In 2016, the CanFASD Family Advisory Committee hosted a workshop that brought together caregivers, individuals with FASD, government and policy representatives, and researchers to identify and inform the research priorities of those who provide support to individuals with FASD. You can find the full workshop report here. We did a Q&A with FAC members about each of the themes: FASD as a Whole Body Disorder, Aging and Transitions, Supports and Strategies, and Advocating for Supports. Today’s post is Part 1, and includes reflections from FAC members on the first two themes.

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

The first theme from the Learning Together workshop was FASD as a Whole Body Disorder, meaning that that FASD impacts not only the brain, but also many systems within the body:

• Individuals with FASD experience multiple medical conditions (take a look at this survey of health conditions experienced by people with FASD).
• Individuals with FASD often experience mental health challenges in addition to the physical conditions related to the disorder.
• Despite these complex health issues, service providers tend not to recognize the connection between FASD and physical issues that may accompany the disability.
• Not feeling “heard” by healthcare professionals contributes to hesitation with the health care system.
• Non-medical interventions such as meditation, yoga, reiki, drumming, art therapy, physical exercise and movement, occupational therapy, and diet and nutrition emerged from the discussion as potential areas for exploration.

We asked FAC some follow-up questions about building strong relationships with healthcare professionals and the “real lives” of individuals with FASD:

Q: Workshop members explained that building stronger, trustful relationships with professionals would help to reduce hesitation around working with healthcare professionals. Can you reflect on some positive experiences you’ve had collaborating with healthcare professionals and what you have found contributes to a successful interaction with the healthcare system?   

A: So far, in the six years of our daughter’s life, we’ve really only had one consistently positive and respectful relationship with a healthcare provider, our current pediatrician. The reason why this relationship feels safe and is truly a collaboration is because this physician listens to us, in particular to me about my insights regarding our daughter’s triggers, strengths and challenges. He encouraged me to share peer reviewed literature with him and other literature on FASD with him when all other pediatricians had focused on our child’s ADHD symptoms, yet stimulants and other related medications caused a paradoxical effect for her, and caused increased stress for everyone in our family. He was the first physician to listen to us and believe that this could in fact be possible. He was the first pediatrician to value our insights and understanding of how FASD affects our daughter. We work together as a team. We respect him, his medical knowledge and efforts to support our family, and he respects our lived experience, my professional knowledge and understanding of mental health, and FASD. We share updates and new publications with each other. It feels mutually respectful and my partner and I feel like valued members of our child’s medical team, even if the other health care professionals on the circle of care are not as inclusive or appreciative of our knowledge and lived experience, our pediatrician is.

A: Our experience with the healthcare system, the justice system and the educational system have been for the most part very positive because we chose early on to be transparent about our challenges and daily realities.  We made ourselves vulnerable and the people who work in the system responded with care and empathy.  When we try to hide or to ignore problems we make people doubt us.  Being open and honest is difficult and scary but the rewards are immense!

Q: Workshop participants shared that exposure to the “real lives” of individuals and families living with FASD like eating dinner together or attending camp for kids with FASD would help professionals be better engaged and involved with individuals with FASD and their caregivers. What has worked for you when sharing the “real lives” of individuals and families with FASD? What questions would you like to be asked by professionals? 

A: When appropriate and without overshadowing the information I want to share with folks who ask me to speak about FASD and promising practices, I share about our daughter. For the most part, until joining FAC, it has not been well understood or supported by most family, friends or co-workers to share about the real life of raising our child with FASD, so it’s been pretty isolating much of the time. 

A: I live in a smaller community so there are more opportunities to meet people in the community. When I do FASD Training, I use real stories to get the point across.

The second theme from the workshop was Aging and Transitions. Workshop participants explored the challenges and issues associated with aging and transitions for people living with FASD, and would like to see research around:

• How to increase interdependence among people and systems, support autonomy with life skills, money management, and transportation and driving while also protecting safety from dangers of social media and internet, self-harm, and theft and fraud, and supporting healthy sexual development and behaviour.
• Exploring the long-term implications of incarceration for individuals with justice involvement (a related article in the news recently).
• Exploring whether our healthcare systems are prepared to support elderly adults with FASD with issues like quality of life and dementia
• How might secondary challenges (e.g., sexual health, addictions) associated with FASD change with age and what supports are needed for older adults?
• Enhancing access to education, job training and employment, housing, secure income, positive social interactions, and other meaningful activities is important.
• Caregivers of people with FASD also age, and with that may come challenging steps like navigating the processes of trusteeship, power of attorney, and will planning.

We asked FAC some follow-up questions about interdependence and aging out of systems:

Q: Can you talk to us about what interdependence means for you and your family members? 

A: Our child is still quite young, so many things continue to be ‘age appropriate’, but increasingly independence is encouraged and as we continue to try to help educators in our daughter’s life become FASD informed, as well as the good intentioned family and friends in our lives, we have to remind them that our daughter is doing well in certain areas of her life because there are accommodations and supports in place that help her to be successful and draw on her strengths. If we push for independence or treat her older than her developmental capacity, than are not parenting her effectively or considering the accommodations needed for the invisible, complex disability she lives with. Sometimes that looks like completing a ‘homework’ page together or colouring in a page on her colouring book together. It’s not coddling her or doing her work for her, it’s interdependence and working on accomplishing goals together. When she indicates that she can do something alone safely, we will always encourage that kind of new growth. But like anything, there are on and off days with FASD, and sometimes she needs our support more than others. It’s the not understanding of other people around us that make the interdependence seem strange or babying, but we know we are doing the right thing.

A: Interdependence means that I, as a caregiver and my child who as FASD, we need support in many aspect of our life.  For example, as an adult with FASD my child has access to support from her psychologist, her doctor, the neighbours who keep an eye on her, my friend who live not too far and has spare keys for my daughter’s house, another friend who she can phone for house repairs when we are away.  This web of support is essential and cover all aspect of her life.  We are blessed by a circle of friend and families that appreciate our many challenges and are ready to help!

Q: Loss of supports can happen when people with FASD “age out” of pediatric services or experience successes. What have you learned about transitions between systems?  

A: Life transitions are difficult for anybody.  Life transitions require support and care.  Many youth with FASD are often not living with their families.  However when they turn 18, the system assume that they can take care of themselves and most supports disappear.  Most families know that an 18 years old adult requires much support.  So in the context of children or adult with FASD, caregivers should seek out as many supports as possible.

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.