CANFASD: Supporting FASD Children and their Families - Hands not Hurdles
Photo by Liane Metzler on Unsplash
Hands, not Hurdles: Helping Children with FASD and their Families is designed to provide a condensed, more easily accessible version of the FASD report released by the Office of the Representative for Children and Youth (RCY) in 2021.
In addition to continuing to increase awareness and understanding about FASD, Hands, not Hurdles also provides tips and other suggested resources for community practitioners including teachers, counsellors, recreational workers, and clinicians.
The booklet is structured around the five key points of the report:
FASD is misunderstood, leading to blame, shame, discrimination, and racism.
FASD is a term that describes the life-long effects that can occur because of prenatal alcohol exposure.
Racism surrounding FASD results in harmful and inaccurate assumptions that FASD is more common among First Nations, Inuit, and Metis children.
Anyone can have FASD. It is not limited to any racial, ethnic, cultural, or geographic group. It is a disability that is found across all demographics throughout the world.
Intelligence and executive functioning are different. Children and youth with FASD can be very intelligent and still struggle with “executive functioning,” which includes capability in areas such as organization, planning and cognitive flexibility.
Busting FASD labels helps to improve understanding and reduce stigma. (More information about busting FASD labels can be accessed on page 33 of RCY’s Excluded Report (April 2021)
Public messaging about FASD tends to focus on prevention and FASD is often described as a preventable condition. However, vulnerability to FASD is highest in the early weeks of a pregnancy when someone may not yet be aware that they are pregnant, and support is often lacking for those mothers who might need extra help during their pregnancy to prevent FASD.
Blame and misconceptions are harmful to children and youth with FASD and their families.
All children and youth, including those with FASD, have the right to thrive.
Children and youth with FASD have the same rights as all other children and youth (the right to identity, culture, connection, and safety; the right to education, health care and disability supports; the right to be heard and be free from discrimination). These rights are not being upheld by service providers and systems currently in place to support children and youth.
The right to education is denied to many children and youth with FASD.
Children and youth with FASD are excluded in every aspect of their lives.
Children and youth with FASD are excluded in their schools and their communities.
Government ministries supporting children and youth with special (support) needs have established funding priorities but children and youth with FASD are not often included.
Inclusion is not optional. It is a basic right, and it is essential for a child to thrive.
Families of children and youth with FASD are isolated and desperate for support.
Families whose children have FASD receive limited supports compared to those whose children have other support needs. They are often excluded and alone in their journeys supporting their children…Many families do not have access to FASD services in their communities such as the FASD Key Worker Support Program; and the majority of families do not have access to respite at all.
Parents are left alone to take on the role of caregiver, system navigator, administrative assistant, respite worker, classroom worker and more, leaving them stretched thin and in many cases having to leave their employment.
Because of fear and stigma, parents often do not seek the limited funding that is available to them. They also describe feeling judged by others regarding the diagnosis and for the tools and strategies they use with their children.
Families need support, and they need breaks. Without support and without breaks, families face burnout which can have negative impacts on the child, the family, and the community.
Children and youth with FASD live happy and healthy lives when given the right supports.
Children and youth with FASD are remarkable at finding new ways to learn, participate and adapt in a world that is not set up for them.
Supportive adults, positive peer relationships and inclusive environments can help children and youth with FASD to feel safe, express their needs and experience success.
Creating a supportive environment starts with understanding FASD, and the unique needs and abilities of children, youth and families who are affected by it. More information in an accessible, interactive format can be found at Me & My FASD
Thriving looks different for everyone, and therefore the strategies needed to support children and youth with FASD must be guided by children and youth with FASD and their families…. It is important to take time to learn about their needs to support them. Creative strategies and a flexible and holistic system of care are essential. Early and ongoing supports are also critical and can prevent mental health challenges such as depression and anxiety later in life.
Promote active inclusion: listen to children, youth and families who are affected by FASD, and learn what belonging and inclusion feel like to them so that environments and settings can be set up to enable their success.
For each of the five sections, a cartoon-style graphic is provided to illustrate the main discussion points, along with a list of suggested actions that can be taken to better support and integrate children and youth with FASD and their families in community settings and to promote advocacy. There is also a well-designed chart of social labels versus lived realities, with suggestions for busting FASD labels in each of the categories.
The 2021 report can be found here: Excluded: Increasing Understanding. Support and Inclusion for Children with FASD and their Families