By Carrie Batt, Grief Educator

Parenting is complicated as it has so many twists and turns. There are a variety of parenting styles such as hovering, free and easy, and everything in between. The one thing parents have in common is the fact that parenting never ends, thought it changes. Many parents can look forward to their child changing as they age and gain independence. Parents often look forward to and are proud of their child leaving the nest. Yet for many parents with children who have developmental disabilities, that is not the case. These parents must offer unwavering support, care, and guidance to their child or children who live with disabilities.

These are parents who are relied on in various ways, being the primary caregiver and managing everything. Some parents aging into their 70s, 80s, and 90s remain the sole primary caregiver to their child. Their day-to-day parenting tasks have never ended as their child has grown into adulthood. In fact, for some, their parenting roles increase as their child ages and may begin to lose daily living skills, develop early-stage dementia, show signs of aging or illness, begin to regress in specific areas or require much more support. Some parents must also cope with the fact that their child may be experiencing mental health issues in combination with a developmental disability. This is a most unique parenting experience as it is all-consuming. Such parenting speaks to a level of commitment and unconditional love where unwavering support is a constant.

In conjunction with these realities, there are times when such parents become a part of the end-of-life and palliative care communities. Once their child with a disability is diagnosed with a life-limiting illness, the only choice is to navigate end-of-life care, and there is no road map for what these parents will be embarking on. When it comes to death, dying and disability there is no education or expertise readily available. The same is true for grief, loss, and disability. Currently there are few disability-sensitive supports for such families who are having to transition from being the primary care giver to preparing for the impending death of their child.

The grief surrounding these realities have yet to be spoken of or integrated into the bereavement services and are rarely acknowledged within the developmental sector. The same is true of the reality faced when a child with a disability must face to mortality of their parents and primary caregivers, as for many of these children they may never have left the family home.

This is a type of grief most cannot imagine. This type of grief has not yet been recognized, validated, and honoured. There has been no space made within our grief support services that speaks of the magnitude of the grief surrounding these families. My hope is that the light can shine to meet these needs in the developmental sector for the families we serve.