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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.
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
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
