Mothers Reflect On The ‘Human Experience Of Raising Kids With Disabilities’

BOSTON — It is estimated that at least 12 percent of all children in the United States have disabilities or “special needs.”

For their parents, that often means a lifetime of working to get the appropriate care to meet those needs.

A new book tells that story from the parents’ perspective: “My Baby Rides the Short Bus: The Unabashedly Human Experience of Raising Kids with Disabilities.” It is a collection of essays about having a child with special needs.

Some of the writers were in Boston this weekend to read from the book. Listen to mothers Ziva Mann, Sharis Ingram and Stephanie Sleeper read excerpts from their essays. Select passages are below.

Stephanie Sleeper (Deborah Becker/ WBUR)

There are other kids in the pages of this book whose lives will probably be more difficult than (my son’s). Thinking about these kids is supposed to make me feel blessed or lucky. It doesn’t. It makes me feel rotten for thinking that life with him is so difficult, and it makes me feel angry that I’m supposed to believe special needs is a “gift”…

–Stephanie Sleeper

Sharis Ingram (Deborah Becker/ WBUR)

There is no aspect of our lives that this doesn’t affect… There are a million and one other things that we just do without even thinking about, because that’s how life is for us now. I told them, “I didn’t sign up for any of this when I got pregnant. I was just having a baby.”

–Sharis Ingram

Ziva Mann (Deborah Becker/ WBUR)

“What’s normal?” We clotting moms ask each other. Is there a real, standardized concept that we can point to, and measure ourselves against? And if we can find this “normal” on a map, can we drive over and throw a brick through its window? I simply cannot understand how this “normal” is a useful concept for anything other than exaggerating how difficult difference can be.

–Ziva Mann

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  • Kathleen Yazbak

    This story brought me to tears, as a fellow member of this club. Thank you for sharing such an important story; can’t wait to read this book.

  • Kim Irmiter

    I know what you mean, it is tough to find the sunny side when your child alienates others around her. . .I struggle with my own self-care as I provide what I can for my child – my husband has started a morning ritual – He stands up at the breakfast table and proclaims with his arms outstretched “Today is going to be a great day” – at first I just groaned and smiled slightly, but I see the importance of this and am now joining him in this proclamation. We need to do this if not for our partnership, then for our children who can so easily inhale our pain and make it their own. . .

  • Marla Richmond

    I like what all of the writers have to say. It’s not easy, but it is us. Question: Who published the book and who is listed as the editor? I would like to get it.

  • http://www.HOPE-Connection.com Mike Ryan

    I would also like to get this book and have it on-site for our library at HOPE-Connection.com, a hyperbaric oxygen facility in North Reading, MA. We see so many mothers (AND FATHERS!) that sacrifice so much for their children; sacrifice is an unknown term to the 88% of parents that don’t experience what these parents do.

  • TAL

    Thank you to the brave parents who wrote this book, and those who let their voices be heard, on behalf of those of us who live this life every day.

    We love our children as much as any other parents, but we have burdens and disappointments they can’t begin to understand. Its enough to have to deal with both the acute life issues we face every day and the chronic pain of loss that is never far from our hearts, without having to be subjected to the relentless saccrine optimism of those who don’t walk in our shoes. As far as I’m concerned, “God doesn’t give you more than you can handle,” really means “thank God it was you and not me.”

    This is the straw we drew. We don’t need your pity and we don’t need your platitudes, just your understanding and your accommodations.
    Thank you for allowing these people to speak their truth unfiltered.

  • Cora

    My husband and I were brought to tears, also. Our 18 mo. old has quadriplegic cerebral palsy. We were busy in the morning bustle of changing his intestinal feed bag, helping him clear his secretions, etc., when we heard this piece come on. We both stopped in our tracks. Literally. We sank to our carpet and our family of three held each other and wept as we heard a bit of our daily experience expressed over the air. Thank you WBUR for covering this story, and thanks to the moms who wrote and read about their lives.

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