Down syndrome Awareness Month · Inclusion · Interview · The Human Connection

We All Connect: Down Syndrome Awareness Month

The month of October is known for a variety of reasons. It’s Halloween, Breast Cancer Awareness Month, and the month we see autumn colors blaze through the trees. Unbeknownst to many, it is also Down syndrome Awareness Month.  National Down Syndrome Congress uses the slogan “More Alike Than Different” to best explain that, no matter what makes us unique, we are all connected. As a speech pathologist, I’ve been fortunate enough to work with people with Down syndrome, and I’ve never met more warm and inviting individuals in my life. Those memories forever make my heart smile. Through a series of events, I met Natalie, a fellow speech-language pathologist, who’s been a long-time supporter of this blog in every sense of the word. We’ve become close friends and she told me her brother has Down syndrome. I couldn’t think of anyone better to learn from than Natalie, and she generously allowed me to ask her a few questions.

 

StageSLP: October is Down’s syndrome Awareness Month. What is the first thing you want others who are unfamiliar with Down’s to know?

Natalie: I would want them to know that people with Down syndrome are more like those of us without it than they’re different. The people with Down syndrome I have come to know, whether personally or through the internet, have interests, desires, dislikes, irritations, etc. like the rest of us. If you want to know more about the person, ask him or her or his/her parents. More often than not, people are willing to share information.

S: Does it affect all people the same way?

N: No. Like anyone else, no two people with Down syndrome are the same. Also, no two families of people with Down syndrome are the same. If you look up characteristics, you’ll find a wide variety – low muscle tone, upward slant to the eyes, deep crease in the palm, increased risk for heart defects or leukemia, etc. Not all persons with Down syndrome will have these characteristics. Some will have many. There are also three different types of Down syndrome – Trisomy 21 (the most common), translocation, and mosaicism. Each type will affect the genetic make-up of the person.

S: How would you explain this to a typically developing child?

N: For children, I would keep the explanation simple. I would focus on how everyone is different. I would keep the explanation specific to what the child desires to know. I might say something like, “He has something called Down syndrome, which is why he doesn’t talk as clearly as you and I do (or walks the same or acts in a certain way, etc). But he also likes WWE wrestling like you do. Isn’t that cool? I wonder if he has the same favorite wrestler as you.” I would explain the difference at the child’s level and try to bring it back to commonality – because I think you can always find some way to connect with others.

S: I am a big proponent of All Means All and inclusion, can you tell me about your experiences with your brother being included with typical peers as a kid?

N: We went to school in the 80s and 90s, so inclusion – at least where I lived – wasn’t as big of a thing as it is now. However, my brother, Greg, was as included as he could be. He was in a life skills classroom for his academics. That was the norm then. Being younger, I can’t remember how he was included with our school, and we went to different schools during my junior high and high school years. Because I was a child too, I just didn’t pay attention to those things. But I do know he was involved with all-school plays and productions in elementary school. Outside of school, he went where we went; church, playgrounds, any family outing. So, while it may not have been inclusion specific, he wasn’t excluded and was ALWAYS included in our family events.

One specific memory I have – Greg and I went to different high schools (how our district was set up at the time). However, because he went to school through the age of 21, we graduated the same year. Our family had the option of having Greg graduate in a private ceremony with his class, with his specific high school, or with my high school. My parents asked me and I didn’t hesitate. Why do two graduations? I remember no one flinching at Greg being at our ceremony. In fact, most people I went through school with knew Greg (or of him) and I don’t remember anyone being anything but kind to him.

S: I find that if we’re not familiar with something, we don’t know how to approach it. Has your brother taught you anything through his own personality or your own experiences as his sister that you’d want to share with others, especially children, so they can be inclusive.

N: Greg is the most accepting person I know. He is also the best at adapting to situations. If he doesn’t know something, he figures out a way to get an explanation. If something doesn’t feel right, it’s not right and he probably won’t do it. And, if he enjoys something, he ENJOYS it. I have very few experiences of people being uncomfortable with Greg specifically. I witnessed that with other kids – classmates of mine picking on the “different” kids. I never understood this – picking on someone just because he’s different than you. I can’t help but feel that growing up with Greg had something to do with shaping that part of my personality. Greg’s lessons have been subtle.

S: You also happen to be a speech pathologist, did this encourage you towards working with special populations in your own career?

N: In some way, I’m sure it did. I wouldn’t have known about this profession had it not been for Greg.  I have memories of my father practicing articulation with Greg. So, I’m sure that stayed in my subconscious as I decided on a major. I also feel that growing up with Greg has helped me feel comfortable with the “harder” populations we may work with as speech-language pathologists. Those kids who have some complex diagnoses – autism, developmental delay, cognitive delay, etc. Some of my favorite students have been kids who were non-verbal and intellectually disabled. I love getting past the diagnosis and finding the person.

S: How else can we spread awareness or get information on Down’s Syndrome? Is there a resource you’d suggest we look into?

N: The first place I would suggest going to is the National Down Syndrome Society (www.ndss.org). Through that organization, you can find many resources pertaining to Down syndrome. Buddy Walks http://www.ndss.org/Buddy-Walk/) happen all over the country and are a great way to participate in an event to support awareness for Down syndrome. If you are a reader, there are two books filled with essays about parenting, living with, and/or knowing someone with Down syndrome. They are titled Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives and Gifts 2: How People With Down Syndrome Enrich the World, both by Kathryn Lynard Soper. Most importantly, don’t be afraid to reach out. Ask questions. Do a search for an organization in your town or volunteer for Special Olympics (http://www.specialolympics.org/). Small steps to get involved and get to know the people beyond the diagnosis can make a huge difference.

S: Every week, I challenge my students and readers to get outside of their comfort zone. What would you challenge them to do?

N: I encourage you to reach out to someone you don’t really know. Someone who may seem a little different from you. Maybe ask that person to sit by you at lunch or play a game at recess. Or even just offer to help someone who may need it. It’s hard to put ourselves out there when we don’t feel comfortable with a situation. But sometimes, a little bit can go a long way.

 

I have learned so much from talking with Natalie, and while we’re very similar, we have our differences as well. She and I are in unique situations in which we get to see beyond the diagnosis, as she put it, and truly get to know people. I am looking forward to completing her challenge, and watching my students do the same. As I’ve said before, All Means All, and this is a big theme within my building. All of my students have the job of supporting one another and including each other at all times, no exceptions. The more we learn about our differences, the better we can come together as one human race.

Keep playing with words and see what your message creates!
–Stef the StageSLP

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