Student Spotlight: Aamena Kapasi (University of Alberta)

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Aamena Kapasi is a PhD student in the School and Clinical Child Psychology program at the University of Alberta. She completed her BSc at the University of Alberta with a specialization in Psychology, and her MA in Counselling Psychology at the University of Western Ontario. She has a passion for both research and clinical work with children, youth, and families. Aamena’s doctoral research is focused on supports and interventions for individuals with FASD, and she is currently working under the supervision of Dr. Jacquie Pei and Dr. Carmen Rasmussen. 

The ability to manage your thoughts, impulses, and emotions is an essential skill in order to stay calm, focused, and alert in everyday situations. This ability is called self-regulation, and is an area that individuals with Fetal Alcohol Spectrum Disorder (FASD) often struggle with.

The Alert Program®, developed by Williams & Shellenberger (1996), is a self-regulation training program with reported positive outcomes for children with FASD. In our study, the Alert Program® was adapted and administered to adolescents with FASD. It is essential to focus on supporting individuals with FASD throughout the lifespan, as adolescents with FASD are at a critical age of change and growth, and can benefit from targeted interventions.

The self-regulation intervention is a twelve session, one-on-one program where the adolescent meets with a trained interventionist to learn how to identify their internal state of regulation, be it low (e.g., tired, bored, distracted), high (e.g., hyper, jittery, stressed) or just right (e.g., calm, attentive, focused). They then learn strategies to help them move between the different levels, and specifically remain in a just right place for times when they need to focus, such as in the classroom at school. These strategies may involve using the mouth (e.g., sucking on a hard candy), movement (e.g., chair push-ups), touch (e.g., play doh), eyes (e.g., a lava lamp), and ears (e.g., listening to music). Adolescents then work with the interventionist to integrate this new knowledge into their daily life in order for them to function better at home, school, and other environments. The intervention is tailored for each participant, so the vocabulary and strategies fit with the adolescent’s personal preferences and environmental circumstances.

Pre, post, and follow up testing is completed in order to monitor changes in behavioural, cognitive, and physiological areas. We are investigating changes in adaptive and disruptive behaviours, thinking and reasoning such as impulsivity, decision making, attention, and physiological changes including cortisol levels and sleep. By using a variety of measures, we are hoping to increase our understanding of how a self-regulation intervention may benefit adolescents with FASD.

Exploring ways to improve self-regulation in adolescents with FASD allows for the development of more effective intervention initiatives that may help adolescents with FASD best access their strengths and improve overall outcomes for this group. Increasing self-regulation abilities in adolescents with FASD may ultimately contribute to reducing the risk of negative outcomes common in the FASD population, helping them transition more successfully into adulthood.

If you have any questions about the research or would like to get in contact with Aamena Kapasi, she can be reached at kapasi@ualberta.ca.

Aamena Kapasi is also currently involved in multiple other research projects, including studies investigating adverse childhood experiences in children with prenatal alcohol exposure, employment success in adults with FASD, the relationship between executive functioning and maternal drinking, and developing a model of intervention research in FASD.

During her Masters, Aamena Kapasi also conducted research with caregivers of children with prenatal alcohol exposure under the supervision of Dr. Jason Brown. If you are interested in learning more about this work, please see the links below.

http://onlinelibrary.wiley.com/doi/10.1111/cfs.12288/abstract

http://ir.lib.uwo.ca/etd/2713/

https://link.springer.com/article/10.1007/s41252-017-0030-8

https://link.springer.com/article/10.1007/s10826-017-0776-7

Are you interested in having your research, or the research of one of your students, featured? Please send us a note through the contact page on the blog or email Kelly Coons (kelly.coons@canfasd.ca) or Marnie Makela (marnie.hutchison@gmail.com) for more information.

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Hello! I’m Dr. Kelly Harding (née Coons) and I’m one of the voices behind the CanFASD blog. I’m also the Research Coordinator and a Research Assistant with CanFASD working in Ontario, Canada. I received my PhD in Interdisciplinary Rural and Northern Health from Laurentian University.  My work focuses on health services in rural and Northern Ontario, with a particular focus on health care professionals in training and their preparation regarding FASD.

         

Resources for writing about FASD during (and after) International FASD Awareness Day 2017!

September 9th is International FASD Awareness Day!

September 9 was chosen to highlight the 9 months of a pregnancy, when a woman should abstain from drinking alcohol. Share how you are spreading awareness about International FASD Day with us by using the hashtags #FASDay2017 and #CanFASD

To mark #FASDay 2017, we’re pleased to share two new resources. Because there is increased attention paid to FASD during this time of awareness, it is especially important for those writing about FASD to be armed with research-based information and respectful language. Both documents should be especially helpful for those writing and bringing awareness to FASD during the lead up to #FASDay 2017. Thank you for doing your part!

First is CanFASD’s Common FASD Messaging document, which provides research-based answers for common questions about people with FASD and the issues related to the disability. Take away messages are provided for prevalence and statistics, terminology and language, legal issues, and emerging research. Access the full document here.

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Selection from CanFASD Common FASD Messaging document

The second resource is a Language Guide produced by the Manitoba FASD Coalition and the Looking After Each Other project. The language guide provides dignity-promoting alternatives to stigma-inducing words or phrases commonly used in society.  It includes substitutes for discussing women who consumed alcohol during pregnancy as well as prevention terminology. Find the full document in English and French here.

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Helpful selection from the Language Guide: Promoting Dignity for those impacted by FASD
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Hello! I’m Dr. Marnie Makela and I’m one of the voices behind the CanFASD blog. I’m also a researcher with CanFASD and a Registered Psychologist in Edmonton, AB. I received my PhD in School and Clinical Child Psychology from the University of Alberta.  I work with individuals with FASD and other complex disabilities, their families, and their service providers to complete assessments and develop effective intervention plans that will create meaningful and positive life experiences. 

 

Alcohol by the Numbers – Thoughts on the Alcohol Harm in Canada Report

Upcoming events to keep on your radar:

Issues of Substance Conference 2017 – November 13 to 15, 2017 in Calgary

8th International Research Conference on Adolescents and Adults with FASD – April 18 to 21, 2018 in Vancouver

 

This headline made the news this summer: Alcohol leads to more hospitalizations than heart attacks do in Canada. The report by the Canadian Institute for Health Information outlines alcohol use across Canada and identifies population at risk of harm by alcohol. They released this infographic and the facts below:

 

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Canadian Institute for Health Information. Alcohol Harm in Canada: Examining Hospitalizations Entirely Caused by Alcohol and Strategies to Reduce Alcohol Harm. Ottawa, ON: CIHI; 2017.

I thought I would take an FASD prevention lens to some of the report findings… 

1. One of the questions addressed in the CIHI report was whether health practitioners are asking Canadians about their alcohol use. They reported “25% of males and 22% of females reported having talked about alcohol use with a health care provider in the past 2 years. For both males and females, Alberta had the highest reported rates of talking about alcohol use with a care provider.” These conversations are important because they can increase awareness among women of child-bearing age and their partners about the effects of drinking during pregnancy before they become pregnant. Our colleagues at the Girls, Women, Alcohol, and Pregnancy: Perspectives on FASD Prevention blog shared various resources and campaigns to promote conversations on alcohol between women and their healthcare professionals.

2. The report also noted hospitalizations caused entirely by alcohol among children and youth:

“The most common diagnoses for hospitalizations entirely caused by alcohol for children and youth age 10 to 19 were harmful alcohol use and alcohol intoxication (results not shown). Girls age 10 to 19 are more frequently hospitalized for alcohol than boys in this age group; this is the only period throughout the lifespan where hospitalizations entirely caused by alcohol among females outnumber those among males.”

In addition, they reference a study about binge drinking and associated health risk behaviours among high school students that suggests:

“Students who binge drank were more likely than both nondrinkers and current drinkers who did not binge to report poor school performance and involvement in other health risk behaviors such as riding with a driver who had been drinking, being currently sexually active, smoking cigarettes or cigars, being a victim of dating violence, attempting suicide, and using illicit drugs.”

Interventions for reducing alcohol-exposed pregnancies in youth include Project CHOICES. Support professionals can find information and training materials for this intervention here.

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CIHI

3. CanFASD believes that terms like low, moderate, and heavy can be confusing and subjective, and when we use them in messages about how much alcohol can be safely consumed by pregnant women they perpetuate controversy and confusion.

CIHI defined heavy drinking as having 5 or more drinks for men and 4 or more drinks for women on 1 occasion at least once a month over a 1-year period. Here’s a brochure by the Canadian Centre on Substance Abuse outlining Low-Risk Alcohol Guidelines. Also, Rethink Your Drinking created a video about the Low-Risk Alcohol Drinking Guidelines. I’m pleased to see both of these resources use the language of Zero is the Limit for women who are pregnant or hoping to become pregnant.

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Canada Low-Risk Alcohol Drinking Guidelines Brochure

 

 

 

 

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Hello! I’m Dr. Marnie Makela and I’m one of the voices behind the CanFASD blog. I’m also a researcher with CanFASD and a Registered Psychologist in Edmonton, AB. I received my PhD in School and Clinical Child Psychology from the University of Alberta.  I work with individuals with FASD and other complex disabilities, their families, and their service providers to complete assessments and develop effective intervention plans that will create meaningful and positive life experiences. 

 

How should we talk about FASD?

In June, I wrote a post summarizing a Manitoba report on the overlaps and gaps between expert and public understandings about FASD. Today, I’m sharing the researcher’s recommendations for changing the FASD conversation.

The authors identified two key issues that make it challenging for policymakers and service providers to cultivate public support for FASD initiatives:

  1. The narrow understanding of FASD as a problem that results from a woman’s lack of willpower and selfish decisions limits people’s thinking on what the province can do to make meaningful progress on the issue of FASD.
  2. The public’s understanding of people with FASD as having Forever Damaged Minds blocks productive thinking about how wraparound social services could help people lead more fulfilling lives.

The report suggests some intentional communication strategies for helping to reframe the way the public thinks about FASD. Here are some of their recommendations:

Reframe FASD as a contextual, not individual, issue by promoting 3 values: interdependence, ingenuity, and pragmatism: 

  • The public tends to blame women for causing FASD and sees people with FASD as “other” and separate from society. Framing the issue with interdependence can encourage thinking about the connections among us. If we are going to make progress on preventing and addressing a challenge like FASD, we need to recognize that when FASD affects one person in our province, it affects us all. We need to develop policies and programs that enhance everyone’s wellbeing across every phase of life, because we all benefit when everyone in the province is well supported. The impacts of FASD matter to our whole community, and we need to work together to find solutions to it.
  • With some ingenuity, even complex social issues can be addressed with innovative problem-solving – there are things society can, and should, do to prevent and address FASD.
  • Promoting pragmatism – that problems are solvable through realistic, step-by-step, practical, and commonsense actions—can counter fatalism by reframing the role of solutions like community-based social programs.

Communicators should put forward a definition of FASD—in educational materials, in schools, in doctors’ offices, on websites—that describes FASD as a disorder whose causes are biological and social. For example: 

  • Fetal alcohol spectrum disorder (FASD) can result from exposure to alcohol during pregnancy. Whether or not alcohol exposure leads to FASD depends on a complex set of biological and social factors that interact in different ways for each person. Biological factors can include a woman’s sensitivity to alcohol, metabolism, and size. Social factors like chronic stress, violence, trauma, or poverty can increase the chances that a baby might be born with FASD.

Communicators should clearly explain how FASD is directly related to the social environment by using explanatory chains: Screenshot 2017-08-16 13.03.19Always tell “wide-angle” stories:

  • Social science research has found that stories that are narrowly and exclusively about individuals reinforce individualistic thinking and focus people’s attention on “character flaws” as the explanations for poor outcomes. This is particularly concerning for stories about FASD issues, because people’s foundational cultural models of women and pregnancy already focus thinking on individual willpower and character and obscure the relevant contextual factors.
  • Instead, programs, social factors, and systems must also be characters in stories about FASD. Framing systems and contextual factors as key characters can help correct the public’s tendency to focus on individual women and their individual choices to the exclusion of social determinants.

Cue and expand productive cultural models to shift thinking away from individual blame and towards contextual factors:

  • Keep the public’s thinking focused on social inequity and systemic discrimination rather than individual will and choice.
  • If addiction can be clearly positioned as a cause of FASD, and the need for support in addressing addiction made explicit, public support for FASD prevention measures should increase.

Counter fatalism with detailed descriptions of effective solutions:

  • Communicators should reinforce the idea that positive change is possible by explaining the details of how programs and policies lead to better outcomes.
  • Be specific and highlight solutions, for example:

 

People with FASD may have an “invisible disability” that can include difficulties with memory and cognition, organization, and sensory overload. But the brain is always growing and changing, and innovative programs can help people with FASD manage their challenges with excellent results. For example, when young children with FASD are coached in cognitive skills like self-regulation and memory, and trained in coping with a variety of sensory experiences, their behaviour can improve tremendously over time. When these services are provided routinely and children and their families are given support and encouragement by therapists and behaviour specialists, children with FASD can learn to adapt to classroom environments and participate in a range of activities. Programs like these work for children with FASD, and it’s important that all children in Manitoba be able to access the support they need.

Explain how trauma experienced by Indigenous communities contributes to FASD:

  • Use the recognition that Indigenous communities face particular challenges to explain how the history of trauma in these communities is linked to FASD and can begin to be addressed with the right solutions.

Explain how not addressing FASD on a large scale stunts society’s growth:

  • People are aware that there are costs, but they need help seeing the full range of people and institutions affected. Making this information clear should increase support for public solutions. Pair cost information with solutions examples for optimally effective messages.

 

Remember to take a look at the full report here. It’s full of helpful examples and metaphors. The communication strategies start on page 39.

 

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Hello! I’m Dr. Marnie Makela and I’m one of the voices behind the CanFASD blog. I’m also a researcher with CanFASD and a Registered Psychologist in Edmonton, AB. I received my PhD in School and Clinical Child Psychology from the University of Alberta.  I work with individuals with FASD and other complex disabilities, their families, and their service providers to complete assessments and develop effective intervention plans that will create meaningful and positive life experiences. 

Honouring Jordan’s Principle

Honouring Jordan’s Principle is a report outlining the obstacles to accessing equitable health and social services for First Nations children with special healthcare needs living in Pinaymootang, Manitoba. Pinaymootang is a First Nations community about 220km north of Winnipeg.

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Jordan’s Principle is a child first principle intended to ensure that First Nations children do not experience denials, delays, or disruptions of public services ordinarily available to other children because of jurisdictional disputes between different levels of government or between departments within the same level of government. See here for more information.

In 2015, Pinaymootang First Nation partnered with McGill University to document the experience of Pinaymootang First Nation families and service providers in accessing services for children with special needs. Although the report did not specifically address children with FASD, estimates on the prevalence of FASD in northern Canadian communities range from 7.0 to 189.7 per 1,000 people (pg 28 – prevalence of FASD in Canada). Further, the service needs of children with FASD certainly fall within the scope of the research.

Interviews with families, service providers, and representatives from Indigenous organizations revealed:

  • Severe funding disparities for services provided on reserve.
  • Funding disparities were due to: ambiguous and vague bureaucratic guidelines and procedures regarding provincial vs federal responsibility; unequal funding between provincial and federal programs; and the mere distance Pinaymootang First Nation is from a service hub.
  • 3 main areas where First Nations children with special needs experience service disparities compared to Manitoba children living off reserve: (1) access to allied health services (occupational therapy, physiotherapy, speech and language therapy, and counselling); (2) reduced access to a range of prescription medications and assistive devices; and (3) some limitations in primary and specialized medical services because of shortages of qualified personnel and rurality.
  • Combined, these disparities resulted in denial, delays, and disruptions of services ordinarily available to other children in Manitoba. Children with special healthcare needs living in Pinaymootang did not receive the services they required to properly manage their medical and developmental conditions, improve their quality of life, or reach their maximum potential.
  • The lack of support services placed emotional and financial strain on the families and there were very limited support services for caregivers who felt overwhelmed, isolated, and frustrated. In fact, it was through the research project that families in very similar situations first learned of each other and the healthcare facility instituted bi-weekly family support meetings.
  • Families were faced with 3 scenarios to meet the needs of their children with complex healthcare needs: (1) stay where they were without access to services; (2) relocate to the city and move away from their support networks; or (3) transfer custody of their children to Child and Family Services.
  • The school and healthcare centre work hard to collaborate with other organizations and apply for grants in order to provide services to its community members. Many of their programs are delivered outside of core funding without certainty of continued funding, which hinders long-term strategies to address community needs.

Report recommendations:

1. All future decisions on the implementation of Jordan’s Principle on reserve should be made in ongoing consultation with First Nations.

2. All programs aimed at eliminating service disparities should aim to be culturally appropriate and sustainable.

3. Known and documented disparities in the services available to on reserve First Nations children and those ordinarily available to other children should be immediately and systematically remedied.

4. Budget allocations for on reserve services should be based on actual community needs, as determined by First Nations governments and service providers.

5. Funds to support the identification of community needs, and the development and implementation of programs to address those needs, should be allocated as core funding (not be conditional or grant-based).

6. Funding and other resources should be allocated to support collaborations across First Nations communities. These collaborations will facilitate the sharing of resources and the training and hiring of local First Nations staff in the Interlake region.

7. Investments in capacity building need to be made immediately. These investments should support both short-term (e.g., additional training on speech and language basics for case workers already working in communities) and long-term (e.g., funding the training of local First Nations workers in the allied health professions) capacity development.

8. Mechanisms should be put in place to improve communication and collaboration between the three levels of government (federal, provincial, and First Nations), as well as among departments within the same level of government.

9. Policy and services must be designed and implemented to address the needs of youth with disabilities and / or special healthcare needs as they transition into adulthood.

File 2017-03-10, 11 51 26 AM

Hello! I’m Dr. Marnie Makela and I’m one of the voices behind the CanFASD blog. I’m also a researcher with CanFASD and a Registered Psychologist in Edmonton, AB. I received my PhD in School and Clinical Child Psychology from the University of Alberta.  I work with individuals with FASD and other complex disabilities, their families, and their service providers to complete assessments and develop effective intervention plans that will create meaningful and positive life experiences. 

Success Story: Youth Archer Warren Collins wins Silver at NAIG!

In June, CBC did a piece titled Alberta archer shoots to win at North American Indigenous Games. When you read the article you’ll learn about Warren Collins, a 15-year-old from Cochrane, Alberta. Warren has FASD and says he wants to be an inspiration for others with disabilities.

“I want to tell them that no matter what disability you have, you can always accomplish your dreams … keep striving forward no matter the ups and downs you have”

Warren won gold at the 2016 Alberta Winter Games and he placed 28th/116 at a major competition in Las Vegas in February. Last week, he won silver at the North American Indigenous Games in Toronto! He competed in the 16 and under 3D Archery category, which tries to recreate a hunting environment in competition by having athletes shoot at life-size models of animals.

Congratulations, Warren!

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Photo of Warren Collins from CBC

 

Sneak Peek: An Employment Success Story!

Our survey is still open! Are you an adult with FASD who is working? Are you a caregiver or service provider for an adult with FASD who is working? Complete the survey here: https://www.surveymonkey.com/r/employmentstudy

Click here to download the poster: Employment Project Online Ad

I’m excited to share with you a clip of a video from our employment success study. Blair gave us  permission to share part of his video on the CanFASD blog. He is a baker at Earls restaurant and has worked there for 15 years!

Lucky for you – Blair is also sharing his story at the National FASD Conference in Calgary this fall. His session is on Wednesday October 25th at 10am and is titled ‘Beautiful Struggles.’ I can guarantee you will leave his session feeling inspired and hopeful. He truly is a storyteller.

Blair will speak about his personal experiences living with FASD. Share in the inspirational, humoristic and heartfelt storytelling of Blair Charters. Blair was diagnosed with FASD at the age of 16; although not before he experienced the all too familiar story of FASD with a disrupted school experience, trouble with the law, discrimination and addiction. Now, at the age of 37, Blair tells us how he overcame adversity to transform his life to one that is committed to his passion of motivational speaking, lifelong learning and helping others to create a positive life.

To register for the conference, follow this link to the 2017 Conference Registration Form. For a full listing of sessions with descriptions and times, see the 2017 Registration Guide.


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Hello! I’m Dr. Marnie Makela and I’m one of the voices behind the CanFASD blog. I’m also a researcher with CanFASD and a Registered Psychologist in Edmonton, AB. I received my PhD in School and Clinical Child Psychology from the University of Alberta.  I work with individuals with FASD and other complex disabilities, their families, and their service providers to complete assessments and develop effective intervention plans that will create meaningful and positive life experiences.