Dr Suretha Swart`s presentation

INTERTWINING TO FIT IN: A GROUNDED
THEORY STUDY OF CAREGIVERS WITH
SCHOOL-AGED CHILDREN WITH FASD
APRIL 30, 2015
Dr. Suretha Swart
Professional Practice Leader, PRTC
Assessment Clinics, UBC
Learning Objectives
• Understand parents’ strategies to help their school-aged
children with FASD succeed in the school system
• Identify conditions that influence the ways parents of
school-aged children with FASD manage their children’s
schooling
• Appreciate the effects of managing their children’s
schooling on parents’ self-image
• Implications
Background to Research Question
• Primary and secondary disabilities significantly
affect children’s day-to-day functioning in school
(Burd, Cotsonas-Hassler, Martsolf, & Kerbeshian, 2003; Streissguth et al., 1997; Timler,
Olswang, & Coggins, 2005)
• Secondary disabilities are difficult to prevent
(e.g., Chudley et al., 2005; Ryan & Ferguson, 2006a)
• Limitations to studies (e.g., Clark, Hughes, & Jaswal, 2010; Duquette &
Stodel, 2005; Duquette et al., 2006, 2007; Ryan & Ferguson, 2006a, 2006b)
• Missing information: Caregivers’ perspectives
about managing schooling for school-aged children
with FASD
Research Design and Questions
• Qualitative design
• Grounded theory (Glaser, 1978, 1992, 1998)
• Research Questions
─ How do caregivers of school-aged children with FASD manage
their children’s schooling?
• How do caregivers act as they try to manage their children’s
schooling?
• What contextual factors affect caregivers’ efforts to manage?
• How do contextual factors affect primary caregivers’ efforts to
manage ?
Sample
• 17 caregivers, purposively and theoretically sampled
─ 6 biological mothers, 1 biological father, 1 step-mother (who was a
biological mother of another child), 2 grandmothers, 5 adoptive
mothers, and 2 foster mothers
─ 11/17 participants graduated from secondary school
─ 11 participants were single
─ 1 participant was employed full-time; 6 were employed part-time;
7 were not employed outside the home; 3 participants were parttime students
─ 5 participants indicated that they were receiving “welfare,”
“income assistance,” or “disability payments;” 4 participants
accessed the food bank
Orchestrating Schooling
Tactics:
•Being on stand-by
•Pitbulling
•Cultivating connections
•Anticipating difficulties
•Re-engaging
• Advocating and Educating
• Changing Settings
Conditions Influence Tactics
E.g., Key Workers
…she knows and then she explains it to me later, or right there. And yeah, so I do find that it’s
better to have somebody there with me…
E.g., Knowledge of FASD
Things that people take for granted, uniformity of language, was really important. Do you call
that “dress up area” or is that “play area”? Do you call that “the toilet” or do you call that “the
bathroom”? Things like that could throw him off.
E.g., Open Door Policies
I almost made sure I made friends with the teachers…They had an understanding of what [my]
child had been through and what limitations they had so that they could kind of work with it, so
they wouldn’t criticize…over criticize or have expectations that were ridiculously high…
Tactics Influence Self-Image
But then I think that’s when the principal finally went, “okay, wait a second. She’s not just a
mom with a spoiled kid that misbehaves.” So now I’m not the big bad birth mom that’s causing
the problem, I’m the big bad birth mom that’s trying…
Conditions and Tactics Contribute to Critical
Junctures
• Hitting Rock Bottom
So as the years went by, the difference between my daughter and
the in- group just got stronger and stronger and more set. … she
had an opportunity to go and play and jump on the trampoline of
one of the children of the in- group, who lives just next door. And I
noticed that she wasn’t allowed on the trampoline. And then when
the movie started… they would not let her sit with them (crying):
And that’s after three years of putting it [the goal of social
integration] on the IEP, to make any kind of integration meaningful.
And so it was a watershed moment (17.1, lines 331-362).
• Islands of Calm
So I just mean success in terms of that she was able to stay in school,
to have some successful days where there wasn’t high levels of
frustration or anxiety that lead to, you know, behaviours in the end.
And that she actually liked going to school. To me, that’s the better
measuring stick than anything, is the fact that she would get up in
the morning and be happy and want to go to school (16.1, lines 381390).
Keeping Up Appearances
Recognition as “good” parent
• intertwined with academic and social success and happiness for
children
•
a sense of self-actualization or accomplishment beyond the
parental identity
Tactics:
• Sharing Information
• Reframing
• Redefining Self
Conditions
Because the principal that was there [said], “the kids got dirty clothes.” But listen …there
was only one washer, two dryers for eighteen apartments. Now when you get family allowance
you’ve got to be there early in the morning, because if you’re not you can’t wash your clothes.
Now me, two kids, it gets piled up there and … okay, like Monday they sprayed my place there
[for lice], three weeks in a row. I got still twelve loads of laundry to do. But the laundry room is
always busy. Do it at the Laundromat, do you know how much it costs at the Laundromat?
$1.50 to wash, $1.50 to dry (14.1, lines 620-629).
Implications
• Primary and secondary disabilities undermine goals for children and longterm outcomes for caregivers:
• Complementary nature of success
• Emphasize importance of prevention (e.g., Astley & Clarren, 1999; Gurwitch, Mulvihill, &
Chaffin, 2003; Malbin, 2002) and complementary nature of success
• Paid employment and children’s success as mutually exclusive; adds new
information about living in poverty and children with FASD (Astley at al. 2000);
double jeopardy of parents of children with FASD living in poverty
• Mutual support that was identified in a community characterized as
impoverished, contributes to understanding of the kinds of supports
beneficial to participants
• Education
• LEIC Planning Tool (POFASD, 2011)
• Knowledge of FASD
• Key workers
• What constitutes helpful relationships
• Support groups
Thank you
• Parents
• Key workers
• Supervisors
• Family, friends and colleagues
• Financial support
─ Pacific Century Graduate Scholarship
─ Dr. Chi-Kit Wat Scholarship
References
Astley, S. J., & Clarren, S. K. (1999). Diagnostic guide for fetal alcohol syndrome and related conditions: The 4 -digit diagnostic code (2nd
ed.). Seattle, WA: University of Washington Publication Services.
Astley, S. J., Bailey, D., Talbot, C., & Clarren, S. K. (2000). Fetal alcohol syndrome (FAS) primary prevention through FAS diagnosis:
Identification of high-risk birth mothers through the diagnosis of their children. Alcohol and Alcoholism, 35, 499-508.
Burd, L., Martsolf, J. T., Klug, M. G., & Kerbeshian, J. (2003). Diagnosis of FAS: A comparison of the Fetal Alcohol Syndrome Diagnostic
Checklist and the Institute of Medicine criteria for fetal alcohol syndrome. Neurotoxicology and Teratology, 25, 719-724.
Chudley, A. E., Conry, J., Cook, J. L., Loock, C., Rosales, T., & LeBlanc, N. (2005). Fetal alcohol spectrum disorder: Canadian guidelines
for diagnosis. Canadian Medical Association Journal, 172(Suppl. 5), 1- 21.
Clark, E., Hughes, K. & Jaswal, O. (2010, November). So you have the assessment, now what about the teacher? Paper presented at the
meeting of the British Columbia Association of School Psychologists, Vancouver, BC.
Duquette, C., & Stodel, E. J. (2005). School experiences of students with fetal alcohol spectrum disorder. Exceptionality Education
Canada, 15(2), 51-75.
Duquette, C., Stodel, E., Fullarton, S., & Hagglund, K. (2006). Persistence in high school: Experiences of adolescents and young adults
with fetal alcohol spectrum disorder. Journal of Intellectual & Developmental Disability, 31, 219-231.
Duquette, C., Stodel, E., Fullarton, S., & Hagglund, K. (2007). Secondary school experiences of individuals with foetal alcohol spectrum
disorder: Perspectives of parents and their children. International Journal of Inclusive Education, 11, 571-591.
References
Glaser, B. G. (1978). Theoretical sensitivity. Mill Valley, California: Sociology Press.
Glaser, B. G. (1992). Basics of grounded theory analyses. Mill Valley, CA: Sociology Press.
Glaser, B. G. (1998). Doing grounded theory: Issues and discussions. Mill Valley, CA: Sociology Press.
Gurwitch, R. H., Mulvihill, J. J., & Chaffin, M. (2003, November). Prevention of secondary disabilities in young children with Fetal Alcohol
Syndrome/ARND. In L. Floyd (Moderator), Infant & child health: Fetal alcohol syndrome surveillance. Symposium conducted at the
meeting of the American Public Health Association, San Francisco, CA. Retrieved October 11, 2011, from
http://apha.confex.com/apha/131am/techprogram/paper_60858.htm.
Malbin, D. (2002). Fetal alcohol spectrum disorders: Trying differently rather than harder (2nd ed.). Portland, OR: Fetal Alcohol
Syndrome Consultation, Education and Training Services.
Provincial Outreach Program for Fetal Alcohol Spectrum Disorder. (2011). Learner Environment Instruction Curriculum (LEIC Planning
Tool Guide). Prince George, BC: Author.
Ryan, S. & Ferguson, D. L. (2006a). On, yet under, the radar: Students with fetal alcohol syndrome disorder. Exceptional Children, 72,
363-379.
Ryan, S. & Ferguson, D. L. (2006b). The person behind the face of fetal alcohol spectrum disorder: Student experiences and fa mily and
professionals’ perspectives on FASD. Rural Special Education Quarterly, 25(1), 32-40.
Streissguth, A. P. (1997). Fetal alcohol syndrome: A guide for families and communities. Toronto, ON: Paul. H. Brookes.
Timler, G. R., Olswang, L. B., & Coggins, T. (2005). Do I know what I need to do? A social communication intervention for children with
complex clinical profiles. Language, Speech, and Hearing Services in Schools, 36, 73-84.