It’s confusing to experience grief when your child is present, living, and receiving your love. However, grief is a common and often overlooked emotion for many parents who are told their child has a diagnosis.
Grief is often seen as a response to personal tragedy. But let’s be clear – having a child with disabilities is not a tragedy. Instead, we speak of grief as the feeling of sorrow in addition to feelings of well-being, personal joy, and optimism that are being felt when going through that process.
How can grief show up for parents of children with disabilities?
While typically associated with loss or death, grief is an overlooked emotion parents feel when their child receives a diagnosis. Numerous studies show that parents of children with autism, chronic illnesses (e.g., allergies, diabetes, epilepsy, etc), developmental disabilities, intellectual disabilities, or mental health diagnoses report feeling grief at the moment of diagnosis and continuous waves of grief in addition to their day-to-day parenting joys. This also includes the “8 stages of grief,” which are shock, denial, anger, guilt, depression, shame, acceptance, and empowerment.
As children with diagnoses develop into young adults, parents report recurrent or chronic grief around their child’s condition. This grief often returns at each of their child’s developmental stages.
“Often in the aftermath of a crisis… people swing into action and provide assistance which is largely practical… But sooner or later the emphasis will shift to the subject of feelings and they have to be dealt with too.” – Doris Zagdanski
Parents report feeling grief around the following (and more):
Mourning “what could have been” for both parent and child
Sense of discontinuity and difference from others
Challenges with child’s behavior related to diagnosis
Imagined future worries/scenarios
Identity as parent vs. carer
Financial and service challenges
Lack of social support and understanding
If you find yourself grappling with grief, just know that you are not alone. Grief is an important emotion to feel and to recognize in parenting, especially when your child has a diagnosis. If you would like support around parenting your child with a diagnosis, contact us.
References
Chronic grief: Experiences of working parents of children with chronic illness, George et al. 2007
Grief: The Unrecognized Parental Response to Mental Illness in a Child, MacGregor, 1994
Recurrent grief in mothering a child with an intellectual disability to adulthood: grieving is the healing, Brown, 2013
Grief Experiences in Family Caregivers of Children with Autism Spectrum Disorder (ASD), Bravo-Benitez et al, 2019
Engaging parents of students with disabilities: Moving beyond the grief model, Alfred, 2014
