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A World of Possibilities

By Adelle Purdham We are standing on a beach somewhere along the infamous North Shore of Hawaii, on the island of Oahu. I have my toes tucked beneath the sand and I’m feeling nervous. One hand rests on my hip while the other cups my forehead, shielding my eyes from the blinding sun that bleaches everything white. I’m scanning the waves, sizing them up; the waves are what the beach is famous for. These are the ocean waves we will be riding. Standing nearby is my husband, Dan, and our three young girls, Ariel, Elyse and Penelope. We are on a forty-five-day family trip around the world, taking us from Toronto, ON to San Francisco, CA and the Hawaiian Islands, then onward to Japan, Thailand, and finally a week in Portugal to complete the trip before heading back home. Surfing in Hawaii is one of a handful of experiences we have been looking forward to for years. The waves are intimidating, but there’s no backing out now. Our eldest daughter, Ariel, is eight years old. She took skateboarding lessons and was the most enthusiastic about surfing beforehand; now, taking in the dramatic scene of the surf, she’s less sure. Penelope is three years old and our youngest child. I didn’t think it was possible to take a three-year-old surfing, but with the help of expert surfers and a tandem method, Penelope will also be out catching waves – she just doesn’t know it yet. I later learn from our photographer that even babies surf in Hawaii: he took his firstborn out at six months old, which he admits may have been “pushing it,” but I digress. Then there’s Elyse, our middle daughter, who is on the cusp of seven years old and has Down syndrome. There was a time before she was born when I questioned what she would be able to do. Know your child. Elyse is not the wild, adventurous type. She is not the steadiest on her feet at the best of times. She does not particularly enjoy standing on top of moving objects, is often resistant to change, and takes a while to adjust to new experiences. To say surfing on the North Shore would be pushing Elyse’s boundaries is an understatement. Oh, and neither Elyse nor Penelope can swim. When I wrote to the surfing company we eventually hired to inquire, I expressed my concerns about our younger two. In response, the owner – a veteran surf goddess – assuaged my doubts about safety and sealed the deal with her final comment. “I think it’s going to be super fun.” So here we are, practising our surf moves atop surf boards on the sand. We are wearing long-sleeved rash guards with bathing suits underneath. Elyse is really enjoying the warm-up. She is laying down atop her board on her stomach, imitating the cupped hands, arm swinging movement we will need to use to propel ourselves forward through the water. Now she’s crouched down low, arms out for balance, feet apart, knees bent, standing sideways, looking like a real surfer chick. I feel a degree of anxiety lift as I see her attempting each movement on dry land. We look the part, but I can’t help but wonder what is going to happen when we actually get out on the water. The moment of truth. The time has come to get our feet wet, and all three kids look like they want to bolt. Penelope and Elyse do actively run away. With a big crew of helpful adults, our convoy convenes toward the water and what happens next is hard to explain. Like a car accident, everything happens fast. The next thing I know, all five members of my family have been towed out and we’re bobbing in the ocean. Dan and Ariel, each on their own board, are being led away to be pushed into their first wave. I’m craning my neck to try and keep my eyes on them, but with the distraction of my youngest two and the rise and fall of the waves, it’s near impossible. I just have to trust and keep my fingers crossed that our instructors know what they’re doing and that everyone is going to be okay. Elyse, Penelope and I are in the holding area, a safe place to wait until it’s our turn to surf. Penelope has been moved onto my surfboard for safe keeping and she’s clinging hard to my neck. Elyse is lying flat out on her surfboard and it’s pretty clear that she’s terrified and wants her daddy. Both of them are wailing. I see Ariel in the distance; she makes it to her knees then crashes hard from the force of the wave. I can’t see her resurface. In moments like these, you start questioning the parenting decisions that have led you to this point. Why did I think it was a good idea to take our kids surfing in the Pacific Ocean? What if something bad happens? Why am I putting them through this? Eventually, as the calm of our instructors rubs off on them and they habituate themselves to the movement of the waves, the younger two settle down. The owner surf goddess scoops Elyse up onto her board and away they go, off to catch her first wave. Surf goddess even gets Elyse to stand up on her first attempt. I wish I could say Elyse loved surfing, but truthfully, she didn’t. She found the experience to be scary and overwhelming. But would I change what we put her through? Absolutely not. Elyse hung in there for a second surf attempt, this time on her stomach facing the shore, and there’s an incredible shot of her crashing through a wave, face first, eyes wide open with a hint of realization of what she has achieved. She did it. She conquered that wave. And if she can conquer her fears and a wave off the North Shore of Hawaii, what else can she do? While surfing wasn’t Elyse’s first choice, we planned other excursions we hoped would be more her speed. True to character, in new situation after new situation, Elyse struggled to a degree, at least initially. At the start of our rainforest hike through the jungle in Thailand, Elyse refused to budge. Arms crossed, she stood firmly in place. “I want food.” Know your child. Luckily, I came prepared with snacks and so did our guide who not only provided fresh coconuts from his family’s farm, but he also packed some of Elyse’s favourites: chips and Oreo cookies. Elyse found the several kilometres walk in the blanket of heat to be challenging, as we all did, so Dan carried her most of the way. When we chanced upon gibbons, tree dwellers for life that live in the rainforest cover, I encouraged her to crane her neck to look up and see them, but she wasn’t interested – not in that moment. Near the end of our hike, Ariel spotted a vine in our path, and that caught Elyse’s attention. She monkeyed around with her sisters and was compelled to hang around, just like those gibbons she supposedly wasn’t paying attention to. In Japan, we stayed in a traditional Japanese Inn, a ryokan, where it was customary to wear a robe called a yukata and slippers for the duration of your stay. Unlike her sisters, Elyse initially refused the yukata, which was fine. When she attempted to wear the slippers, our flat-footed girl whose feet turn outwards sent them flying off with each step. Then there was the food. Elyse, typically a hearty eater, was beside herself. On the eve of our first dining experience, tired and jet lagged from travel, decadent course after course was delivered to our table, a gastronomic feast and pleasure for the senses – but completely foreign and mostly unidentifiable to our Canadian eyes. Elyse was having none of it. “Pizza,” she moaned, “I want pizza.” Penelope, for her part, curled up in a ball and fell asleep on the floor while Ariel poked questioningly at her plate. Elyse did eventually find her staple food in Japan. Rice and fried chicken is a common dish and Elyse had her fill. In Northern Thailand, I organized an excursion to an elephant nature reserve. I didn’t realize we would be face-to-face and without enclosures amid the giant beasts, but was delighted to discover this would be the case. Animal encounters for Elyse are hit or miss; sometimes she coos, other times… she screams. One day she might purr at a cow and get dangerously close, the next she might wail at the sight of a kitten. It just depends on the day. I was nervous about how our morning with elephants would play out, but having already survived surfing in Hawaii and eating in Japan, Elyse seemed to draw some confidence from her newfound worldliness. She was enthralled by the educational video that played in the car ride on the way to the reserve, and helpfully repeated every line. Elyse isn’t quiet about her fears, but she’s honest about them, and the people we’ve traveled with seem to appreciate that about her. She clung to her dad when we first saw the elephants, but eventually became relaxed and comfortable enough to rest her hand atop of an 86-year-old gentle giant. She pet that grandma elephant and told her she was a good boy. Our elephant encounter taught our girls about real, unrehearsed danger. When the elephants back up, you get out of the way – quickly! When her sisters fearlessly leaned in to feed the elephants pumpkins with their bare hands, Elyse eventually got in there too, choosing instead to toss the food in the elephant’s direction. Those morsels did not go unappreciated. The focal point of our six-week trip was a lantern festival in Thailand called Loy Krathong. We signed up for a boat ride that departed from our riverside hotel and carried us into the heart of the festival in the old downtown of Chiang Mai. In retrospect, this is the only way our family could have safely enjoyed the experience, as we could see the crowded streets and packed bridges from our boat ride and our little family would have been engulfed by the masses. Knowing my middle daughter, I knew the evening of the festival would be particularly challenging for Elyse for several reasons: the late night, the bright sights, the loud and unexpected sounds, the shiftiness of the boat moving through the water, and the novelty of the situation all spelled potential disaster. I cringed at the thought of the stress I would be putting Elyse through. But when weighing the pros and cons, I decided the experience of thousands of floating lanterns in the water and sky would be worth it. To mitigate the overwhelming sensory experience, we did something we never wanted to do – we brought earphones and an iPad. While I could have allowed myself to feel shameful about this parenting move, instead I felt relief. After showing signs of distress, we gave Elyse the device and she was then able to experience the festival at her own level. Our boat reached its destination and we were thoroughly enchanted by the experience of thousands of glowing lights rising in unison. At the height of the beauty and chaos, Elyse chose to take off her earphones and she came to join me, putting her little hand on my shoulder. Together, we released a krathong, a candle-lit banana boat, into the water on behalf of our family. It was a beautiful moment, and if I had insisted Elyse do things my way, it would never have happened. Now we’re on the shores of Koh Samui, a tiny island surrounded by jellyfish-infested waters. Elyse and I are sitting just the two of us, reading books in sling back chairs facing the ocean. Elyse loves looking at books. I have asked nothing challenging of my family at this stop. No ocean surfing or strenuous hikes. We are purely on a beach vacation. A lone tropical bird flutters in and settles itself close by on the chair in front of Elyse and me. The bird’s startling tune, both haunting and lovely, catches my attention, and when I look over at Elyse, I see she’s also watching the bird with interest. I’m watching the little bird closely now, drawn in by its song, which once upon a time I may have been too busy or too distracted to hear. I am enjoying the bird’s song immensely; its melody is intermingling with the soothing sound of the breaking waves and sweet blowing wind. While travel is about going places and doing things, it’s also about being in the moment with the people you love. Now that our trip is over, I look at each of my children differently. I am in awe of their accomplishments; in the face of hardships and obstacles to overcome, they persevered. I’m more ready to let them be the ones to show me what they can and cannot do because out in the real world, unrehearsed, that’s how it all played out. There was a time before she was born when I questioned what Elyse would be able to do. Perhaps a better question to consider these days is what won’t she be able to do? But why ask that? The possibilities span the globe. I cannot wait for our next family adventure, wherever it may be. I know it’s going to be super fun.
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Latest News

27/04/2020
We are proud to present DSRF's Annual Impact Report for 2019. The second year of our five-year strategic plan was a success, with a number of major strategic priorities achieved. Thank you to all who invested in empowering individuals with Down syndrome over the past year! Just as it has for every person, business and charitable organization in Canada, the COVID-19 crisis swiftly and completely changed the landscape for the Down Syndrome Resource Foundation. We take very seriously our obligation to protect the health and safety of our clients, families, volunteers and staff, and as such we were an early adopter of social distancing practices. Ultimately, on March 17, we closed our doors to the public and instructed all staff to work from home until further notice. Services for Families Within days, everything had changed for DSRF – both practically and financially. We were fortunate in that the first two weeks of closure coincided with our scheduled spring break, giving us a couple weeks to reimagine how we could continue to deliver our programs and services in the time of COVID. By the time spring break ended, we were ready to begin hosting our adult educational programs via videoconferencing. A week after that, we unveiled newly developed one on one teleservices, delivering both individualized therapy sessions and parental consultations to families in their homes – services that have been very gratefully embraced. One family shared that DSRF is "the most important element in their child’s life, even more so than school." It’s a sentiment that seems to be shared by many of our clients. Meanwhile, we are also being contacted by families outside our regular service area who are interested in partaking in remote services. Even as we pivoted our programs and services, our team also got to work developing a new resource: a "Learn At Home" section on our website (http://DSRF.org/LearnAtHome), where we post one or more home education exercises each day, including free downloadable materials so that parents can do it themselves. Our teachers and therapists have gotten very creative, filming demo videos for various skills. These posts have caught the attention of not only our current families, but the worldwide Down syndrome community and other homeschoolers. This has driven our highest-ever web traffic numbers, raising our average daily web views from approximately 500 to over 800. Just last week we had our highest daily web views in DSRF history, and April 2020 will be our best month ever - beating the previous monthly record by more than 50%. One of the few silver linings of our current circumstances is that we are expanding our reach beyond our immediate geographic area through our wealth of online learning resources. Funding While our program team reimagined their whole approach to caring for families, we also had to come to grips with our new financial reality. Understanding the strain and uncertainty many of our families are facing, one of our first decisions was to make all DSRF programs and services available free of charge to families in financial need for the duration of the COVID-19 crisis. Under normal circumstances our programs and services are highly subsidized by fundraising, but nevertheless, program fees represent approximately 25% of our annual revenue. Forsaking just a portion of these fees would take a major bite out of our budget, but we felt this was an important step to take for our families when they need our help more than ever. Approximately half our families receive public funding from external sources which they use to cover DSRF services. This has allowed us to continue collecting program fees from those families who receive funding, which in turn helps us to offer free services to families who don’t have this kind of funding. We have also expanded our bursary program to include more families facing more serious financial challenges including those at or below the poverty line (see http://DSRF.org/funding). There remains a significant gap between the funds coming in from program funding and emergency government support, and the cost of maintaining our operations for the duration of the crisis. In order to meet this need, our fund development team – much like our programs team – has quickly changed course, making difficult decisions about some of our upcoming events and campaigns, and working to identify new funding opportunities. In the short term, Up the Down Market Toronto was rescheduled to October, while Up the Down Market Calgary has been cancelled. Run Up for Down Syndrome – our biggest annual fundraising event, has been reimagined as a virtual event: Run Apart for Down Syndrome (http://DSRF.org/RunApart). We are inviting supporters to participate as virtual runners, and run or walk in and around their homes on June 7, with some fun additional activities online. We are also asking participants to proceed with their fundraising as they usually would. We have, however, drastically lowered our expectations for the event. The Future Looking ahead, we expect that COVID-19 will have a long-lasting and significantly detrimental impact on our fund development. Whether we are able to proceed with the three Up the Down Market Dinners scheduled for this fall is an open question at this time, and even if we can, it remains to be seen the extent to which the economic downturn will impact their success. Once our centre reopens, and assuming the emergency wage subsidies will end in short order, we will face tremendous pressure to restore our fund development to meet needs amidst a very difficult economic environment. In the meantime, however, our focus remains fixed on caring for our families during this time when they need us most and ensuring that DSRF continues empowering people with Down syndrome through the COVID-19 crisis and beyond. To do so, we need your help. We understand that these are difficult times for everybody, and not everyone can afford to give right now. But for those who are able, your support now means more than it ever has. You can rest assured that we are stretching every dollar for maximum impact. We would like to suggest two ways to help if you are able to do so: 1. Join us on June 7 as we Run Apart for Down Syndrome! The entry fee is just $10. Invite your friends and family to join you in doing BIG things for people with Down syndrome by donating through your page or participating themselves. Visit http://DSRF.org/RunApart to get started. 2. Become a Triple-21 monthly partner. Many people find it’s easier to give a small amount each month than to make a larger one-time gift, especially during difficult times. Your $21 a month will add up to a big impact in the lives of students with Down syndrome. Learn more and sign up at http://DSRF.org/Triple21. Whether or not you are able to give at this time, please know that we you are deeply grateful for your support through the years, and we wish you and your family good health as we face this challenge together. Sincerely, Wayne LeslieChief Executive OfficerDown Syndrome Resource Foundation
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06/04/2020
April 6, 2020 To: All DSRF families RE: COVID-19 Update – DSRF Services Restoration Dear DSRF Parent, I am very pleased to be writing you for the specific purpose of providing more definitive details about the restoration of DSRF’s essential 1:1 Speech & Occupational therapies, Education and Mental Wellness services, as well as group programming. I am sure you are equally happy to be receiving this information. I will start by thanking you for your patience and encouragement as our team of dedicated specialists and support staff worked extremely hard to adapt our services and programs to a new tele-service online system. This includes members of our fund development team and senior management who have been working equally hard to secure the necessary financial resources that supports DSRF’s work and ultimately, your family.  We recognize that along with the serious health concerns being faced, the current situation continues to place many of our families under financial pressure. For this reason, DSRF remains committed to providing all programs and services free of charge. This will be done through the continued use of approved individual family financial funding from sources like At Home Program (AHP) and Autism funding, as well as DSRF’s Bursary Program for families who do not currently have funding from other sources. Through this supportive financial framework, families will not have to pay out of pocket at a time when doing so might mean choosing between getting the essential services their child needs and another essential need like food or shelter.  At the Down Syndrome Resource Foundation, YOU ARE FAMILY and we will do everything within our power to make sure no member of our family is left behind. Our funding partners like AHP and Autism have been very supportive and flexible by agreeing to broaden their guidelines for the types and amounts of services (e.g. adapted 1:1 sessions, consultations, etc.) they will fund. This helps families access the types and style of services that best meet their needs. Like DSRF, these funders believe that freedom to self-direct access to services is more important than ever at this time. Further details about this and other similar agencies we are working with to secure flexible funding, will be provided directly to families in the coming days. For families without funding from other sources, DSRF’s Bursary Program is being changed to support you. This includes creating a rolling intake process with revised guidelines until further notice to address the current financial realities that families are facing due to things such as sudden loss of employment. Further details and application information for DSRF bursaries will be provided in the coming days. I would also like to take this opportunity to encourage you to contact us if you have questions about this information or any other aspects of DSRF’s programs and services at this time. While our facilities may be closed, our dedicated team is most definitely still open for business. Nimet Tejpar, our Programs & Operations Coordinator, is at our virtual front desk to assist families and direct them to the right DSRF people and/or solutions. She can be reached by phone (604-444-3773, Ext.101) or email (nimet@dsrf.org). The entire DSRF team is looking forward to the day when we can welcome you back in person. Until then, we encourage you to continue following the advice of officials to keep yourselves healthy and safe so that when we collectively emerge from this crisis, our Down syndrome community will be stronger and more unified than ever. Yours sincerely, Wayne Leslie Chief Executive Officer
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24/03/2020
Hello DSRF families, We hope you are all staying safe and healthy during these incredibly altered times! We want you to know that we are all working very hard to get telepractice sessions up and running for our DSRF students in lieu of in-person therapy and teaching. This model of service delivery is new to DSRF, so we ask for your patience both with beginning the service, as well as working out any glitches that may come up as we move along. To provide enough development time for this new service, we will delay the start of therapy and teaching sessions at the originally scheduled block start (March 30th). However, we expect to contact each family individually within the first two weeks of this block to begin the process. During this period, we remain committed to providing our services at no charge to families who need it most. However, we have also heard from families who have funding for our services from other sources. For example, the Autism Funding Unit and the At-Home Program have both confirmed that they will fund telepractice sessions. Families have asked that this funding be used to pay for the services they receive, to assist DSRF in providing no-cost services for families who do not have other funding resources. We are deeply grateful, but not surprised, that our community is pulling together in this fashion. As a result, we will work with individual families to assess needs and alternative funding opportunities. In the meantime, stay tuned to our social media and our new section on the DSRF website for ideas around activities you can do at home: Learn at Home http://dsrf.org/LearnAtHome. We'll be adding one or two new, fun things each day! Stay strong, everyone! Susan Fawcett and Eleanor Stewart
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17/03/2020
March 17, 2020 To: Our Community Fr. Wayne Leslie, Chief Executive Officer, Down Syndrome Resource Foundation RE: COVID-19 Update – DSRF Services & Support I wanted to personally reach out to DSRF families, supporters and British Columbians to provide an update on actions DSRF is taking to support local and provincial efforts to prevent further spread of the coronavirus and protect the health, safety and well-being of BC’s Down syndrome community. Since closing last week for our usual Spring Break, we have continued regular cleaning of our facilities and limited staff activity at these locations to enhance and preserve cleanliness. As a result of today’s announcement by the Province of BC that schools will remain closed and in-person services are suspended indefinitely, DSRF will also remain closed and is suspending all in-person services indefinitely. We recognize and acknowledge the difficulty this imposes for families who rely on us. We do not take suspension of our essential services lightly, but the health of our families, the health of our team members and the health of British Columbia, is foremost in our mind. We believe an integral part of this approach is being completely in step with the guidance and actions that government and health officials are taking to protect organizations like DSRF, such as schools. We are continually monitoring this situation and in contact with the appropriate agencies to stay on top of the issue. In the interim, our dedicated team of specialized therapists, teachers and support staff are developing strategies to provide continuity of care and a level of service and support for our families to help them through this very difficult time. We anticipate these will include options for clients, students and parents, to speak directly with members of our team either by phone or online. We understand that along with the serious health concerns being faced, the current situation may be placing families under immense financial pressure. For this reason, and until further notice, all DSRF services will be provided free of charge. We hope that in some small way, it gives families of individuals with Down syndrome comfort knowing their health, safety and well-being remains our #1 priority. I would also like to take this opportunity to thank the supporters who have contacted us asking how they can help, in their own way, our efforts to protect and assist those who are most vulnerable during this unprecedented crisis. We are humbled by your willingness to think of others during what we know is also a difficult time for yourselves. For the past 25 years, DSRF has provided essential services to British Columbia’s Down syndrome community, through good times and bad. We remain resolute that, working together, hand-in-hand, we will successfully navigate this very challenging period. Sincerely, Wayne Leslie
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Down Syndrome Resource Foundation
1409 Sperling Avenue, Burnaby
British Columbia, Canada
V5B 4J8

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