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The Wonder

By Sue Robins My youngest son is now 16 years old. The trajectory of our entire family’s lives changed when his doctor uttered the words ”Down syndrome.” Years have passed, the intense grief has faded. I’ve realized that there is loss associated with parenting all children. No child is perfect and all children are hard work. But with typically developing children, we learn this lesson gradually as they grow up. With our kids with Down syndrome, we are told this immediately upon diagnosis. For me, it felt as if I had been hit by a truck. We must honour the healing that comes from the dark times. For many months, I was mourning the loss of the so-called perfect baby. Looking back, there were many factors that helped me move forward to see the light again. My personality is good for people – for love – like my family. – Aaron Having Aaron in our lives has changed our entire family. He has infused all of us with wonder. His two older siblings were 6 and 9 when he was first born. His sister Ella, who is now 23 and a pediatric nurse, says that Aaron taught her at an early age to be more patient and inclusive, accepting and non-judgemental. Aaron’s older brother Isaac shares similar sentiments, adding that Aaron has greatly strengthened his compassion. And Mike, Aaron’s dad, emphasizes that Aaron has challenged him in ways he didn’t expect, but also warns not to underestimate your child’s ability to learn or enjoy the things you enjoy. For example, Aaron loves swimming competitively, watching hockey and eating hamburgers just like his dad. The majority of children’s genes come from their mom and dad – it is only the one chromosome that is extra. Our kids are more like us than they are like Down syndrome. Ella once said to me, ”I wish other people could see Aaron as I see him.” This is why it is so important for all people who work with children with disabilities – health care professionals, therapists, educators – to take the time to understand the actual reality of families. Often people have stereotypes of disabilities stuck in their head, just as I had when Aaron was first born. We all must confront our own ableism if we are to create inclusive environments where everybody belongs. Aaron has taught me that different is not bad; it is just different. Much of my own suffering in life comes from pining for a different life. I had to move through acceptance to celebration of Aaron in my own time. Yes, some things are harder, but the important things require hard work. I’ve also discovered that I can do hard things. Families need to know that they and their child can – and will – live a good and rich life. Professionals can help by sharing authentic stories of other families, reminding them to take care of themselves and connecting families up with other families. But the most crucial thing that people can do when working with families of disabled children is to be aware of their own personal values about disability. It is their responsibility to do their research and check those values against the actual lived experience of families and children. For it is love, patience and faith that will help guide a families’ way. Health professionals - in particular - are in a unique position to help families begin their child’s life as a celebration and not a tragedy. This is a chapter from Canadian author Sue Robins’ new book called Bird’s Eye View: Stories of a life lived in health care. Sue was unexpectedly immersed in health care as a mom when her third child was born with Down syndrome in 2003. In 2017, Sue became a patient when she was diagnosed with breast cancer. This book was written with health professionals in mind to encourage more humanity in health care by sharing stories about how it feels to be the mom of a child with Down syndrome and a cancer patient. Bird’s Eye View is available on Amazon.ca. Sue’s website is: www.suerobins.com.
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Latest News

16/10/2019
FOR IMMEDIATE RELEASE: October 16, 2019 CONTACT: Glen Hoos, Director of Communications – 604-444-3773 | glen@dsrf.org | http://DSRF.org Local Martial Artist with Down Syndrome Becomes World Champion BURNABY, BC – Darryl Andaya is no stranger to extraordinary accomplishments. Through nine years of intense dedication and hard work at his family’s studio in Burnaby, he earned his black belt in taekwon-do – a lofty achievement made even more impressive by the fact that Darryl has Down syndrome. Darryl’s excellence in the martial arts propelled him all the way to New Zealand, where he represented Canada earlier this month at the inaugural International Special Needs Taekwon-do Games. There, he made history by becoming one of the first ever Special Needs Taekwon-do World Champions, winning two gold medals, one silver, and one bronze. As the one-man Canadian team, Darryl placed fourth among all nations and quickly became a fan favourite. “Canada was well-loved and other countries chanted ‘Canada!’ every time Darryl went on the mats,” says his father Darius, owner of DSA Taekwon-do. “Darryl made lots of new friends from other countries and hopefully he can make it to the next one in the Netherlands in 2021.” The medals he earned in New Zealand are not Darryl’s only accolades of late. Before jetting off to the Games, he added another prize to his burgeoning trophy shelf: the 2019 George Klukas Achievement Award. Presented annually to a student of the Down Syndrome Resource Foundation by DSRF Board member George Klukas in recognition of significant improvement and success over the past year, the prestigious Klukas Award celebrates the achievements of an older teen or young adult with Down syndrome. Darryl, 19, has completed years of speech therapy at DSRF, as well as participating in the popular Music in Motion program. Through his work at DSRF, Darryl has begun to speak more and become better able to vocalize his thoughts. He has become more confident and increasingly independent, making his own decisions and learning how to use the transit system. Darryl's growing communication abilities, social skills, decision making, and athleticism have helped him in his transition to adulthood and in his development as a martial artist. From an early age, his perseverance and strong spirit have been clear, and have enabled him to achieve things that other people never thought he could do. In addition to competing, Darryl also teaches taekwondo to young children, including children with disabilities. In conjunction with the Down Syndrome Resource Foundation, DSA Taekwon-do offers weekly classes for young people with Down syndrome. Darius hopes that many of these students will follow in Darryl’s footsteps. “Two years is a long time,” he acknowledges, “but if they stay motivated, I can see some of our students going to the championships and experiencing what we just did.” For more information on DSA Taekwon-do, visit https://dsataekwondo.com. For more information on Taekwon-do for individuals with Down syndrome, and other programs and services offered by the Down Syndrome Resource Foundation, visit http://DSRF.org.
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16/10/2019
The Lohn Foundation has been a consistent supporter for 6 straight years, investing $18,000 in individuals with Down syndrome in that time. They are making a real difference through DSRF's educational programs, and we're grateful for their 2019 donation of $3,000.
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26/07/2019
For the fifth consecutive year, the John Hardie Mitchell Family Foundation has made a generous donation in support of the Down Syndrome Resource Foundation's educational programs for individuals with Down syndrome. The Foundation's $2,000 investment for 2019 will help students develop critical skills in the areas of reading, math, communications, speech, and more. We are so thankful for their ongoing support!
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22/07/2019
RBC Future Launch has generously invested $20,000 in the Down Syndrome Resource Foundation’s transitional programs for young adults with Down syndrome, including Reading and Communications Plus, Social Communication and Navigation, and Money Math & Budgeting. These programs equip individuals with Down syndrome with skills that are essential to their success in the workplace and their ability to live independently. DSRF is proud to be partnering with RBC for their RBC Future Launch initiative. Together, we will prepare individuals with Down syndrome find meaningful work and bring their unique contributions to our society. “We’re excited to be working with the Down Syndrome Resource Foundation to help bring RBC Future Launch to life,” said Valerie Chort, Vice President, Corporate Citizenship, RBC. “We have a responsibility to prepare all young people for the opportunities and ambiguities of the future, including those with developmental disabilities. RBC Future Launch is a decade-long commitment to help Canadian youth prepare for the jobs of tomorrow.”
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Down Syndrome Resource Foundation
1409 Sperling Avenue, Burnaby
British Columbia, Canada
V5B 4J8

Fax: +1 604 431 9248
Phone: +1 604 444 3773
E-mail: info@dsrf.org
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