This is the second part of the CanFASD Family Advisory Committee’s reflections on the Learning Together workshop themes: FASD as a Whole Body Disorder, Aging and Transitions, Supports and Strategies, and Advocating for Supports. Today’s post is Part 2, and includes reflections from FAC members on the third and fourth themes. See Part 1 here.

Thanks again to FAC members Tammy Roberts, Simon Laplante, and Jennifer Noah for their reflections. You can find their biographies on the CanFASD webpage here.

The third theme emerging from the workshop was about Effective Intervention Strategies and Supports. Participants discussed their priorities for research on supports for caregivers and individuals with FASD:

• Addressing caregiver wellbeing was important to participants and they suggested respite is needed across the lifespan. Caregivers also want support with: “parent support groups, financial assistance, strategies for coping with mental health issues, supported parenting models, resilience building, and support for grief and mourning.”
• At a broad level, participants see the need for changing general perceptions of FASD, reducing stigma, recognizing invisible barriers, changing media portrayals of FASD, and implementing mandatory FASD training for all service providers working with this population.
• At the individual level, participants emphasized the importance early intervention that is low-cost and tailored to individual needs. They praised structure, repetition, and trial and error in finding effective strategies and are interested in seeing studies about the impact of exercise, sports, and nutrition.
• Participants want to debunk hopelessness and replace it with hope-based practices.

We asked FAC members some follow-up questions about strength-based practices and what strategies actually look like for their family members:

Q: Participants highlighted the need for a strengths-based, person-centred approach when working with people with FASD. Can you describe what this means to you and your family members? 

A: Strengths-based, person-centered approach means to our family, that our child’s specific strengths are thoroughly considered, as well as the deficits, and seeking to find solutions and strategies that can bolster our child’s strengths and successes. Person-centred means the person with FASD, and at present because our child is quite young, our needs and strengths are what drive the interventions and approach. By drawing upon personal, family and community strengths and resources, we all feel more empowered, rather than imposing clinician values or strategies that might not be a good fit culturally or don’t acknowledge our family’s resilience and capabilities. 

Q: Structure and repetition are so important for many people with FASD, but they can take on different forms depending on the person. Can you share what structure and repetition looks like for you and your family members? 

A: Just a small example. Structure and repetition are vital for our daughter, and essentially for all of us to prevent crisis or explosive or risk taking behaviour for our child with FASD. We have visual schedules posted that we refer to multiple times per day. We have finally had the school create a visual schedule at school which helps our daughter’s anxiety and keeps things predictable. Even if we have to change things, because life happens, we include it on a written schedule that our child checks frequently. One very important reminder, and it’s slowly starting to sink in and transfer across multiple settings, is looking both ways before crossing the street (all streets), parking lot (in all lots including school, store, up north and down south, etc.). You can think you’ve covered a basic safety principle such as crossing the street, but if you only do it outside your home, it might be the only place your child remembers or considers road safety because of executive functioning difficulties. We have family agreements printed that are posted on the walls and rehearsed at all meal times and reminded throughout the days. We review social stories with simple messages. We use these messages, mostly for safety and social appropriateness as scripts that we repeat, repeat, repeat. 

A: I find that structure and repetition works well in my family with the basics, i.e.: safety, shelter, and food.  As they become adults we can incorporate some flexibility when it comes to curfew and choices that are not harming or that they might be able to learn the negative

The fourth and final workshop theme was Advocating for Effective Supports for People Living with FASD. Feedback from participants covered training and education, stigma, justice interventions, prevention, and defining success for FASD:

• Participants discussed the need to reduce stigma and blame, use research to counter negativity, explore how attitudes impact the provision of services, and educate the public about the trauma that is often part of the FASD picture (the common messaging and language guides discussed in this post are great resources for these issues).
• Regarding justice involvement, participants want to see a shift toward flexible, creative, individualized, sensible, and realistic expectations.
• Ensuring safe drinking levels and harm reduction is targeted for all demographic groups, not only those deemed to be “high-risk.”
• Evaluation of program outcomes that go beyond cost analysis, because this approach results in people with FASD being portrayed as a burden.
• Participants shared that research on successful outcomes must be: “practical, interconnected across multiple systems, country-wide rather than region-specific, and always involve consultation with individuals living with FASD and their families.”

Q: Participants emphasized the value of peer training and learning exemplary parenting practices from other caregivers of individuals with FASD. What are your go-to resources for learning from other caregivers? 

A: I am a member of Shifting the Paradigm Toward a Neurobehavioural Approach on facebook. I also follow several FASD organizations and blogs that provide evidence based information, are not shame based and are respectful in the way people and children with FASD are talked about. I don’t really have a circle I can check in with, now I do with FAC, but mostly I consult the literature all the time, several times a week. I also review grey literature and organization promising practices and parent voice often. 

A: The only resources I have is meeting face-to-face with other parents/cargivers.

Q: The final line in this section was: “the ultimate hope is that our systems might one day develop the capacity to recognize the unique needs of each individual and value different forms of success for people living with FASD.” Can you share what success means for you and your family members? 

A: Right now success is our daughter attending full day grade 1 with the school finally believing us and implementing sensory breaks, a visual schedule, extra support with classroom instruction and a visual timer for transitions. Since this has become a part of her life, we have seen a complete disappearance of violence and aggression after school and on weekends. Her hyperactivity has diminished. Those small accommodations, for now at least, have given all of us some quality of life and peace. Sometimes it really can be that simple, to just trust that parents know what they are talking about and what the child needs to settle and learn. Success right now is me being able to cook while my children colour, play lego or do something quietly. I can cook supper…that was not a possibility before the school began accommodating. Our daughter with FASD could not stay safe, could not settle her body, could not refrain from violence and property destruction and could not play with anything and have any imaginative capacity at all. This is a beautiful success for as long as we have to savour it. 

A: For me success can change from day to day. Sometimes if might just mean that my child gets out of bed and other days it might be a huge accomplishment like completing something they have been working in for a long time. We all know that individuals with FASD experience failure so we need to create and environment so they can succeed.

Hello! I’m Dr. Marnie Makela and I’m one of the voices behind the CanFASD blog. I’m also a researcher with CanFASD and a Registered Psychologist in Edmonton, AB. I received my PhD in School and Clinical Child Psychology from the University of Alberta.  I work with individuals with FASD and other complex disabilities, their families, and their service providers to complete assessments and develop effective intervention plans that will create meaningful and positive life experiences.