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The Invitation That Made Me Rethink What 'Special Needs' Means

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When I was in elementary school my Camp Fire Girls group volunteered in the special needs classroom. I remember it taking me a few times to feel comfortable. I just didn’t know what we were supposed to do. Then I figured out you can just hang out with other kids even if they are in a wheelchair or still needed help with basic needs. I even learned some sign language. I remember this time fondly and my compassion for others grew.

Back then, “disability” or “special needs” were big words, but very small words at the same time. Those words meant significant problems. They were the major source of identity for those kids. It was a small, select group of people. That is what disability meant to me. It was different and something to be celebrated and embraced.

Then decades later, my daughter came.

I didn’t identify her as “disabled” or “special needs.” She was just “delayed.” We did therapy starting at age 1. She didn’t walk until she was 3, but she was still just “delayed.” At 3 she also only had a handful of words, but I still struggled to see us as part of the “special needs” community. We worked to find a diagnosis and a group to belong to, but none came. We just kept moving with multiple therapies a week, researching good occupational therapy (OT) toys for each gift-giving holiday, working for every small milestone. We sometimes felt overwhelmed, but I didn’t see us as being part of that community.

I didn’t think she was “disabled enough” to claim to be special needs. And I thought she would grow out of her delays. I thought they wouldn’t want me in their community because my daughter can look “normal” at first glance. Well, I guess she can now that we got rid of the walker. And if you don’t see her braces. And if you don’t notice she can’t talk or still needs help to get into a chair, or if you can ignore my constant swinging, singing, bouncing while we watch her big brother do martial arts…

Maybe she is part of the ‘disabled’ community. Maybe we are a ‘special needs family.’ But will they let us in?

Then her wonderful sunday school teacher approached me cautiously. She said that she volunteered at another church that ran a monthly “kid’s night out” type of event for special needs children and their siblings. She didn’t want to offend me, but thought we may be interested. “Us?” I thought. “Can we go to that?”

I felt nervous and wondered if we would fit in. My husband and I dropped the kids off the first month and we discussed feeling like impostors or taking advantage of this wonderful service that someone else needed more. But this community was lovely and welcoming and our older son made friends. The volunteers were great and loved my children and didn’t flinch when I told them all of my daughter’s differences. We made friends that I could talk to about where to get shoes for braces and possibilities for special schools.

We are now a part of that community.

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Turns out, the words “disability” and “special needs” are indeed big and small words. Just not in the way I once thought. The community is diverse and welcoming and big. And they are small words, as they are only part of an identity. My daughter is an adorable, nonverbal, loving and stubbornly amazing little sister. And we are a family that goes to church, out to eat, to swim lessons and to martial arts. And a family that loves to go to the movies and on walks and so much more.

And we are a “special needs family.”

I am thankful that “special needs” is a big and small part of our life. I am glad my definition of these things changed. These words can change your life. They changed mine for the better — twice.

The Mighty is asking the following: Can you describe the moment someone changed the way you think about a disability or disease? 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.

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Originally published: April 14, 2015
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