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Archive for the ‘disability’ Category

Other people’s dreams can be so tedious, I know, but it can’t be helped.

I’m at a support group with other parents of special needs kids; I can’t see the other participants (am invisible to them, too) because the room is all obstructed views. I ask if we can re-arrange the seats, but am told that I don’t need to be there, this meeting isn’t about me, I seem to be doing fine and this is a support group for people with urgent issues, but why do I ask, they wonder, do I need to talk? I burst out crying, “I ALWAYS need to talk,” and I’m whisked away to another part of the room before I infect the others with my hysteria.

I am led to a table surrounded by a Greek chorus of special needs parents who in real life know my heart the best, and I plead “When will I need to stop talking about this?”, embarrassed, ashamed that I’m not cool about all this, that my struggle means that I don’t love my son, that I’m not a good mother. “I mean, he’s healthy, he’s not in pain, he’s not sick, he’s loving, he’s great. So why do I still feel like I need to talk about this?” They absorb my words impassively. Without pause my words continue to flood out, “Sometimes I think about what it would be like if I could take all of his challenges away,” and they shake their heads vigorously, moaning, “No, no, we must never do that, it can’t be done,” but I can’t help it, the words are already out, Pandora’s box has been opened, and the only way to describe what that would be like is to show them, and I raise my face upward and gasp for breath, arms floating as if I am breaking the surface after being underwater much too long, and they all raise their faces too, and they all inhale deeply with me.

“But that’s not the right metaphor,” I said, “because that would mean that now, I am drowning.”

And I wake up gasping for breath.

———–

Last weekend I went on a retreat called “Living Beautifully with Complexity and Change.” Our theme, we were told, would be this prophesy, taken from Perseverance by one of our teachers, Margaret Wheatley.

From the Elders of the Hopi Nation
Oraibi, Arizona  June 8, 2000
 
To my fellow swimmers:
 
Here is a river flowing now very fast.
It is so great and swift that there are those
who will be afraid, who will try
to hold on to the shore.
They are being torn apart and
will suffer greatly.
 
Know that the river has its destination.
The elders say we must let go of the shore.
Push off into the middle of the river,
and keep our heads above water.
 
And I say see who is there with you
and celebrate.
At this time in history,
we are to take nothing personally,
least of all ourselves,
for the moment we do,
our spiritual growth and journey come to a halt.
 
The time of the lone wolf is over.
Gather yourselves.
Banish the word struggle from your attitude
and vocabulary.
 
All that we do now must be done
in a sacred manner and in celebration.
For we are the ones we have been waiting for.
 
————

In my dream, I was right. Drowning wasn’t exactly the right metaphor. I wasn’t drowning, but being torn apart from clinging to the shore. And the clinging, I see now, doesn’t come from me wanting him to be anyone other than exactly who he is, but from wanting the rest of the world to be a place where he — where all of us — is safe, welcome, valued. I know that to help the world become this place, I must let go, surrender to the river and its destination, and sometimes I can. There are no guarantees that the middle of the river is any safer, any less treacherous, but it feels like the right thing to do. Every moment becomes the chance to do it again, to re-commit to letting go and being in the middle, where all the important work gets done.

Here I float, in the middle of the river, in sacredness and celebration, banishing the word struggle from my attitude and vocabulary. Will you join me here? When I forget, will you remind me to let go?

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As a parent of a child with special needs, I often shy away from memoirs and auto-biographies of self-advocates and family members.  I know I should want to be more informed, but after a day of IEP meetings, behavior plan implementation and toilet training, I tell myself that I simply can’t find the energy, let alone the time, to immerse myself in someone else’s experience. If I’m completely honest with myself, I must admit that as someone who hasn’t gotten her own story straight on what it means to be a parent of a child with special needs, I can feel guilty or inadequate when reading how some other parent has gleaned insights and found acceptance where I still struggle.

So it was with some trepidation that I learned I would be required to read just such a book for a developmental disability class I’m taking. We were allowed to pick the book, so I chose My Baby Rides the Short Bus: The unabashedly human experience of raising kids with disabilities for our assignment; I remembered hearing from several other parents that it was good, but had never gotten around to reading it for the reasons mentioned above. As an anthology of essays, it might be easier to dip in and out of it between loads of laundry and calls to doctors and state agencies.

My trepidation disappeared in the first page. Assembling thirty-eight stories from “non-conformist” parents “on the fringe of the fringe,” the anthology’s editors expressly collected voices representing a diversity of class, gender, race and struggle; I knew this wouldn’t be the usual special needs parenting book. The authors “range from a Burmese mother overcoming her own physical disability as she works through her son’s challenges, to a lesbian minister who becomes a foster parent and advocate of a developmentally delayed teenager not much younger than she is, and a ‘quirky’ single mama who quit school at the age of sixteen, yet successfully took on her son’s school system to find an accessible placement that accommodated his cerebral palsy.”

Quickly I found my first question: Is there such a thing as a universal experience of parenting a special needs child? More questions quickly followed: Is there such a thing as non-conformist special needs parenting? Aren’t we all a little (or a lot) on the outside already? I got curious to see what themes would repeat within the essays and which voices would stand out as different.

The essays are brash, funny, outraged and outrageous, heartbreaking, disturbing—sometimes all at once. Reading Kathy Bricetti’s “A Bus(wo)man’s Holiday” about her experience working as a school psychologist while parenting a child with Asperger’s Syndrome, I was reminded how many of the school professionals and other experts we so eagerly mistrust are themselves parents of children with special needs doing their best in an imperfect system. Sharis Ingram told what could easily be my story in “What I Said, and What I Didn’t Say.” She recounts the evening she was invited to speak to social work grad students and all the many things she felt so compelled to share about her experience that she ran far over her allotted time; I often feel that same sensation as I participate as one of two parent voices in this developmental disability class. Some essays offer simply a glimpse into a sliver of someone else’s world, like Jennifer Byde Myers recanting of the challenge of writing an honest-but-not-scary ad for a childcare sitter in “No Use in Crying.”

As soon as I began to assemble a unifying theme to the book, I would read one more essay and it would prove the exception to my rule. It became clear pretty quickly that the authors, while united in the label of being parents of children with special needs, were not sharing the same experience. For example, many authors write about their struggle to connect with their child, and how their family provides the child with a sense of belonging. Then along comes Andrea Winninghoff’s “Interpreting the Signs,” the story of how she, a young, poor, single, hearing mother, after years of trying to keep her son close, releases him to his Deaf culture and lets him attend a residential school. “As he becomes older and more complex person, I am afraid that the nuances of his culture will escape me. The fear that breaks my heart is that because I found the strength to love him enough to let him go find himself in the freedom of his own world, he may never come back home to mine.”

Many of the authors write about feeling judged by other parents of typically developing children. Some feel judged by the healthcare and education systems or by their friends or family, but most often by strangers in public. I begin to assume that because of our experience of being constantly judged, we should be a fairly tolerant bunch. Not so! Amber Taylor, in “’Because He’s Retarded, Ass!’” writes about her experience of tension and backlash in support groups when the other parents learn that she became a mother through adoption, as though her “choice” to adopt a child with special needs negates her experiences and challenges. Again, no universal theme appears, at least for me.

This sense of feeling judged that permeates the book is often expressed as being offended by the word choices of others. Several authors write about how much they dislike when people use a particular platitude, like “I don’t know how you do it,” and yet many express that they think the very same thing when thinking of a parent with a child whose needs are greater than theirs. In “Jackpot!” Amy Saxon Bosworth writes about how people tell special needs parents “what a present they’ve received, what a strong person they must be to have been given such a magnificent gift, like you won some disabled kid lotto.” But then in Christy Everett’s essay, “A View through the Woods,” we are reminded that we could have been those strangers staring at us and our kids and saying the wrong things if things had been different. “To the Woman Who Stares and Looks Away,” she writes, “I’m no different from you, not really. I wasn’t born to do this, not chosen because of my wealth of compassion, patience, or grace. I looked away once, just like you.”

I think the strength of the anthology is this complexity, this lack of unifying theme or concrete answers. The editors do organize the book into loose chapters that parallel the rather inevitable journey from diagnosis, to navigating the system, finding validation, and community support and transition. But what the collection captures is not just a diversity of parents or experience, but a depth of emotion, and by providing a space for the writers to be raw and honest—sometimes so much so that we want to turn away—they are letting all of us feel less ashamed of the breadth and depth of our own feelings.

“This is what love looks like,” Andrea S. Givens ends the last essay. No single entry could have painted a complete picture, but together they do create something that is rich, complex and worth looking at.

My Baby Rides the Short Bus: The unabashedly human experience of raising kids with disabilities. Edited by Yantra Bertelli, Jennifer Silverman, and Sarah Talbot

If any of the authors happen by some chance to find their way to this blog entry and have links to more of their work–please plug away in the comments below. And thank you for writing!

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