Raising a Child with FASD in Northern Ontario

Shelley L. Watson, Ph.D.
Elisa Radford-Paz, BA
Laurentian University
What is Fetal Alcohol Spectrum Disorder
Brief History of Family Research and Theory
Raising a Child with FASD in Northern Ontario
◦ Methodology and Rationale
◦ Preliminary Findings
Implications and Future Directions
Based on a 4-digit Diagnostic Code developed by
Astley and Clarren
Individuals are screened and then assessed in 4 areas:
◦ Growth deficiency
◦ FAS facial phenotype
◦ CNS damage or dysfunction
◦ Gestational exposure to alcohol
Ranking scores in each area range from 1 to 4
Possible Diagnoses: FAS, Partial FAS, FAE, ARND, ARBD
(Chudley et al., 2005)
First-generation research on the impact of child
disability on families (mothers) presented a bleak
picture of stress, burden, depression, social
isolation, and psychological dysfunction
◦ e.g., Solnit and Stark (1961)
As research became more refined, apparent that
disability per se is not necessarily a predictor of
◦ Hosts of variables appear to influence the relationship
between disability and adaptation or maladjustment
Family Adjustment and
Adaptation Response
(FAAR) Model
(Patterson & Garwick, 1998;
shown with permission)
Most research on family adaptation to
disability has focused on children with
mixed disability or type of disability is not
◦ Certain conditions predispose individuals to
specific adaptive and maladaptive behaviours,
strengths and weakness, as well as health
◦ Therefore, an exploration of family responses to
receiving different diagnoses is relevant
Little is known about families of children
with FASD
◦ No studies on families in Northern Ontario
Mixed Methods design
◦ Qualitative Interviews
 Basic Interpretive Qualitative Inquiry
(Merriam, 2000)
◦ Questionnaires
Hope Scale (Snyder et al., 1991)
Family Resource Scale (Dunst & Leet, 1986)
Parenting Stress Index – Short Form (Abidin, 1995)
Questionnaire on Resources and Stress – Short
Form (Friedrich, Greenberg & Crnic, 1983 )
 Family Crisis Oriented Personal Scales
Olson, & Larsen, 1991)
Basic Interpretive Qualitative Inquiry
◦ Seeks to describe, interpret, and understand
another’s perspective (Merriam, 2002)
 Focus on meaning
Parents’ ability to ascribe meaning to their
child’s disability and their own parenting
experiences significantly influences
◦ Families fare better when they are able to make meaning of
the disability (Pakenham, Sofronoff, & Samios, 2004)
Families in Northern Ontario
◦ Greater Sudbury, North Bay, Sault Ste. Marie, Thunder Bay
so far
◦ 33 parents/guardians from 25 families
 3 birth mothers
 1 birth mother to two children with FASD
1 birth father
16 adoptive and/or foster mothers
8 adoptive and/or foster fathers
2 custodial grandmothers
 also believe their daughters have FASD
 1 custodial great grandmother
 1 custodial great grandfather
 1 custodial sister
Parenting Stress Index
Overall level of parenting stress
• Parents who obtain a Total Stress score at or above
the 90th percentile are experiencing clinically
significant levels of stress.
• Nineteen parents scored above the 90th percentile
for Total Stress. The only parents to score lower
than the 90th percentile were Audrey and Tamara.
Basic behavioural characteristics of children
that make them either easy or difficult to
e.g., “My child’s sleeping or eating schedule was much
harder to establish than I expected”
“It’s just frustrating”
◦ Search for a diagnosis
◦ A focus on labels
“100% of the time, you just have to be aware”
◦ Challenges faced by family members
“She has been a tremendous support”
◦ What has helped
“Safe, appropriate respite”
◦ What would help
Northern Ontario issues
Specialists in Toronto
Lack of confirmed maternal drinking
“and it’s highly suspected because of pediatricians and
doctors that we’ve seen. It can’t be diagnosed for sure
unless the birth mother would admit to it… but doctors
and psychologists and psychiatrists and everybody has
said that it’s highly suspected to be FASD… they won’t
diagnose her in Toronto until they get proof of maternal
drinking… It’s just frustrating because the [doctors],
they said, there’s not much more we can do from here…”
(Marianne, adoptive mother)
Multiple Labels
◦ Reluctance to give a diagnosis of FASD
Sleep issues
◦ “She has a hard time falling asleep… she would be up
wandering around at 2 or 3 in the morning and she was a
danger to herself… She would get into some things at
nighttime, so we had to put a system on her door, so we
knew that she was up” (Donna, adoptive mother)
Childhood issues
◦ “24/7 you have to be aware. You never really can settle...
You can never take anything for granted” (Sarah, adoptive
grandmother; birth mother)
Adolescence issues
◦ “I guess more or less in their teens, that life on a
rollercoaster began with them” (Kaylee, adoptive mother to 2
children with FASD)
Someone to listen
◦ FASD coordinator or support group
◦ “I’m on FAS Link... It’s been a wonderful support. I
learn stuff there every day. I belong with them. That
is so important. That is why I started the parent
support group” (Gabrielle, adoptive mother and FASD
Reluctant to leave child
◦ Need someone they can trust who understands the
unique needs of children with FASD
Continue interviews
◦ Birth Mothers
Rethink diagnostic process
◦ Focus on labels
◦ Confirmation of maternal drinking
◦ Access to quicker diagnosis
Consortium National de Formation en
Santé (CNFS)
Health Canada
Laurentian University Research Fund
Extent to which respondent approaches the
questionnaire with a strong bias to present
the most favourable impression to minimize
problems or stress in the parent-child
• Scores below the 10th percentile are considered
• Most parents scored higher than the 10th percentile,
suggesting that they did not use defensive
• One parent scored below the 10th percentile.
e.g., “I often have the feeling that I cannot handle things well”
“The diagnostic process for FAE is a nightmare. I’ve
actually given up on getting a formal diagnosis” (Karen,
foster mother)