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Posts Tagged ‘Individualized Education Program’

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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Several years ago at a conference I listened to a woman tell about the extraordinary home she lived in India when she was younger. One side of the house, she said, butted up against a slum area; people lived amid squalor and poverty, picking through trash in order to survive. Exiting a door on the other side of the house, she could enter into a beautiful secluded garden, where peacocks strutted among exotic flowers. Describing one’s life, much like describing the outside of this house, she continued, was largely a result of perspective:

I could tell you a story of my life that would make you very sad, and it would be true. I could tell you a story about my life that would seem very joyous, and that would also be true.”

Last week I was challenged to write the story of my own experience as the mother of a child with special needs. Applying for a family leadership fellowship on neurological disabilities, I was asked to sum up my experience raising a child with special needs in a page or so. In writing it, I recalled the woman’s story of India and realized that my story too depended largely on perspective. I could tell several different stories – each one true – depending on my vantage point.

I was startled by how easily I could evoke sadness and pity or triumph and exuberance depending on the experiences I chose to include. Even the same experience could be seen as positive or negative depending on the details. For example, there’s the very real fact that my son didn’t learn to walk until he was nearly four, along with all the accompanying challenges and inconveniences of that. But there’s also the fact that my son learned to walk at all, which wasn’t always a given, thanks to the help of a brilliant physical therapist. Which set of circumstances holds more weight for me?

Which brings me to the bigger question: what version of my story do I tell myself? I’m not talking about our public stories, like the one I was writing, or the ones we tell when we introduce ourselves or the 140 characters of a tweet or Facebook status update. We all know how true yet misleading and selective those glimpses can be at times. One well placed exclamation point or emoticon can change everything. No, I’m talking about the story I tell myself when there is no audience – my honest interpretation that creates meaning and context for my experiences. The version of events I tell myself with no make-up on at 2 am in the silence and the dark. And if I can do that, is there any value to it?

According to some, there is good reason to explore this. Therapist Michael White developed an entire branch of family counseling called narrative therapy; this form of therapy assumes that narratives or stories shape a person’s identity and then uses these stories to create a healthier or more creative outcome for his patients.

The usefulness of narrative isn’t new to most special needs parents. Most of us parents are welcomed in to the special needs world with the well known Welcome to Holland story. I know that for me, that gave and continues to give some meaning and context to my experience.  For many of us, our very person story would echo some of the progression of that story.

For many people, the monomyth of Joseph Campbell’s Hero’s Journey also provides a meaningful narrative that describes a life of challenge, growth and redemption. His work is so rich that I can’t begin to describe it in this post, but I promise to get back to it soon, if only for my own benefit. For Campbell, Homer’s Odyssey was perhaps the archetype and I find strength and meaning in its arc of denying then accepting the calling, receiving divine aide, facing the trials, achieving the boon and returning back to help others.

I encourage all of you to give writing your own story a try. In one page or less, how would you summarize your plot? If it were a movie, would it be a comedy, a drama, a quirky indie flick or a horror movie? Do you have any lesson, truth or theme and how can you capture the complexity and contradictions of your experiences? Beware of trying to write how it ends. Just tell the story of what has happened up to this point; remember, we’re not whitewashing anything or trying to manifest anything through wishful thinking – just create order out of the chaos of what has already happened.

In the mean time, I continue to write and re-write my story. I know it can change on a dime, but for the moment it’s my story, and I’m sticking to it.

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