Special Needs Families: Celebrate National Let’s Go Out Day

In honor of Developmental Disabilities Awareness Month, there is one key thing you can do: Take your family to the park. Or for fro-yo. Or to the zoo. Or to any public place! The Arc has planned its first Let’s Go Out! day for Saturday, March 29, to raise awareness about kids and adults with disabilities. As they say, “This one-day movement will serve to harness our collective power to gain allies, foster understanding, dispel myths and encourage people without disabilities to recognize that we’re not so different after all.”

The Arc is the leading and largest organization for people with intellectual and developmental disabilities (I/DD) in the U.S. Working through a national network of 700 chapters, The Arc advocates for and serves more than 1.4 million people with I/DD and their families with more than 100 different diagnoses and across their lifetimes. I got a chance to ask Laurie Edson, The Arc’s Director of Chapter Excellence, some questions.

How did The Arc come up with Let’s Go Out Day?

Each year, The Arc celebrates Developmental Disabilities Awareness Month. This year, the theme—“Let’s Go Out”—is a simple yet very powerful idea that one of our young professional staff members who has a sister with a developmental disability came up with.  The idea reflects the desires of most families—to just be out and about and experience life in their community! However, some families feel restricted because they have anxiety about what other people who don’t have any experience with people with I/DD will think.

What sort of misconceptions do people have about kids with developmental disabilities? 

In my opinion, the most common misconception is that kids (or adults) with DD are going to struggle throughout their lives, that they can’t necessarily enjoy the same things as kids without disabilities. Or, can’t understand what’s going on around them. People are uncomfortable with the unknown.  We are genetically wired that way, I think.

Many years ago at the age of 24, I had the life changing opportunity to walk in the shoes of parents who are raising kids with disabilities.  For five years, I lived and worked in a home where five young teenagers with Down syndrome and Fragile X syndrome made an impact on our neighbors and community.  Typical home, typical neighborhood and while we weren’t exactly typical—we sure lived life fully with our neighbors! Because we played outside with the other kids, because we attended neighborhood potluck suppers, and did what any other neighbors would do, those families came to embrace our novelty and yes… we knocked on each other’s doors to borrow a cup of sugar.

Obviously, one day alone won’t change mindsets, so please clarify what The Arc is hoping to accomplish with this day.

We want to plant a seed. We want to make people stop, think, and take notice of their neighbors. By encouraging people— families and individuals— to go out and do the things that make them happy and feel alive. We hope that fostering this active participation in our communities will start a chain reaction and shift attitudes… and change those misconceptions.

What specific challenges have you noticed that families of kids with DD face in terms of going out?  

I suppose it’s that having a child with a developmental disability can take a lot of spontaneity out of life.  It just seems to take more planning and more logistics to do even the simplest things like going to the grocery store or to go to a birthday party.  And while most families slide into a comfortable pattern once kids get to be around school age, it isn’t uncommon for families who have a child with a developmental disability to have to strain their eyes to see the light at the end of the tunnel.

In terms of going out, a specific challenge can be a situation arising, sometimes with no perceptible warning, which to a stranger’s eye might seem overblown and uncomfortable. My own children grew up around people with DD. Here’s an example of how creativity and flexibility saved the day on a routine trip to Target.  My teenage daughter and her friend (with I/DD) went with me to run errands. They went off on their own to try on fleece pajama bottoms and my daughter’s friend promptly decided she simply wasn’t going to take off the pants. After much prodding, my daughter realized she would need to be a little more creative to mitigate the situation. Knowing her friend as well as she did, she knew that she had a trump card—her friend’s undying love of footwear. “Well, we can’t go to the shoe section until you’ve put your own pants back on…” she said. Her friend hopped up, changed her pants, and they went on their merry way. Mission accomplished! It’s about having the patience to get to know someone well enough. It’s the same principle as coping with a disagreement or issue with a co-worker, a roommate, or any other friend or family member. It just gets a little more public attention sometimes.

Sometimes, it’s not even a specific situation, but the stares and sideways glances from uninformed people that can be intimidating. Those are some of the kinds of challenges that may make it difficult to go out and easier to just stay home.

What advice do you have for these families to make going out easier?

Go with a sense of adventure! Expect that it will take a bit more time and you will need to take a few breaks to accommodate for “moods” when everyone needs to regroup. And, most importantly, have fun and then when you know you’ve reached your limit… smile and head back home.

And what advice do you have about dealing with people’s stares? 

Smile back! There is a very real chance that they are curious in a genuine way and your smile might redirect the tension towards an opportunity for understanding. It works. And can I add that on the flip side, when I spot a parent with a child with an obvious developmental disability I make a point to make eye contact and share some friendly little comment like “your daughter’s smile is beautiful.” That small gesture can make a parent feel so good.

What other advice do you have for parents about educating strangers? It can be a real challenge.

When I have been in this situation, I assume that children innately want to understand the world around them. As the parent/adult you can be open and say something as simple as “Hi, this is my son Jeffrey and he uses a wheelchair because his legs are not strong enough for him to walk… but he loves to listen to music and sing.  What kind of music do you like?” Then you’ve started a dialogue… And, if the inquisitive kid’s parent seems horrified and tries to apologize, I think it’s best to continue on with “I understand that people are curious about my son, but I’d like them to know that he is a fun and loveable guy so it’s great to get the opportunity to introduce him.” Again, you’ve opened the door to create understanding.

The same goes for adults. They may not even realize they’re staring! But by being open and taking some time to engage them you may have opened that door. And then maybe they’ll pass that on to their children, their friends… It’s all cycles.

Are you recommending that parents make a point of explaining the day to their kids with I/DD, or should it just be a family outing?

We are putting the emphasis on being a family or being your own individual self if you are an adult going out without your family. Celebrate your family’s unique qualities and just go out and have fun. We think that just the presence of people with different challenges out doing the same things people without disabilities are doing on a particular Saturday will make people stop to think that maybe we’re all not so different from each other after all. Our hope is that without much fan fare and attention, people will just happen to notice and maybe appreciate all the diversity in our communities.

From my other blog:

 

Image of girl on street having fun via Shutterstock 

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