Staring - How to see special needs children

Recently, I wrote the article below for our local newspaper, and thought it would spark some interesting conversation on Hopeful Parents. Ok, I'm totally reusing this because I was on a hiatus from caregiving but that's next month's story. Enjoy! :)

 

For many people, encountering a child with a disability can cause a bit of uneasiness.

 

Should I stare? Should I not stare? Should I keep my child from staring? Should I pull my child away? Should I ask questions or not ask questions.? Is it any of my business?

 

Medically fragile children are a part of mainstream society more than ever before.

 

As the father of two children with cerebral palsy, I’m a very active person along with my family. We go on walks at parks or at the mall and to many other family destinations.

 

Sadly, people in public do not know how to interact with my children. I feel they are missing out on an opportunity to not only learn about my kids but also to possibly learn something about themselves.

 

Everyone stares.

 

While at the mall, I once witnessed a person staring at my child. Perhaps it was her wheelchair, her trach tube protruding from her neck or her slightly crooked smile from her cleft lip, I‘m uncertain as to why.

 

As we locked gazes, I could see the recognition of my child’s disability, then the awkward moment of what to do next, as we silently passed one another.

 

Staring is a normal response when we see anyone who is a deviant from the norm. I understand staring is part of the deal when you try to give your child every opportunity to be fully included in society

 

Even I stare. My stare is out of amazement for the family supporting that child because I know all too well what it‘s like.

 

Although what I’m trying to communicate is that I do not have fear or guilt associated with my stare; I try not to offer a smile rooted in sympathy either.

 

Instead, I focus on the child and try to see them as a person first. Then I wonder about their age, their name and what they do for fun or if they are like my children.

 

Sometimes my curiosity leads me to ask questions or simply give a nod of acknowledgement to the child and/or family.

 

Advice on staring

 

My stare is still wrong, especially when I do not follow it with direct communication to the child and family.

 

If I could give any piece of advice it wouldn’t be ‘don’t stare,’ but rather follow-up your stare with a question, an opportunity to learn.

 

But, be sensitive because there are some families who just want to blend in so you may not always get the answer you expect (at least you tried to help the family feel less isolated).

 

If you are too fearful of asking yourself then learn from children. Children are our best examples.

 

Many do not have preconceived notions and are naturally lead by their curiosity.

 

I’ve been filled with happiness countless times when children ask us what’s wrong with our daughters. I’m just like many other parents I know. I’d never miss a chance to talk about my kids.

 

It creates an opportunity to understand how much all kids are alike. Whether it’s pointing out her black Converse All-Stars or noticing the sparkling pink hearts on her t-short, kids almost always get it right.

 

Staring is ok, but it’s especially ok when followed by asking a few simple questions. Ask their names. Ask their favorite color or movie. Just ask.

 

Questions weren’t always easy 

 

Being on the receiving end of questions from strangers wasn’t always as easy as it is now.

 

In the early stages, the realization of being a parent of a special needs child created feelings of isolation. Not only were all of my dreams for my children short-changed, but I didn’t want to interact with people staring at me and my family.

 

Eventually though, answering questions and explaining my daughter’s condition gave me comfort.

Staring, on the other hand, became a normal part of our lives so I learned to embrace it.

 

For example, my wife and I chose to give our oldest with cerebral palsy daughter a hot pink cast after her first surgery (eventually topping that with a rainbow-stripped cast). It served as a conversation starter that helped to avoid any awkwardness and as an opportunity to educate curious observers.

 

Looking back, there may have been people who were more likely to talk to us because maybe they thought her wheelchair was only temporary until she recovered from her surgery. Maybe they would not have asked us what was wrong with her had she not had the pink or rainbow casts.

Now, that same daughter also has a trach (breathing tube), and we’re looking for ways to add ‘flare’ to the ties that hold it in place. She is just like any eight-year-old girl who loves pink, purple, and glitz and glam.

 

What I saw is that we were helping people move beyond staring and their feelings of embarrassment because we were drawing their attention on purpose. It helped them see our children as they are, first as human beings.

 

While I’m not sure if there is truly one right or wrong way to interact with families of special needs children or disabilities, I like “the stare and ask rule.” It provides the potential to change peoples’ perceptions one stare and one question at a time.

 

My hope is that world will start seeing my children not by their differences but as I do, by their potential and similarities to other children.

 

Tim Gort, writes about his life with two special needs daughters at http://thegortfamily.blogspot.com.