Imagine trying to process the world around you when every sound, sight, and feeling seems turned up to the highest settings possible. This is a reality for some people who have fetal alcohol spectrum disorder (FASD). Like a migraine that can interrupt your executive function (the skills used to manage everyday tasks like making plans, problem solving, and adapting to new situations), this can be a major barrier for some folks to be stable and secure in their housing.
This is why we operate Hope Terrace, a supportive housing building specifically designed for people with FASD. Today, 34 people call Hope Terrace home and are gaining the knowledge and skills to live independently through the support that specifically addresses their unique needs.
The wraparound supports built within the building and its programs helps its tenants overcome their barriers to housing, learn to better manage their day-to-day needs to upkeep their housing, and ultimately gain independence to live with dignity and a good quality of life.
Good Quality of Life Starts with Good Food
When executive function is interrupted, it can be hard to tell what makes for good food that helps with physical and mental health. Hope Terrace’s community kitchen model helps to overcome this barrier by not only ensuring nutritious and delicious food is available to tenants, but that tenants are also empowered to make those choices and learn how to make well balanced meals.
Hope Terrace’s cooking program, called Cook’n’Eat, is supported by the on-staff occupational therapist and teaches interested tenants the basics of cooking, with an emphasis on timing out the different steps to preparing a meal. This helps promote further independence in tenants by teaching a transferable skill that they can apply to many facets of their daily lives.
This is just one of more than a dozen different food support programs at Hope Terrace that teaches tenants how to prepare meal kits, how to serve meals for the whole community, and even how to budget for essentials like groceries. In fact, we’re proud that 85% of the people who call Hope Terrace home are independently grocery shopping on a regular basis and finding better balance with their nutrition and their lives.
Tenant Empowerment through Collective Action
Many of the tenants at Hope Terrace expressed a need for a more prevalent voice in their day-to-day lives and learning how the building they call home operates. Seeing this as an opportunity to further develop transferable skills and independence, a six-person volunteer Tenant Council was formed to act as an intermediary between tenants and what would be considered their landlord at Hope Terrace.
Directly reflecting the needs and wants of the larger Hope Terrace community, this structured group receives feedback from other tenants and creates action plans to address these requests and possibly implement changes to reflect these needs. Recently, this group worked closely with the building and landlord to address some challenges with the heating and successfully uncovered solutions that improved the lives of their neighbours.
This group also acts as a distribution point when Hope Terrace staff has updates or changes they need to communicate to other folks in the building, ensuring there is transparent and healthy flow of information between staff and tenants.
Ensuring Over-Stimulation Can be Easily Managed
While a lot of amazing work can be done to help a person with FASD learn necessary life skills and gain better independence, a few bad moments of over-stimulation can bring back or create new challenges for folks. To ensure this barrier is overcome, we created a room specifically to help quell over-stimulation and balance out tenants’ sensory intake.
Called the Snoozelen, this room has adjustable lighting, sound, visuals, and soft-textured seating to bring down anxiety, stress, and other adverse outcomes that accompany over-stimulation. This has been an incredibly successful tool at Hope Terrace that’s helped tenants manage their emotional well-being long before it becomes a wider issue for other tenants and staff.
There’s Even More to Discover about Hope Terrace
These are just a few of the ways Hope Terrace supports people with FASD in securing and maintaining stable housing. In the past year alone, through the skills and knowledge gained from Hope Terrace’s programs, eight people have moved into fully independent living situations — one is even a proud homeowner.
We’ll be sharing a full presentation on November 21, 2024, in recognition of Housing Month. Join us for this noon-hour webinar session where we’ll go into more details about Hope Terrace — and you’ll have an opportunity to directly ask the people running Hope Terrace more about what makes this building so successful at helping people with FASD overcome their unique barrier to stable and secure housing.
Ten years ago, RJ Formanek wanted to start a conversation about Fetal Alcohol Spectrum Disorder (FASD). As an adult who has FASD, he thought educating people and showcasing his diverse skillset and reliance was important. And the Red Shoe Walk was born.
RJ figured he should stand out – red shoes did the trick. With his crimson kicks, RJ took to the street, stopping to talk with anyone willing to learn about FASD. And no wonder he wanted to start a conversation about FASD – especially when it feels like no one is talking about FASD.
This year, our Red Shoe Day Event sees us walking from Hope Terrace, our supportive living apartment for folks with FASD, through the King Edward Park community, and all through Bonnie Doon and into Strathcona and then returning to have lunch and an art sale at the Shamrock Curling Club. The art sale will feature artists who have FASD. Register today to join us on September 9 from 10:30 a.m. to 2:00 p.m. for a Red Shoe Walk through the community and bring awareness to a disorder that needs to be talked about more.
4% of Canada’s population has FASD
There are more people in Canada who have FASD than autism, cerebral palsy, and Down syndrome combined. And no two people who have FASD are alike. Many people who have FASD have rewarding careers and fulfilling lives – they uncover their strengths and lean on them to find success.
FASD affects people differently depending on when alcohol was introduced to their fetal development. Alcohol slows down development, both physically and mentally. This means how FASD affects a person is highly individualized, often requiring individualized programs and supports to help them live with dignity.
FASD is a hidden disability as most people who have FASD have no physical signs of impairments. Adolescents and adults who have FASD can experience high rates of difficulties in daily living and adverse outcomes, including school disruption, mental health issues, and challenges with independence. This is why the Red Shoe Walk is so important.
There is shame in an FASD diagnosis
Often, people miss or never receive an FASD diagnosis because of the shame involved – not on the people who have FASD, but on those who carried them in utero. There are ad campaigns and information packages all over highlighting the risks of drinking alcohol while pregnant.
A person may consume alcohol while pregnant without ever knowing they’re affecting the fetus they carry. They may not know they’re pregnant, have been told a little alcohol doesn’t hurt, come from a community where that information isn’t available, are experiencing mental health or stress-related illnesses prompting them to drink, or for many other reasons that have nothing to do with other issues like poverty. With a better understanding of how a person can end up consuming alcohol while pregnant, we can better understand FASD.
FASD can affect anyone – not only people in poverty
A common misconception around FASD is it only affects people experiencing poverty – we know this is false. People who have FASD can come from a range of backgrounds and situations, sometimes even from affluent families. We’ve seen this firsthand at Bissell Centre with participants in different programs telling us their stories and experiences.
Where the issue around poverty gets cloudy is how people who have FASD can be more likely to experience houselessness. That difference in understanding and mental processing can make navigating systems that we take for granted more difficult. We designed our programs specifically with this in mind – ensuring that services for folks who have FASD are readily available no matter the individuals’ personal circumstances.
Helping people live with dignity
Our Fetal Alcohol Spectrum of Services (FASS) program works to understand individuals who have FASD as whole people. We work one-on-one with our program participants to identify their unique strengths to guide them toward personal fulfillment.
Part of our FASS program is Hope Terrace. This is a supportive housing building specifically designed for people who have FASD. Wraparound services for FASD are included in this building, which also features a Snoezelen room to help individuals with emotional regulation.
Recently, a group from our FASS program contributed to the book Born Broken, detailing what our participants found most important to them in their own voices. This book highlights what folks who have FASD have to offer the world, their fears and struggles, and how they’re moving forward.
Maybe no one is talking about FASD simply because they don’t understand it. On September 9, keep an eye out for some folks walking all in Red Shoes. Ask questions about FASD and the Red Shoe Walk to ensure we are all talking about FASD.
Introducing Bissell Centre’s very first FASD Awareness Ringtone! Be one of the first to have this modern new ringtone! Just follow the instructions below using the appropriate links.
Instructions on downloading the new ringtone to your phone
iPhone Users – You Can Choose Ringtone
Step 1. Import the M4R song file into iTunes on your computer (save it somewhere and then drag & dop)
Step 2. Synchronize the ringtone file from the Ringtone folder on the left to your iPhone
Step 3. After completing the sync, tap the settings on the iPhone
Step4. Tap Sound – Tap Ringtone
Step 5. Select the ringtone from Custom. (* Song titles may not be recognized when only written in Roman alphabet)
Blackberry Users – You Can Choose_BISSELL CENTRE RINGTONE MP3 BLACKBERRY
1. Open the attachments on your Blackberry phone device
2. Save the MP3 attachment by “checking” the box that says “save as ringtone”
3. Set your phone to audible ringtone, and have someone call you to test it out!
Unveiling for the first time – You Can Choose – an FASD Music Video by Bissell Centre, EFAN and PlanIt Sound
Our new music video!
[youtube=”http://youtu.be/t1D7g2NoESE”]
Our new educational video!
[youtube=”http://youtu.be/vHSllqBVA8c”]
Fetal Alcohol Spectrum Disorder (FASD) is a prevalent issue in our society that needs to be talked about. Awareness, education, and prevention, are key to eliminating this 100% preventable lifelong brain disability. Through the Fetal Alcohol Spectrum of Services (FASS) at Bissell Centre we offer presentations to various groups wanting to learn more about this invisible disability.
Together we must put forth a clear message that no alcohol is best during pregnancy. As a community I believe it is our responsibility to work together to not only raise awareness but to provide supports to pregnant women struggling with addiction and also to those who are currently living with the effects of prenatal alcohol exposure. Even by talking to our friends and families we can help to start these much needed discussions and start to break down the stereotypes, misconceptions, and stigma associated with alcohol, pregnancy, and FASD.
Prior to her current role as FASD Community Educator, Alaina Thursby worked as a Parent Child Advocate with the FASS team at Bissell Centre, providing intensive support to at-risk pregnant women struggling with addiction. Alaina brings this experience to the community education piece and would be happy to share her thoughts on FASD, prevention, and support based on these experiences.
Our FASD community presentations are offered at no cost for Edmonton and surrounding areas and can be tailored to your group. Also, it is expected that the education will take place in a venue supplied by the group requesting the presentation.
