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:
- Denial. “He’ll outgrow it. Everything will be fine.”
- Anger. “If the teachers/doctors/insurance company/society would just do what I tell them to, everything would be fine.”
- 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.”
- Depression. “No matter what I do, nothing will ever be fine. Ever.”
- 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?
I like the concept of expansion. But it’s not just for you. You’ve reached the phase where you’re using everything you experience (struggles and celebrations alike) in service, to help others learn, expand and heal. You are one powerful woman. I’m honored and grateful to get to observe and benefit along the way.
Thanks–I hadn’t thought of it that way.
Cristin, inspiring! I’d say there are 2 additional stages: exhaustion and expansion. We meet many who get past exhaustion and into expansion. A very powerful place – expansion powers advocacy
Ah, yes, exhaustion. That’s a missing one too! It’s that beat, that pause, between acceptance and advocacy. Mustering up one’s courage and taking a deep breath before forging back out on the path. I like it.
I like this, and agree there is something past acceptance. Empowerment? Exhilaration? Strength? Or a word that describes “this is my normal and I love it”. Something that I say to people who say to me “I do don’t know how you do it” . Also would add that sometimes you slide back, maybe not all the way to 1, but if you’ve been to acceptance and the step beyond, you get back faster because you are more resilient. Resilience, maybe that’s the finals stage?
Susan Zimmerman writes in her book Writing to Heal the Soul that with her special needs child she moved from grief to acceptance to gratitude. That really opened a door for me as a mom of a special needs child. I thought “Wow. I’m allowed to feel gratitude?” And I absolutely do. I’ve just discovered your blog via the Huffington Post. It looks wonderful. I’m looking forward to reading more. Thank you.
How about “Embracing”?
I guess I’d always thought of acceptance as the place where you really truly feel empowered by your understanding. Of those close to me who have died, the ones who accept their deaths gain a sense of peace and a strong desire to help others.
I call the stage “in the moment parenting”. It’s that la-la
land where it just is what it is and you experience every emotion,
including joy, because you are just parenting a child you love. For
me though, #4 sneaks back and forth in my life. Every time we reach
a milestone age, grief sneaks back up on me and whacks me across
the back of the head with its baseball bat. My angel will be 16
this year. An age where we should be experiencing the joy and agony
of blossoming independence and the joy of a driver’s license.
Instead, it’s feeding tubes, IEP’s, etc. struggling a bit right
now, but will be better again after her annual ARD is
over.
As a mom of a special needs little boy, I love this
article!! Extremely well put. I do agree that maybe there is a 6th
stage. I would say maybe it would be called Embrace it. Not only do
we accept our kids, but we also need to get to a place where we can
embrace them exactly how they are. That way, we can help them get
to the best place they can be and we can all experience life to the
fullest.
The place past acceptance is real and it’s called new life – it’s a different life, not necessarily a better life, but a stronger one – the way to get there is through action and meaning making.
All the best to you and your work.
Marilyn Lands
Licensed