*photos by Vick Photography
Luke came out of his bedroom, shoulders shrugged, head down, fireman pajamas on, and filled with feelings of hurt for his little brother. He noticed that some people were staring at Jack earlier that day. “I felt like some kids were looking at Jack like he was ‘weird’ or ‘ugly’.” He went on to explain that he was angry and just wanted to hurt them because of what they were doing. Oh my mama heart. Deep breath and respond.
“Well, Luke, you know how you have some friends that have different color skin and/or speak a different language than you? Well, think of someone that had never met somebody with different color skin or heard a different language spoken. They probably would be interested or curious also. It could be similar with people that haven’t met someone with Down syndrome before, so they may have questions. Remember what we said about “EVERYBODY MATTERS”? That we believe everyone was made in the image of God and it doesn’t matter what they look like, the way they talk, the color of their skin, the number of chromosomes they have, they are fearfully and wonderfully made. All of them matter to God, to their families, and deserve to be loved, valued, and respected. Each of these people that look at Jack a little longer or make comments, they just don’t know him and ultimately we get a chance to share with them that Jack is a brother, a son, a grandson, a classmate, a teammate, and so many other things just like you and I. We’re okay with Jack having Down syndrome, so really that’s all that matters. Same for us, if we remember that all of us are God’s masterpiece created with a purpose, it doesn’t really matter what anyone else thinks of us. Isn’t it awesome that Jack has reminded us to realize that every person matters and that differences make the world a beautiful place? We’ve learned a lot from him, huh?”
Exhale. Hug. “Now go back to bed.”
This is a blog post that I’ve been wanting to write so many times, and it seems appropriate I finally sit down (which isn’t very often) and put my thoughts down on paper. Raising a child with a genetic unique condition, Down syndrome, I understand that he makes up 1 in about 400,000 other lucky people in the United States that get to rock the extra chromosome. I also understand that as those unique features associated with the most common genetic condition and his differences (almond shaped eyes, low muscle tone, smaller in size, delays in speech) become more noticeable to others, naturally the questions arise,
“What’s wrong with that boy?”
“Why doesn’t he talk?”
“Why does he look like that?”
Mamas, I’m one of you. I know what you’re feeling. I used to have that same frantic thought, what if my child asks a question about another person, out of curiosity or simply a general observation. How will I respond? Would I shush them to be quiet, because of my own discomfort and lack of words. Sternly demand them not to be rude and pray they stop talking. Or have an open conversation, allowing growth for both us?
I’m here to remind you, we’re all on the same team. I need you, and you need me. What I’ve come to realize in these short four years is that my son has been my best teacher and I’m learning too…a lot about what’s important in life and a lot about people. Also, with being an educator at the elementary level, I know that kids are curious, yet many opinions and views of parents have become their child’s, and that concerns me in the area of disability. As a mom, I have a great opportunity to be the first one to model to my children that EVERYBODY MATTERS. When we avoid conversations with our child about the differences amongst us we are almost perpetuating the idea that there is something wrong with those that are different than us. Maybe it was modeled to us that way. Well, I’m thinking we can do better. I think it’s time.
This blog post is an opportunity to encourage you to formulate your response to the questions that WILL BE ASKED when they see someone different than them. We know it will come, just like the wonderful birds and the bees conversation. 🙂 Also, I know that if we do indeed ‘shush’ our kids in this situation it almost sends the message that there is something wrong or not to be talked about. My child has a disability and as his family we are completely okay with him having Down syndrome! Sometimes my questions is…are you okay with it?
If you’re looking for an idea of what I’d hope your response would include to the earlier questions, please feel free to use this conversation as encouragement to guide your answer. Thank you.
When we shared the news that Jack has Down syndrome with Luke (when he turned 4), he listened intently as we read the book, 47 Strings. Tessa’s Special Code, which is an age-appropriate children’s book explaining what Down syndrome is. We then followed up with the following conversation.
“Jack has Down syndrome. Just like you, he got chromosomes from mom and dad (hair color, eye color, and other wonderful traits). People with Down syndrome got one extra chromosome. That extra chromosome means we have a little extra to love. He is going to do all the things you’re going to do, it’s just going to take him a little longer to do them. It might be a little more difficult for him to do some things, but he will do them and we’ll help him, be patient with him, and celebrate with him when he gets there. What that also means is that he is uniquely created with a purpose just like you and I are. Down syndrome isn’t a bad thing or wrong, it’s just different than you and I that don’t have Down syndrome.”
My husband and I wanted to make sure that we set the tone that we do not believe Down syndrome to be a bad thing, it’s just different. We feel that difference is something to be celebrated.
Last year, I saw a heartbreaking video of a dad, sitting in his car with tears running down his face after hearing another parent respond to his child’s question about what Down syndrome is. The dad responded, “It’s an illness of not knowing anything.” Really, is that what Down syndrome is? This dad didn’t know what to say and then gave the next generation the knowledge and thought that people with Down syndrome will not know anything.
Sword to the heart.
I’ll say it again, the hardest part on this journey of raising a child with Down syndrome is NOT that my child has Down syndrome, it’s the way the world views people with Down syndrome. That I have to defend that my child’s life has worth and value. For those that know and love Jack, they know he’s made a positive impact on those around him. Who are we to say who’s life brings value and who’s doesn’t…and what are we using to measure? I know a lot of very intelligent people in the world that aren’t making a positive impact on our society. Yikes.
Parents, it starts with us. Our kids are curious. Honestly, how can we expect kids to learn and talk about it respectfully if we don’t model to them what it’s like to notice differences and encourage us all to learn more. I would be more than happy to have a person come up to me and ask my son what his name is. I might have to help him recite his name because he is working so hard on his speech, but IT IS COMING and we are so proud of him. WE ARE PROUD OF HIM, just like you’re proud of your child’s accomplishments! If you showed interest in him, you would be communicating to me that you see him, not his diagnosis. He’s a child that laughs, learns and loves…his family, cars, music, dancing, and going to the park. Sound familiar to your child? Yes, he learns differently, at a different pace than most, but we love him for him. We don’t want your pity, we want your friendship, and in any good friendship, we will learn a lot from each other.
On a flight back from an unforgettable family vacation in California this spring, I was sitting in the same row with a father and his teen (or early 20s) daughter. Jack was in the seat in front of us sleeping on my husband’s lap. I was wrestling my 22-month old daughter from running up and down the aisle of the aircraft when I heard the girl whisper to her father, “Does that boy have Down syndrome?” The father nodded and responded, “I think so.” “That sucks,” she expressed. Her father shrugged.
And that was it. Another conversation ended with a few words and a lot of assumptions. ‘Down syndrome, that sucks.’
Like I said earlier, we’re on the same team. I need you, and you need me. Let’s change this together. Let’s stop letting labels define us and our children. Not a diagnosis, not a disability. It goes deeper to knowing people. Behind each label is a person who has a lot to offer this world, will we give our kids an opportunity to learn from them?
Let’s do this together.