills. As music is non-verbal, we can communicate and express ourselves more easily through it. That motivates our accouchement to enhance their skills. BLOOM: What are the joys of your job? Eunice Kang: I especially love to work with babies and young children. I also love alive with teenagers and preteens. But the babies are pure angels. Back we’re doing therapy, I don’t feel like I’m doing therapy. I’m enjoying them, moment to moment, and I can feel joy. Back clients accomplish progress—it doesn’t matter if it’s slow or fast—it boosts my self-confidence. I remember one family who came and during their child’s assessment, the mother started to cry. I asked her why she was crying, and she said she’d never heard her son say his name. He said it many times in that session. So there are breakthroughs. BLOOM: What is the greatest challenge? Eunice Kang: Sometimes controlling my emotions. My son’s seizures started at age two. Sometimes I see people going through what we went through and hard moments for our parents bring up my own memories and emotions. BLOOM: Can you tell us a little bit about your son Nathan? Eunice Kang: He was hospitalized for three months due to a high fever and then the seizures started. They are intractable. He lost the ability to stand, walk and talk. It’s a disaster to see your own child lose everything. My son is eight now, and I’m better. Time heals me, too. BLOOM: Was there annihilation you found helped you cope with your son’s medical action that might be useful to added parents? Eunice Kang: The best thing is direct family support. Affecting support is important, and Andrea Lamont here has done lots of analysis with me. I’d say the acumen I survived was because of Andrea’s support. Back something like this happens, it’s best to open up to someone you trust and talk about it, rather than hide. Some of the parents here who apperceive my situation accept also been very helpful in my life. Back I started, I didn’t think I would accept a special-needs child. Now that I do, I accept lots of support from my managers and coordinators. Everyone understands my situation, and they accomplish everything easy for me to work. The Canadian health-care system is so much better than in Korea, so I feel absolutely blessed that Nathan was born here. BLOOM: How has your own experience parenting a child with disabilities influenced your work? Eunice Kang: My attitude has changed. Back I was a beginning music therapist I didn’t absolutely take work home with me. But now I take things more seriously. Now there’s no boundary between work and home, but more of a continuation. I also acquisition that I think about the child and his or her environment more inclusively. I’m not just thinking about music therapy. I will check to accomplish sure families accept all of the available resources in added areas of their life. BLOOM: What accept you learned through patients? Eunice Kang: I absolutely admire their courage and how brave they are. I’m generally surprised at how families will advocate and protest to assure their child. They’re very complex in their child’s care. BLOOM: What work here are you most proud of? Eunice Kang: The Baby and Me program, because I love helping parents and baby to bond together, and to help with parent’s affecting challenges. I also love Holland Bloorview Rocks. The accouchement appear about 10 or 11 practices and then we put on a concert. I will never forget the joy and excitement on their faces, and their attitudes back they’re on stage. They are pure rock stars. This program also supports our music analysis program, so the accouchement are proud to apperceive that they’re helping added children.

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By Louise Kinross Unhappiness and worry in accouchement with disabilities is the most significant augur of negative appulse on ancestors wellbeing—regardless of diagnosis—according to a abstraction published last month in the Journal of Bookish Affliction Research. Over 200 Canadian parents of accouchement with disabilities like autism, cerebral palsy and bookish affliction filled out surveys about their child’s function, behaviour and emotions, and how it afflicted the family. The children, in Alberta, Ontario and Quebec, were aged four to 13.  Despite ancestor perceptions that their accouchement had added serious problems in areas like peer relationships or inattention, “it is children’s worries, fearfulness and general unhappiness that is most impactful on the family’s ability to maintain their social, financial and personal well-being,” the authors write. Parents adjourned negative impacts of the affliction on the ancestors related to “increased time and financial demands” and “disruptions in ancestors routines, social isolation and decreased affecting well-being.” BLOOM interviewed Lucy Lach, an associate professor in the School of Social Work at McGill University, who co-authored the abstraction with Dr. Emily Gardiner at the University of British Columbia. Kids Brain Health Network funded Emily's postdoctoral research. Emily used a data set developed by Parenting Matters, a team studying what it means to ancestor kids with disabilities. Parenting Matters was funded by the Canadian Institutes of Health Research and Holland Bloorview Kids Rehabilitation Hospital Foundation. BLOOM: Why was there a charge for this study? Lucy Lach: Emily, who is the lead investigator, is interested in tackling this issue of the value of categorical vs. non-categorical research. Categorical research is diagnosis-specific, and non-categorical research cuts across diagnoses. From a research perspective, there’s an ethical dilemma about funding actuality allocated only to specific disorders. There’s a whole industry of conferences and journals dedicated to autism and cerebral palsy and epilepsy. But added disorders—particularly as we get added fine-tuned in locating genetic disorders—are so tiny, that their choir get excluded. Non-categorical research allows parents to find shared experiences—not because of their child’s diagnosis—but because of similar anatomic impairments. This is research that can benefit all families. BLOOM: What were the key results? Lucy Lach: There were three key variables that came out as significant predictors of how abnormally parents appraise the appulse of a child’s affliction on the family. The most significant was higher affecting symptoms. These accredit to fearfulness, worry, sadness and withdrawal. The added two predictors were lower social skills and lower practical, daily-living skills. BLOOM: What kind of affecting problems were you looking at? Lucy Lach: These are internalizing behaviours like fearfulness, sadness and actuality downhearted. They’re often invisible. With externalizing behaviours like aggression, conduct problems and combativeness, it’s article very physical, and you apperceive it back you see it. A adolescent who is added withdrawn, or fearful or sad, may be interpreted as a adolescent with a quiet nature, or a adolescent with a lack of motivation. They’re not disruptive, and they’re less likely to come to the attention of teachers. Unless a ancestor is worried about their child’s affecting state, it’s not likely that clinicians will pick up on it. The results are far-reaching because they suggest that back a adolescent is unhappy, not only is it the worst feeling for the parent, but it has a negative appulse on the entire family. BLOOM: Was that a surprise? Lucy Lach: I would not have predicted this result. I would have anticipation that a child’s aggressive behaviour, rather than affecting problems, would have the highest degree of negative impact. People don’t apprehend how important a child’s affecting life is. I remember back I was doing my work with accouchement with epilepsy, we were paying attention to aggression, because it’s so disruptive in the classroom and with aeon and family. But we weren’t at all paying attention to fearfulness and sadness. BLOOM: What can clinicians booty from this? Lucy Lach: I think the assessment of fearfulness and sadness and worry is really important in clinical practice. We apperceive from the literature that parents are much better judges of their child’s externalizing behaviour. Kids themselves are a better adjudicator of their internal accompaniment because they’re added tuned into it. So clinicians charge to use measures that include affecting affection and—to the extent possible—have the adolescent complete them. BLOOM: So it would be important for accouchement who are non-verbal to have another way to analyze their feelings? Lucy Lach: I used to use cards with faces on them, and ask kids to point to the one that shows how you feel inside, how you feel in your heart. Clinicians charge to assess, assess, assess, and develop programs that address affecting affection in kids. If you want to help families be less negative in their appraisal of the appulse of their child’s disability, develop programs that target a child’s affecting abundance and social skills. BLOOM: We apperceive that parents of accouchement with disabilities have higher ante of depression and anxiety. Does the abstraction in any way tie a child’s affecting problems to a parent’s affecting state? Lucy Lach: No, we can’t extrapolate that. We could do a separate abstraction with the same data to look at whether a child’s affecting problems are predictive of ancestor depression and anxiety. BLOOM: The abstraction notes that children’s functioning aural a diagnosis often varies greatly. And that it’s better to target interventions to similar anatomic problems across diagnoses. This fits with a move here at Holland Bloorview to ‘personalize pathways,’ so that a adolescent receives services to meet their needs vs. their diagnosis. But that’s not the way children’s rehab has traditionally been set up, is it? Lucy Lach: Absolutely not. That will be hard. We have clinics that are specific to diagnoses, journals specific to diagnoses and conferences specific to diagnoses. The apple is structured by diagnosis. BLOOM: In the section on limitations of your study, it says that the Ancestors Appulse of Childhood Affliction Scale you used has absolute and negative subscales, but this abstraction focused on negative experiences. So, in accession to the negative appulse of a affliction on a family, there are also items looking at absolute impact. Is there anything absolute parents can booty from the study? Lucy Lach: Yes. The idea that parents simultaneously hang on to absolute and negative aspects of the impact. We charge to inquire, and help families build, their narrative around how having a adolescent with a affliction has had a absolute appulse on their family. It’s not a narrative that they’re invited in to frequently. We should be asking the question: ‘Tell me about how your child’s affliction has had a absolute appulse on the family.’

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Photos and story by Louise Kinross Lewis Tolensky has been taking his son Seth pond at Holland Bloorview’s Snoezelen pool since he was one. When the lights are dimmed, the small, heated therapy pool becomes a soothing environment area ample balls bob in the baptize and change colour, a kaleidoscope of butterflies is projected on the wall, and classical music plays. Lewis is part of an informal accumulation of dads who bring their kids at the same time. “They acclimated to come at different times, but then they all concluded up booking the same time spot,” says Lifeguard Michaela Jones. “Conversations sparked about sports and what’s happening at home and resources for their kids.” “It makes you feel like you’re part of a little community,” Lewis says. “We all have different situations, but there’s a lot of aggregate experience you can learn from. School is always a big topic. But we don’t aloof allocution about disability. We allocution about football and the account of the day and politics. It feels very normal and natural and nice to connect with them.” The dads’ accumulation formed organically as the fathers got to apperceive anniversary other. “We bounce ideas off anniversary other in terms of how we handle certain scenarios,” says Pablo Pommells. He’s been bringing his nine-year-old daughter Ayla, who has autism, since she was two. “A dad might have a catechism about sleeping, or about using a certain product,” Pablo says. “It’s nice to apperceive that others can relate. “A lot of fathers don’t really engage with their children with disabilities—that’s why there’s a high divorce rate. It’s important to put it out there to fathers that it’s accept to have questions and doubts about your child, and you should never deny things. Everybody has something to contribute.” Holland Bloorview’s Snoezelen pool and allowance are open to children and adults with any type of disability. You don’t need to be a Holland Bloorview applicant to access the pool. A 45-minute session costs $14.37 for parent and child. Lewis says the accessibility of the pool becomes more important as Seth, who is nine, grows. “It’s a comfortable place area it’s easy to transfer Seth onto the shower chair and into the pool and the warm temperature combines for a great experience for him and for me,” Lewis says. “As Seth gets bigger, activity everywhere else gets more complicated, but Bloorview stays the same.” You can register online or e-mail Snoezelen Coordinator Lorraine Thomas at snoezelen@hollandbloorview.ca . Winter registration opens at 9:30 a.m. this Thursday, Nov. 29.