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What a Fellow Special Needs Mom Said About Kids Like My Daughter

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Encountering negativity is inevitable, but I feel the chances go up significantly when you have a family member with special needs. I instinctively knew this after my daughter was diagnosed with Aicardi syndrome and we began our new path in the world of disability. I knew we’d encounter uninformed, misinformed and thoughtless strangers along the way. I also knew I could handle the stares, ridiculous comments and discomfort of friends, family and strangers. After all, I think as humans we are generally uncomfortable with unfamiliar situations. We don’t always know how to react in the best, most positive, way. But what I didn’t expect was negativity from other parents of special needs children.

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Age 3

It happened at a parent group in an early intervention center. We met while our children participated in a group therapy session for toddlers. Our children were all nearing the age of 3, meaning it would soon be the school district’s responsibility to provide education and related services for them. The discussion among the mothers centered on preschool programs and was facilitated by a social worker. I typically didn’t say much at those meetings, but I liked the information.

Then, one of the mothers said she didn’t want her child in a classroom with children who sat in wheelchairs drooling. As I sat there hurt and stunned, the social worker giggled and told her she understood how she felt. The mother went on, explaining her reasoning, as I gathered up my bag and left the room to sit in the hall. It was the last parent meeting I attended there. Until my daughter aged out of group therapy, I read a book in the hallway during her sessions.

Looking back, I wish I had talked with that mother. I could have told her children like she described, children like my daughter, could benefit from being in a classroom with her children. I wish I had told the social worker that instead of giggling, perhaps she could have pointed out how beneficial the woman’s child could be to others. With children of different rates of development in the same classroom, they could learn compassion from each other. 

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Age 22

Having someone in a similar situation confront you with negativity is not something you’d expect, but it does happen. Over the past 22 years, I’ve felt it in person, I’ve seen it online and at events with parents of adults with special needs. I try to keep in mind that we are all human, and love our children no matter what their age and ability. We’re never going to like everyone we meet. We can, however, treat each other with kindness and civility, accepting we are all in a different stage of our journey. 

Avoiding negativity is hard, but not perpetuating it is possible.

The Mighty is asking the following: Describe a moment you were met with extreme negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

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Originally published: June 18, 2015
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