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When a Girl with Down Syndrome Needed Help, My Daughter’s Response Took My Breath Away

It took having a second child for me to understand that disability did not mean inability. I am guilty, like many others, of seeing the chair before the person in it. I would look at those with a disability and not see the person first.

After my second daughter was born, my definition of disability was reborn. This wasn’t a child to be pitied or thought to be unable. This child could accomplish anything she set her mind to, whether it was walking or climbing up the wrong side of the stairs. She would defy doctors and our own expectations too often for us to begin putting limits on her ability. I wanted everyone to see Bridget, not the things that set her apart from her peers.

However, having a child with a disability wasn’t how I learned to “see” the person first. It was having a child without a disability.

When Bridget was in the NICU, Abby saw first-hand how this long awaited baby sister would change our lives. Abby has spent countless hours in waiting rooms doing her homework while her sister is doing her therapy. She has always known her sister had “special needs” but characterized it as just another quirk, like Bridget’s red hair. One would think this inequity would lead to either jealousy or disdain. But the opposite is true.

The long hours she has spent caring for her sister has created an empathetic soul. One who slows down to her sister’s pace not because she has to, but because she wanted to walk with her sister. Abby will unthinkingly adapt a playground activity so a friend who cannot run as fast as the others will be able to participate with her classmates at recess.

Early on, Abby created her own narrative about her sister. She would tell classmates (and teachers) that Bridget had a “funny” pattern in her brain or that it just took Bridget longer to do things. When asked about including her sister in events, Abby’s first response is: “Of course, she is my sister!” Abby redefined special needs to be anything that makes life harder for her sister and others. It was through watching Abby nurture her sister that I began to see a pattern forming.

Abby treats all children as if they are able. Abby may question why a person is using a cane or a child may act in a disruptive manner, which is only natural. She will inquire in a way so as not to embarrass herself or the person who has prompted the question. What is not natural is her unwavering ability to see the person first, disability second.

Recently Abby was at a 4H visual presentation. A child with Down syndrome got up to present and encountered difficulty managing her posters. The 4H presentation must be conducted solo, without parental assistance. The judges showed kindness and asked the child if they required assistance. Eyes full of nerves, the child said yes, please. The judges had barely finished giving permission when Abby was out of her seat asking the girl what she needed.

She did not tell the girl how she was going to help; she asked the girl how she could be of help. Abby asked the girl where she wanted her to stand. She asked the girl what sequence the girl wanted to posters in. And after the presentation was finished, she asked the girl if she was okay with how Abby helped her instead of letting the girl’s friends assist her. (Thankfully, the answer was yes.)

But I learned something much more important. Too often I see someone with a disability and move quickly to assist. I now follow the steps Abby displayed naturally:

1. Ask if they need/want help.

2. Ask how we can help.

On the drive home, I told Abby how proud I was that she stepped up to help. She replied, “Of course, Mom” (with an exaggerated sigh). Then she asked if the girl had special needs, like Bridget. When I replied yes, Abby said she thought so, but she wasn’t sure until she sat back down. She took my breath away when she added, “She just looked as nervous as I felt.”

When Abby looked at the girl on stage she didn’t see a girl with Down syndrome. She saw a girl on stage that was nervous and thought she might have special needs. It wouldn’t have mattered if the girl did or did not, Abby would have reacted the same way.

The way we all should: see the person first and offer assistance.

This post originally appeared on Undiagnosed But Okay.

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