Stages of grief and special needs parenting: Is acceptance all there is?

The stages of grief—the emotional progression following a loss made famous by Elizabeth Kubler-Ross—has often been applied to experience of special needs parenting. To those of you who aren’t raising kids with special needs this might seem really weird or just plain morose, ungrateful or unkind. I mean, nobody actually died, right? But although none of us gets to live out the fantasy life we dreamt up before the kids arrived, sometimes the gap between the life you expected and the life you’re living is so wide that you do feel a sense of grief. Maybe grief for the imaginary child you naively conjured up. Maybe grief for the confident, easy-going parent you thought you’d be.  Maybe grief for an easy-breezy life that you imagined would be yours. Maybe all of the above.

In some ways, the metaphor has been my salvation, providing a roadmap for an otherwise emotionally disorienting parenting experience. In her article “The Natural Emotional Cycle for Parents of Children with Learning Disabilities,” Dr. Jodie Thorz Dawson’s swiftly summarizes Kubler-Ross’s well-known model and draws parallels to parenting a child with special needs. Parallels to my own parenting experience spring to mind with little effort. I won’t re-hash them here because they’ve been so often explored, but just as a refresher, the stages of grief (and my own shorthand memories) are:

  1. Denial. “He’ll outgrow it. Everything will be fine.”
  2. Anger. “If the teachers/doctors/insurance company/society would just do what I tell them to, everything would be fine.”
  3. Acceptance concept.Bargaining. “If I quit my job/sell my business/dedicate my life to getting that out-of-district placement/cure/experimental therapy, everything will be fine.”
  4. Depression. “No matter what I do, nothing will ever be fine. Ever.”
  5. Acceptance. “It is what it is. Sometimes it’s actually fine.”

The stages of grief have been a helpful framework for me. It was always comforting to feel that I was going through a universal experience, and if I applied myself, I’d come out a healed, accepting person. Certain moments and milestones do feel particularly heavy with grief, something I wrote about in a post a while back.

Lately though, the stages of grief model feels like it ends one stage too soon. Maybe I’m misunderstanding what’s meant by “acceptance,” but the word itself feels too neutral, too flat, too stoic, too stiff-upper-lip to describe the joy and richness I’m experiencing with my son, my life and myself. Because of him and the experience of parenting him, I’m feeling things, meeting people, walking through open doors that would never have been available for me without him. That’s not accepting—that’s growth. Expansion. Celebration even.

I’m not sure what I’d call this next stage. Any ideas? Has the stages of grief framework been helpful for you, and do you think it needs some more stages?

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