With more widespread awareness and research into FASD parents who consumed alcohol during pregnancy are reaching out on how to get support, not just for their children, but for themselves too.
A significant barrier to FASD supports is receiving the diagnosis itself. Waitlists are incredibly long. Alcohol use needs to be documented on the persons birth records, a signed document can be provided by someone who can confirm that the parent was consuming alcohol during the pregnancy, or the parent themselves can provide a signed document confirming that they consumed alcohol during their pregnancy. Each of these come their own barriers.
The primary effects of FASD are physical and functional changes to your brain and how it works. The vast majority of these are hidden, which is why FASD is sometimes known as an “invisible disability”. However, FASD is a physical injury that requires care and attention to improve.
We encourage parents who have children that have been diagnosed with FASD to seek out further training and formal support. To get them started we teach them about the 5 pillars.
Pillar 1: Strengths
Understanding the strengths of someone with FASD is paramount for providing good outcomes. Each child will have their own unique strengths. It is important to recognize these strengths because they will determine what kind of programs and supports your child will have success with. Incorporate the strengths/interests into everyday tasks and use strengths-based language.
Pillar 2: Healthy Relationships
Healthy, trusting relationships are especially crucial to people with FASD and to fitting in. The need is great for the guidance, trust and unconditional acceptance that comes from good relationships. Conversely, the risks for being influenced by negative relationships are greater for people with FASD. Talk openly about the qualities of a real friend, suggest activities and events or places where the person can meet kind, safe people, and role play and practice good communication
Pillar 3: Promoting Self-Awareness
Self-awareness of how one’s brain and body function best provides the foundation for building resiliency and increasing personal coping strategies. Be honest, don’t patronize or beat around the bush, use concrete language, or try talking through pictures. Everyone is different and people do things differently. Try explaining, “I have found when I do it this way it works much better for me…”
Pillar 4: Map of Adaptation Strategies
Working with children with FASD is like developing a new map of what works. To develop the right fitting strategies (or “map”) and to promote successful outcomes it is crucial to know their unique needs, sensitivities and strengths. Develop plans together to prevent and problem solve difficulties using questions such as “What do you think will work for you?”
Develop strategies around a growing brain. A good metaphor is viewing the growing brain as a large toolbox full of many muscle tools. Small muscles (fingers, touching), big muscles (running, playing), feeling muscles, memory muscles, and social muscles. The more they use these tools in their toolbox, the stronger they will get!
Pillar 5: Team Support for FASD
A team approach will help parents better meet the complex needs of children with FASD. This can be formal or informal, but successful outcomes will emerge when people from home, school, and other organizations work together. Establish and communicate so everyone within the family knows the goals and changes you are making. Make sure everyone has a clear understanding of FASD and its effects. Seek out additional expertise and resources and include friends, family, and other natural supports whenever possible.