Research evidence is emerging that “parent-to-parent support, described as parents with lived experiences providing support to each other, is recognized as a distinctive and important type of support system” for families whose children have hearing issues.
In 2007, this was one catalyst for Irish Deaf Kids (Sound Advice’s predecessor) to start up. Parents were disempowered in terms of lacking all the communication or education options, not being connected by deaf agencies and effectively navigating the state systems alone – while still grieving their child’s diagnosis and routinely, the manner in which it was given.
Parent Support Is Everything
A “pressing need for parental support” recurs in anecdotes by parents of children with hearing difficulties and parental perspectives from multiple sources, confirming that:
Relevant and timely support and intervention are important for families of children identified with hearing loss because [most] of these children will be born to [hearing] parents who were not expecting the diagnosis.
Source: American Journal of Audiology (AJA), December 2014.
The challenge of empowering parents of these children isn’t confined to Ireland. In 2014, a parent client-navigator model by Dr Matthew Bush in Kentucky (US) was highlighted. In Dr Bush’s approach, parents of children with hearing issues co-design healthcare systems for pediatric hearing as lay people experienced in early diagnostic testing and intervention.
Changemakers And Activists
While this approach reflects a global rebalancing of shared doctor-patient responsibility in managing health issues, the reality is that parents of children with hearing difficulties are changemakers. In their world, information is power and the quality of their lives is shaped by the facts they receive (or do not get), regardless of the source or timing of those facts.
Families who had negative experiences will not want other families to travel a similar road. And today’s constant connectivity gives families social networking options like never before.
Ways in which families are peer-supporting one another:
- Forming online communities to fact-check, share daily concerns, tips and insights.
- Educating stakeholders on their childrens’ redefined needs in a digital-hearing age.
- Collaborating to reshape state policies and services for hearing and education.
- Disrupting legacy service-providers into modernising their practices and outreach.
- Networking online to find best practices and precedents for hearing and education.
- Identifying processes for transitions and/or college applications that have worked.
- Buddying each other through different life stages (this support is a lifelong process).
Parents proven as change agents (not legacy deaf support agencies) may be the experts that professionals, researchers, policymakers and stakeholders need to seek out. Biased views have no place in this redefined ecosystem, with the US state of Florida legislating for the auditory-verbal option only in 2013. Another vital question to ask is, who mentors and guides these parents as change agents? Their input might be just what your project needs.