Thursday 8 September 2016

Fetal Alcohol Resource Program and International FASD Awareness Day

Every year on September 9th, International FASD Awareness Day is observed.  Proclamations are issued in countries, states, provinces, and towns all around the world.  Bells are rung at 9:09 a.m. in every time zone from New Zealand to Alaska.  People all around the world gather for events to raise awareness about the dangers of drinking during pregnancy and the plight of individuals and families who struggle with Fetal Alcohol Spectrum Disorders (FASD).  The first FASD Day was celebrated on 9/9/99.  This day was chosen so that on the ninth day of the ninth month of the year, the world will remember that during the nine months of pregnancy a woman should abstain from alcohol.  Anytime is a good time to raise awareness about Fetal Alcohol Spectrum Disorders (FASD).

To help increase awareness of ways we can support the FASD community, I interviewed the three FASD program coordinators in my hometown of Ottawa (Canada), Nancy, Janet and Tanya:

1) What is FASD and what causes it?

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.

2)  What are the effects of FASD? 

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.

One common misconception is that there are visible facial features with FASD. This is only true in about 10% of people with FASD. 90% will have no visible characteristics: it is a true invisible disability.

3) How common is FASD? 

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.

FASD is very expensive for our society, estimated as costing us $1.8 billion a year

4)  What is most challenging for FASD caregivers? 

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.

Individuals with FASD do not qualify for many government funded supports such as Ontario’s Passport Program, as these programs are largely based on IQ. Most people with FASD have an IQ in the normal range, but their executive functioning is impaired. Government assistance programs need to put more weight on adaptive functioning measures and less on IQ.

Raising a child with FASD is expensive for caregivers, with added costs including medications, occupational therapy, psychological services, speech therapy, private tutoring and respite. Parents have to undertake careful financial planning including setting up trusts and buying RDSP’s, as most people with FASD will never be able to fully support themselves.

Siblings are also affected by the stress in an FASD household. They worry about having to take over the parents’ role after the parents are gone.

5)  How can we support FASD caregivers? At home, in school, in society? 

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.

We need GP’s and Obstetricians to give consistent guidelines to their patients that no amount of alcohol is safe in pregnancy. Our team is learning first hand that many physicians are still saying that alcohol in moderation is okay. We need our physicians trained in screening for possible FASD, and taught how to sensitively speak with a mother they suspect of having a child with FASD.

We need to support and replicate programs like our Fetal Alcohol Resource Program across Canada. Through education and community leadership development our program draws together resources, skills and knowledge that exists in Ottawa and provides community navigation for individuals affected by FASD and their families. We are a pilot project, and with support and funding, our program can be replicated across Canada to improve the lives of more families with FASD.

Within our communities, we can all support those living with FASD. Learn how you could offer respite to a family. Ask them what would be helpful. Listen. Offer to take the siblings on a special outing. Invite the whole family over for dinner. Educate yourself about the characteristics of FASD and don’t judge the child or parents for behavior issues that arise. Regular parenting guidelines don’t work with those affected by FASD. Include their children in birthday parties and outings. Teach your children about neuro-diversity. Spread the word about FASD to work toward prevention and reducing stigma. Support fundraising and awareness initiatives in your community including your local International FASD Awareness Day campaign.

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. 

If you would like more information about support for children and adults with FASD as well as research into treatment, you can click on these links. 

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