Imagine wearing a pair of badly fitting shoes day in and day out. What would this do to your walk, to your well-being? You’d develop blisters and foot pain. Continuing to wear the shoes would hamper your movement – you’d likely change how you walk, maybe limp a bit. You’d be frustrated, a little more irritable and you would definitely not jump at the chance to go hiking!
The responsive coping mechanisms that develop as a result of a poor fit between someone and their environment are a natural reaction. We all do it when the “fit” is not right. For someone with FASD (Fetal Alcohol Syndrome Disorder), this bad fit is unfortunately between their brain and their environment. And these natural coping responses can be as disabling as the primary characteristics caused by alcohol on a fetus’s developing brain.
The primary effects of FASD are physical and functional changes to an individual`s brain and how it works. The vast majority of these are hidden, which is why FASD is sometimes known as an “invisible disability”. Yet FASD is a physical injury that – like all physical injuries – needs care and attention to improve. The key to this care and attention is improving the fit between the individual’s brain/body and the world around.
Here are 5 pillars to foster “good fit” outcomes for people with FASD.
Pillar 1: Strengths
Understanding the strengths of someone with FASD is paramount for providing good fit outcomes in a challenging world. The strengths of a person with FASD are where capabilities and avenues for greatest potential lie. The map of strengths for each person with FASD is unique. Therefore your challenge is to be attuned to specific strengths, and tailor programs and supports around these areas.
- Make lists of the individual traits that you value and post them in prominent places.
- Incorporate the strengths/interests into everyday tasks. E.g., if technology use is a strength, make sure their job is to Google movie times on the computer.
- Use strengths-based language… e.g., “I believe in you.”
Pillar 2: Healthy Relationships
Relationships are an essential part of all of our lives. They ground us, keep us connected and help us feel like we have value. 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 leading are greater for people with FASD in unhealthy relationships.
- Talk openly about the qualities of a real friend.
- Suggest activities and events or places where the person can meet kind, safe people.
- Role play and practice good friend communication.
- Make a visual chart about who are the healthy and unhealthy friends in a person`s life.
Pillar 3: Promoting Self-Awareness
From a young age it is important for people with FASD to learn about their unique brain differences and their specific strengths and needs. Self-esteem increases for all of us when truths about ourselves are listened to, respected and celebrated. 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; talk with pictures.
- Use language of difference rather than disability whenever possible. Provide helpful scripts for talking to others. Role play potential conversations.
- : Everyone is different and people do things differently. I have found when I do it this way it works much better for me.
Pillar 4: Map of Adaptation Strategies
Assuming you know the best strategy for a person with FASD is like using a road map of Toronto when you’re actually trying to find your way around Vancouver. The map works in one city, but not in the other. Using the wrong map is confusing, since some roads have the same name, but in Vancouver they may lead to dead ends.
Working with people with FASD is like developing a new map of what works… not necessarily a better one – just a different one. To develop the right fitting strategies to promote successful outcomes it is crucial to know a person’s unique needs, sensitivities and strengths.
- Develop plans together to prevent and problem solve difficulties. “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 tool box full of many muscle tools. Small muscle (fingers, touching), big muscle (running, playing), feeling muscle, memory muscle, social muscle… The more we use these tools the stronger they get!
Pillar 5: Team Support
A team approach will help care providers better meet the complex needs of people with FASD. This can be formal or informal, but successful outcomes will emerge when people from home, school, social service workers and organizations work together.
- Establish and communicate so everyone knows the goals, likely challenges and how to define success.
- Make sure everyone has a clear understanding of FASD and its effects. Seek out additional expertise and resources.
- Include parents and natural supports whenever possible.
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