If you have a child with special needs, I am sure you are no stranger to the looks, stares, pointing and sometimes off the wall comments you may get when you are out in public. But, how do you respond to the situation? Do you let your emotions take over and just let loose on the person? Do you ignore everything and keep going? Or do you use the opportunity to be an advocate for your child and educate someone on your child’s diagnosis? As a mom of five amazingly wonderful children that just happen to be blessed with Down syndrome, trust me, I get plenty of reactions from the public.
As I see it, there are two kinds of people: those who are being malicious and intentionally hurtful with their actions, and those that truly don’t understand or have never encountered a person with “differences.” These people may say inappropriate things that seem hurtful, but in reality, they just don’t know how to handle themselves. It is important to be able to tell the difference between these two types of people before you respond to the situation. Those who react out of fear or misunderstanding may have just set themselves up for the perfect learning opportunity.
Recently, I was at a birthday party and my daughter (6 years old) wanted to jump on a trampoline. There was a boy (about 10 years old) and his little sister (about 5 years old) already jumping. When they saw my daughter run up, they stopped in their tracks. Looking back on the incident, I can remember watching the boy’s face as he decided what he thought about this little blond haired girl with almond shaped eyes who came running as fast as her feet could carry her to the trampoline and yelled out “Hi guys!” as best as she could. When the look on his face went from confused to disgusted, I knew what was going to happen next. The little boy pointed at her and said, quietly at first, “Oh, she is creepy.” Then, in a more convinced and cruel tone he yelled, “She is CREEPY! CREEPY!” It didn’t take long for his little sister to follow suit. My daughter didn’t understand the words the kids were saying but she knew the kids were not being nice.
In the moment, it was difficult for me to decide what to do. As her mom and protector, I was heartbroken for her. My first thought was to burst into to tears, grab my kids and GO. My next thought was to reprimand those kids and have a stern talk with their mother. But, I decided to try to turn this awful event into a positive experience and hopefully change the minds of these kids. I took a breath and walked over to them, picked up my daughter and put her on the trampoline. Both kids stared at me. As soon as her feet touched the trampoline she started jumping and laughing. She stopped for a second, looked at the kids and said “C’mon guys!” in her deep little raspy voice and continued jumping.
I could see the wheels turning in their heads. They just didn’t know what to make of us. Then the little girl pointed her finger and said, “Eww, you’re creepy, you’re creepy.” Her brother looked at me not sure what to do next, so in my best “mom voice” I said, “Her name is Rorie, and she is not creepy. She may look different but she is just like you. She loves to jump and play and smile. You could miss out on a really great friendship by judging what someone looks like.” Both kids’ faces softened and they went back to jumping on the other side of the trampoline.
Caring for my children is my life. I don’t think of my children as “Down syndrome.” In fact, I sometimes forget that they are so different. So, when I meet someone who has never been around a person with Down syndrome, it is very strange to me. But, I try to imagine what that person must be thinking or feeling.
This is why it is so important that as parents, caregivers, teachers or friends of children with special needs, we are the educators and advocates. We need to be the “bigger people” and take that breath before we react. I wasn’t looking for these kids to be best friends with my daughter, but it is important that they accept and appreciate her for who she is. Ultimately, I won’t allow my children to miss out on life experiences because some people feel uncomfortable around them.
Amanda Karol is a stay at home mom of 5 children with Down syndrome. Before adopting her children from Ukraine (two in 2011 and the three in 2013), she worked for 10 years as an after school and summer respite site supervisor for children with special needs. She worked in Birth-to-Three programs and in adult recreation programs for adults with special needs. She is now involved in her church as well as in her children’s school. She is passionate about educating people and raising awareness.