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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What’s in a number?

My son celebrates a birthday this month. It is a joyful occasion. Like all parents, I spend the days leading up to it planning surprises, buying and wrapping gifts, reflecting on how quickly the years are flying by. We are celebrating it not once (with cupcakes in bed on birthday morning), not twice (with a birthday party at the zoo for friends), but three times, this last and final once while we are here in Sweden visiting my husband’s family. I love that he can hear “Happy Birthday” — the Swedish version, that is — sung by his cousins, aunts, uncles and grandparents.

Because my son has some special needs, however, his birthdays can be a little “sticky” for me. The undeniable, black-and-white chronological number that designates the number of years he has accompanied the Earth on its rotation around the sun is not at all in alignment with any other age-related number that happens to be going on in his life, and this sends me for a series of tailspins:

  • The clothes I buy for his gifts are sized by age. Because of his genetics, his clothing size is that of a child three years younger than he is.
  • Toys are given an chronological target market, but the ones most appropriate or desirable for him are often half his age or even less.
  • When asked his age, my son often gets the number wrong, referring back to an age a couple of years ago. (Maybe it was a really good year?)
  • Even the whole issue of hosting a birthday party raises a host of questions. Who are his friends? Will inviting more children increase the odds that he gets invited to more birthday parties? What activity will be appropriate for his friends with special needs?

Most of the time I can ignore the numbers, but on his birthday it stirs up some sadness.

One thing that makes it easier is to know the sadness is coming and to be prepared for it. The most helpful perspective I got in this regard was from Maria Trozzi, M.Ed., director of the nationally renowned Good Grief Program at Boston Medical Center, who I had the great fortune to hear speak several years ago. Trozzi, who is known for her work in dealing with grief and children (she consulted on both the 9/11 and Columbine tragedies), Trozzi expands her expertise in bereavement to the grief families experience when a child is diagnosed with a disability: what she calls the “grief that keeps on giving.”

While some of you might find the use of the term”grief” in this context over-the-top or insensitive, I personally find Trozzi’s use of the term helpful to describe my experience of needing to let go of a lifetime of expectations. No other word could really get at the magnitude of the loss I was feeling at the time. “Grief” hit the nail on the head for me.

The night I heard her speak, she talked about the importance for parents of children with special needs of identifying what she calls “grief touchpoints” – predictable times in a disabled child’s development when parents’ grief is exacerbated. The example she gave of a that sticks with me most strongly is the story she told of the father who completely lost it each spring when he drove by the season’s first Little League practices starting up near his house. He had spent many years dreaming of sharing his passion for baseball with his child, for whom traditional Little League was simply not an option. Who knows, maybe the father found inclusive or adaptive baseball for his son, but the point of the story was that this particular experience really re-opened some old wounds. As long as he pushed that grief away, the pain was fresh each and every year; but once he began to see what it represented, and know that it was coming, he could absorb it a bit more gently.

My son’s birthday is a grief touchpoint for me. So are most of our IEP meetings and doctors’ appointments, reading evaluations and progress reports and nearly anytime I run into kids who were in our mother/baby group. For some folks, family gatherings or holidays can be grief touchpoints. They can come like a punch to the gut or they can come like a grey cloud that hangs over everything for days. For me, it’s helpful to know what they are, why they come. I’m getting better at recognizing them, feeling them arise, letting the emotion be what it is, breathing into it, and letting it pass. It’s not that I want to wallow in it; I just want to get on with it. There’s too much good stuff to celebrate to waste time being stuck.

I’d love to hear more about what your touchpoints are and whether Trozzi’s labeling of them as such is a useful perspective for you.