Being a Caregiver for My Son with FASD
Hello! I am Debbie Raymond, an adoptive single parent living in a small town in southeastern, Washington state, and fierce mama bear to two wonderful young adult children. I’m thrilled to be able to share with you about my life, challenges, hopes, and the realities of caring for my young adult son with an invisible disability.
For over 12 years, I documented, questioned, searched, educated myself, made inquiries, was ridiculed and judged for my child’s symptoms; all while I visited doctors with my son, and fought for an accurate diagnosis for his disability. He finally received the diagnosis last September, 2020 from the UWFAS Diagnostic Clinic at the age of 19. He has the incurable and lifelong disability fetal alcohol spectrum disorder. Unfortunately, in the USA, a diagnosis does not come with services or support for individuals with an FASD.
What is fetal alcohol spectrum disorder? It is the leading developmental disability in the world. It occurs when an infant is prenatally exposed to alcohol. There is no safe amount, type or kind of alcohol during any stage of pregnancy. Additionally, the lack of information, stigma and prevalence of FASD is a sad reality. In Canada an estimated 4% of the population have FASD. In the USA, the estimated number is 5%, or 1 in 20. This means we all know someone with FASD.
Individuals with FASD have strengths and talents like everyone else. Some of these include being artistic, creative, good with animals, working with children and/or the elderly. However, they generally lack executive functioning, have impulsivity, gaps in memory, are very vulnerable for exploitation, struggle with time management, often have physical comorbidities, and are developmentally generally about half their chronological age; just to name a few symptoms of their disability. Therefore, they generally need 24/7 supervision.
A day in my caregiver life includes being ON. From the time my son wakes, until I tuck him in to bed. This means every day, 365 days per year. He needs prompting, asks lots of questions, sometimes the same questions because of gaps in memory, needs calm reassurance and praise always even when I am tired, or not feeling 100%.
It also means I have very few people who understand, and fewer friends who help or want to help.
For me, that means at the age of 62, with no retirement and limited income, I am rewriting my life and creating a new purpose. Additionally, I am helping nurture and build my son’s strengths, so we can share and educate the world about FASD. As well as helping other families like ours, and hopefully building a compassionate informed community.
Since I am a solution seeker, my son and I are building on our strengths. On my Instagram I share content to educate about FASD, self-care tips, and building an audience to educate about FASD. For my son, he creates content to draw from his strengths. As he is gifted with dogs and training, he has been as well as documenting dog training tips daily.
Being a caregiver for a son with FASD changes daily. There are challenges, triumphs, wins, and losses. But we are forever adapting and doing our best to learn, grow, and advocate for people affected by this disability.
Do you have a story you would like to share on Talkative? Send us a submission! And if you haven’t already, make sure you signup for a free TAMVOES account so you can get started on tracking all of your vitals to stay up to date with your health as it changes. Learn more on the TAMVOES platform.
Debbie Raymond
TAMVOES Health Inc. 