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On Her Own

“Excuse me, I just want to say your daughter is beautiful,” the man says with a smile. “You are clearly doing a wonderful job raising her. You are doing God’s work.”

I don’t see pity in his face. What I see is an appreciation for who Amanda is.

We are in the Orlando airport. My husband Brian and I are employing the “one parent in front so the kids can follow, one parent behind to catch the stragglers” strategy. My 10-year-old son, Jason, is keeping pace with Brian. My 15-year-old daughter, Amanda, is next. I am bringing up the rear.

This gives me the opportunity to observe people’s expressions as we go by. Some are not aware of our procession. Some glance and look away. Some look, smile and watch. Some stare. I noticed the man in a suit, carrying a briefcase and hat, clearly watching Amanda. It looked like he wanted to say something to me. But what he said surprised me nonetheless. 

I feel his comment is misdirected. It is not Brian and I that are doing the “work,” it is Amanda. Amanda has Down syndrome as well as type 1 diabetes. She used to have a tracheostomy to help her breathe. All of these challenges are obvious and at times require a certain amount of attention.

Because of this, eyes follow her wherever she goes; she represents her “people” whenever she steps out of our house. Ideas of ability are being reinforced or changed by what is perceived in her presence.

Think of what pressure that is, if you are aware of it. Think of how daunting it would be if every time you went out in public you knew people took note. In a way, it is what celebrities must feel. That must be why some duck and dodge the spotlight, why they wear sunglasses and hats to hide.

Amanda does none of these things. She is confidently unaware.

I look at her in the airport. Her carry-on bag is thrown over her shoulder, and she is wheeling her suitcase behind her. She is not walking with her parents; she is carrying her own stuff. To me she looks almost like every other teenager, dressed in jeggings, a Hollister shirt and Ugg boots.

She is showing anyone who takes time to notice that she can take care of herself. She is able, strong and stylish.

As her parents we feel it is our job to not only expose her to the world, but to expose the world to her. It’s a mutual education process. But it is Amanda who does the teaching; it is Amanda who creates change.

If I pay attention, it seems that every interaction is an opportunity to educate. How can someone so small and young make such a difference?

Will the security guard remember next time to ask the person with special needs her name instead of looking to the adult with her for the answer? Possibly, as Amanda surprised him and answered for herself.

Will the employee at McDonald’s try a little harder to understand the next person with speech issues when she places an order? Maybe, because Amanda repeated herself until he finally understood.

Seeing my daughter wheel her suitcase onto the shuttle to take a seat, will other parents challenge their child to be more independent?

I don’t know, but if they do, it is not because of Brian and me, it is because of Amanda.

Sometimes even I do not take the time to learn or understand. Sometimes I grow frustrated with what we call her “Amanda-isms.” I get embarrassed. I become impatient. If even I, her mother, struggle, I must realize some people might need time to learn. And some people may never get it.

It can be easier to stay home. It can be more comfortable to go only where others with special needs will be present. It can be quicker to do the task for our children. Place the order, answer the question, carry the suitcase.

That is not what Amanda wants. She wants to go on trips, go to plays, go to malls. She wants to do things for herself.

Besides, these are not our jobs to do. I know my presence in that airport didn’t teach anybody anything. No one smiled as I walked by. No one reassessed their view on ability because I was pulling my suitcase. No one even noticed my cute outfit.

Our children are able to make an impact if they are seen. While it may be easier to stay where it is safe and sheltered, it is not what is best. The kind man in the suit proved this with his comment.

I am always on the lookout for families that have children with special needs. It is a kind of club, sort of like seeing a family out of state with Syracuse University shirts. We wave, we smile, we acknowledge. Do these parents know the power their kids possess? I hope they do.

Our children may seem to have special needs. What they have is a special gift: a lesson to teach. If their smiles engage, if their efforts impress, if their determination amazes, they have done a unique job. Work only they can do, and thus they deserve the credit. 

Deborah Cavanagh lives in Manlius with her husband and two children. She has written for local organizations supporting children and adults with special needs and publishes the blog www.momofmanyneeds.com.

Photo above: © Chuyu | Dreamstime.com

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