Hand in Hand

Hand in Hand 

a publication of the Down Syndrome Research Foundation 

Inside... (click to jump) 

A Word from DSRF’s Executive Director 

Understanding OCD 

Dementia & Alzheimer’s: Getting the Care 

Right 

On the DSRF Bookshelf 

UDMD Vancouver 

Benefits of Bocce 

From Good to Great 

Upcoming Events 

Thank You for Lending a Hand 

DSRF Calendar 

Donations 


Fall 2015, Vol. 19 Issue 3


Fall 2015, Vol. 19 Issue 3 

© Copyright 2015 

Down Syndrome Research Foundation 

Hand in Hand is published four 

times per year and is available for 

free (in e-format) through the DSRF 

website at DSRF.org; print copies are 

available through the DSRF office. 

Back issues of the newsletter can 

be obtained at a cost of $5 each by 

contacting the DSRF office. 

The views expressed in the newsletter 

articles are those of their authors 

and do not necessarily reflect those 

of the Down Syndrome Research 

Foundation or its staff. 

Readers are welcome to excerpt or 

reprint portions of this newsletter 

with notification and credit to DSRF. 

A Word from DSRF’s 

Executive Director 

Dawn McKenna 

After a summer filled with beautiful warm, sunny days we are happy to welcome students back to the fall 

programs. All the individual sessions for reading, speech and occupational therapy in the fall block are full, 

but there may be one space left in the Social Communication and Navigation (SCAN), and the Money 

Math and Budgeting programs. We are looking for new space in Surrey to accommodate more program 

spaces in future blocks - stay tuned! 

Registrations are also filling up for our 20th anniversary conference (see page 13). The “From Good to 

Great” conference is an unprecedented opportunity for parents and professionals to learn from an outstanding lineup of experts from 

Canada, the US and internationally as well. Topics cover communication skills, behavioural support, employment, reading, toilet training, 

negative impact of sleep apnea, supports for those ageing with dementia or Alzheimer’s, and much more. Registration and information can 

be found on our website. 

Included in this issue are two articles from experts who will be presenting at the event. The first is on Obsessive Compulsive Disorder and 

the second covers care for persons with dementia or Alzheimer’s. Both topics will be covered in greater detail at the conference. 

The annual Christmas Breakfast is taking place on Friday December 11th. We almost ran out of room last year so be sure to book your 

seats early! We are also planning to have another family skate in celebration of World Down Syndrome Day next year, so mark your 

calendars for Friday March 18th and stay tuned for more information. 

Lastly, we are holding an Extraordinary General Meeting for our members on Tuesday, October 20th. We very much appreciate the hard 

work, oversight and guidance that our volunteer Board of Directors provide on a regular basis. This meeting is being held to bring two 

new members on to the Board to help fill gaps in needed skill sets. We hope you will join us for the meeting, which will also be a good 

opportunity to get caught up on DSRF activities. If you can’t join us in person, please send in your proxy so that we can ensure a quorum. 

1409 Sperling Avenue 

Burnaby, BC, Canada V5B 4J8 

tel: (604) 444-3773 | fax: (604) 431-9248 

Toll Free in Canada: 1-888-464-DSRF 

e-mail: info@dsrf.org | web: www.dsrf.org 

Charitable # 898907266RR0001 

ISSN 1491-7977 

Editor 

Dawn McKenna 

Design & Production 

Glen Hoos 

To stay up to date on all the latest activities at DSRF, make sure you’re receiving our regular electronic announcements. Sign up from the 

home page of our website at www.dsrf.org. 

Thank you to everyone who has lent a hand, either by volunteering your time and energy to support a program or event, or through 

financial contributions that help us continue our work. We appreciate each and every gift, and thank you for your ongoing support. 

Yours sincerely, 

Dawn McKenna 

DSRF Executive Director 



The Nuts and Bolts of Understanding OCD 

By Katherine Martinez, Psy.D., R.Psych is a clinical psychologist at the Vancouver CBT Centre 

What is Obsessive Compulsive Disorder? 

Obsessive Compulsive Disorder (OCD) involves unwanted and disturbing thoughts, images, or urges (obsessions) that intrude into an individual’s mind and cause a great deal of 

anxiety or discomfort, which the individual then tries to reduce by engaging in repetitive behaviors or mental acts (compulsions). Often, compulsions are performed in a ritualistic, 

or very specific way (for example, counting to six each time an article of clothing is removed). The following table lists common obsessive themes and compulsive rituals: 

OBSESSIONS 

Contamination. Fear or distress about coming into contact with dirt, germs, sticky 

substances, or chemicals (e.g., household cleansers), or getting sick, or getting others 

sick after touching "dirty" or "contaminated" items. 

Accidental harm to self or others. Fear of harming yourself or others through 

carelessness. For example, "What if the mess I made left behind germs and my mom 

gets sick because of me!" 

Symmetry and exactness. A need to have items ordered in a certain way (for 

example, according to color, size, or facing a certain direction). Individuals with this 

type of obsession are either anxious because "it just doesn't feel right" or because 

of a superstitious belief that something bad will happen (e.g., "if my shoes are not 

arranged properly, I will die!"). Often, the content of obsessions sounds very odd 

or makes no sense. For example, a child with OCD might say that he or she needs 

to arrange all the teddy bears from smallest to biggest or else something bad will 

happen to his friend. Most people are aware that these thoughts are strange; however, 

do not be surprised if your child doesn't think his or her thoughts are odd. Young 

children and some individuals with disabilities have no idea that their obsessions 

sound peculiar to others. 

A need for perfection: Some individuals feel a strong need for things to be perfect 

or right. For example, a client might not be able to start her job until her tools are all 

ordered and perfectly arranged, or cannot finish a task until she is certain it’s perfect. 

Others struggle to tolerate if something isn’t 100% right, focusing on doing the right 

thing all the time or thinking about every tiny mistake. 

Forbidden thoughts: Entering into adolescence/adulthood is a time of sexual 

maturity and most people think about sex and sexual identity during this time. 

However, for some individuals they are plagued with unwanted thoughts and images 

about being gay when they know they are not, or thinking about engaging in sexual 

behavior that feels upsetting and even repulsive to them. 

COMPULSIONS 

Washing or cleaning. Washing hands excessively, sometimes until they are raw and 

bleeding. There are many other types of washing behaviors, including: 

• Toilet rituals (e.g., excessive wiping). 

• Grooming/tooth brushing rituals (e.g., brushing each tooth in a particular 

order). 

• Showering rituals (e.g., washing each body part a certain number of times or in a 

particular order). 

• Cleaning compulsions (e.g., rituals and rules for how to wash laundry, clean the 

bathroom, kitchen, etc.). 

Checking. These types of compulsions can involve checking doors, locks, or 

backpacks, to make sure everything is safe. Some people check to make sure that 

everyone is okay. For example, calling family or staff members to “check” that they are 

safe. 

Counting, tapping, touching, or rubbing. Compulsions can involve counting, 

touching, or tapping objects in a particular way. Some people have lucky and unlucky 

numbers involved in their rituals (e.g., needing to touch a door four times before 

leaving a room). 

Ordering/arranging. This compulsion involves arranging items in specific ways, such 

as bed sheets, clothing, or books in bag. For example, an individual might need to line 

up all the shoes in the closet so that they all face forward, and are matched by color. 

Mental rituals. Not all people with OCD will have compulsions that can be seen. 

Some perform rituals in their head, such as saying prayers or trying to replace a “bad” 

image or thought with a “good” image or thought. For example, your client might 

have a bedtime prayer that he or she mentally repeats over and over again until it 

“feels right.” 



How to Distinguish Between OCD, 

Developmental Disorders, and Basic 

Personality 

Public education and media have provided an increased 

awareness about OCD, although this has not been 

without some problems. One example, is that people 

now talk about being “so OCD,” to describe feeling 

“obsessed” with order and cleanliness, or to explain why 

they like to be in control or do things a certain way. This, 

however, is not OCD. Rather the term “obsessed” when 

used in this way really means being preoccupied with 

an idea, or having a strong preference for something. 

People with OCD are plagued with unwanted thoughts 

and ideas, not preoccupied or preferring to think 

about something of interest. There is a big difference. 

Another important distinction between those with 

and without OCD, is that when people without OCD 

engage in specific repetitive behaviours (e.g. cleaning 

or ordering), it is by choice, and they typically gain 

some pleasure or a sense of productivity from their 

actions. Whereas individuals with OCD feel forced 

into engaging in rituals, and find the repetitive and time 

intensive actions upsetting and exhausting. These factors 

provide an important distinction in understanding the 

role of ritualistic behaviour that might be part of the 

developmental or intellectual disorder, and that which 

might be part of OCD. For individuals diagnosed 

with a developmental disorder and/or an intellectual 

disability, ritualistic behaviours that co-occur, such as 

in Autism, are generally by choice and provide some 

pleasure or satisfaction. Finally, for individuals struggling 

with OCD, the obsessions and/or compulsions are 

time consuming, typically lasting an hour or more 

daily, sometimes as much as almost every waking 

moment in more severe cases. This, not surprisingly, 

causes significant impairment in major areas of life 

functioning such as school or work, friendships, family 

life, recreation, and even healthcare. 

Facts 

• OCD can begin early, starting between ages seven and 

12. In fact, up to half of all adults with OCD say their 

symptoms started when they were children. 

• OCD is more common in boys than girls in 

childhood, but into adulthood, women are affected at a 

slightly higher rate than men. 

• OCD symptoms can change over 

time. For example, when OCD 

first appears it might begin with 

excessive washing compulsions, but 

over time this can shift to excessive 

checking compulsions while 

compulsive washing disappears. 

• OCD occurs in 2-3% of children 

and adults during their lifetime 

• Seeking reassurance from others 

that things will be okay or a 

ritual was completed “correctly” is 

common in people with OCD. This 

can include asking parents and staff 

to do rituals as well. 

What Are the Most Effective Treatments for 

OCD? 

The most effective treatments for OCD are Cognitive 

Behavior Therapy (CBT), which includes Exposure 

and Response Prevention and Cognitive Therapy, and 

medication using a class of medications called serotonin 

reuptake inhibitors, or SRIs. Exposure and Response 

Prevention is the most widely known and researched 

psychotherapy treatment for OCD. It involves having 

the individual learn to face their feared obsession, such 

as “I’ll become contaminated and ill from touching 

anything outside my home,” by actually coming into 

Katherine Martinez, Psy.D., R.Psych will present at DSRF’s 20th Anniversary conference, “From Good to Great,” on the topic of Understanding OCD and Other Anxiety 

Disorders in individuals with Down Syndrome: Learn How to Identify and Intervene. For more information or to register, visit DSRF.org/GoodtoGreat. 



contact with feared items (e.g. seat at the bank or 

doorknob), and not engaging in a preventative measure 

(e.g. washing hands). As time elapses the individuals 

fear or discomfort will naturally rise, but as new and 

corrective information is obtained (e.g. “I’m not getting 

ill from sitting at the bank”), the fear and discomfort 

decrease and fade. The individual learns that rituals are 

irrelevant to reducing the fear and discomfort. Over 

time with enough repeat exposures to these types of 

experiences, the strength of the individual’s obsessions, 

and frequency of compulsions, also decrease and fade. 

Cognitive Therapy uses similar, but more cognitivebased, 

techniques to help the individual identify, 

examine, and correct, misappraisals and erroneous beliefs 

that are understood to be central in maintaining the 

OCD. Finally, for some individuals, their symptoms 

are so severe and/or they are reluctant to try CBT, that 

medication is a preferred treatment option. Medications 

are prescribed by a physician or psychiatrist, and are 

generally best provided by someone with expertise in the 

treatment of OCD. 

How can I help my loved one? 

You are not alone if you are struggling to know how to 

best help your loved one. For many families, friends, 

and employers of individuals with OCD, it can take 

time to even recognize that the person is struggling 

with OCD. In fact, the average length of time to get a 

correct diagnosis is 7-12 years! Some common warning 

signs that your loved one may be struggling with OCD 

include: 

• Missing time- E.g. Your loved one cannot explain how 

they spent the three hours in the bedroom. 

• Excessive time- E.g. Showers taking an hour, or other 

activities taking unusually long periods. 

• Routine rituals gone awry- E. g. Leaving the home 

used to involve a quick visual light switch check, and 

double doorknob twist, to ensure the home is secure. 

Now exiting involves a manual light switch check, and 

window and door lock check in every room, 5-minute 

front door lock check, and more. 

• Getting stuck- E.g. Being unable to shift from one 

activity to another such as washing hands over and 

over, and being unable to move smoothly to the next 

bathroom task. 

• Reassurance seeking- E.g. Asking for reassurance that 

things are right, nothing bad will happen, etc. 

• Checking in unusual/excessive ways- E.g. Checking 

with the waitress that a soda is free from contaminants 

when the bottle is clearly new/sealed. 

• Poor attention and focus- E.g. Individuals may loose 

focus or have trouble attending due to engaging in 

mental rituals 

For those whose loved one has already been diagnosed, 

there are several things you can do to help: 

• Don’t say, “Stop it!”- Recognizing that OCD is a 

neuro-bio-behavioural disorder and not simply willful 

misbehavior is critical. As a result, it is not helpful 

to tell the person to “just stop it!” They would if they 

could. 

• Don’t engage in, or do rituals, for your loved one- 

Participating in the person’s rituals keeps the OCD 

alive. It might make it easier in the short-term to help 

your loved one complete a ritual, but it will make it 

harder in the long-term to release your loved one from 

the grip of OCD. 

• Do be supportive- Providing your loved one with 

accurate information about OCD, taking them to 

appointments, telling them you love and care about 

them, not stocking up on supplies that encourage the 

rituals, and other actions, confirms your support. 

• Do provide corrective information – But don’t fall 

into reassurance provision. There is a key difference 

between letting your loved one know that a reasonable 

time to shower is between 5-10 minutes when they 

don’t have this information, versus telling them 

showers take 10 minutes many times, every day, when 

your child/client clearly has this information. In the 

latter example you are feeding the ritual. 

In Conclusion 

OCD is a highly debilitating disorder that affects 

approximately 2-3% of the population, often beginning 

in late childhood or early adolescence. The most 

common obsessions include themes of contamination, 

losing control, and harm, although there are other 

themes that frequently present as obsessions. The 

most common compulsions are washing and cleaning, 

checking, and repeating, although like obsessive themes, 

there is a range of compulsive behaviours that an 

individual with OCD may exhibit. Getting help for your 

loved one is critical and there are several well supported 

treatments that can provide relief. Speaking with a 

professional is the most important first step you can take 

for your loved one, as this will allow him/her to begin 

the journey towards an improved quality of life. 

Information generously provided by the following 

resources: 

www.iocdf.org 

www.anxietybc.com 



Dementia and Alzheimer’s - After the Diagnosis: Getting the Care 

Right 

Karen Dodd, PhD is Co-Director of Services for People with Learning Disabilities, Associate Director, Therapies – Learning Disabilities 

Services and a Consultant Clinical Psychologist, Surrey, England and Borders Partnership National Health Services Foundttion 

Trust, United Kingdom. 

What is the challenge? 

90% of Catastrophic Behaviours in people with 

dementia are induced by Carers and the Environment. 

(Bawley E (1997) Designing for Alzheimer’s Disease. 

Strategies for creating better care environments.) 

How can we achieve this? 

Keep The Person At The Centre 

• The most important tenet in caring for a person with 

learning disabilities with dementia is that the needs of 

the person are paramount. 

• People with dementia need to have/be: 

• Stress free 

• Failure free 

• Individualised care 

• Consistency but without time pressures 

• Staff need to: 

• Understand and know the person 

• Understand dementia 

• Think ahead and predict ‘stressors’ 

Philosophy of Care 

• Look at the Person not the Diagnosis 

• Adopt a flexible approach; Go with the flow! 

• Use Regular Staff 

• Promote Failure Free Activities 

• Take off Time Pressures 

• Communication and Memory 

• Daily Living Tasks as Activities 

• Remain Consistent 

• Interpreting Behaviours and how to minimise them 

• Planning for the Future 

Think About the Present and Future 

• Be clear about what needs to be achieved. 

• Consider the person’s happiness, comfort, security and 

freedom from pain. 

• Maintain relationships and family involvement. 

• Change the focus of care to quality of life. 

• Forget targets! 

• Think about the environment, where the person lives, 

day activities, training for staff, baseline assessments. 

• Think ahead to later stages of dementia including 

palliative care. 

Environments and People with Dementia 

• In planning for future care, it is usually in the person’s 

best interests to remain in their familiar setting with 

familiar people and routines. 

Environments may need to be altered to be: 

• Calm – noise (internal and external), colour 

• Predictable and making sense – cues, signposting, no 

surprises 

• Familiar – homey, long term memory 

• Suitably stimulating – noise, views 

• Safe – access, stairs, hazards 

Life Story Work 

• Promotes positive interactions and feelings. 

• Engages the person, friends, carers and families in its 

preparation. 

• Gives the person and their carers a clear individualised 

picture of the person. 

• May take the form of a book or photo album, box with 

objects of significance 

• Material needs to be well captioned with date, what 

the event/significance is, who is in the picture etc. 

• Material should be used frequently and consistently 

Different Realities 

• Vital that you do not cause additional stress in the way 

you respond 



• Telling the person ‘the truth’ may be very damaging 

and cause stress and grief 

• Remember that the person has a short term memory 

problem and won’t retain what has been said. 

• Do not believe people who tell you that it is wrong to 

collude with people with dementia. 

• Accept that the person may not know who you are 

and may become confused and distressed when you 

are doing things with them. 

• Think about what the person wanted from telling you 

about the reality. 

Functions of Behaviours 

Behaviours can have a variety of functions: 

• I am confused 

• It’s too noisy 

• I want to go somewhere else 

• Something hurts 

• I want a drink 

• I don’t understand what is required of me 

• I’m scared 

• No – I don’t want to do what you want me to do 

• I’m too hot or cold 

Dealing with Behaviours 

• Look at the situation through the eyes of the person 

with dementia 

• View the behaviour as an attempt by the person 

to communicate, so interpret using all possible 

information 

• Is this an exacerbation or return of previous 

behaviours? 

• Is the behaviour caused by a return to a long term 

memory that is now inappropriate? 

• Use the simplest solution available to you 

• Decide if the behaviour really needs intervention. 

• Environmental alterations can alter behaviours 

• Decide whose reality you are dealing with. 

Early Stage Practices 

• Emphasise maintaining skills. Keep independence by 

increasing staff supervision and prompting. 

• Keep changes in environment and daily routine to 

a minimum. Provide structure and supports to daily 

routines and to help orientation. 

• Remind person of the day, time, place, who they are 

with and what they are doing. 

• Simplify routines and reduce choices. 

• Use memory aids such as diaries and timetables. 

• Keep verbal requests simple and clear, and use 

additional cues and prompts. 

• Promote dignity, positive self esteem and well being. 

• Closely monitor and document changes. 

Middle Stage Practices 

• Preservation of function – use favourite activities and 

strengths, behavioural techniques, reminiscence, reality 

orientation. 

• Involvement in stimulating activities 

• Maintain and review physical health and mobility. 

• Consider how the person communicates about pain. 

• Adequate nutrition / hydration. 

• Protection and maintenance of safety. 

• Aid with self care. 

• Strategies to deal with agitation and distress. 

• Aids and adaptations. 

• Work with families, carers and other residents. 

Late Stage Practices 

• Quality time given to personal care. 

• Reassuring and confident communication. 

• 24 hour care – nutrition, lifting and handling. 

• Skin care and prevention of pressure sores. 

• Prevention of infection. 

• Safety issues. 

• Work with families, carers and other residents re 

terminal care and death. 

Pathway – Janicki & Dalton 1999 

Potential pathway that someone might follow after a 

diagnosis of dementia: 

1. ‘Dying in place’ where they remain in their own 

accommodation with appropriate supports adapted and 

provided. 

Karen Dodd, PhD will present a number of sessions at DSRF’s 20th Anniversary conference, “From Good to Great,” on the topics of Understanding Dementia in Down 

Syndrome and System-wide Service Responses for People with Intellectual Disabilities and Dementia. For more information or to register, visit DSRF.org/GoodtoGreat. 



2. ‘In place aggression’ where staff and the environment 

are continually developed and adapted to become 

increasingly specialised to provide long-term care for the 

person with dementia within the residential service (but 

not necessarily their own accommodation). 

3. ‘Referral out’ where they will be moved to a long-term 

nursing facility or other typoe of provision. 

Why Dying in Place? 

The person will stay with what is familiar – people, 

routines and place. 

In some instances however, it is not possible to maintain 

the person in their existing home e.g. 

• Design of the building is inappropriate and cannot be 

changed. 

• Older family carers may not be able to continue caring 

as the needs of the person increases, or their own 

health changes. 

• Registration issues 

• Funding 

• Moving people in the early or middle stage of 

dementia may increase the rate of deterioration, whilst 

late moves can lead to a significant increase in the 

risk of early death. Multiple moves should always be 

avoided. 

Effect of Fixtures and Fittings 

Mirrors/Pictures: 

• As dementia progresses, people lose the ability to 

recognise themselves as they are now. 

• Can cause distress as they think there is someone they 

do not know in their room. 

• Can be worse at night, and particularly with dressing 

table mirrors with 3 sections. 

• Mirrors are still important to give people a sense of 

self, but may need to be covered at night, or removed 

whilst people are going through this distressed phase. 

• Can also apply to pictures /photos with ordinary glass. 

Flooring: 

• Use flooring with a dull, non-shiny finish. Shiny 

surfaces may look like water. 

• Flooring should preferably be continuous, at least in 

colour, so that there are no artificial barriers for the 

person to cross in moving from one room to another. 

• Avoid patterns, especially large flowers which can look 

like holes to the person, or even carpets with flecks. 

• Care should be taken over uneven surfaces and steps, 

and consideration be given to removing rugs. 

• Bath mats should be same colour as bath /floor. 

Lighting: 

• Lighting can cause shadows and reflection. 

• Non-glare lights can help. 

• Avoid downlighters which can cause shadows that the 

person may think is a hole. 

• Use blackout curtains in bedrooms. 



• Use light sensitive timers. 

Furnishings and Fittings: 

• Emphasis is on what is in their long term memory. 

• Separate hot and cold taps. 

• Kitchen appliances e.g. washing machine, fridge that 

are easily identified and not cleverly concealed by 

modern kitchen designs. 

• Open shelves so that common objects can be seen 

rather than hiding everything behind closed doors. 

• Drawers with protruding handles. 

• Traditional curtains rather than blinds. 

Working with Peers 

‘Journey of Life’ 

• Group format used to explain the lifecycle. Over 6 

sessions looks at: 

• The stages in life from babyhood to old age 

• Explores how much care is needed at each life 

stage 

• Explains that dementia is when someone needs 

extra care more quickly 

• Explores how peers are already helping their 

friend and what additional support they can give 

if they want to. 

• Proved to be most effective when undertaken in 

residential services. 

• Highlights the need to consider other residents and 

the rolw that they can play in supporting the person 

with dementia. 

• Helped to reduce conflicts and increase acceptance 

between the other residents and the person with 

dementia. 

Review and revise 

The key element to meet the person’s changing needs is 

to constantly review and revise the care plan. 

There needs to be in place systems for: 

• Regular multi-disciplinary reviews – usually every 

three months depending on the rate of progression of 

the dementia, so that the care offered can be amended 

as needed 

• Effective recording of information 

• Effective communication between everyone involved 

• Speedy responses when situations occur to reduce risk 

• Good flexible financial planning 

Reading List 

Buijssen, H. (2005) The Simplicity of Dementia. London: 

Jessica Kingsley 

Dodd, K., Kerr, D. & Fern, S. (2006) Down’s Syndrome 

and Dementia Workbook for Carers. Teddington: Down’s 

Syndrome Association 

Dodd, K., Turk. V., & Christmas, M. (2003) Resource 

Pack for carers of adults with Down’s Syndrome and 

dementia. Kidderminster: BILD Publications 

Dodd, K., Turk, V. & Christmas, M. (2005) The Journey 

of Life: a booklet about how people change from babies to 

older people. Kidderminster: BILD Publications 

Dodd, K., Turk, V. & Christmas, M. (2005) Booklet for 

Friends of People with Down’s Syndrome and Dementia. 

Kidderminster: BILD Publications 

Dodd, K., Turk, V. & Christmas, M. (2005) 

Understanding Dementia - information for people with 

learning disabilities. Kidderminster: BILD Publications 

Fray M (2000) Caring for Kathleen. Kidderminster: 

BILD Publications 

Kerr D (1997) Down’s Syndrome and Dementia: A 

Practitioner’s guide. Birmingham: Venture Press 

Kerr, D. & Wilkinson, H. (2005) In the Know. 

Implementing Good Practice. Brighton: Pavilion Publishing 



On The DSRF Bookshelf 

Visit our online store at http://dsrf.org/store to purchase 

any of these books, with partial proceeds to benefit DSRF. 

Boyfriends + Girlfriends: A Guide to Dating for People with Disabilities 

By: Terri Couwenhoven, M.S. 

Everyone knows that dipping your toe in the dating pond can be a little intimidating without first seeking some expert advice! And that’s exactly 

what Terri Couwenhoven delivers in her new book written expressly for teens and adults with intellectual or developmental disabilities. Boyfriends & 

Girlfriends explains the dos and don’ts of dating and validates their normal, age-appropriate desire for companionship and romance. 

Written and illustrated for a hi/lo reader, Boyfriends & Girlfriends is perfect for anyone who is already in a relationship, ready to start one, or still 

only dreaming about it. The guide is also an informative read for parents, counselors, and other support providers. 

Teaching Children with Down Syndrome about Their Bodies, Boundaries and 

Sexuality: A Guide for Parents and Professionals 

By: Terri Couwenhoven, M.S. 

Drawing on her unique background as both a sexual educator and mother of a child with Down syndrome, the author blends factual information and 

practical ideas for teaching children with Down syndrome about their bodies, puberty, and sexuality. This book gives parents the confidence to speak 

comfortably about these sometimes difficult subjects. 

Each chapter highlights important points with key messages, teaching activities, parental pauses, and anecdotes, all of which prompt readers to stop 

and consider concepts or values associated with a particular topic. The final chapter covers the special concerns of parents who are now teaching teenaged 

or adult children about sexuality for the first time. It concludes with extensive appendices containing invaluable teaching materials and illustrations 

of body parts and functions. 



Westcoast Actuaries Inc., Individuals with Down 

Syndrome Big Winners at Up the Down Market 2015 

On Sept. 17, Westcoast Actuaries Inc. brought an end to PH&N’s three year reign of terror by winning the Up the Down Market 

Dinner Vancouver championship - earning bragging rights for a year in the process. 

The triumphant team bounced back from a Round Two bankruptcy, steadily growing their wealth through the late rounds to claim the 

trophy, holding off a stiff challenge from second place Sauder School Finance Division. The Host table surprised by taking third place. 

Up the Down Market (UDMD) was more than just an opportunity for financial heavyweights to prove their investment mettle. The 

real story of the evening was the financial community coming together in support of individuals with Down syndrome - and in this, 

everyone was a huge winner. 

Net proceeds were approximately $94,000 (an increase of $10,000 over 2014), as investors proved they care about much more than 

just the bottom line. In addition, three dinner guests took the Triple-21 challenge, signing up for DSRF’s monthly partnership 

program - commitments that will generate another $750 annually. This investment will be a tremendous help to the Down Syndrome 

Research Foundation in its mission to empower individuals with Down syndrome to reach their full potential throughout life, and 

signifies that the Vancouver financial community is standing together, hand in hand, with people who have Down syndrome. 

Throughout the evening, dinner guests were served by a hardworking and friendly team of DSRF student volunteers who proved beyond doubt that, with the right support, 

individuals with Down syndrome can thrive in work and in life. The students also brought some levity to the affair when they joined CTV’s Tamara Taggart for a special interview. 

A spokesperson for DSRF stressed their appreciation of the generous UDMD sponsors, including The Air Canada Foundation, Golf for Good, Porchlight Financial, Sun Life 

Global Investments, CIBC Asset Management, Desjardins, Jasrislowsky Fraser Ltd., Manulife Asset Management, Phillips, Hager & North Investment Management, CTV, 

Sauder School of Business, Callaghan Photography, Woodhouse & Associates, the United States Consulate General and the Hyatt Regency Vancouver. 

Honorary Chair Tracey McVicar, Emcees Christina Anthony and Mark Fattedad, Story Writer Rob Heinkel, Game Makers Burton Lee and Kevin Pickell, The Answer Company, 

CTV’s Tamara Taggart and Mike Killeen, students from Sauder School of Business, the volunteer team and all table sponsors and guests were also singled out for special thanks. 

All involved have made a tremendous difference in the Down syndrome community. 



Turbocce Turns on Jets to Win Benefits of 

Bocce 2015 

18 teams gathered under a cooling canopy of cloud at the North Vancouver bocce pits on August 15 for a DSRF 

summer tradition: the 15th Annual Benefits of Bocce tournament, presented by Manulife Financial. 

The rain held off for a day of fun, food, friends and fundraising in support of the Down Syndrome Research 

Foundation. It didn’t take long for newcomers to learn why others have described it as their favourite charitable event 

of the year, as good natured rivalries quickly sprung up amongst the 72 players vying for the championship trophy. 

Turbocce, representing Westcoast Actuaries, Inc. and comprised of players Steve O’Grady, Iryna Nevill, Spenser 

McCaig and Chris Jin, got hot at just the right time. Despite entering the playoffs as the 8th seed, the foursome 

pulled off upset after upset to claw their way to the Benefits of Bocce championship. They knocked off the equally 

surprising 7th seeded DownSide Up (DSRF’s Glen Hoos, Maria Marano, Nimet Tejpar and young sharpshooter 

Nathan Boal) in a gold medal match that came down to a single ball tiebreaker. Meanwhile, Morneau Shepell’s Freudian Slips (Paul Slakov, Eileen Taylor, Glenn Mathes and 

Susan Rai) took home the bronze medals. 

The event raised over $10,000, which will help empower individuals with Down syndrome through DSRF’s research and educational programming. For more information on 

DSRF or to make a donation, please visit DSRF.org. 

Benefits of Bocce was sponsored by Manulife Financial, 

Burnaby Firefighters, Neil Squire Society, Neptune 

Terminals, Vancity, Tim Hortons, Presto Catering, Palm 

Bay and Labatt, as well as over 30 generous individuals 

and companies who donated prizes for the silent auction 

and raffle. 

On behalf of DSRF’s students, families, board and staff, 

thank you to all players, donors, sponsors and volunteers 

for standing “Together. Hand in Hand.” with all who are 

walking the journey of Down syndrome. A special thank 

you to Alan Black, Leah Wosk and Susan Juilfs for their 

support. 



From Good to Great: The Down Syndrome Research Foundation’s 

20th Anniversary Conference 

“From Good to Great” is a rich opportunity for parents and professionals to learn from an outstanding line up of international speakers as well as Canadian experts. 

On day one, the conference will provide information about the latest best practice for behavioural support; development of communication skills; employment; reading and 

mathematics; support from an expert on toilet training; individualized supports for maximizing community inclusion; and dementia supports. 

The day two speaker focus is on current research 

concerning protective strategies to address the higher 

risk of Alzheimer’s disease in people with Down 

syndrome; the negative impact of sleep apnea on 

language and cognitive development; micronutrient 

requirements and metabolism; endocrinology; protective 

strategies for anxiety and OCD; service system response 

for dementia, and a round table discussion on models of 

community care for people with Down syndrome who 

develop early onset Alzheimer’s. 

This will be an unprecedented opportunity in Canada 

to bring together families, educators, clinicians, service 

providers and researchers to learn, share and inspire! 

To learn more or to register, visit 

http://dsrf.org/GoodtoGreat. 

From Good to Great: 

Enhancing Quality of Life for 

People with Down Syndrome 

October 23-24, 2015 

Coast Plaza Hotel & Suites, Vancouver 

Day One: Optimizing Neurodevelopment 

Keynote: Dr. David Stein, Co-Director, The 

Down Syndrome Program, Boston Children’s 

Hospital; Instructor, Harvard Medical School 

Day Two: Optimizing Physical and 

Mental Health 

Keynote: Dr. George Capone, Director of the 

Down Syndrome Clinic and Research Center at 

Kennedy Krieger Institute; Associate Professor of 

Pediatrics at John Hopkins School of Medicine 

See DSRF.org/GoodtoGreat for more details on the 

conference content. 

Celebrating 20 Years of Serving 

the Down Syndrome Community 

Pricing, registration and hotel info available at 

DSRF.ORG/GOODTOGREAT 



Upcoming Events 

Triple-21 

partners 

get 21% 

off! 

Entertainment by Rick Scott 

Christmas Tree Decorating Competition 

Christmas Gifts and Crafts for Sale 

Silent Auction of Decorated Trees 

Visit from Santa 

Media Sponsor: 

Adult Ticket: $40 

Children 5-12 years Ticket: $20 

Children under 5 years: FREE 

Table (10 seats): $350 

18th Annual DSRF 

Christmas Breakfast 

Friday, December 11, 2015 

7:30 - 9:30am 

(breakfast served 7:30-8:30) 

Hyatt Regency 

655 Burrard Street, Vancouver 

To purchase tickets, call Nimet at 604-444-3773 

Family accommodation is available Thursday night for $139; for accommodation 

bookings contact the Hyatt Regency at 604-683-1234. Code: ELEV15. 

Calgary: Oct. 28, 2015 

Montreal: Nov. 18, 2015 



Thank You for Lending a Hand 

Lohn Foundation 

DSRF.org 

The Lohn Foundation has generously granted DSRF $3,000 for general program funding. 

RBC Foundation 

The RBC Foundation has generously granted DSRF $10,000 for our Reading & Communication programs. 

Sook Chin Foundation 

The Sook Chin Foundation has generously granted DSRF $2,000 for general program funding. 

Ames Family Foundation 

The Ames Family Foundation has generously granted DSRF $10,000 for general program funding. 

The Down Syndrome Research Foundation held its 

22nd Annual 

Up the Down Market Dinner 

September 17, at the Hyatt Regency Vancouver. 

Congratulations to Westcoast Actuaries, Inc. for 

outduelling 34 competing teams from across the 

financial industry to claim the coveted 

Up the Down Market trophy. 

More than $94,000 (net) was raised for Down 

syndrome research and educational programming. 

Thank you to all who made it possible! 

Diamond Sponsor 

(National) 

CTV and Tamara Taggart 

We are pleased to announce a new partnership with DSRF’s new media sponsors, CTV. Thank you to Tamara Taggart and family 

for filming a brand new PSA for DSRF, to debut on CTV this fall. 

Benefits of Bocce 

Thank you to the sponsors of Benefits of Bocce 2015: Manulife Financial, Burnaby Firefighters, Neil Squire Society, Neptune Terminals, 

Vancity, Tim Hortons, Presto Catering, Palm Bay and Labatt, as well as over 30 generous individuals and companies who 

donated prizes for the silent auction and raffle. 

Gold Sponsors 

(Local) 

Media Sponsor 

Emerald Sponsors 

(National) 

Triple-21 Partners 

A big thank you to our newest Triple-21 partners: Mackenzie Bell, Michelle Demos, Chris Forman and Shae A. MacLean. To 

learn how you can empower individuals with Down syndrome to reach their full potential through a donation of $21 or $210 per 

month, please visit DSRF.org/Triple21. 

Additional Sponsors: 

Callaghan Photography, CFA Society of Vancouver, Hyatt 

Regency Vancouver, Sauder School of Business, United 

States Consulate General, Woodhouse & Associates Inc. 

Thank you also to all table sponsors and prize sponsors! 



DSRF Calendar 

Good to Great Conference Oct. 23-24, 2015 

Coast Plaza Hotel & Suites, Vancouver 

Up the Down Market Calgary Oct. 28, 2015 

Westin Calgary 

Action 21 Nov. 18, 2015 

Le Centre Sheraton, Montreal 

Christmas Breakfast Dec. 11, 2015 

Hyatt Regency Vancouver 

World DS Day Skating Party Mar. 18, 2016 

Burnaby 8 Rinks 

Up the Down Market Toronto Apr. 13, 2016 

Fairmont Royal York 

Scan this code from your 

mobile device to make 

an online donation to 

the Down Syndrome 

Research Foundation. 

Make Dreams Come True: Donate Today 

“When Melissa graduated from high school,” says her mother Patti, “we were a little perplexed as to 

the next steps in working with her towards a career path. DSRF was something I’d always known 

about as she was growing up, but we never took advantage of until she graduated high school.” 

Melissa enrolled in DSRF’s programs for young adults with Down syndrome, which have helped 

her gain the skills she will need as she pursues her goal of a job working with children. 

“DSRF has really helped her with her reading and money math skills,” says Patti. “I’ve noticed that 

it has expanded her vocabulary and her abilities in social skills. Having a strong community like 

DSRF has helped her grow and thrive, and we’re very thankful to have them as part of our lives.” 

Now 20 years old, Melissa is continuing her education. “I want to get a job with kids one day,” she 

says confidently. 

Your donation to DSRF helps write success stories just like Melissa’s. We 

are grateful for your generosity, and we value your trust that we will use 

your money wisely. 

An online donation is the easiest way to contribute to the DSRF. All 

online donations receive an immediate tax receipt by e-mail. To give 

online, please visit www.dsrf.org or scan the code on the left of this 

page. You can also mail a cheque payable to the Down Syndrome 

Research Foundation to the address below. 

Thank you for standing together, hand in hand, with Melissa 

and with all those who are walking the lifetime journey of 

Down syndrome.

Hand in Hand

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