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The T21 Difference

Susan Fawcett, PhD, RSLP/Director of Therapy, Behaviour & Family Support, Down Syndrome Resource Foundation and Glen Hoos, Director of Communications, Down Syndrome Resource Foundation Reprinted from 3.21: Canada's Down Syndrome Magazine (Issue #2: Let's Talk Advocacy). Click here to download the full magazine. The 21st chromosome is small, but powerful. Having an extra copy of this tiny slice of genetic code, as people with Down syndrome do, can impact an individual in a plethora of ways. Physically, people with Down syndrome may exhibit a variety of characteristics, such as a flat bridge of nose, a simian crease on the palms, extra space between the big toe and its neighbour, an extra fold of skin around the eyes, widely spaced and upward-slanting eyes, straight hair, structural differences in the mouth and ears, short stature, and more. Healthwise, individuals with Down syndrome may be extra susceptible to a whole range of health problems, including heart defects, hearing problems, sleep disorders, gastrointestinal issues, dental problems and many other comorbidities. Developmentally, people with Down syndrome exhibit neurological and cognitive differences, intellectual delays, behavioural and mental health issues, speech deficits, memory impairment and more. It goes without saying that all these issues will have a major impact when it comes to learning. As parents and professionals seeking to help our daughters, sons and students reach their full potential, it is incumbent upon us to understand how each of these factors impacts their learning and development – and then craft our approach to fit how they learn best. As we consider the learning strengths and challenges of children with Down syndrome, we will admittedly be forced to generalize. Never forget, though, that every person with Down syndrome – just like every other person – is a unique individual. Down syndrome impacts each individual differently, and any given person will have their own strengths and weaknesses that may or may not align with what we would expect. The number one rule is know your child. Strengths of Children with Down Syndrome In the Hebrew language, there is a pessimistic equivalent to the phrase “rose-coloured glasses”: black-coloured glasses. Though we would hope this is beginning to change, when it comes to Down syndrome, the world sadly views the condition through black lenses. It’s so easy to focus on the negatives and only see the challenges. All too often, parents find themselves leaving doctor’s appointments and teacher meetings feeling discouraged and defeated. However, those of us who know and love people with Down syndrome know that there are many strengths and positives associated with Down syndrome. So, let’s start there! In fact, every IEP or learning plan should begin with a list of the student’s strengths. Success in learning isn’t just a product of overcoming or compensating for perceived weaknesses; it also requires understanding the learner’s strengths and teaching in such a way as to maximize and build upon them. With respect to learning, people with Down syndrome often have the following strengths: Empathy and social motivation Musical/dance ability Gesture use Visual learning Receptive language, particularly vocabulary Certain aspects of literacy development When we start from a place of strength, it will help us figure out what to do about the challenging stuff! Challenges for Children with Down syndrome That extra 21st chromosome has a long reach, touching virtually every aspect of a person’s being including health, physical and sensory issues, cognition, behaviour, mental health and communication. Each of these areas has a significant impact on a child’s ability to learn academic and life skills, and to participate fully in a classroom amongst peers. Health Often when a child struggles with learning, we assume it’s a cognitive or behavioural issue. In many cases, however, there’s a health challenge at the root of the problem. Addressing any underlying health concerns can work wonders for a child’s ability to learn and development. Medical issues to be aware of, check regularly, and act upon quickly include: Vision problems Hearing difficulties Sleep disorders Ear and/or respiratory infections Nutrition deficiencies Gastrointestinal issues Dental problems Thyroid abnormalities Anemia or low iron High red or white cell counts Atlantoaxial instability Hearing is a huge issue for kids with Down syndrome. They are very prone to ear infections, as well as fluid buildup in the middle ear. This can result in fluctuating hearing loss, which can appear an awful lot like selective listening and make it very difficult to learn. Sleep disorders such as sleep apnea and restless leg syndrome are extremely common in individuals with Down syndrome. In fact, upwards of 80% of children with Down syndrome have at least mild sleep apnea (stoppages in breathing throughout the night, depriving the brain of oxygen and preventing the person from entering into the crucial deep REM sleep). Poor sleep affects not only the next day’s behaviour, but it also has cumulative detrimental effects over years. It is strongly recommended that all children with Down syndrome be assessed for sleep apnea via a polysomnogram (sleep study) by the age of four. There are effective treatments, and they are easier to implement when the child is young. Parents must be proactive about health issues. Many young people with Down syndrome can’t express when they aren’t feeling great because of communication difficulties. Visit for links to the Canadian Healthwatch Table and the American Academy of Pediatrics health guidelines for individuals with Down syndrome. Physical and Sensory Challenges Factors that affect development of gross and fine motor skills include: Low muscle tone Decreased strength Hypermobile joints Decreased activity tolerance & endurance Difficulty maintaining postural stability (may fatigue more quickly due to the extra effort required) Even something as seemingly effortless as sitting takes more effort for a person with low muscle tone and a weak core. In addition, many individuals with Down syndrome face complex sensory issues. Approximately 49% of individuals with DS experience sensory processing difficulties compared to approximately 5-16% of the general population. Sensory processing refers to the ability to take in, organize and make sense of the sensory information received by the brain from the sensory systems, and respond appropriately. There are six sensory systems, five of which you are no doubt familiar with: sight, sound, touch, taste, and smell. The sixth is our proprioception and vestibular sense: how our body is positioned in space, and our sense of balance. A child can have sensory sensitivity (an over sensitivity to specific sensory input), or they can be sensory seeking (under sensitive to specific sensory input). In the first case, they may be fearful or avoid certain sensations, and become easily alarmed by unexpected loud noises. In the latter case, the child will require more intense sensory input to be regulated and will seek out greater than average amounts of sensory input. For example, they may intentionally fall or bump into objects or people. In either case, sensory processing issues are a barrier to inclusion. The child may have trouble staying in the classroom with lots of other students around. Cognition People with Down syndrome actually have structural and functional differences in the brain compared to typically developing people. For example: Decreased growth in frontal lobes. This is where our ability to plan and organize takes place. The Marie Kondo types out there have lots of neurons firing in this region! The frontal lobe is also responsible for our ability to control our impulses. Decreased volume in brainstem and cerebellum. These parts of the brain control basic functions of life support, as well as balance and coordination. Differences in temporal lobe and hippocampus structure and function. The temporal lobe controls the ability to process auditory information (what comes through the ears), including language. The hippocampus is responsible for memory. These brain differences have significant consequences. They result in a reduced ability to process information, particularly auditory information. If a child doesn’t understand what’s going on, this may increase the likelihood of noncompliance – a very common issue for kids with Down syndrome. In a typical school day, teachers may give upwards of 300-400 questions and directions to students. That is a lot of auditory information! Add in fluctuating hearing loss and you can see the problem. People with Down syndrome often have lower levels of intrinsic motivation. They are simply not as motivated to learn or do things. Think about your own level of intrinsic motivation. It varies; sometimes it’s low. How much harder would life be if it was low all the time? Children with Down syndrome are perpetually low on that internal drive, that “get up and go” factor. It’s on us to find ways to motivate them. Another common issue is problems with executive functioning. People with Down syndrome may be more impulsive and may lack the ability to plan their behaviour or think through consequences before acting. This may manifest as bolting, hitting, kicking, or saying “no” every time someone asks you to do something. Kids with Down syndrome are experts at living in the moment, for sure! Memory problems certainly contribute to learning difficulties. The differences in the brain lead to reduced encoding and consolidation of new information. Encoding refers to the process by which new information gets written into our brains; consolidation is the process by which it stays there. This explains why kids with Down syndrome need a great deal of repetition and review. People with Down syndrome are also often hyper-aware of other people: They can be oversensitive and easily distracted by people and their emotions, making it harder to focus on the task at hand. But this last brain difference has an upside, too. Their heightened empathy may help counteract the intrinsic motivation problem; at DSRF we often find that our students are highly motivated by the approval of others. Behavioural Challenges and Mental Health We’re going to tackle behavioural challenges and mental health together because the two subjects are very closely linked. It is estimated that up to 38% of individuals with DS may have an additional mental health diagnosis, most of which have significant behavioural implications. Common diagnoses include: Autism Disruptive behaviour disorders Attention Deficit Disorder or Attention Deficit/Hyperactivity Disorder Social anxiety Selective mutism Obsessive compulsive disorder Depression Major depressive episode When addressing problem behaviours, it is crucial to identify the root cause to determine the best approach. If there is an underlying physical or mental health issue, this needs to be addressed first. Sometimes it can be difficult to determine whether a behavior should be attributed to Down syndrome or to some other cause, such as autism, as there can be a great deal of overlap. If you suspect that there may be something more going on than just Down syndrome, it is very important to consult with a mental health professional. That being said, sometimes problem behaviour really is just problem behaviour. During cognitive work, many children with Down syndrome exhibit lower levels of task persistence, higher levels of off-task behaviours, and overuse of burgeoning social skills. This last one can be very fun, as a child may resort to the use of party tricks – what we call the “ham effect” – in order to distract from what they are supposed to be doing. Don’t let them see you laugh! Communication Challenges People with Down syndrome can have challenges in almost every area of speech and language development. In fact, communication may be the most universal area of difficulty, and the toughest one to address. Specific problem areas include: Cognitive skills (e.g., attention, memory, problem solving) – This includes deficits in auditory processing, verbal short-term memory, attending skills, reasoning and problem-solving abilities, sequencing and organization, and generalization and maintenance of learned skills. Expressive language – Children with Down syndrome will be delayed in their development of speech and language; development will occur more slowly. They may encounter difficulties with both individual words and sentence structure, including decreased use of function words, increased number of omitted morphemes (e.g. [-ed], plurals), decreased MLU (mean length of utterance), decreased production of connectives (e.g. and, or), and decreased production of verbs. Learners with Down syndrome particularly seem to have trouble going from the 1-2 word stage to combining words into longer sentences. Speech sound production and general intelligibility – Speech sound production is difficult due to the shape of the oral cavity and hypotonicity, which make some sounds harder than others (the toughest sounds are s, th, sh, ch, j, r and l). Speech intelligibility is typically moderately to severely reduced, continuing into adulthood. Longer words are harder than short ones. Hearing loss is common, which can result in characteristics of deaf speech (e.g. leaving off ending consonants as in “ca” for “cat”). Social communication – Though people with Down syndrome are perceived to have strong social skills, social communication is actually a major area of concern for many. Early on, young children with Down syndrome have trouble with taking turns, interacting appropriately with peers, and greetings. Later, children may continue to have difficulty with eye contact and greetings, and earlier deficits in turn-taking now surface as inappropriate conversational behaviour. Older children with Down syndrome have trouble repairing communication breakdowns, which can make it hard to make and maintain friendships or other relationships. Using Strengths to Address Challenges Let’s think back to the learning strengths we identified at the beginning of this article. How can we utilize those strengths to help people conquer their challenges? For example, we saw that individuals with Down syndrome are often highly socially motivated. I have used this to my advantage many times in my work with adults. For example: “We need to keep working on your speech sounds so that your boyfriend can understand you! Or so that you can get a boyfriend! Or a job!” Sometimes, it’s as easy as reframing the negative. ‘Stubborn’ is a word that gets thrown around a lot with respect to people with Down syndrome. But stubborn sometimes translates into a good work ethic. How might it change things if we thought of it as “persistence” instead? The key is to stay positive – especially on the hard days. Remember that just about everything is harder for kids with Down syndrome; considering all the challenges they face, they are doing exceptionally well! Always start from a place of strength, and you can help them become the very best version of themselves. Sources: Bruni, M., Cameron, D., Dua, S., & Noy, S. (2010). Reported sensory processing of children with down syndrome. Physical & Occupational Therapy in Pediatrics, 30, 280-293. Capone, G., Goyal, P., Ares, W., & Lannigan, E. (2006, August). Neurobehavioral disorders in children, adolescents, and young adults with Down syndrome. In American Journal of Medical Genetics Part C: Seminars in Medical Genetics (Vol. 142, No. 3, pp. 158-172). Hoboken: Wiley Subscription Services, Inc., A Wiley Company. Fidler, D. J. (2005). The emerging Down syndrome behavioral phenotype in early childhood: Implications for practice. Infants & Young Children, 18, 86-103. Fidler, D. J., & Nadel, L. (2007). Education and children with Down syndrome: Neuroscience, development, and intervention. Mental retardation and developmental disabilities research reviews, 13, 262-271. Mahmood, Hina. Occupational Therapist, Down Syndrome Resource Foundation. Wishart, J. (2001). Motivation and learning styles in young children with Down syndrome. Down syndrome Research and practice, 7(2), 47-51. Yack, E., Aquilla, P., & Sutton, S. (2002). Building Bridges: Through sensory integration. Arlington, TX: Future Horizons, Inc.
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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 We'll be adding one or two new, fun things each day! Stay strong, everyone! Susan Fawcett and Eleanor Stewart
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
At the Down Syndrome Resource Foundation, the health and safety of our clients/students, their families, our employees, volunteers and supporters is the number one priority. Considering the continuing news regarding the coronavirus (COVID-19), and in accordance with the recommendations of health officials, DSRF has decided to cancel or postpone a number of upcoming events, including: Our New Parents Series workshop on toileting with Hina Mahmood (Mar. 14) – to be rescheduled The World Down Syndrome Day/25th Anniversary Family Skating Party (Mar. 20) – cancelled Kelowna workshop on Positive Behaviour Support with Jillian Baldwin (Mar. 28) – to be rescheduled Up the Down Market Toronto (Apr. 23) – to be rescheduled for the fall All individualized DSRF services (including speech and occupational therapy, one to one reading and math, mental wellness and positive behaviour support) are already scheduled to be off from March 16-27 for Spring Break. Out of an abundance of caution and in support of community efforts to slow the spread of the virus, for all group programs the scheduled one-week spring break will be extended to two weeks (March 16-27). We are continually monitoring this situation and are in contact with the appropriate agencies to stay on top of the issue. If there are any further postponements or cancellations, we will advise you as soon as these decisions are made. Thank you for your understanding and continued support as we do our part to #flattenthecurve.
FOR IMMEDIATE RELEASE: March 13, 2020 CONTACT: Glen Hoos, Director of Communications 604-444-3773 | | BURNABY, BC – Burnaby’s Down Syndrome Resource Foundation Celebrates 25 Years of Caring for the Down Syndrome Community For the Down Syndrome Resource Foundation, 2020 is an occasion a quarter century in the making. On March 13, 1995 DSRF’s doors officially opened. Actually, it was just one door, swinging from a tiny trailer on the grounds of Vancouver’s Sunny Hill Health Centre for Children. DSRF (known then as the Down Syndrome Research Foundation) was the vision of Josephine Mills, a strong advocate and passionate supporter of children with Down syndrome and their families. Josephine devoted more than 30 years to improving the quality of medical care, education, and opportunities in the community for people with Down syndrome and their families, and was instrumental in founding three major organizations that address the needs of people with Down syndrome: Down Syndrome International, the Canadian Down Syndrome Society, and DSRF. In 2002, Jo swung open another set of doors – these ones leading into DSRF’s brand new centre on Sperling Avenue in Burnaby. Designed first and foremost as a research facility, which at the time was the organization’s primary focus, DSRF quickly became home to hundreds of families in the Lower Mainland Down syndrome community. Over the past 25 years, the organization has evolved away from research and towards service delivery, as it became clear that this is where DSRF could make the greatest impact for its families. Today, the Down Syndrome Resource Foundation is Canada’s leading provider of educational programs and therapy services to people with Down syndrome across the lifespan, serving over 400 students annually. “The Down Syndrome Resource Foundation has been around long enough now that we've had the privilege of seeing some of our students grow up from early childhood well into adulthood,” says CEO Wayne Leslie. “We have adults with Down syndrome who come back to DSRF and say, ‘I started here. I have a job, I’m independent, I have an amazing life and I reached my full potential, and I did it with the help of DSRF.’ That’s an incredible legacy, and we aim to continue it for many years to come.” As the organization considered the best way to mark its silver anniversary, it came to realize the best way to remember and honour the past is to build upon it. To this end, expect a major announcement later this year – one that will set the stage for DSRF to grow its impact for another 25 years and beyond. For more information on the Down Syndrome Resource Foundation, visit or follow @DSRFCanada and #DSRF25 on Twitter, Facebook and Instagram.
3.21 Magazine
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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