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KnowFASD

After what seems like far too long, KnowFASD is back in operation! To those of you who use the site regularly and have been waiting for its return, thank you for your patience.

If you have never visited the site, please feel free to drop by and check it out! Take a browse through the interactive home page and learn more/find help on the site’s wiki.

Our goal with KnowFASD is to provide a comprehensive site where viewers can learn about the neurobehavioural deficits associated with FASD throughout the lifespan and link to intervention options.

The main homepage of the website is an interactive interface where viewers can scroll through the lifespan of individuals with FASD, with neurobehavioural issues at each developmental stage presented as they may appear in day-to-day life. By clicking on a neurobehavioural issue, viewers are directed to a “wiki” (which works in a similar fashion to Wikipedia) housing information from current research on the neurobehavioural issue at hand. Each wiki page discusses a specific neurobehavioural issue: how it presents, potential causes, and potential consequences. At the bottom of each page, a link is provided to topic-specific intervention options.

Please feel free to visit the site, pass it along, and give us your feedback or suggestions. Check back often as we continue to upload information, links, and resources.

Visit KnowFASD

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Are you a caregiver of a child/youth with FASD living in Canada? 

If so, the University of Alberta and CanFASD need your help! We are conducting a short online survey in order to learn more about the needs and stresses associated with caring for a child/youth with FASD. It only takes 15-20 minutes and your responses are anonymous.

While existing research shows that caregivers of children with FASD experience a significant amount of stress, there is little published research investigating the specific needs of those caring for children with FASD, whether these needs are being met, and the relationship between caregiver needs and stress.

Through research such as this, we have the opportunity to influence practice and policy in order to improve services for caregivers and their children. Please take a moment to read the poster above for more information or go directly to the survey by clicking the link below.

Yes! I would like to complete the survey and contribute to FASD research!

 

Thank you!

MOFAS

 

In light of our last post on “ReMoved,” a film about foster care, we would like to share with you a foster care related event hosted by MOFAS.

On April 29, 2014, MOFAS will host “Creating Permanency for Foster and Kinship Families“, an event for parents, caregivers, and professionals. The event will discuss the challenges facing families caring for a child with difficult behaviours and offer techniques to develop solutions. For more information and contact info, see the link above.

Unfortunately, this is not an online event and is only offered in Minneapolis, so for those of you in the Minneapolis area: Enjoy!


This film may resonate with some of the caregivers out there.

ReMoved is an artistic portrayal of one child’s experience  in the foster care system. The film has won several awards from the 168 Film Festival in California and the Enfoque International Film Festival in Puerto Rico for its emotional representation of a the removal of a child from her biological family and subsequent foster placements- an experience many children with FASD are all to familiar with.

Several studies have examined the prevalence of children in care with FASD. In 2005, Fuchs et al. found that Canada’s own Manitoba had 1869 children in care with a disability. Thirty four percent of those children were diagnosed with an FASD. An additional 15% were suspected of having FASD but had not received a formal diagnosis. These numbers are disproportionately higher than the estimated prevalence of FASD in Canada, which is believed to be approximately 1% (Stade et el. 2009). In Chile, approximately 6.2% of children in care had FAS and approximately 15.8% had FASD (Mena et al. 1993). Russian foster homes and orphanages were reported to have approximately 15% FAS prevalence and approximately 42.7-68% FAS prevalence in orphanages specifically for children with special needs (Bubnov 2010). Brazilian orphanages reported similarly high numbers, with 27.7% of children having FASD (Stromland et al. 2011).

In addition to reviewing the familial factors that affect the outcomes of individuals with FASD,  Olson et al. (2009) reviewed the effects on the family of caring for a child with FASD. Findings included good quality of caregiving and  stability in the home as vital aspects to successful outcomes for those with FASD. The authors noted parental stress, lack of family support resources, need for constant vigilance, stress on marriage, and concerns about parenting and child management as some of the difficulties faced by families caring for individuals with FASD.

Clearly the need for effective foster placements is high, as this film strikingly demonstrates. For ideas on finding support for caregivers, visit our “caregiver support intervention options” page on KnowFASD.

 To our readers:

Did this film resonate with you as a caregiver? As an individual? Leave a comment to share your thoughts.

 

References:

Bubnov, A. A. (2010). Morfo-funktsional’naya diagnostika posledstviy vnutriutrobnogo alkogol’nogo vozdeystviya u detey rannego vozrasta. [Morpho-functional diagnosis of the consequences of prenatal alcohol exposure during pregnancy in early childhood]. Avtoreferat dissertatsii kan med nauk Pediatriya. [Dissertation Abstract, PhD. Pediatrics]. Yekaterinburg, Russia.

Fuchs, D., Burnside, L., Marchenski, S., & Murdy, A. (2005). Children with disabilities receiving services from child welfare agencies in Manitoba.Ottawa, ON: Centre of Excellence for Child Welfare. Retrieved from http://www.cecw-cepb.ca/sites/default/files/publications/en/DisabilitiesManitobaFinal.pdf.

Mena, M., Navarrete, P., Avila, P., Bedregal, P., & Berrios, X. (1993). Relation of paternal alcohol ingestion with offspring intellectual coefficient. Revista Medica de Chile, 121, 98–105.

Olson, H.C., Oti, R., Gelo, J., & Beck, S. (2009). “Family matters”: Fetal alcohol spectrum disorders and the family. Developmental Disabilities Research Reviews, 15, 235-249.

Stade, B., Ali, A., Bennett, D., Campbell, D., Johnston, M., Lens, C., Tran, S. & Koren, G. (2009). The burden of prenatal exposure to alcohol: revised measurement of cost. Canadian Journal of Clinical Pharmacology, 16, 91-102.

Strömland, K., Ventura, L. O., Mirzaei, L., Brandt, C., Fontes, K., Moura, A., et al. (2011). Fetal alcohol spectrum disorders in orphanage children in Brazil: A multidisciplinary study. Birth Defects Research Part A—Clinical and Molecular Teratology, 91, 332.

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