Fetal Alcohol Spectrum Disorder
Family raises awareness about the disorder
By Chris Michlewicz
A Surrey Ridge couple’s quest for information and help for their son’s complex medical condition has been aided by a small army of people with progress on their minds and kindness in their hearts.
Fetal Alcohol Spectrum Disorder (FASD), an umbrella term for a range of impairments to cognitive, physical and behavioral functions, is caused by a fetus’ exposure to alcohol during pregnancy. The Surrey Ridge family, who have chosen to remain anonymous in this article, has learned a great deal since their adopted adolescent son was assessed early this year and found to have signs of FASD. But there is still too little awareness and not enough medical professionals to help those with the disorders.
The medical community is learning more about FASD and its prevalence. They’re often referred to as “unseen disorders” because there are no outward signs, such as deformities, among those who have FASD, according to Heather Hotchkiss, principal brain injury specialist for the Colorado Department of Education. The condition manifests itself in behavioral issues and learning challenges. Hyperactivity, speech and language delays and difficulty with attention are common.
“There’s lots of kids out there whose condition has been misidentified or missed or underidentified,” partly due to lack of training and overlapping symptoms, said Hotchkiss.
Unfortunately, there is no medication or treatment for the spectrum disorders, and there is no cure. Hotchkiss, who the Surrey Ridge family says has been a tremendous support during a difficult journey, works primarily with special education teachers and parents to develop compensatory strategies and build an individualized learning plan for each person with FASD.
A nonprofit called Illuminate Colorado is also helping to connect FASD families with resources, medical and educational professionals, and each other through support and advocacy groups.
“Each individual is connected with occupational therapies, educational therapies, and behavioral and mental health supports that are really helpful,” said Hattie Landry, strategic initiatives manager for Illuminate Colorado.
The nonprofit also helps address alcohol abuse among women who are pregnant. Alcohol use during pregnancy, however, sometimes occurs before the mother learns she is expecting, and a steady rise in alcohol consumption among women of childbearing age could exacerbate a condition that a 2018 study in the Journal of the American Medical Association suggests could affect as many as 1 in 20 schoolchildren. A recent video by The FASD Project provides more statistics and prevention information (type ‘FASD Project’ into YouTube and click on the top video to learn more).
The Surrey Ridge family, who has fostered more than 20 children, adopted three, and has one biological child, said it was a challenge to find out why their son had trouble with impulse control and understanding cause and effect.
“He’s very talented, but the older he gets, the more he struggles with his focus, understanding and short-term memory,” his mom said.
Fortunately, they have allies in the Colorado Department of Education and Illuminate Colorado, both of which connect families with crucial resources and advocate for more awareness, recognition and research funding for the disorders.