The face of Fetal Alcohol Spectrum Disorder
- Chelsea Kerr
- Oct 9, 2024
- 4 min read
“Mom, what is wrong with me?” With tears in his eyes, my 11-year-old son climbed up on my bed and snuggled into my side. We had just gone to bed after a seven-hour-long appointment with a child psychologist specializing in post-adopt children and Fetal Alcohol Spectrum Disorder (FASD). He has known for a long time that something about him is different, but until now we haven't had many answers.
“FASD is caused by prenatal alcohol exposure, and its effects can range from mild to life-altering in their severity. The damage is irreparable and permanent. It affects up to 1 in 20 kids, yet remains largely undiagnosed and untreated,” (Jennifer Brookland, Detroit Free Press). We need to do more as parents, providers, and as a society to prevent FASD, and to help children and families currently struggling with its effects. There is not enough awareness within the foster care system, from health and mental health service providers, or with parents. Current legislation needs to be changed to diagnose FASD and classify it as a disability. We also need more state and national funding for services and programs to help children and families struggling with the effects of FASD.
“Children in the welfare system are ten times as likely to be affected with FASD, yet parents adopting children from the system are unaware of the symptoms, behaviors, and challenges associated with it, and have little information on the health and pregnancy of the birth mother,” (Renee Orr, MLSW). My son and his sister are adopted into our family and have been with us for 5 years. Over that time, we have experienced countless and never-ending challenges with our son’s behavior. We have experienced everything from mood swings and temper tantrums to lying, stealing, and running away from home. He has not been able to function in a public school and has attended a private clinic with one-on-one support from staff and teachers. He has been diagnosed with ADHD, ODD, CD, Autism, PTSD, Complex Childhood Trauma, and the list goes on and on. Every new provider gave us a different answer and a bleak outlook on his future. “In some ways, society pays the price for children who are exposed to alcohol in the womb. Yearly costs to society have been estimated to be between $1.3 billion and $4 billion annually. Meanwhile, funding to deal with FASD has fallen by more than half, from $27 million in 1998 to $12 million in 2021,” (Jennifer Brookland, Detroit Free Press). To gain the awareness and support needed, legislation needs to be changed for diagnosing and classifying FASD as a disability.
“Prenatal alcohol exposure can cause eye problems, hearing, speech and language disorders, developmental delays, and cognitive impairment. People with fetal alcohol syndrome, the most severe form of FASD, often struggle with cognitive function, learning and memory, concentration and focus, mood regulation, sleep, and social interactions. There’s no clear treatment path for FASD, it’s irreparable and irreversible. But that doesn’t mean a diagnosis doesn’t help,” (Jennifer Brookland, Detroit Free Press).”
To receive a true diagnosis requires a team of specialists in different fields of study. Unfortunately, very few teams across the country exist that can diagnose FASD, and testing is expensive. “Alarming gaps in FASD-related diagnostic and clinical resources are common throughout the United States. Among medical and behavioral health professionals, inconsistent use or limited knowledge of diagnostic criteria and clinical guidelines result in many (if not most) children and adults living with FASD going undiagnosed or misdiagnosed,” (Jennifer Brookland, Detroit Free Press). New legislation is needed to make diagnosis and treatment more accessible. The FASD Respect Act is legislation currently trying to be passed on a national level, this legislation would:
Promote and fund Education, Awareness, and Services across community agencies and systems of care for infants to adults
Provide funding to State and Tribal Systems for FASD Services throughout the lifespan
Create Centers for Excellence to guide States and other systems of care in expanding diagnostic capacity, public awareness, and outreach about FASD, and provide training and technical assistance on prevention, support, and interventions for people diagnosed with FASD. (Nofaspolicycenter.org)
Once laws and legislation have been updated it will make it easier to find funding and create programs to support these kids and families.
Currently, FASD is not classified as a disability that qualifies a child for an IEP in school, yet many children require substantial resources and accommodations to be able to succeed. Many families struggle to find therapy or programs to learn and help with the stress of day-to-day life. One program currently serving families with FASD is the Families Moving Forward program. “Clinically, the FMF Program combines positive behavior support (PBS) techniques with motivational interviewing (MI) and cognitive-behavioral treatment (CBT).” This and other programs like it can significantly impact children and families for the better. “One of the most rewarding parts of providing the Families Moving Forward intervention to caregivers of children with FASD is their transformation from feeling hopeless to having hope and confidence for their future,” (Brianna Megyesi, FMF Specialist). Utah has a website with resources and training available, but all the information is outdated (Utahfetalalcohol.org). As you can see, there is a lot of progress to be made in this area, but with awareness and dedication, we can create a better life for children and families with FASD.
As parents, teachers, providers, and citizens, it is our responsibility to build awareness and facilitate the necessary changes within the legislation to assist current and protect future children from the effects of FASD. By raising awareness, changing laws, and providing funding and programs for these children we can give them a better future. As I sat with my beautiful child and we talked about the things we had learned, and I explained the way his brain was working differently, he expressed how often he feels stupid or confused, and how friends, teachers, adults, and even his parents make him feel like a bad kid. It broke my heart. I am resolved to find a better way to interact, teach, and support him throughout his life as he catches up in his development. He deserves a better future. They all do.
Sources:
“This hidden disorder could affect 1 in 20 US kids: Why diagnosis and support remain low” Jennifer Brookland, Detroit Free Press
Press Release, https://www.klobuchar.senate.gov/
Websites:
4.8 Students Choice- Post 3
Comentarios