This article is part of our Summer 2020 Breaking Barriers. This installment focuses on parents of loved ones living with Fetal Alcohol Spectrum Disorder coming to grips with the realities of this unexpected, difficult, lifelong disability that was unknown two generations ago. If you'd like to read more stories from this issue, please subscribe to Breaking Barriers. This post was written by Enrico Di Giandomenico, a private consultant on FASD.
Fetal Alcohol Spectrum Disorder (FASD) may be the leading cause of developmental delay in children and adults. Individuals with this lifelong disability likely will require support throughout their entire lives. This disability happens along a spectrum, sometimes so mild that it is never recognized and sometimes resulting in behavioral, cognitive, and developmental delays. Because this disability has no cure, changes need to come from the supporting environment rather than from the individuals themselves.
I have found three areas to be most important for caregivers to focus on. The first is the difference between the individual’s chronological age vs. their developmental functioning. Typically, an individual with FASD functions at half of their chronological age until the age of 18; at which point they level off and remain consistent. As expectations are set, we need to keep this in mind.
The second area is a delay in the speed with which they process information. Once we ask them to complete a task, they need 10 to 30 seconds to process that request so that they can more effectively complete it.
The third area involves delays in executive functioning and daily adaptive living skills. Individuals with FASD can learn throughout their lifetime, but they may struggle to apply this to their day-to-day living.
From research and my work, I have found that caregivers, either family or professional, need these four things: Training, training, and more training to understand this disability and to stay on top of all the latest developments. Support and coaching by someone who understands the disability to provide caregivers with reminders and best practice ideas.
- Respite and/or relief. To provide stable and supportive living situations for individuals with FASD, caregivers require a few hours regularly to clear themselves of the daily stress and, at times, a weekend break to regenerate themselves for the day-to-day living requirements.
- Grief and loss counseling. As we come to understand this disability and learn of the limitations for our children, we may need support in accepting and adjusting our desires for the children and adults that we care for.
I want to encourage, reassure, and give hope to caregivers and those who are supporting individuals with this disability. While the road is long, difficult, and lonely at times, there is great opportunity for success for our loved ones with FASD. Given the proper environment and supports, they can have full, happy, and successfully interdependent lives.