The 9th day of the 9th month is a day set aside around the world as a day to raise awareness of Fetal Alcohol Spectrum Disorder.
Fetal Alcohol Spectrum Disorder (FASD) is an umbrella term to describe a group of developmental disorders that results from the exposure of a fetus to alcohol. FASD includes, Fetal Alcohol Syndrome (FAS), Partial FAS (pFAS), Alcohol-Related Neurodevelopmental Disorder (ARND), and Alcohol-Related Birth Defects (ARBD).
Only a small percentage of people recieve a diagnosis. Most remain unidentified or diagnosed with another disorder, such as ADHD. Some have physical characteristics, most look like everyone else. All have a “hidden disability – a traumatic brain injury that occurred before they were born.
Yet FASD does make itself known. If you have repeatedly heard many of these comments, from teachers, babysitters, relatives or even yourself, you likely are talking about a person with FASD:
“I know she’s capable, she just doesn’t try hard enough.”
“There’s just no motivation, unless it has to do with something he’s interested in.”
“She doesn’t listen…just tunes me out.”
“Her family life is very chaotic. The parenting skills are weak.”
“I’ve never met any one more stubborn.”
“She’s always looking for attention.”
“She is sixteen, but acts like she’s eight.”
“Consequences and rewards don’t work.”
“Why does he keep making the same mistakes.”
“How many times do I need to tell you.”
Without understanding it is not willful behaviour, many people judge and punish the child, instead of extending compassion, structure, guidance and support. If these children continue to struggle, most will develop secondary disabilities.
The secondary disabilities range from mental health problems, trouble with the law, alcohol and drug problems, sexual inappropriateness, school truancy, and homelessness. Without a proper diagnosis of FASD, and adjustments to the typical interventions for these secondary disabilities, further frustration and failure follow affected person and those trying to help.
Children do not need to be born with FASD. It is the most prevalent form of developmental disabilities. Yet it is preventable. Do not drink alcohol if you are planning on getting, or are, pregnant.
Many groups and organizations use 100% preventable in their slogans. And sure, if there was no alcohol or no unplanned pregnancies, FASD would be eradicated. Until that time however, we need to promote 0 alcohol for 9 months – but we also need to extend compassion and education to women who may have had a drink or continued to drink throughout their pregnancy.
We need to encourage women to talk to their health care providers about any alcohol use. A plan and supports could include:
Involvement of social service agencies to support both child, parent(s), caregiver(s), family throughout the lifespan of the child.
Educational interventions and supports based on child’s needs and strengths.
A loving, stable home with consistency, routines and structure allow a child with FASD to thrive and reduce the risk of secondary disabilities.
Medication to help manage hyperactivity, inability to focus, depression, aggression, anxiety.
Teaching or accessing alternative therapies and approaches, such as meditation, yoga, animal assisted therapy, bio-feedback.
While people with FASD can and do lead a rewarding life, many will require lifelong support.
For those already living with FASD, we need to advocate for community supports. We need to stop asking them to adapt to our world. We need to adapt supports to focus on their strengths and unique challenges. Some strengths of FASD include:
Artistic, musical, mechanical or athletic
Friendly, Outgoing, Affectionate
Willing, Helpful, Generous
Good with younger children
In my case, I tell my daughter she would be an excellent radio DJ as she can talk constantly about everything and nothing. She would be a great salesperson, greeter/hostess or shelf-stocker (especially if it had to do with Pokemon, books, music, video games or toys). She is usually the first to volunteer at school to help another child, adult or join in an event or fundraiser. She will do well, but only if a circle of people surround her who understand her and support her. Take away the supports and she will quickly shut down or escalate.
We must not forget about families and caregivers. Most need:
Education and up-to-date training.
Access to experienced professionals – but their knowledge of their child needs to be respected and taken into account. They are the true experts on their child.
Financial Resources to enable them to hire people to provide service to their child or to stay home to support and raise their child.
Understanding from friends and family. Children and adolescents with FASD do not respond to typical parenting.
Do not judge how someone is raising a child until you understand why.
Unsolicited advice is not needed. A hug, words of encouragement, an ear to listen or a shoulder to lean on is.
Families and caregivers need respite. Being an external brain is exhausting. Being on alert 24/7 is exhausting. Caregivers need time to relax and recharge.
Now you know a little about FASD there is no reason to not get involved. It is as simple as supporting someone who is pregnant be alcohol free, to learning more. Spread awareness, help a child, family or agency. You may have missed September 9, 2014 but understanding, compassion and help is needed year round.
And don’t forget: tag September 9, 2015.
Please note: I am an expert on my child. I have read books, researched extensively, taken classes and courses, and been to see professionals. I try to use only credible sources and up to date information – however the knowledge of FASD updated and changes as new discoveries made. If you feel I have at any time provided incorrect or outdated information, please comment on any of my posts. I will respond.