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.

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About Cristin L.

Earthling, pilgrim, peace warrior and special needs parent
This entry was posted in IEP, special needs, special needs parenting and tagged , , , , . Bookmark the permalink.

6 Responses to What’s in a number?

  1. melelllan says:

    Katelin being 18 now, a lot of my “touchpoints” are over. But I definitely feel that grief was a big part of them and you can’t be prepared for all of them. The biggest one for me was when she went into high school. As I was doing all the paperwork, it hit me-she won’t go to the senior prom and she won’t get a real diploma, she won’t get a job, she won’t get married….. all the “normal” things that happen in high school, or that high school prepares you for.

    The one thing that IS still slams me is the MCAS.Everytime I get the report it says everything she failed to do compared to the “average student” and it is a constant reminder she’ll never be average or “normal”, will always be below her chronicological age in every single area, and I hate it, hate it, hate that stupid test.

    I’m certain that when her older sister gets married, that it will be one of those points as well.

    • We haven’t reached the standardized testing (MCAS) stage yet, but I’m sure that will throwm me as well. I have heard from others that it’s a tough one. It’s also good to know that things shift as they get older. I hope that as my acceptance and gratitude deepens, things will feel less tricky.

  2. Interesting. I don’t think I ever felt grief; although, Evelyn’s special needs are certainly significant. I felt fear–before knowing that her disability was not of a progressive nature. It was a gripping fear that rattled me every single day. But once I felt certain that she is stable in terms of health, I felt relief.
    I find that it helps that my daughter is happy, and finds happiness in simple things. I’ve taught myself to be grateful that happiness comes so easily to her.
    While I don’t have grief, per se, I definitely have worries about her future. But since she is only 5, I am able to concentrate on the here and now usually.

    • That’s wonderful that you don’t feel grief. I think in our case of having years without a diagnosis or even a clear picture of what the symptoms were, I just wasn’t really able to settle into acceptance. But I hear from folks who are pretty settled into things and still feel pangs from time to time. But it’s interesting how it’s different for everyone. Good reminder though, to feel gratitude, which I do feel also. The feelings all come and go! Thanks.

  3. Lauri says:

    I have grown to like the “grief touch points” phrase.
    When I first read the term…my heart pulled back and hid.

    The word “grief” was too strong.
    It should be applied to the death of a loved one.
    Not those “pangs” I would get from time to-time.
    Some dull and sad and some, the searing-take-your-breath-away kind.
    I read this post a while ago and sat uncomfortably with the term “grief touch points”

    I didn’t want to see these “pangs” as grief.
    But I grew slowly comfortable with the term over the past few months.
    Maybe Maria Trozzi, M.Ed., had something after all.

    Not wanting to see these pangs as “grief touch points” was more about my making the word “grief” mean something deep, cutting, constant and a thing that can take you down. (I mean in-my-bed-heart-in-pieces-shattered-soul, kind of down.)

    In Greek mythology, Achilles was known as the hero of grief. He was invulnerable in all of his body except for his heel. As he died because of a small wound on his heel, the term “Achilles’ heel” has come to mean a person’s principal weakness.

    Grief is a principal weakness for me, my achilles’ heel.
    It (grief) took me down when my parents died in a car accident. How could all these pangs that I felt about my daughter also be a form of grief?

    Like many things, after a period of sitting with it… I am now comfortable saying yes.. I have had and do have those “grief touch points”. They don’t take me down, but they touch me deep in soul. Sometimes dull and sad and sometimes searing.

    When she was a baby it was her diaper bag that gave me a “grief touch point”. She needed an IV for almost a year so we had to have hypodermic needles in her diaper bag to flush her IV if needed. Hypodermic needles and soft burping cloths didn’t belong together. Her diaper bag was a “grief touch point” for me.

    When she was older, it would be when children would stare at her when she shrilled some barley intelligible words clapping in glee about something. Those innocent stares.. totally a “grief touch point”.

    Last week it was when I had my husband drive around a parking lot with her, blaring her favorite Christmas music so I could go into JJill alone to buy her comfortable pants that fit nicely over her diaper. In the store with all those shoppers darting in and out the fitting rooms I had one of those “grief touch points”. Even though she is now 18, I knew she couldn’t manage this small cramped store with all their delicate trinkets. Vases, jewelry trees every two feet, scarves hanging everywhere, and two customer computers inviting you to sit down and order what the store didn’t have in stock.
    Yea… NO WAY! And… “grief touch point”

    But it passed when I got back in the car with the goods and smiled at her in the back seat. She looked up and said ‘’hot wings?” (While Jingle Bell Rock blasted in the background.) Absolutely I chimed! So off we went with the JJill bag of goodies tossed carelessly to the floor, to find her the real purchase of the day… Hot wings. With blue cheese of course.

  4. Pingback: Stages of grief and special needs parenting: Is acceptance all there is? | Durga's Toolbox

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