June 5th, 2018 EFAN Meeting Agendas



Wondering what we are discussing at our next Edmonton and area Fetal Alcohol Network Society meetings? Just click to download the agenda!

The meetings will be held Tuesday, June 5th, 2018 at 10320 – 146 Street, Edmonton. Hope to see you there!


FASD Life: To Share or Not to Share

our sacred breath

That is the dilemma in my head lately after reading a post from someone about why we should not share our children’s struggles in this age of social media without their permission. I understand the premise, however can a young child, especially one with a developmental disability, offer consent? Another post I read awhile back from someone else said they’d never share anything they didn’t want their child to read – however isn’t that putting our values onto our children? We may be open to sharing much more about ourselves than our children.

Without sharing personal stories however, will we see change? Will those in positions of power to make legislative changes truly understand if we don’t share our struggles? Will teachers, neighbours, family members or other people who work or interact with our children truly understand if we do not disclose the real and raw struggles we face each…

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Tuesday’s Tips: What We See, What We Think, What’s Really Going On!

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What We See: Noncompliance (Not obeying rules).

What We Think: Doing it purposely, attention seeking, stubborn.

What’s REALLY Going On: Difficulty translating verbal directions into action, does not understand.

What We See: Not sitting still.

What We Think: Seeking attention, bothering others, doing it on purpose.

What’s REALLY Going On: Neurologically based need to move while learning, sensory overload.

What We See: Poor social judgement.

What We Think: Poor parenting, deviancy, doing it on purpose.

What’s REALLY Going On: Not able to interpret social cues from peers, does not know what to do in social settings.

What We See: Repeatedly making the same mistakes.

What We Think: Doing it on purpose, manipulative.

What’s REALLY Going On: Cannot link cause and effect, cannot see similarities, difficulty generalizing from one event to another.

Remember, it’s about trying differently not harder. If something does not work, try something else!


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If you’ve taken a physical first aid course; you’ve learned the skills needed to help someone experiencing a sudden illness or injury.

People can also have mental health crisis, and it is important that more Canadians know how to provide help in these situations too.

Register now to become a Mental Health First Aider!

Click to download registration poster: MHFA Registration Poster – May 2018 (1)



Red Shoes Rock: Take Up The Challenge This Summer


Thanks to our friends at Red Shoes Rock (https://www.facebook.com/RedShoesRock/), we will be taking up their challenge this summer in sporting red shoes as we roll, step, kick, nod, wave, blink, and run to build awareness around Fetal Alcohol Spectrum Disorder (FASD) in an aim to make Edmonton and surrounding area the most FASD friendly city in Canada.

Stay tuned for more details but get your Red Shoes ready to Rock On!




New Prevalence Estimates of Fetal Alcohol Spectrum Disorders Range From 1 to 5 Percent in U.S. Communities


A study of more than 6,000 first-graders across 4 U.S. communities has found that a significant number of children have fetal alcohol spectrum disorders (FASD), with conservative rates ranging from 1 to 5 percent in community samples. The new findings represent more accurate prevalence estimates of FASD than prior research. Previous FASD estimates were based on smaller study populations and did not reflect the overall U.S. population.

The term FASD represents a range of health effects caused by prenatal alcohol exposure. Individuals with FASD may experience growth deficiencies, facial abnormalities, and organ damage, including to the brain. The effects of prenatal alcohol exposure on the brain can result in deficits that contribute to physical, cognitive, behavioral, and social challenges throughout life.

“Prenatal alcohol exposure is a leading preventable cause of developmental disabilities worldwide,” says George F. Koob, Ph.D., Director of the National Institute on Alcohol Abuse and Alcoholism (NIAAA). “Estimating the prevalence of FASD in the United States has been complex due to the challenges in identifying prenatally exposed children. The findings of this study confirm that FASD is a significant public health problem, and strategies to expand screening, diagnosis, prevention, and treatment are needed to address it.”

The study was conducted by the Collaboration on FASD Prevalence (CoFASP) consortium, which studies the prevalence of FASD among U.S. schoolchildren. Before the study began, consortium members established standardized classification criteria for FASD based on facial features, growth, and neurodevelopmental performance. The findings from the study, which was led by Philip May, Ph.D., of the University of North Carolina at Chapel Hill’s Nutrition Research Institute in Kannapolis, and Christina Chambers, Ph.D., of the University of California San Diego School of Medicine, were reported in JAMA in February.

Researchers collected data between 2010 and 2016 on 6,639 children in 4 communities from the U.S. Midwest, Rocky Mountain, Southeast, and Pacific Southwest regions. The sites were selected to be more reflective of U.S. community populations than previous studies. At each site, first-graders in public and private schools were recruited across two academic years and evaluated based on the FASD criteria. Prenatal alcohol exposure was assessed by interviewing mothers or other close relatives.

The researchers found that the prevalence estimates for FASD among the selected sites ranged from 1.1 to 5 percent. This was the most conservative estimate and assumed no additional cases of FASD would be found in first-graders who did not participate in the study. When the researchers used a “weighted prevalence,” an estimate that accounts for those who were eligible but did not participate in the study, the estimated prevalence of FASD was higher—ranging from 3.1 to 9.8 percent among the study sites. Of the 222 children diagnosed with FASD in the study, only 2 had been previously diagnosed with FASD, although many parents and guardians were aware of the children’s learning and behavioral challenges. This finding suggests that children with FASD often go undiagnosed or misdiagnosed.

“We believe our study is the first to use school-based assessments, a common methodology and classification system, and expert in-person evaluations for the full range of FASD on many children from communities across the United States,” says Dr. May.

“This comprehensive approach should reflect estimates that more closely resemble the prevalence of FASD in the United States, and further highlights the public health burden of FASD,” adds Dr. Chambers.

Estimating the prevalence of FASD is challenging, in part, because FASD can be difficult to distinguish from other developmental disorders that share certain learning and behavioral deficits. Also, individuals can have FASD without the hallmark facial features of fetal alcohol syndrome.

Most previous studies of FASD prevalence in the United States have been conducted using surveillance or clinic-based studies, which misses undiagnosed cases of FASD and leads to underestimates. Studies have also been conducted among high-risk populations, which results in prevalence rates that cannot be generalized to the population as a whole.

The previously accepted FASD estimate of 1 percent of U.S. children resulted from clinic-based studies and studies of single communities, which assessed small samples among selected populations.

“Because of the hidden nature of the disabilities, some have continued to believe that FASD is a rare disorder, or they question its prevalence,” says Tom Donaldson, President of the National Organization on Fetal Alcohol Syndrome (NOFAS).

“I would say this research truly once and for all firmly established the magnitude of FASD. It’s now really time for us to push forward and make this study the catalyst for change and progress.”

Soon after the findings were published in JAMA, the lead study authors, NIAAA experts, and FASD advocates came together to discuss the significance of the study. A recording of the teleconference is available at:

May, P.A.; Chambers, C.D.; Kalberg, W.O.; Zellner, J.; Feldman, H.; Buckley, D.; et al. Prevalence of fetal alcohol spectrum disorders in 4 U.S. communities. JAMA 319(5):474–482, 2018. PMID: 29411031

Tuesday’s Tip: Feeling Things Differently

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Children and youth with FASD may have differences with the way they interpret sensory information. They may show signs of being hyper-sensitive (feeling things too much) or being hypo-sensitive (not feeling things enough) to the senses of touch, taste, smell, sight and sound. Children may be hyper-sensitive in one area, but hypo-sensitive in another. For example, a child might be over-sensitive to light, but under-sensitive to touch.

Hyper-sensitive children can easily feel everything. For example, clothing tags scratch, bright sunlight blinds, spicy food burns, loud intercoms startle.

Hypo-sensitive children have a difficult time feeling. For example, they may have a high pain threshold, not feel hot or cold, hold a pencil tightly and push hard onto the paper to see the pencil make a mark. 

Often as the environmental stimulus increases or decreases, so may the child’s behaviour.

Teach your child to recognize their sensory issues and encourage them to ask for things that will help, such as sunglasses or turning down the volume. 

Remember, it’s about trying differently not harder. If something does not work, try something else!

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