Support Professionals and Students in the
Field of Developmental Disabilities

Journal on Developmental Disabilities

The Journal on Developmental Disabilities is a peer-reviewed journal with a growing regional and international readership.

Volume 28, Number 2 – Changing Social Welfare Provisions and Shifting Family Dynamics


Help-Seeking in Mothers and Fathers who Co-Parent their Child with Neurodisabilities: The Journey of Ladders and Snakes
Gina Glidden and Sylvie Tétreault

Help-seeking to assist with the care of their child is common for parents who co-parent their child with neurodisabilities (ND), yet little is known about how such a journey unfolds. This article presents the Journey of Ladders and Snakes, a theoretical representation of the help-seeking experience of mothers and fathers, living together or apart, who co-parent their child with ND. Mothers and fathers from 6 co-parenting dyads each participated in individual, semi-structured interviews about their process of help-seeking for their child and for themselves within informal (e.g., family, friends) and formal (e.g., health and social service organizations) networks of support. Designed, conducted, and analyzed according to Constructive Grounded Theory principles, the study’s results describe: (i) a highly emotive help-seeking journey that stems from a place of grief, encompassing complementary parent roles that were experienced as both exhaustingly demanding and connecting; (ii) ladders and snakes that aided and/or challenged help-seeking; (iii) gendered differences in their experience of the help-seeking process; (iv) gaps in the availability of meaningful supports. This study takes into account the voices of both mothers and fathers, highlighting the importance of understanding the experiences of both parents, individually and as co-seekers, in order to provide optimum support.

COVID-19 Pandemic Challenges for Families of Children and Youth impacted by Fetal Alcohol Spectrum Disorder
Maude Champagne, Rachel Willis and James Reynolds

Research has consistently shown that parents of children with fetal alcohol spectrum disorder (FASD) experience greater levels of stress, severely impacting their quality of life. Since the beginning of the COVID-19 pandemic, there has been a growing concern about increased challenges experienced by these families. A mixed-methods approach was used to address our research questions. An anonymous online survey (n = 17) along with semi-structured interviews (n = 10) conducted over the time period of October and November 2020 were used to explore the needs and challenges of families of children and youth with FASD during the pandemic. Interview transcripts were coded and analyzed using interpretative phenomenological analysis. The most striking finding for caregivers was an increased occurrence of their children’s challenging behaviours, including aggression. Previous mental health issues of children were reported as being exacerbated due to the disruption in services, loss of routines and structures. Several parents reported being diagnosed with post-traumatic stress disorder as a result of caring for their children. Placement instability, mental health issues in the child, siblings and parents were all amplified. This study underscores the need for increased mental health support for individuals with FASD and their families, including safe and accessible respite options and interventions to respond to dangerous behaviours and aggression both during the pandemic and post-pandemic.

Intragenerational Trauma: Family Stories of Institutionalization and Policies of Care
Madeline Burghardt

Despite the official closing of many institutions for people labelled/with intellectual disabilities in Canada, the emotional and relational effects of institutionalization continue to reverberate in the families of institutional survivors. Although often an unheard group, siblings of survivors offer insights on institutions’ long-lasting effects on individuals and families, and on the ways in which their stories can contribute to more just and sound policy decisions moving forward. In this paper, five siblings share their experiences of the intragenerational trauma they have experienced as a result of their brother’s or sister’s institutionalization and offer critical perspectives on addressing this chapter in Canadian history as one step towards creating policy that will address the needs and concerns of people labelled/with intellectual disabilities, their families, and communities.

"They Say 'We Don't Have Resources! We Don't Have EAs [educational assistants]! We Can't Handle Your Kids!'": Mothers' Perspectives on Their Autistic Children's School Experiences
Nicole J. Luymes, Brianne K. Redquest, Lauren Rollo and Paula C. Fletcher

In 2018, one in 66 children in Canada received a diagnosis of autism spectrum disorder. Among the various psychosocial needs related to this diagnosis, a prevalent need is related to adapted services available within schools. For full participation in school, autistic children may need additional supports and individualized education plans; however, these may not always be available. We conducted semi-structured interviews with 11 mothers who are raising autistic children in Ontario. We drew on interpretive phenomenological analysis to explore their narratives of their experiences of navigating educational systems for their children. Two main themes emerged from this analysis: (1) experiences related to systemic issues, and (2) experiences related to the effects of systemic issues on children and mothers. From the second theme, the following sub-themes emerged: (a) the unrealistic expectations placed on autistic children at school, (b) the lack of resources to support autistic children, and (c) the actions and attitudes of school staff toward autistic students. Mothers’ narratives revealed the often-negative effects of the lack of specialized approaches, knowledge and understanding within the school system. To ensure they receive quality education adapted to their needs, autistic children and their mothers need support as they navigate the school system. Recommendations are offered for better adapted support for families.

"I Lost all the Services Offered to my Child Overnight": Families’ Experience of the Interruption of Early Intervention Services for Autism During the Covid-19 Pandemic in Quebec
Mélina Rivard, Céline Chatenoud, Charlotte Magnan, Manuelle Beuchat, Catherine Mello, Heather M. Aldersey and Chun-Yu Chiu

Families of young children diagnosed with autism around the spring of 2020 were especially vulnerable as Covid-19 pandemic-related restrictions interrupted the delivery of their specialized early intervention services. This paper examined 34 families' perceptions of the impact of this situation in Quebec on their child and their family using a mixed-methods design. Parents reported largely detrimental effects on their access to, and relationships with, service providers and their child's transition to school. They noted negative changes in several domains of child development. The need to combine childcare responsibilities with telework was also a source of stress. This situation resulted in family adjustment challenges and in the exacerbation of pre-existing vulnerabilities. However, parents also remarked on their family's ability to adapt and mobilize resources.


Dispatch from the Field

Citizen Artist: Examining a Community-Based Studio Art Program
Christina Yarmol

Background: Many adults with cognitive and/or developmental disabilities (henceforth CDDs) have never been given the opportunity to fully engage in regular artmaking visual arts activities outside their residential environments due to educational, social and financial barriers. The aim of this multi-methods study was to understand how to operationalize the studio environment to support the art experiences of adults with CDDs in an urban studio environment as well as to find ways to commend and credit their knowledge. Methods: Sixteen artist-participants over 21 years of age who enrolled in art classes at Creative Village Studio participated in narrative interviews, shared their artmaking processes and artworks as well as co-wrote artists’ statements about their portfolios over an eight-month period. The study included interviews with three parents, three instructors, three studio volunteers, one lead studio facilitator and one gallery owner who exhibited the artist-participants’ artwork. The researcher created artwork alongside the participants and in the studio. Conclusion: A safe, welcoming studio environment with predictable routines, and supportive staff with sociable personalities who respect artists’ goals and offers facilitation of artmaking without undue influence or intervention, leads to uninhibited artmaking. Frequency and duration of studio time builds artists’ skills, vision, personal style, and self-confidence, resulting in the belief that art is a vocation. Artmaking can act as a piece of a socio-political-cultural jigsaw puzzle that can be assembled to enhance the lives of adults with CDDs. Through art creation the humanity and communication capacities of people with CDDs can be rendered more visible to parents and health and social services professionals. Creative Village Studio’s presence in the urban community and regular art exhibits help to break down barriers about what it means to have a disability.