Tonight I took my four boys to the pool. There was nothing elaborate or fancy about tonight-- just an ordinary summer evening at the pool with my kids watching them jump and splash around. My youngest son Nolan and I made ourselves comfortable on the large steps of the pool where he felt comfortable to meander about acting on his "felt" independence while still allowing me to keep a close eye on him. Another mother was playing sweetly with her two small children. My Nolan toddled over near them. This mama and her children just watched us intently without a word. Honestly, it was a bit uncomfortable.
As I sat in the awkwardness I began to feel ALL THE THINGS. Then I remembered my earnest prayer while Nolan was still in utero-- "Lord give me the GRACE to love Nolan WITHOUT comparison just as he is and help me love the other children in my life freely and COMPLETELY just as they are." As this sweet boy stared at my Nolan-- recognizing his differences-- that prayer ran through my mind and almost instinctively I took Nolan's hand and waved at the little boy encouraging Nolan to say "hi." What you may not know about Nolan is that he is non verbal. That "hi" was my way of lovingly advocating for my sweet boy and graciously teaching those around me how to interact with people who look and sound different than themselves.
This little boy, about the same age as Nolan, was eager to talk and wave but he needed my encouragement to know that it was ok. To be honest, I think his mama needed to know that it was ok too. This interaction allowed us to strike up a conversation and laugh for a few minutes together. I could have gotten my feathers ruffled over the curious stares and awkward silence of our pool friends but instead I decided to show this sweet family HOW to love my boy and others like him. I truly don't believe they meant to be hurtful but the reality is parenting a child with special needs is often LONELY and hurtful. People usually don't know what to say-- so they say NOTHING.
People often don't know what to do-- so they do NOTHING.
What I hope is impressed on your heart is that people with special needs aren't scary-- they are just PEOPLE. Possibly people with complex needs but still people who love to be spoken to and embraced with a warm smile even if physical or neurological limitations prevent them from returning the gesture. I am confident that interacting with them will bless them or their parent.
While still at the pool another little girl swam up to me as I stood close by watching Nolan dangle his feet in the pool. She piped up, "I know what he will look like when he grows up because I have seen him before." I'm not going to lie-- this one hit my mama heart like a ton of bricks. I knew what this sweet little girl was saying even if she couldn't articulate what she meant. I took a deep breath and allowed God's grace to pour over me as I chose to respond with that same grace.
"Well, you may have met other people like Nolan but he is actually his own person with his own traits and while he may have similarities, he is still growing like you are growing. You will grow up and look kind of like you look now but you will also change ALOT and you might look different. He will too."
Encounters like our evening trip to pool happen ALL THE TIME. I have had so many adults-- not just children, refer my son as "them"-- referencing the fact that he has Down syndrome. This is probably the phrase that hurts the most. It is so distant and insinuates that everyone who has Down syndrome is the same and does not have individual identity. The term Down Syndrome is not something to be ashamed to say. It refers to an extra chromosone that often comes with physical and developmental complications. We would never refer to everyone who has ever had cancer as "THEM." Our love ones with Down Syndrome are individuals who happen to have Down Syndrome. They themselves are not Down Syndrome. They are people.
I hope this post helps you to love those with special needs a little better and support those caring for them. This is not intended to be an angry rant-- truthfully I don't even feel angry. I really do believe "you don't know what you don't know." I hope that after reading this you will KNOW better and you will better be able to love on the people in your life as Christ loved you.
SPEAK to those who look and sound different. SMILE-- don't ignore people who have limitations. Talking to others with special needs doesn't draw attention to their limitations-- TRUST ME they are already keenly aware of their limitations. You stopping to speak and interact with families of special needs will mean more to them than you know. They probably feel very alone.
DO IT even if it is uncomfortable. You will get better at it and it will not always seem scary or awkward. And just remember that all people want love, acceptance and human interaction. Just be kind and speak!
To those who are caring for someone with special needs.... Take a deep breath. Give grace to yourself and to others. Allow others to fumble around as they figure out how to love the person in your life that you love so desperately. Choose to not get offended. Instead in graciousness and kindness advocate for your loved one. Find ways to teach others about people with disabilities. It took time and education for you to figure out how deal with whatever situation you are dealing with-- allow others the chance to do the same.
Most likely I will never run a race advocating for a cause or even join a chapter for special needs or Down syndrome-- not that those things aren't admirable, but the reality is I have four kids, I run a ministry and homeschool my sweet boys. My days are full and my time is limited. However I CAN advocate for my precious boy by teaching those around me how to love him and others with disabilities in a meaningful way.
Thank you for being willing to listen to this mama and for working at loving my boy and others like him in a meaningful way. It means the world to me. G'night!
I am a Christ follower. Wife. Boy mom. I love adventures, traveling, creating beautiful things and staying up late contemplating hard questions. I adore thunderstorms, tea parties, entertaining, french press coffee, good books, fire places and quiet mornings alone in God's Word.