A CBC freedom of information request to the Nova Scotia government has revealed a terrible reality for children with mental illness and their families. ChildrenContinue reading
Fetal Alcohol Spectrum Disorder is a permanent physical disability caused when a mother ingests alcohol during pregnancy. FASD is a spectrum and affects each individual differently, but there are many common characteristics. Prenatal alcohol exposure causes permanent brain injury; damage to the central nervous system; and has been linked to over 400 co-morbid medical conditions. Alcohol affects the developing fetus at all stages of pregnancy: there is so amount or safe time to drink alcohol during pregnancy.
The damage to the brain results in characteristics including learning disabilities; anxiety; difficulty understanding cause and effect; ADHD type symptoms; and developmental age significantly below chronological age. Most individuals with FASD have tremendous difficulty with time and money management and most will require supports with daily living throughout their lifetime. FASD is a full body disorder, and can cause damage to organs such as the heart and liver, and can cause a myriad of health issues such as arthritis and seizures. These issues are exacerbated by the fact that most individuals with FASD process medications differently and tend to experience extreme side effects.
Newest research indicates that 2-5% of the population in Canada and the U.S. are affected by FASD, though many are undiagnosed or misdiagnosed with disorders such as autism,ADHD, and Oppositional Defiance Disorder. Rates of FASD are significantly higher in our prison populations, as those affected frequently get in trouble with the law due to their impulsivity, inability to learn from consequences, and vulnerability to predators. This does not mean that people with FASD are dangerous: it means that we are criminalizing a brain based physical disability. We need to find a better way to support those affected.
Raising a child with FASD can be exhausting for caregivers. It is a 24/7 job. Supports are few and FASD knowledge is minimal, especially in the school system. Caregivers tell us they are desperate for trained respite providers. There is no cure for FASD and it is a lifelong disability, so caregivers worry what will happen to their “children” after they are gone.
We need to begin by addressing the stigma associated with FASD. No birth mother sets out to cause permanent brain damage to her child. 50% of pregnancies in Canada are unplanned according to Stats Can, and the damage of alcohol may have been done by the time a woman realizes she is pregnant. The birth mother may have been misinformed, or may be dealing with addictions issues. We also need to reduce stigmatization of individuals affected by FASD, and of their caregivers, since many are raised in adoptive and foster families.
6) Tell us about some of the new research that is giving families hope.
Hope is badly needed in the FASD community. Valuable research is being done, but some inspires fear and sadness instead of hope. A recent study indicated the life expectancy of someone withFASD is 34 years. This is shocking and unacceptable. One of our program partners and advisors, NeuroDevNet, is undertaking promising research in many areas, including innovative technology research; brain imaging; and developing an eye movement test to aid in FASD diagnosis. Their “Strongest Families” program is teaching us how we can better support our FASD families. They are collecting research data on our Fetal Alcohol Resource Program with a goal of having it replicated in other cities.
Can scientific research offer practical help to caregivers and our loved ones? You bet it can. I have the privilege of sitting on the boardContinue reading