My friend Ashlee and I met thru our kids in pre-K. By chance, we also happened to have younger kids around the same age. Sadie and her friend, Charlie, play like any toddlers do. To each other, they are just kids wanting the same toy as the other has. Ashlee began to open up to me a bit about her son and his daily struggles.
Charlie was born with an extra chromosome. To Sadie and me, it just makes him an extra bit more special in our hearts. There are a lot of daily struggles for Ashlee, but Charlie brings so much light and excitement to anyone he encounters. We thought we’d check in with this fellow Mama and learn a little bit more about her daily life, her wishes for society, and advice for other mamas.
What is the biggest misconception about Down syndrome?
Charlie is more like a typical kid than anything else. His Down syndrome doesn’t define who he is. Charlie is just as unique and different as any other kid, with his own interests and full range of emotions.
What is a day like in the life of Charlie?
He sleeps in his own crib, goes to summer camp and has play dates with friends. He isn’t walking yet but he gets closer every day. Charlie also attends therapy though Leanne Britton Center where he gets OT, PT, speech and music therapy. A few times a week, he also gets feeding therapy to help him learn to eat by mouth. He also has lots of doctor appointments, but as he grows, those have slowed down a lot.
What advice do you have for a mom who recently learns her baby has Down syndrome?
The best advice I can give to someone who has just received a diagnosis of DS for their baby is to try to remember that they are still having a beautiful baby — that has not been taken from them. A friend of mine who has a 5-year-old daughter with DS told me that exact advice when I contacted her after getting Charlie’s diagnosis. She was right, although I had a hard time seeing it at first — this was the baby I had prayed for and he would bring me lots of joy. I could still do all of the “baby” things that I had dreamed of doing with him after he was born. My personal favorite baby thing: SNUGGLING!
How do you keep Charlie interactive with the other two kids?
He is just like any other little sibling. The relationship he has with his older brother and sister is natural and needs little interference from his parents.
What was the hardest hurdle for you when bringing Charlie home?
He spent 6 weeks in the NICU. Not all babies with DS have such a long NICU stay; many come home right after birth. Charlie, however, had trouble drinking from a bottle. Before he was able to come home, he had to have a g-tube put in so we could feed him. He came home getting almost all of his nutrition through his g-tube.
What can society do to be more welcoming and compassionate to a child with Down syndrome?
Take the time to get to know someone before making assumptions about them. Invite them for play dates, invite them to your kids’ birthday parties, talk to them, befriend them, get to know them. If you do, soon enough you will realize that not all people with Down syndrome are the same. If you take the time to get to know someone with DS, you will learn this very quickly. They are just as human as anyone else with a FULL range of emotions, dreams, interest, and opinions.
Do you or someone you know have a child with Down syndrome? What was your biggest lesson and what is something you wish society knew more about? —Jennifer