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knowfasd

We recently featured our newest project, KnowFASD, in the latest edition of our iNAT newsletter. For those of you who have not yet subscribed to the iNAT newsletter, here is some information about KnowFASD:

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 categorize and upload information.

Visit KnowFASD

In my search for intervention information for this blog, I come across many strategies and research studies aimed at children and youth with FASD, which is wonderful. Early intervention and lots of it is a great thing. However, the reality of the situation is that fetal alcohol spectrum disorders do not disappear with time. If you have an FASD as a child, you continue to have it as an adult.

Research by Streissguth et. al.1 shows that adolescents and adults with fetal alcohol spectrum disorders function academically at an early grade school level. Their average adaptive functioning level (i.e. daily living skills, socialization skills, communication skills) is at the level of a typically developing 7 year old. Sixty two percent of adolescents and adults with FASD showed significant maladaptive behaviours, such as poor attention and concentration, teasing/bullying, crying or laughing too easily, dependency, stubbornness, social withdrawal, impulsivity, anxiety, and sullenness).

In another study on young adults with FASD2, the secondary disabilities associated with FASD (such as disrupted school experience, difficulties in the workplace, trouble with the law,and difficulty living independently) are very apparent in adulthood. Approximately half of the participants had needed special education, with only 38% having passed primary school and only 13% having passed high school. Despite a majority of participants having received some sort of job training/preparation, only 13%  of participants had ever been employed in a regular job. Only 30% of participants in this study were either living independently or with a partner/family of their own. The remaining 60% were institutionalized or in a dependent-living situation.

Given that we often find that adults with FASD function at the level of school-aged children, ideally they should be provided with the same amount of support we would give to a child. However, this is not always the case. According to the Canadian Child Welfare Research Portal, children with disabilities in Canada  receive child welfare protection until the age of 19.  In addition to this, many individuals  with prenatal alcohol exposure do not receive an FASD diagnosis (but still experience neurobehavioural issues and difficulties with daily living), meaning that without a diagnosis they might be cut off from child protective services at an earlier age (children and youth without disabilities in the child welfare system are eligible for child protective services until age 16-19, depending on the province).

Becoming an adult, leaving the  school system, and no longer receiving child welfare services can be a huge loss of consistency and support.

All of this begs the question: What are we doing to support adults with FASD?

In a recent article from the Sudbury Star entitled “We’re just different”, Matthew Pakozdy, a young adult with FASD, speaks about the difficulties and successes of living with FASD.

The take home message from this article? supports are needed for children and adults alike with FASD, and the right supports can make a difference. Pakozdy credits a supportive mother, reliable caregivers/advocates, support staff and friends for the positive changes he has made in his life.

A few other things mentioned in the article as essential supports for individuals with FASD are a permanent cellphone with easily accessible emergency phone numbers, regular income, housing alternatives, and help to foster emotional control and healthy relationships.

With increased awareness and research about FASD, organizations are jumping on board to support adults with FASD:  

Check out Community Living British Columbia‘s “Supporting Success for Adults with FASD”, an online resource for those who work with adults with FASD

MOFASThe Minnesota Organization on Fetal Alcohol Syndrome (MOFAS) holds a support group for adults affected by an FASD every Monday until April 2, 2013 in Saint Paul, MN.

For other posts about adult interventions, see our archived articles under Adult Interventions.

For our readers: Know of an organization that helps adults with FASD? Share it here or send us an email so we can spread the word!

 

References:

1.         Streissguth, A.P., et al., Fetal Alcohol Syndrome in adolescents and adults. The Journal of the American Medical Association, 1991. 265: p. 1961-1967.

2.         Spohr, H.-L., J. Willms, and H. Steinhausen, Fetal Alcohol Spectrum Disorders in young adulthood. The Journal of Pediatrics, 2007. 150(2): p. 175-179.e1.

 

Finding Hope,” A site from the province of BC about the struggles, successes, programs and lives of those affected by FASD, is well worth a look!

The full documentary on the Finding Hope website is a wonderfully touching and informative resource highlighting the lives of several individuals with FASD and their families interspersed with commentary from professionals in the field.

The documentary begins with a look at the lives of several families and their children who are affected by FASD. Interviews with the families and the children themselves provide great insight into what it’s like to live with FASD and raise a child with FASD. The videos contain discussion with professionals in the field regarding diagnosis, physical and neurological effects, cognitive and behavioural issues, prevention, intervention, and the importance of recognizing that the effects of FASD are due to a brain injury rather than wilful choices.

Several interventions are highlighted in the documentary:

Whitecrow Village:

The  camp (L.I.F.E sessions) experience at Whitecrow Village is featured. The camp reinforces the concepts of structure, predictability/consistency, and respect through adapted activities for children with team leaders who have FASD themselves. These activities run concurrently with education sessions for adults. Children, families, and Whitecrow Village staff work and learn together to create a sense of community.

Homeschooling:

One family in the documentary has created a homeschool of their own, hiring teachers to work with the children. They stress the importance of short segments of learning with active breaks and a calm predictable environment.

FASTrack Program:

The FASTrack program at Kennedy Trail Elementary School in Surrey BC is a program with strategies specific to FASD. The program advocates for the importance of communication between the home and school and the importance of translating to other schools the knowledge of what works in this program.

YWCA/Prevention Programs:

The YWCA provides programs to help women make good choices, which is essential in the prevention of FASD and the good parenting practices needed for mothers of children that are already affected

Other highlighted interventions are the ever-important dedicated teachers’ assistants, and provincial programs incorporating key workers  and respite workers who help parents with coping and communication strategies.

On the finding hope website, there is also a compilation of videos on a number of FASD related topics:

  • About FASD
  • Prevention
  • Assessment and Diagnosis
  • Resources for Parents
  • Resources for Educators

Each section contains videos, an overview, links to sites relevant to the topic, and some great downloads with resources and tips.

To our readers:

The documentary concludes with messages of hope from the families and professionals in the video.
Where do you find hope?
Are there any specific interventions or people that have given you hope?

With so much information to take in, it’s sometimes easy to get caught up in research papers, news articles, and statistics and become detached from the real reason that all of this information exists in the first place: The individual people who are affected by FASD.

So for this week’s blog post, I thought I’d take things to a more personal level and post a letter that I found through the National Organization on Fetal Alcohol Syndrome, written by a young lady with FASD.

100 Mile House Free Press published a letter written by Shirlana Vance that she had written and read aloud for FASD day on September 9 in 100 Mile House, BC. She writes with a confident and inspirational tone about her future goals along with the struggles she has dealt with and the help she has had along the way to get to the place where she is today. 

Shirlana speaks about bringing out the strengths and abilities in someone with FASD, stating that “Confidence is key most definitely, along with structure and stability”.

 

Click here to read Shirlana’s letter.

 

 

And, in keeping with our intervention theme, the article notes that Shirlana recently completed a youth employment services program at The Cariboo Family Enrichment Centre (CFEC) in 100 Mile House. CFEC is a non-profit society which runs numerous programs and services for families and individuals, based on the needs of the community, including a program specific to FASD which provides support, information, resources, and assistance with accessing diagnosis and assessment.

To Our Readers

We encourage you to share your stories here, too.

Do you know someone with FASD  who has had a particularly positive influence in their life, like Shirlana has with her parents and CFEC?

Please feel free to share with a comment!

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