PARENTING POSSIBILITIES
SUMMER 2012
DOUBLE TAKE A fashion photographer focuses on kids with differences
CARE NOTES A mom backs real blended food for her tube-fed tot
RESEARCH HITS Study says pressure to walk can prompt too much therapy
PARENT TALK Carly speaks: We listen
TRAILBLAZER Olympian Silken Laumann’s new life includes autism: ‘It’s been quite a journey’ BLOOM ~ summer ~ 2012 ~ 1
SUMMER 2012
BLOOM speakers The new BLOOM speaker series brings you leading thinkers on childhood disability and a night of networking with parents.
BLOOM is a how-to magazine on parenting children with disabilities. BLOOM gives voice to the joys and challenges of special-needs parenting by combining firsthand family insights and the best professional advice. We believe that every child blooms in his or her own unique way. BLOOM is published two times annually and mailed to Holland Bloorview families and parents and professionals who ask to be on our list. CONTRIBUTORS PUBLISHED BY: Holland Bloorview Kids Rehabilitation Hospital WRITER AND EDITOR: Louise Kinross ASSISTANT EDITOR: Megan Jones CREATIVE DIRECTOR & DESIGNER: Sara Purves PRINTER: Continental Press HOLLAND BLOORVIEW KIDS REHABILITATION HOSPITAL 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. DISCLAIMER Articles in BLOOM are not a substitute for professional medical advice. Resources listed in BLOOM do not signify endorsement by Holland Bloorview. Where appropriate, please consult your physician. CONTACT US EMAIL: lkinross@hollandbloorview.ca TEL: 416.424.3866 or 800.363.2440 FAX: 416.425.9332 WARMLINE: 1-877-463-0365 MAIL: Holland Bloorview Kids Rehabilitation Hospital 150 Kilgour Road, Toronto, ON M4G 1R8 http://bloom-parentingkidswithdisabilities. blogspot.com
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Certain Proof: A Question of Worth See the Canadian debut of this documentary that follows three American children who are non-verbal and struggling to be understood and included in the public school system. When: Oct. 9, 7-9 p.m. Where: Family Resource Centre, Holland Bloorview Please RSVP to Nancy at 416-425-6220 ext. 6303 or e-mail nydyke@hollandbloorview.ca. Partner with Holland Bloorview Want to advise on hospital policies and programs, share your family’s health-care story or provide support to other parents? Join our family leadership program. Call Laura Williams at 416-425-6220 ext. 3395 or email lwilliams@ hollandbloorview.ca. Sibling talk video A 2012 Holland Bloorview video of siblings talking about their experiences living with a brother or sister with disability can be borrowed from the Family Resource Centre. Client and Family Relations Have a question or concern about your child’s care at Holland Bloorview? Call 416-753-6084 or email feedback@hollandbloorview.ca. Bookshelf Somewhere Over the Sea: A Father’s Letter to His Autistic Son, Hafdan W. Freihow, 2012. “A poetic memoir chronicling the love between a father and his son with autism… Freihow writes movingly of his family’s day-to-day experiences.” Publishers Weekly. Wonder, R.J. Palacio, 2012. “I won’t describe what I look like. Whatever you’re thinking, it’s probably worse. ” A fifth-grader who’s always been home-schooled because of facial anomalies enters middle school. For ages 8-12.
inthisissue
on the cover Former Olympian Silken Laumann, centre back, with her new blended family. On parenting stepdaughter Kilee, 16 (second right), with autism: ‘In the beginning I was far too judgmental.” Read about how Silken’s thinking evolved page 6. Photos by Beth Hayhurst.
Features TRAILBLAZER
ROLE MODELS
06 S ilken Laumann rows into autism’s turbulent waters
24 Life according to Crystal
CARE NOTES
26 ‘I manage Carly Inc.’
15 R eal blended food a lifesaver for tot who’s tube-fed
RESEARCH HITS
DOUBLE TAKE 18 ‘ That quality we add is humanity’ 22 Y outh blog about life with genetic anomalies; peers learn
PARENT TALK
30 Science roundup 31 Delivery of autism services breaks along race, economic lines 32 Social pressure to walk can lead to too much therapy, study finds 34 With a little help from my robot
Departments RESOURCES
FEEDBACK
02 S peakers, online and bookshelf
05 Your letters YOUR KIDS IN BLOOM
FROM THE EDITOR
21 Photo gallery
04 S tereotypes: No one is immune
BLOOM ~ summer ~ 2012 ~ 3
fromtheeditor
Stereotypes: No one is immune I was disheartened when I read a recent French study that showed that adults who are outwardly accepting of children with disabilities can, at an unconscious level, carry negative stereotypes about them. In the study, published in the journal PLoS One, 165 adults were asked to rate photos of children with Down syndrome and photos of typical children. Participants then did implicit-association tests, which capture the strength with which certain groups of people are automatically, without conscious awareness, associated with positive or negative attributes. Participants included 55 young adult students, 55 non-student adults and 55 caregivers who work with people with intellectual disabilities. In each group – including the caregivers – photos of children with Down syndrome were automatically associated with a negative trait. This stereotype existed for people who had openly rated the photos of children with Down syndrome positively. “These implicit associations are the result of social values...carried by our culture,” says researcher Claire Enea-Drapeau, a school psychologist in Marseille, France with an interest in discrimination. “These are likely deeply embedded and difficult to break.” Did the adults in this study censor their thinking when rating photos of children with Down syndrome positively? Claire says people may not reveal attitudes they know aren’t socially acceptable. But they may also be oblivious to them. “People may not have access to some of their thinking.” 4 ~ BLOOM ~ summer ~ 2012
This helps explain why even the caregivers held negative associations. “Nobody is immune, even people who have contact with the stigmatized group,” Claire says. Are we trapped in automatic stereotypes handed down to us from our predecessors? “As long as we don’t know about them, yes,” Claire says. “But if we’re aware of them, we can choose to try to change them, to struggle” to free ourselves. One encouraging finding of the study was that caregivers’ negative attitudes at the implicit level were weaker than in the two other groups. “It shows that tight contact with people with Down syndrome may reduce implicit stereotyping.” No matter what we do to promote acceptance of people with disabilities, if we don’t get at underlying stereotypes, we won’t reduce discrimination. That’s why I was thrilled to learn about Positive Exposure, a unique arts group run by photographer Rick Guidotti. Rick travels the world capturing – in stunning images – the beauty he sees in children with genetic syndromes. “These kids are gorgeous, we’re just not allowed to see it,” he says. Check out our stories on Positive Exposure on page 18.
feedback FROM THE MAGAZINE, E-LETTER & BLOG
I love the perspective that the capacity to love and be loved has value far beyond our ability to perform (Identity: Is it what you do? May 24). This concept is one we work over and over to reinforce with our daughter, whose physical disabilities put performance out of grasp. She is growing into a deeply loving young lady and the value she brings to the lives she touches because of that loving attitude is every bit as much a gift as any “performance” she could offer. I agree with Amy Julia, that our society would do well to shift its emphasis away from performance. Rose Marie, online Thank you for writing this article (One child, 10 conditions, no diagnosis, April 24). We have a son with complex medical needs and it has been through my own investigation that we have found things to help him. Across the board, medical specialists scratch their heads and no one wants to take responsibility for the care of our son. Frustrating doesn’t even express the pain, agony and anger I have at the medical community for their inept care of our son. I have often asked the children’s hospital we used to frequent if they had a medical care coordinator. I have been told countless times what a great idea this is and good luck finding anything like this in our state. Sigh... I am so excited that something I have often dreamed of actually exists and is working! Online
I read this article with great interest (I say gobbledygook! March 27). And thank you to the person who posted the Canadian Pediatric Society’s 2011 position statement on withholding fluids and nutrition. In that statement, they say it is okay to withhold artificial nutrition and hydration in some cases. “Artificial” being something like a G-tube, NG tube or through IV. They also say that “Children who are able and wish to eat and drink should be offered food and fluids by mouth.” I’m glad they’ve issued such a statement. In 2003, the NICU pediatrician advised us that we had the option of NOT providing food and fluids by mouth to our newborn. The hospital would provide intravenous morphine for pain relief while our newborn starved/ died of dehydration. I was horrified by this suggestion. It’s not legally allowed infanticide but it was still happening or at least being offered as an option. We decided to ignore the medical advice and allow our baby to eat and drink by mouth. He’s 8 now, has cerebral palsy but is otherwise very healthy.
and her decision to take him out of therapy and just enjoy life. Beautiful, and so relevant.
Pamela, online
Thanks so much for responding so quickly and with so much information. You guys are a fabulous resource. Unfortunately there isn’t anything much like that down under – in fact our son’s genetic neurologist referred us to you!
I also wanted to thank you – so much – for the magazines which I received. I LOVE IT!! Wow. I am so blown away. The quality is topnotch, the articles are engrossing, engaging and just fantastic! I so wish we had something like that here. My head is still full of the article by the mother of Owen,
Meriah Nichols, San Francisco Your blog has helped me in ways that are difficult to explain. It has helped me understand myself better: my frustrations, my stress, my negativity, my jealousy, my worries, my exhaustion. Why we obsessively do all the things we do. Reading about all these other parents with so much courage, strength and valuable advice helps me feel supported. As parents, we stress, looking for ways to improve our children’s life with different therapies and new technology. Your blog has also taught me to stop and enjoy Melanie for who she is and her ways. I love Melanie’s invisible friends and her pretend world. They make me laugh so much. Thank you Louise...you have opened my eyes to a whole new exciting, fun-loving chapter. In this chapter we are going to enjoy Melanie as Melanie. I can’t wait. Nathalie Wendling, Manotick, Ont.
Melanie Weinberg, Victoria, Australia
Comment on these letters or send your own to lkinross@hollandbloorview.ca
BLOOM ~ summer ~ 2012 ~ 5
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trailblazer
Silken Laumann rows into autism’s turbulent waters ‘I’ve discovered that life is not just about achieving, it’s about being present,’ former Canadian Olympian says Silken Laumann is a former world rowing champion and one of Canada’s greatest Olympians – winning two silvers and a bronze.
Patch’s daughter Kilee, 16, has autism and requires round-the-clock care.
Silken Laumann: Kilee is 16 and she’s profoundly autistic. She talks but in a very limited way. She’s been diagnosed as cognitively disabled and operates around the age of two or three. She has episodes where she can have some pretty impressive meltdowns. That said, Kilee is a very passionate person. She has this really happy, loving energy a lot of the time. She loves to be active like her dad – hiking and swimming. She’s a downhill skier who’s skied double-black diamond. She’s passionate about food. And she loves the other kids.
The other children are William and Tygre, both 14, and Kate, 12.
BLOOM: What was it like to become a parent to a teen with autism?
For Silken, an elite athlete who once believed anything could be achieved through hard work, the reality of raising a teen with disabilities came as both a shock and a revelation. We spoke about her new life.
Silken Laumann: It’s been quite a journey, as you can imagine. The first time Kilee grabbed me by the hair, I did everything wrong. I screamed. I fought back. I cried.
Less well known is the fact that in 2010, at age 45, Silken became stepmom to a daughter with autism. That year she and her partner David Patchell-Evans (known as Patch), founder and CEO of GoodLife Fitness, moved in together in Victoria, B.C., each bringing two children to their new family.
Photos by Beth Hayhurst
BLOOM: Tell us a bit about your daughter Kilee.
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trailblazer I’m an Olympic athlete trained to jump out of the starting gate with a heart rate of 175, and I reacted like a woman being attacked in a dark alley. It wasn’t rational and I was ashamed and embarrassed afterwards. She was crying and I was crying. It’s been an upward positive swing from there as far as me managing my emotions around Kilee’s physical outbursts – which happen less and less. I’m better at respecting her boundaries and I can see the signs of her escalating. I’m much more in tune with her energy when it starts to switch, so I’m much less likely to be in a situation where she grabs my hair and starts to pull.
‘ In my days as an Olympian I think I had a naïve idea that ... through hard work anything could be achieved. I thought that you just keep going at it till you solve the problem. But human beings aren’t like that’ BLOOM: What were the first few months living together like? Silken Laumann: I don’t think anything could have prepared me for it. At the time I thought I was doing okay and I thought it was going well, but in retrospect it was really hard. Kilee moved from London, Ont. to British Columbia, which, as you can imagine with autism, was very traumatic for her. Her behaviour escalated within three weeks of moving out and we had outburst after outburst. Unlike my other kids, Kilee couldn’t yell and say “I hate you.” She’d come running at me or biting her hand or jumping up and down like a two-year-old. In the beginning I was far too judgmental. I didn’t always separate the behaviour from the person. I couldn’t see how much she was struggling. I’d get really angry at my husband too, thinking he didn’t have enough discipline around setting boundaries for Kilee. It took
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me a while to get it – to start to understand the complexities of the situation and the complexities of Kilee. This is what happens with so many specialneeds children. People just see the top layer and sometimes the top layer is not the best layer. With Kilee, as time went on, I saw layer after layer after layer. And as I have learned to be more still with her and much less judgmental, I can see just how vulnerable she is, just how hard she’s trying, and just how frustrated she sometimes feels. And we’re learning a language together on how to express that in a more helpful way than hurting or jumping or screaming. BLOOM: What have you learned since Kilee came into your life? Silken Laumann: I’m a very impatient and demanding person – demanding of myself – and that trickles over to people around me. One of my lifelong journeys is to not be so impatient and to not be so definite and confident that I know what needs to be done. Because with Kilee, none of that works. In fact, what’s needed is the exact opposite. With Kilee, 90 per cent is feelings, not verbal communication. When she’s vibrating high I can physically feel this big energy. And when she’s going off into a dark energy, you feel it and see it in her eyes. Having Kilee in my life has made me slow down, and shown me how fundamental it is to focus on the positive, because positive reinforcement for Kilee is so important. I need to look at what I can do to encourage her and compliment her, even when she’s acting out, because sometimes the best way to help her switch gears when she’s sobbing or biting her hand is to start talking to her. I’ll say: “Oh Kilee, you’re such a good girl and you have such a big heart. And we love you so much.” And I keep going at it and feeling it with her. Because I know that in that moment she’s beating herself up.
BLOOM: I was raised with the idea that if you simply tried hard enough, anything was possible. It took a long time in raising my son to come to the realization that that was a platitude that wasn’t true – that I didn’t control the outcome for my son and I couldn’t ‘fix’ him. Silken Laumann: My husband still holds onto that dream that he’s going to fix Kilee and she’ll come out of autism, but for me it’s easier because I’ve come into her life later. She’s still learning a lot, but I don’t think she’s coming out of autism. When I’ve got myself into trouble has been when I get in that mode of being judgmental – seeing things that other people are doing wrong or reading books and thinking I know it all. I’ll get all enthused about this or that therapy – like behaviour therapy – forgetting that they’ve already done it with Kilee and it was a really negative experience for her and didn’t work. I realize now how arrogant that
was. When I’ve gotten on my little high horse and preached is when things have been most stressful for Patch and I and when I’ve had the least amount of acceptance for Kilee.
‘ If you’re always saying “I’m only going to listen to you if you talk in full sentences” you can’t enjoy your child. You can’t see their gifts’ BLOOM: How have your other kids adapted? Silken Laumann: William always just seemed to get Kilee and could communicate with her beyond what any of us could. He would tell us what she wanted: “Mom, she doesn’t want to do that” or “Mom, she feels like this when you say that.” It took my daughter Kate longer to relax to enjoy Kilee because at one point she had a physical fear
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trailblazer of Kilee, which was legitimate because Kilee outweighed her about three to one. It’s funny the things they’re jealous of: Just the other day William went on about how Kilee has her own bathroom in her bedroom. And I said of course she has her own bathroom, she’s up 20 times a night and the bathroom is the biggest blessing. But I’m the oldest, he said. I tried to go a little deeper because I thought this really isn’t about the bathroom. And then he said: She’s also got an iPad and I don’t. So I gave him permission to feel angry, and to tell me that Kilee doesn’t get in trouble for her bad behaviour, that we have to leave the room and it should be Kilee. He was angry about a whole bunch of stuff, and I need to respect that this isn’t always easy for the kids. I believe though, that my kids will gain more from having Kilee in their life than they’ll be hindered. BLOOM: How has being an Olympian made it harder or easier to accept Kilee? Silken Laumann: Where it’s helped is that I’m very strong and determined. Given some of the challenges we’ve had – bringing not only a blended family together but bringing a family with a profoundly autistic child together – I think I have a huge capacity for energy and endurance. And a lot of that came from being an athlete. Some of it is just my character. It’s helpful to have a high level of energy, to know yourself well, and to be honest with yourself. I can’t imagine having a child with a really challenging disability at age 25 when you’re still discovering yourself. I have a huge amount of empathy for Patch and his previous partner Tammy and what they went through in those early years. BLOOM: Have you reevaluated some of your values and beliefs? Silken Laumann: In my days as an Olympian I think I had a naïve idea that I had more control over my life than I actually had – and I was much more controlling and determined that through hard work anything
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could be achieved. I thought that you just keep going at it till you solve the problem. But human beings aren’t like that. We don’t solve our own problems that way. And that’s a journey I’ve been on for over 20 years. I’ve discovered that life is not just about achieving, it’s about being present. It’s not about being in control but opening up every day to the wonders that life presents to you. And that happens in your heart, not your head.
‘You read these books and they tell you that if you do everything right you’re supposed to cure your kid and take them out of autism.But most kids don’t come out of autism’ With Kilee there are still times when that Olympic athlete comes out in me and I’ll say “We’re going to do this and this, and this will happen” but I know that doesn’t work. More and more, every single day, I see Kilee for who she is. And every time we try to tell her who she is and this is what she’s going to do, she feels a sense of failure. For example, “You’re going to learn to write your name.” Well, that may never happen for her. And as a parent of an autistic child you’re riding this fine balance: you don’t want to give up trying different things because there might be a piece of the puzzle that gets put together, but you want to accept your child for who they are. If you’re always saying “I’m only going to listen to you if you talk in full sentences” you can’t enjoy your child. You can’t see their gifts. BLOOM: How has Kilee changed your family? Silken Laumann: She’s slowed us down. Patch is so high energy and so are the other kids and I. Kilee brings us all to a level of peace and slowness. We slow down for her
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and spend more time at home and it’s a good thing.
needs are still very much that of a child: she needs 24-hour supervision.
William is an almost 15-year-old boy who’s six foot four and I can’t think of a more awkward age to have a profoundly and obviously different sister. But he introduces his friends to Kilee and answers their questions. He includes her. If they’re all going out to the hot tub he’ll ask her if she’d like to come. It’s the same with my daughter. If she’s beading, she’ll bead with Kilee. I never get the feeling that my kids spend time with Kilee because they have to.
It makes me feel more patient about life. It’s not about what will happen tomorrow. It’s more about today and being together and enjoying. I know a lot of parents of kids with disabilities worry a lot about the future. I don’t. I’ve taken enough risks in my life and had enough disappointments that I have this feeling very deep within me that no matter what happens with Kilee, even if her behaviour escalates, we’ll have the strength to make it through.
BLOOM: Do you look at life differently now? Silken Laumann: As a parent there’s a tendency to constantly be looking forward – to when your kid finishes university or when you figure out your daughter’s dyslexia. You’ve always got something to look forward to. With Kilee, there’s this knowledge that she’s going to be in some ways a child for a long, long time. She’s growing up but her
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Patch is more concerned. He gets really worried about things. We’re very fortunate in that we have the financial ability to provide Kilee with the support she needs for the rest of her life. That’s huge and I will be very open in saying that. I know there are many parents who don’t have that kind of support. Their worries are different from ours. Our worries aren’t financial – they’re around her happiness and safety and we have more options than a lot of families.
trailblazer BLOOM: I don’t know of many blended families that include a child with disability. Do you bring an objectivity that’s harder for a biological parent to have? Silken Laumann: I think I do bring fresh eyes. I love Kilee and more and more, as time unfolds, I love her as I love my own children. But there is a difference – and most stepparents would say that, particularly in the beginning. You’ve had your children your whole life, you’ve given birth to them, seen them as babies. I didn’t have that with Kilee. I didn’t climb the mountains Patch climbed with her. I have an objectivity that he can’t have. The thing he does have is a sense of failure – that he didn’t do enough. I think guilt is something parents have anyway, but 10 times more when you’re the biological parent. You read these books and they tell you that if you do everything right you’re supposed to cure your kid and take them out of autism. But most kids don’t come out of autism. At 16 Kilee is profoundly autistic. If there’s a scale, it’s easy to say we failed. She’s not doing as great as this kid or that kid. Patch carries a level of guilt about that. I know it’s irrational and I know it’s not helpful, but I get where it’s coming from. BLOOM: I’ve come to the conclusion in raising my son that we are largely ‘gifted’ with our abilities at birth, as opposed to ‘earning’ what we get in life through hard work. What do you think? Silken Laumann: We laud intellect in our culture. We applaud achievement to the detriment of everything else. And when you’re talking about achievement for Olympic athletes, you have to be born with the body. I was born gifted physically and I did a lot with that gift. But I couldn’t have done anything if I hadn’t had the gift physically.
People talk about (natural) physical talent and hard work in sports, but they tend to downplay the physical talent and that’s huge in Olympic athletes. BLOOM: Moms of teens with autism have been found to have stress levels that mirror that of combat soldiers. How do you manage stress? Silken Laumann: As mothers, it’s the most challenging thing to look after ourselves. It’s been drilled into our heads that we sacrifice for our kids and we give up for our kids. I say hogwash. We are human beings. We need to be constantly renewing our energy so we have the capacity to give emotionally. You can’t do it if you run out of life force. I see moms in particular who have given up everything for their special-needs kid and I get it – sometimes who else do you go to? And I don’t want to give them something else to feel crappy about. But I think we can fool ourselves when we get into a place of seeing ourselves as indispensable and thinking that no one else can care for our child. It won’t kill your kid to be misunderstood by a caregiver once in a while so that you can keep yourself sane and happy. You have to constantly look for opportunities to take care of yourself.
Silken Laumann is writing her autobiography and training to be a life coach. She is a spokesperson for GoodLife Kids Foundation, which funds programs to ensure that every Canadian kid lives an active life. Silken says she finds balance through yoga, exercise and art.
Interview by Louise Kinross
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Mom knows best
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carenotes
Real blended food proves a lifesaver for tot who’s tube-fed My twins Andrew and Eleanor were 28-week preemies. Andrew came home from the hospital with three stomach surgeries under his belt and significant brain damage. The brain damage caused cerebral palsy and epilepsy, which put him at risk of aspirating and made feeding difficult. At 21 months he had a fourth surgery to place a G-tube to ensure he was getting nutrition safely and in hopes of boosting his calories. Andrew, I was told, could no longer eat real food. Instead, his diet would be a formula that was described as nutritionally complete, but which I discovered is made up of 53 per cent corn syrup. The G-tube solved the problem of getting formula into Andrew, but it exacerbated his reflux and vomiting. Andrew spit up every ounce, retched, lost weight, never slept and stopped smiling. Instead of producing stools, he had green diarrhea once or twice a week. He was on the brink of total dehydration and
doctors suggested more surgery: a J-tube, nissen-fundoplication or GJ-tube, but with the caveat that they might not work. Then, while scouring the Internet for stories about children with severe reflux, I came across something called the blenderized diet. In this diet, vegetables, fruits, grains and meats are blended in a super high-speed blender until they become liquid, then fed through the g-tube. Families out in the blogosphere said that real food had a calming effect on their children’s stomachs and as a result, stayed down. I had no idea that real food was a possibility with a G-tube! This diet – which was never presented to us as an option by our medical team – has given us our boy back. The blenderized diet isn’t new or radical. Feeding tubes have been around for
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carenotes decades and patients were once fed mostly blenderized food. In the 1970s commercial formula was introduced; hospitals embraced the convenience and never looked back. I told our doctor and nutritionist that before we did any more surgery, I was going to try the blenderized diet. They weren’t happy. They said they had never had a patient go this route and that formula was best. With some reluctance, our medical team agreed to a trial. The first week of the diet, Andrew did not spit up once. By day four, he was completely off formula and having nice bowel movements one to three times a day. He went from taking multiple 10- to 15-minute catnaps a day to a single one-to-three hour nap. He started sleeping 10 to 11 hours straight through the night with no feedings. At his weigh-in two weeks after the start of the diet, he had lost a few ounces. I was disappointed, but knew that as the body adjusts from a mostly-sugar diet to real food, this was common. Ever since, Andrew’s been gaining weight! He may spit up once a week or so but it’s usually if he’s overtired or constipated.
For Andrew and our family, the blenderized diet has been life-saving. Before beginning any change in your child’s diet, run it by your medical team, as it’s important that you have a supportive doctor and dietician to guide you. By Jennifer Han
Andrew’s first blenderized recipe: this one comes out to about 34 calories per ounce. His Elecare formula is 30 calories per ounce. In the other recipes I’ve come up with, the ratios for protein/grains/ oils/veggies/fruits stay the same. I just swap different foods each time. His blends tend to be between 30 to 40 calories per ounce.
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Now that Andrew’s body is responding in a healthy way to real food, it’s clear that formula didn’t agree with him. We are bewildered and beyond pleased at how amazingly fast, drastic and profound the change has been. Not only is the blenderized diet treating Andrew’s severe reflux but it’s made him happier and healthier and prevented further surgery.
that recommend it. In fact, in a 2010 study by Cincinnati Children’s Hospital, 75 to 100 per cent of 33 children with failed nissen fundoplications who trialed the blenderized diet showed an immediate reduction of 50 per cent or more in reflux and vomiting.
We know this diet isn’t for all children with severe GI problems. However, I believe medical staff should present it as a treatment option along with standard surgeries. While the blenderized diet is a foreign idea to most North American hospitals, there are a few – like Children’s Hospital of Philadelphia and Cincinnati Children’s –
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3 cups of roast chicken 700 calories 1 cup orange juice 100 calories 1 cup soy milk 100 calories 2 slices of whole wheat bread 200 calories 1 cup blueberries 70 calories 1/2 cup broccoli 40 calories 1 cup spinach 60 calories 1 tablespoon of olive oil 120 calories 1/3 cup apple sauce 60 calories 1/2 cup peas 60 calories 1/2 banana 50 calories 1 container pureed pear 45 calories Total Calories: 1645
L Blenderized diet resources
Homemade Blended Formula Handbook by Marsha Dunn Klein http://www.new-vis.com/cart/detail.php?Item=B-12-01 Ainsley Rae blog: Practical tips from a mom http://ainsleyrae.blogspot.ca/p/blenderized-diet.html
Food for tubies: Pros and cons of blenderized diet http://www.foodfortubies.com/index.php/pros-a-cons Jennifer Han writes at the Early Birdies at http://earlybirdies.wordpress.com/
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‘ That quality we add is humanity’ 18 ~ BLOOM ~ summer ~ 2012
Rick Guidotti (left) spent years surrounded by conventional beauty ideals. He worked as a fashion photographer, shooting all over the world for companies like L’Oreal, Revlon and Yves Saint Laurent. But one day, his outlook changed. He spotted a girl with albinism on the street and was struck by her beauty. When he researched the genetic syndrome he was put off by the dehumanizing images he saw in medical texts. So in 1997 he started Positive Exposure. Now he travels the world photographing and advocating for children with genetic syndromes like Ethan (above). Ethan, now 15, loves visitors, going to people’s houses, being read to, and hanging out with his 2-year-old sister Kate.
doubletake BLOOM: How are the visual stories you tell about these children different? Rick Guidotti: The images that I was forcefed when I first started Positive Exposure were images that are typically used in medical textbooks: pictures of kids up against walls in doctors’ offices with a black bar across their eyes, pretty much being portrayed as a disease as opposed to a kid. I understood the importance of these images to show health-care providers how a condition presents itself, but nobody ever looks like that! I thought, ‘There has to be another way that we can present the same information in a photographic image but add another quality.’ That quality we add is humanity. BLOOM: Is working with Positive Exposure different from working in fashion? Rick Guidotti: Well no it’s not, because it’s still about beauty. It’s always been about beauty for me. In fashion I was always frustrated though because I was always told who I had to photograph. I was always told who was beautiful. BLOOM: How did you learn to see beauty differently?
Photos by Rick Guidotti
Rick Guidotti: That’s something where I don’t fully understand what happened. Walking down Park Avenue I saw a kid waiting for a bus and she was beautiful. She had albinism, so was never included in (the) beauty standard. I realized instantly that there was so much more beauty out there. What terrified me was I wondered how many months I’d walked past that girl and didn’t see her. BLOOM: Had you worked with people with physical differences before? Rick Guidotti: No! As a fashion photographer not at all. I never even knew anybody with a genetic syndrome in my life!
BLOOM: How do you prepare to go to a support conference for a particular syndrome where you’ll be taking pictures? Rick Guidotti: I’m usually invited by a group. They usually have a great website or I’ll talk to the director and they’ll let me know exactly what the challenges for these kids are and what I should keep in mind. I try to inform myself as much as I possibly can about who these kids are. BLOOM: How can Positive Exposure’s images help to fight our fixations with beauty ideals? Rick Guidotti: By giving people permission to see beauty and to interpret beauty in their own right. Not to see a beauty that’s dictated by industry’s ideas of what’s acceptable, but to judge for yourself. This is not inner beauty. I don’t believe in that. I’m as shallow as it gets. These kids are gorgeous, we’re just not allowed to see it. But these images give us the freedom to see it and it changes everything. BLOOM: Have you noticed a difference in kids after they see their photos? Rick Guidotti: Oh my, across the board! I first started off with a girl named Christina with albinism who had been teased her whole life. Even though she was stunning, gorgeous, she walked in with her shoulders hunched, her head down, no eye contact. She had zero self-esteem. But then photographing her and showing her her magnificence, like ‘Look at yourself!’ I watched her just transform in front of the lens. And it happens every time. BLOOM: Why is it important for people to see these images? Rick Guidotti: I can shoot photos of a kid in my studio and they can see they’re amazing. But by the time they leave the studio and make their way down Park Avenue, five people stare at their wheelchair or their birthmark, or somebody whispers or giggles BLOOM ~ summer ~ 2012 ~ 19
important this is. The challenge we have is to make sure we keep pushing forward with this because the world is ready for this change. BLOOM: We’ve become more critical of conventional media images. What still needs to improve? Rick Guidotti: More awareness. People need to see not victims, but kids first and foremost. The pity has to disappear. These kids need to be seen as their parents see them, as their friends see them, as valuable and positive parts of society. It’s about changing our ideas of normal: who is normal and what makes something normal.
or points or looks away. Their empowerment breaks down immediately. We realized that what we need to create are opportunities to make the idea of celebrating (diversity) relevant to the public at large. It’s so important to bring these images to the public in many different ways, so that people have opportunities to really approach them. Because once you approach these images, you’re no longer afraid to look at them. You reach out, not because somebody has a difference, but for humanity, to a person. The fear is broken down. BLOOM: Have you ever faced barriers getting your images into the mainstream? Rick Guidotti: Oh yeah. For example, we’d love to get a book created. Many publishers have loved the images, the stories, but the question has always been ‘Who’s going to buy it?’ The biggest challenge is not convincing the public, the public is ready for this. But we have to try and identify the various audiences and then show just how
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I know when I was a kid and I saw someone with a physical difference, if I stared I got yelled at, so I looked away. But I realize now that sometimes looking away is more painful than staring. So we have to create some responsibility for all of us to create an alternative to staring or looking away. We have to create opportunities to look in a different way, to steady a gaze long enough that you see beauty in that difference. Once you see it it’s overwhelming and it doesn’t disappear. You stay enlightened and you start seeing it everywhere you go. It’s extraordinary, like The Wizard of Oz, when the house lands in Oz and everything’s in colour. It’s that amazing and it’s that powerful. Photo (above left): Pauline Wells Burzio was full of life and mischief! She loved her friends, school, sports and singing in the church praise band. Living with 18p-, a genetic condition, she endured many surgeries. She died in 2007 at the age of 13 due to a brain bleed after heart surgery. Visit Positive Exposure at www.positiveexposure.org.
Interview by Megan Jones
your kids ‘in bloom’ If you’d like to see your child here, please email a high-resolution photo to lkinross@hollandbloorview.ca. We will try to feature as many as possible.
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Teen blogs open window on life with genetic anomalies Talia Grossman, 12, is an avid blogger for the PEARLS project at Positive Exposure. Besides writing, she loves dance, acting, singing and musical theatre. American Girls, Justin Bieber, friends and spending time with her grandparents are some of her favourite things. She has a syndrome called 18q-.
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Liz Grossman is program director at Positive Exposure, an arts organization that works with and advocates for people with genetic differences. She says she’s seen the success of its kids’ programs firsthand. At two weeks old, Liz’s first child Talia was diagnosed with a chromosomal anomaly called 18 q – . Initially, doctors’ prognoses were grim. “They said ‘You’re going to lose all your friends, you’ll have to put her in an institution, she’s going to live in a vegetative state for the rest of her life,’” Liz says. “When we first heard about it, it was a gut punch.”
Photo by Rick Guidotti
But Talia, now 12, has far exceeded expectations set out for her. Liz believes her daughter’s involvement in Positive Exposure has played a role. Talia is a prolific blogger for one of the group’s latest endeavours, the PEARLS project. The project connects youth with genetic conditions to their peers and to medical professionals. Bloggers who agree to participate write regularly about their experiences living with their particular syndrome. In some cases, if participants are unable to use the technology, family members may write blogs on their behalf. The project aims to be a form of selfadvocacy for writers. Readers use the blogs to further their understanding of diversity and what it means to live with a physical or developmental difference. PEARLS – for pearls of wisdom – started in a New Jersey high school two years ago, and has expanded to over 20 schools, some at the elementary level. Medical professionals and physicians in training also participate as
readers, and bloggers now contribute from multiple countries. Talia writes regularly on a PEARLS blog. Liz says the process has been therapeutic for her daughter. “It’s a tool for her to explore the things that she’s dealing with,” Liz says. “It’s great for her because she all of a sudden has this sense of self-esteem. And we see that with all our other bloggers as well.” The PEARLS project hasn’t reached Canada yet, but Liz says that Positive Exposure plans to bring it to schools across the border soon. “Hopefully it will become a tool that allows people from all over to interact.” By Megan Jones
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Crystal
Life according to
Crystal Chin, 23, came to Canada from Taiwan at age 10 and can’t remember a time when therapy wasn’t a constant in her childhood. Crystal has profound insights about growing up with a disability in a culture that values normalcy.
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Crystal on therapy: My experience was extreme. My mom would drive me to physiotherapy every day, five days a week. Then my dad would come home and do an extra hour of physio with me at night. My mom was a stay-at-home mom and she would do stretching with me and focus on doing up buttons and zippers. My parents wanted to integrate every single bit of therapy into everyday life. For example, they’d help me all the time with how I was sitting and correct me if I was holding my spoon wrong. I had no idea swimming was considered a leisure activity. For me it was aquatic therapy. Crystal’s advice to parents: Have a more balanced life, be your child’s parents, not their therapists, and go out and have fun. There need to be times for therapy, but there should also be times when I’m allowed to be a kid and we can be a typical family. Remember that you can’t get time back. Sometimes my parents look back now and I think they realize what a different childhood I had from my younger sister.
Photo by William Suarez
Try really hard not to compare your child to other children. I always found it interesting that when I was young my parents would say ‘You’re great!’ But then I spent all my time being taken to different doctors who were supposed to fix me. It didn’t really occur to me that I needed to be fixed until I started school. I got to see how other children were developing and that made me worry a little. So why can’t I do this? They can do it. In a way, in the beginning, I really wanted to be fixed. I wanted to be like the other children and I really wanted to have a life. It wasn’t until my early-to-mid adolescence that I had had enough. I wanted to take time off therapy at home and focus on other things. My parents couldn’t understand why. I thought I’m 15 and I want to learn how to cross the street.
What is laundry, and how do you do it? I want to use the microwave. It’s important not to get stuck on one developmental step like walking. It’s important to look at the whole picture. Crystal on self-esteem: Gaining a positive identity was more of a process. You don’t just wake up one day and have it. I always felt I was really ugly because I couldn’t sit up straight and I remember a physio pulled me in front of the mirror and made me point out all the things I see about myself. I pointed out everything CP-related: ‘My knee is bent, I can’t stand up straight, my knee is rotated, I don’t have any balance.’ Then the physio pointed out all the things she saw, and they were all positive. ‘I see this 10-year-old girl who is always smiling, always positive and working hard despite the things she can or can’t do. You’re so cute. You’re wearing pink glasses and a red dress, and your pink shoes match your glasses.’ There were certain triggers like that where I’d say ‘Oh, maybe I can look at myself differently.’ Crystal on social vs. medical advances: We need to advance in the medical field, but we need to advance in how we see things and the way we treat people. What are our values? Where do they come from? Why do we think the way we do? I can take the alphabet, and make it into words, and take the words and put them into sentences, and the sentences into paragraphs and the paragraphs into pages. Good for me. What about people who will never be able to do that for different reasons? Why does society deem them as persons of less value? Everyone has rights, no matter what their capacity. But the way the system is set up, if the person can’t advocate for themselves, they don’t have access to their rights. It’s not a question of medicine. It’s a question of what we value. Crystal is a member of Holland Bloorview’s youth and family advisories.
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‘I manage Carly Inc.’ At the age of two, Carly Fleischmann (above) was diagnosed with severe autism and an oral-motor condition that prevented her from speaking. Doctors predicted that she would never develop beyond the abilities of a small child. Then, at the age of 10, she had a breakthrough when she typed a message on her therapist’s laptop. Seven years later she’s in a gifted program at a regular Toronto high school. Carly’s Voice: Breaking Through Autism, is a new memoir written by her father Arthur Fleischmann, and includes a lot of Carly’s writing. I interviewed Carly’s mom Tammy Starr (inset right, with Carly’s twin sister Taryn, left) about their experiences.
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parenttalk BLOOM: How does it feel now that the book has come out? Tammy Starr: I’m very proud of the book. I knew Arthur had written a lovely and important book. But for me it was nervewracking. Even though my life has been public in my role as an advocate for Carly and other families with children with autism, this was very personal. I’ve been out there as a fighter, but I’ve never had our personal life revealed to this extent. BLOOM: I understand that initially you didn’t read the book. Why? Tammy Starr: I started to read it a number of times but each time I started to cry. It was too hard to take. I knew the story – it was my life – but I found it difficult to relive. It was hard enough to go through it the first time. This book took a lot out of Arthur emotionally. I never would have been able to write it. BLOOM: I can see that Carly having a twin, Taryn, would accentuate the differences in their development and also in how people treated them. Tammy Starr: You can see how one is living a typical, full life on a very normal trajectory and the other one is being left behind in many ways. Carly wasn’t able to hold her ground or keep up with peers, but also, people who knew I had twins would invite Taryn to their child’s birthday party and not Carly. At one point Carly was too young to understand, but obviously there came a time when I’m sure she understood what was going on. BLOOM: It seems they have a special bond. Tammy Starr: More than I can understand. It comes out in the birthday messages Carly sends to Taryn. The other night Carly was having a hard time falling asleep and kept coming out of her room and we were really
tired. Taryn was still up and running around, and I said: “Could you please help us?” I don’t generally ask her to help us. I want to keep her relationship with Carly as a sister not a caregiver. The next thing I knew Carly was giggling and giggling in her bed and Taryn left her room and Carly didn’t come out. They have this closeness, this bond. I really didn’t know in the beginning how much Carly meant to Taryn. I didn’t know if she was an embarrassment or what. There were times in the tween years where Carly did embarrass Taryn, but all kids embarrass their siblings and Taryn’s past that. It’s hard for Taryn. On the one hand, she has all these friends and an active social life and just got her G1 driving licence. And when she leaves the house she leaves her sister behind. But I’ve never said ‘Please include Carly.’ That’s not fair to either of them. Carly doesn’t want to be somebody’s burden. BLOOM: What were the first 10 years of Carly’s life like, before she could type? Tammy Starr: She wasn’t aggressive, but she was destructive to things. You could never leave her alone. She didn’t stop moving. We used to say she was worse than the Energizer bunny. She had these compulsions pushing her and she wouldn’t sleep and we’d lie with her in bed. At one or two in the morning we’d think she was just about to drift off and she’d bolt up in bed and start emptying her dresser. Even though we were fortunate to have help over the years, it was a 24/7 proposition and we always had to be on our guard. If someone wasn’t with her, she wasn’t safe by herself. BLOOM: You mentioned that you and Arthur had different roles in raising Carly. Can you explain? Tammy Starr: In general I’m Carly’s business manager. I manage Carly Inc. I’m the fighter and I’m the one out there in court, but
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parenttalk I’m not her therapist or caregiver. I’m her mother. I make sure everyone is there and everyone shows up and all the pieces are in place. But I’m not the one that delivers her programs. I’m not a patient person. I’ve also been sick a lot. I’ve had chemotherapy twice since the girls were born, as well as depression. Arthur has much more physical and emotional stamina to be in the trenches with Carly. He’s been closer to her on a parenting level. I’m the one who gets all the experts around the table for a team meeting. BLOOM: What has been key in unlocking Carly’s communication? Tammy Starr: The collaboration and dedication and imagination of her two main therapists – Howard and Barb – in terms of delivering programming to her through an Applied Behavioural Analysis (ABA) lens. They were constantly brainstorming about what they’d done and what was next. They never gave up on her and always pushed her. She had a high level of consistency and intervention over many years. All of Carly’s waking hours were delivered in an ABA environment. BLOOM: What about technology? Tammy Starr: The two main ones she uses are WordQ, a word-prediction software developed at Holland Bloorview, and Proloquo 2 Go, a communication software. WordQ allows her to type faster. With Proloquo, Carly will anticipate the words or phrases she wants for different activities and write them on her laptop, and then Howard will program them into Proloquo. Before we went to Los Angeles over the March break, she thought of specific things she’d want to say knowing who she’d be meeting. And before she went to camp she created lots of pages to ensure she wasn’t misunderstood. For example, she has comments like ‘I need a break’ or ‘Don’t take this personally. It’s my obsessive-compulsive disorder (OCD).’ It allows her to explain herself to the world.
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BLOOM: What did you learn about Carly after she began typing that you didn’t know before? Tammy Starr: A ton. We knew she was smart and learning all the time. But we didn’t know she was just like her sister Taryn, except she has this body that doesn’t cooperate. Her brain and her sense of humour are like any other typical kid. I think we’re going to find that common stereotypes about people with autism are so off the mark. We learned Carly has so much empathy and concern for other people and wants to help other people. The idea that she’s closed off and not wanting to be a part of things is a bunch of crap. These kids want to be part of the world and they’re very sensitive and emotional. But they might not be able to show it. We learned Carly was loving and very aware of everything that was going on, but she just couldn’t communicate it. Being non-verbal doesn’t mean being disengaged or not aware or spaced out. It means your mouth doesn’t work. I feel badly about things I said in frustration or anger in the past because we didn’t know how aware she was. BLOOM: What’s something you had wondered about Carly that you asked her after she began typing? Tammy Starr: One of the things I said was “What do you think of autism?” She wrote: “I have it and people don’t want to see it.” At the time her self-esteem was very low. BLOOM: What does Carly’s breakthrough mean for other children with autism? Tammy Starr: We have to assume that that child understands everything you’re saying and speak to them and treat them like any other child. People still speak to Carly’s therapist or me, instead of talking directly to Carly. As Carly says, people talk in front of her back! You can never judge a book by its cover. Never take anything about these
parenttalk kids at face value. There are kids in there and when parents see glimpses of light and intelligence they’re real. And you have to go on that and believe it. BLOOM: How would you describe Carly as a teenager? Tammy Starr: She wants to be a typical teen like everyone else. She wants to go shopping and talk about boys and fit in. She has the same hopes and dreams in terms of school and travel and relationships. She and Taryn both want the same types of things. BLOOM: How did Carly catch up academically once she began typing? Tammy Starr: She’s had little formal academic exposure. It’s been in fits and starts because of placements that worked or didn’t work. But she has a photographic memory and it permeates everything. ‘I’ve never forgotten anything I’ve heard or seen,’ she says. She says she can’t look at things straight on because her mind takes 10,000 pictures. She’s in a gifted program now and she takes a lot of the social sciences. She has an educational assistant with her. The curriculum is modified so that the teacher is satisfied that she knows the work. BLOOM: What are her dreams? Tammy Starr: When she first started writing she said she wanted to work in a bagel store. Now she’s intent on going to the University of California at Los Angeles. We went on a tour while we were there recently. She loves interviewing celebrities and part of me thinks she will be doing something that involves journalism and writing. Temple Grandin is her hero. So perhaps she’ll do something similar in terms of writing and lecturing and travelling.
BLOOM: You mentioned that Carly struggles with OCD. Tammy Starr: When she was 11 she was covered in bruises and we had her admitted to SickKids and they said she’s self-injurious and one doctor thought she was attending to voices. That made us laugh. Later on, Carly told us she was slapping herself to stop herself from doing something more destructive – like stripping the beds or emptying the armoires. It was a coping strategy for the OCD. She was trying to manage her inner compulsions and anxiety. Her OCD is something we still work on with her occupational therapist and social worker. BLOOM: Have you been able to find any balance in your life as a parent? Tammy Starr: When I’m in Toronto it’s full throttle and all-consuming. I get out of town when I can and I call it my autism-free zone. I have a good network of friends, although I tend to isolate a lot. BLOOM: Tell me a bit about your autism advocacy work. Tammy Starr: I have a strong sensitivity for the underdog and to not getting anything less than what a child needs. I haven’t always felt like I fit in and I was bullied when I was a child. So I’ve worked hard to advocate for families in the province who don’t know the ropes. The part I find frustrating is that there doesn’t seem to be a new generation of parents of kids aged five or six picking up the gauntlet. Visit Carlyscafe.com.
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Science
roundup “Hey kids – make mom read this!”
Video games like Wii Fit or Dance Dance Revolution may have physical benefits for some children with disabilities. One Holland Bloorview study published in Archives of Physical Medicine and Rehabilitation found that active games may help children with cerebral palsy by providing therapy focused on specific joints and movements. A second Holland Bloorview study in the same journal found Wii Fit games can improve balance in children and teens with lower-limb amputations. Both studies stressed that while games shouldn’t replace more vigorous, structured exercise, they can be a fun way to complement therapy.
More children with degenerative conditions live to adulthood
The number of children living into adulthood with conditions they were expected to die from is two times higher than previously estimated, according to a study published in Pediatrics. The study found about 40,000 British children live with life-limiting conditions like muscular dystrophy, neurodegenerative disorders or severe cerebral palsy. The number is steadily increasing, especially in the 16-to-19-year age group. Researchers say the study points to the need for specialized palliative care for this growing population.
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Study hints at future treatment to prevent cerebral palsy
Scientists used man-made molecules to deliver a drug that tames brain-damaging inflammation in newborn rabbits with cerebral palsy, suggesting there may be a window of opportunity for preventing the disorder right after birth. The results are published in Science Translational Medicine. Researchers laced the molecules with an antiinflammatory drug to target inflamed brain cells. After the molecules were administered, the rabbits’ neurologic function and motor skills improved. The new approach could potentially treat autism, stroke, Alzheimer’s and multiple sclerosis, but use in humans is a long way off.
Delivery of autism services breaks along race, economic lines The Los Angeles Times reports disparities in the way services and funding are distributed among children with autism. According to the Times, public spending on children with autism in California varies according to race and socioeconomic status. Last year, for children aged three to six, the state Department of Developmental Services spent an average of $11,723 per child on Caucasians, compared to $11,063 on Asian children, $7,634 on Hispanic kids and $6,593 on Black children. Children with autism bullied three times more than their siblings
According to a survey conducted by the Kennedy Krieger Institute, 63 per cent of children with autism spectrum disorder have been bullied at least once. The survey of 1,200 American children also found that kids with autism are bullied three times more frequently than their unaffected siblings. While they were often victims, researchers pointed out that some children with autism may make hurtful comments without realizing their impact. Grades 5 to 8 were identified as the worst years for bullying.
Maternal obesity raises autism risk
A study in Pediatrics found maternal obesity and diabetes increase the likelihood that children will be born with autism or other developmental disabilities. Mothers with obesity were 67 per cent more likely to have children with autism than those without, and twice as likely to have kids with other developmental disabilities. Mothers with diabetes weren’t statistically more likely than those without to have children with autism, but were 67 per cent more likely to have kids with other developmental disabilities. The study does NOT conclude that diabetes or obesity cause developmental disabilities. Instead, it suggests high glucose levels in mothers jeopardize fetal development.
The Times piece explains that the inequalities aren’t necessarily the product of overt or individual racism. Instead, they stem from cultural, economic or language barriers. The children who receive the most funding and treatment are those whose parents fight the hardest – and loudest. Some parents, especially those of lower socioeconomic backgrounds or those who speak little or no English may not have that opportunity. Some parents aren’t aware of all the services available so don’t insist on more. Others don’t have the time or resources to demand more.
How race and class impact children’s health care • A 2012 study published in the American Journal of Transplantation found race/ethnicity and socioeconomic status are linked to medical outcomes of American children with liver failure. Researchers linked minority race and inadequate health insurance to late starts for dialysis, less access to specialty care, and in some cases, longer wait times for transplants. • Black children were less likely than white children to receive medication for stomach pain in U.S. hospital emergency rooms, even when they said their pain was severe, according to a study presented at the Pediatric Academic Societies’ annual meeting in April. Researchers didn’t speculate on why the differences exist.
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Does social pressure to walk prompt too much therapy? This study says yes Like many kids with cerebral palsy, Crystal Chin’s childhood revolved around a single goal: learning to walk. The 23-year-old can list off the interventions she’s received with dizzying speed: orthotics, bracing, physio, Botox therapy, heellengthening surgeries, occupational therapy. “Everything was about ‘If we can just get you to walk. If we can just get you to walk, people will think you’re normal,’” says Crystal, a member of Holland Bloorview’s youth and family advisory committees. From an early age, Crystal learned that walking in our culture meant more than mobility, it conveyed a certain social status.
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In fact, in a recent Holland Bloorview study, standing and walking were identified as signs of worth, dignity and autonomy by children with cerebral palsy and their parents. Both parents and children recognized this social importance of walking, says lead scientist Barbara Gibson, and this affected parents’ rehab choices and perceptions of success. Six children with cerebral palsy and six of their parents were interviewed in the pilot study. All parents described independent walking as the long-term aim for their child, and reported doing everything they could to
researchhits advance that goal. They often experienced anxiety and guilt when choosing to forgo or stop interventions. Many reported feeling they hadn’t done enough if their kids’ therapies weren’t successful. Barbara says these attitudes can lead to an over-emphasis on walking in therapy. While she agrees it’s important for children with cerebral palsy to work at strengthening their muscles and keeping fit, she cautions that focusing too much on walking detracts from kids’ development in other areas. “(Therapy) consumes a tremendous amount of energy, resources, time,” she says. “It leaves less time to just be a kid.”
Barbara says that many parents, particularly those who’ve just received a diagnosis, may have trouble processing the information given to them by doctors. At the same time, some physicians and therapists may avoid providing a prognosis about walking because they fear dashing parents’ hopes. To parents struggling with how much emphasis to place on therapy, Barbara recommends focusing less on walking and more on mobility. That’s because certain ways of moving are more useful to children in particular situations.
Crystal agrees. She says she dedicated so much time to therapy that she was oblivious to activities popular among other kids.
For example, some children find wheelchairs work best at recess or play times because they allow kids to keep up with their friends. Others may like crawling in private spaces because they’re able to navigate physical obstacles more easily.
For example, as a young child, Crystal says she wasn’t aware that kids had birthday parties. At home, board games like Connect Four were used as forms of physical therapy, not fun.
Barbara says that parents of older children reported that they became less preoccupied with their child walking over time, as they became more comfortable with their child’s disability.
While overall she’s thankful to have had access to therapy, Crystal wishes she’d spent less time fixated on learning to walk.
For Crystal, mobility with her wheelchair has taken precedence over walking. She says she only walks about 30 per cent of the time now and likes her wheelchair because it allows her to be independent.
For her, focusing on what she couldn’t do led to a feeling of inadequacy. “It made me feel like I wasn’t good enough because...there were people trying to help me and I couldn’t even help myself,” she says.
When asked if all of her therapy was worth it, Crystal says it taught her to transfer independently from her chair, which is an important skill.
Crystal and Barbara point to the need for candid, ongoing communication between families and professionals to alleviate feelings of inadequacy in children and guilt in parents and help families understand what goals are achievable.
“Yes, there were some gains,” she says, “but I think there needs to be more of a balance. And I can understand how hard that can be for a family that wants something so desperately for their child.”
“It would be great if clinicians felt comfortable saying ‘This is what the child is going to be left with, and you’ve done a great job of getting to this point, but it’s okay to stop,’” Barbara says. “I think parents need to hear that.”
By Megan Jones
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With a little help from my robot
”Z
Research to study the effects of ‘robot’ therapy on kids with cerebral palsy begins this summer at Holland Bloorview. Scientists will test the potential of a robotic treadmill called the Pediatric Lokomat Pro to help kids progress in their walking abilities. The beauty of the robot over traditional, treadmill-style therapies is that it offers support equivalent to two or three therapists, says Holland Bloorview senior scientist Virginia Wright. Often kids need therapists’ support to balance or stay upright on the treadmill, but the Lokomat can do that for them.
Photo by Doug Nicholson
The $400,000 machine – donated by the Three to Be foundation – guides children’s legs and helps them perform proper walking movements, something therapists typically do with their hands. This frees therapists up to watch children’s movements more carefully, allowing them to determine what areas of the body need most attention. They’re also able to concentrate on providing verbal and visual cues and training strategies to try to enhance the child’s motor learning. The $500,000, randomized clinical trial will be co-led by Virginia and Holland Bloorview senior scientist Dr. Darcy Fehlings and funded by CIBC. Forty-eight children aged five to 12 will participate.
Participants will be split into two groups. The first will engage in Lokomat therapy for eight weeks, while the second receives more typical walking-based physiotherapy. Upon completion, both groups will rest for six weeks. Then they’ll switch. Children’s physical abilities will be assessed before and after every stage so researchers can compare the effectiveness of each therapy. While excited about the study, Virginia cautions that use of the Lokomat is still in the experimental stage and its impact isn’t known. It’s likely the device will help some children achieve specific goals, she says, but it may not work well for others. “I think the thing that needs to come out loud and clear is that this is not one-size-fits all,” Virginia says. “That’s why it’s very important for us to have candid conversations with parents about what we’ve found in our assessments and what would be reasonable in terms of walking, functional and participation goals.” Three to Be is a foundation led by Dana and Jared Florence, who have triplets with cerebral palsy. By Megan Jones
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Thank you to the Coriat family! David and Lynn Coriat, with daughter Jessica, know the importance of information and support in raising children with disabilities. That’s why they donated $100,000 to BLOOM magazine, enabling us to reach more parents and professionals in print, online and in person. In addition to funding our 2012 print issues, the Coriats’ donation enabled BLOOM to develop a video and speaker series and increase the international dialogue on childhood disability issues. David and Lynn Coriat are true Champions of Childhood Disability. The Coriat family has also donated $1 million to Life Skills programs to ensure that Holland Bloorview will always offer youth with disabilities opportunities to acquire skills to transition into active and independent adults.
Holland Bloorview Kids Rehabilitation Hospital: 150 Kilgour Road, Toronto, ON M4G 1R8 | Tel: 416-425-6220 | www.hollandbloorview.ca
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