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Through partnership with the MERMAIDS (Memory and Eyetracking Research, Maybe Also Interlanguaging and Disability Studies) Lab directed by Zara W DeLuca, we are establishing more holistic and equitable practices in communication and language therapies by exploring disability theory and family relationships in the context of disability.
Social Model of Disability
Social Model of Disability
Centering the experiences of disabled people and their families, including siblings and parents, as expertise rather than anecdote empowers us to identify societal barriers to participation for the disabled community and its members.
How are families affected by disability?
How are families affected by disability?
Family members and friends often play a role in providing the care that allows disabled people to be independent, and experience these societal barriers alongside disabled people. Caregiving and the experience of disability by proximity to their loved one comes with unique joys and challenges. The effects can often be described within three parameters:
Cohesion
Cohesion
Families where one or more children have disabilities often have a more flexible definition of love. Families of disability share a desire for more inclusion and togetherness, strengthening within-family bonds and bonds to community or religious groups.
Coping
Coping
When disability is present in a family, there are often increased sources of stress and more feelings of isolation and anxiety, which can affect the family's sleep patterns and living space. Use of coping strategies and opportunities for leisure activities can help.
Caregiving
Caregiving
When one family member is disabled, everyone steps up to help with support needs that may change frequently. While the team effort is empowering, it can restrict the time families have for leisure or recreation and influence their view for the future.
Parents of Children with Disabilities
Parents of Children with Disabilities
Parents of children who have special needs often face additional challenges beyond the typical challenges of parenting. These challenges can include thinking about placements for children's school or home lives, seeking professionals to support their child, attending multiple doctor's appointments and meetings regarding disability supports, and ensuring financial needs are met. These additional challenges are highly specific to their child's needs, and many parents report a feeling of isolation from other parents. Access to resources on the legal and educational supports available to their children, like the ones found at the Connecticut Parent Advocacy Center (CPAC), and support groups, such as those offered by our friends at the Connecticut Family Support Network (CTFSN), positively impact the lives of adults parenting a disabled child.
We are currently running a photovoice study to better understand how a child with special needs affects parents and their family's communication and leisure (SCSU IRB# 1032). If you'd like to be involved, please contact Zara W DeLuca at delucaz2@southernct.edu.
Siblings of Children with Disabilities
Siblings of Children with Disabilities
Siblings, or "sibs," of children with special needs describe mostly positive experiences growing up with their disabled sibling. These positive experiences and early caretaking roles often inspire and prepare sibs to enter helping professions like speech-language therapy and special education, creating a community of care where those who have already experienced that part of life can mentor and support others currently in the same experience. The sib experience is also not without challenges, including pressure to overachieve and compensate for their sibling's needs, heightened sensitivity to conflict or stress, and difficulty building relationships with parents. Through workshops like the Southern Connecticut Sibshop and inclusive recreation and leisure activities that serve to bring all family members together to support the sib and their sibling, more positive relationships can emerge and enable a lifetime of loving care for the child with a disability.
We are currently running a photovoice study to better understand how a child with special needs affects siblings and their family's communication and leisure (SCSU IRB# 1024). If you'd like to be involved, please contact Zara W DeLuca at delucaz2@southernct.edu.
The LACH-MERMAID Lab supports families of disability through research, hosting monthly meetings of the Southern Connecticut Sibshop, and supporting partner organizations with inclusive programs.
Join the Southern Connecticut Sibshop and/or peruse our partner organizations below.
Want to learn more? Follow Zara and the Southern CT Sibshop on Instagram @heysibsister
References
References
Hastings, R. P., & Taunt, H. M. (2002). Positive perceptions in families of children with developmental disabilities. American Journal on Mental Retardation, 107(2), 116-127.
Heller, T., & Arnold, C. K. (2010). Siblings of adults with developmental disabilities: Psychosocial outcomes, relationships, and future planning. Journal of policy and practice in intellectual disabilities, 7(1), 16-25.
Naylor, A., & Prescott, P. (2004). Invisible children? The need for support groups for siblings of disabled children. British Journal of Special Education, 31(4), 199-206.
Nixon, C. L., & Cummings, E. M. (1999). Sibling disability and children's reactivity to conflicts involving family members. Journal of Family Psychology, 13(2), 274.
Pavlopoulou, G., & Dimitriou, D. (2019). ‘I don't live with autism; I live with my sister’. Sisters’ accounts on growing up with their preverbal autistic siblings. Research in Developmental Disabilities, 88, 1-15.
Powell-Smith, K. A., & Vaughn, B. J. (2006). Families of children with disabilities. Children’s needs III: Development, Prevention, and Intervention, 689-703.
Reichman, N. E., Corman, H., & Noonan, K. (2008). Impact of child disability on the family. Maternal and Child Health Journal, 12, 679-683.
Seltzer, M. M., Greenberg, J. S., Orsmond, G. I., & Lounds, J. (2005). Life course studies of siblings of individuals with developmental disabilities. Mental Retardation, 43(5), 354-359.
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