The child in the picture is my 6 year old son, Cooper. He has Down syndrome. October is National Down Syndrome Awareness month so I thought I'd share some thoughts from a proud dad. I hope and pray this helps you as you interact with all types of special needs families.
This post is a revision of a post from two years ago. The info has been updated but the story and heartbeat is the same. I hope these words will inspire and educate you some about Down syndrome. Please help with awareness by sharing this post. Thanks!
1. Do NOT feel sorry for us. Cooper is our son and we are not in the least sorry we have him. Like most families with a special needs child, we were heartbroken at first. No one wants to be chosen for this. However, through the grace of God and the love and support of family and friends, we have seen the blessing of our son. So, there is no need to feel sorry for us.
2. We don't think about Down syndrome every day. At least I don't, I'll let me wife answer for herself. We definitely think of it often, but Cooper is one of five boys. Mostly we think of stuff like making lunches, cleaning up toys, keeping them from destroying the house and maybe getting a good night's sleep!
3. You can bring it up. We are not bothered at all if someone asks us about Cooper or his condition. We understand that most people are somewhat curious but aren't sure how to ask. Please know you cannot offend us. We have learned the lingo, but we know you haven't so if you are interested please ask, I LOVE to talk about Coop!
4. How "severe" is Cooper's condition? Well, that's a tricky question. There really is not a chart to measure the severity of Down syndrome. Downs is a genetic condition known as Trisomy 21 where his 21st chromosome was triplicated resulting in 47 total chromosomes instead of the typical 46. This means that every cell in Cooper is affected. Basically, either you have it or you don't. The difference in capability usually relates to the investment made in the child. More Downs children than ever are exposed to helpful influences at an early age that helps them master what comes very naturally to a typical child...things like walking and talking. Remember, Downs kids can do ANYTHING if they just have time and loving investment. One of the hurdles many Downs people face is additional medical challenges that require attention that takes them away from therapies, school or needed playtime.
5. How is Cooper's health? Cooper is very healthy. He was born with a blockage in his intestines that was corrected with surgery the day after he was born. Cooper has a VSD (Ventricle Septal Defect), AKA a hole in his heart. This hole has been closing on its own all of Cooper's life. In late 2011, Cooper had open heart surgery to fix the hole in his heart. This was an extremely difficult situation and he had a few complications but he is strong and healthy. He's honestly the toughest kid we have!
6. Down syndrome is visible. You will notice the look of Cooper's eyes and shape of his head, these are typical for children with Down Syndrome. He is also very small for his age - he will turn 7 in January (our 4-year-old is bigger than him). Many people with DS have a Simian crease which is a single fold line across the palm of their hand, which indicates low muscle tone in the womb. Cooper has a Simian crease on only one hand. Cooper sticks out his tongue a lot. We're working on that. His teeth are shaped differently. His toes and fingers are all on the short, stubby side. All people with DS have some degree of cognitive delay. They can learn anything, it just takes time. There are other features, but these are what you easily notice on Cooper.
7. The "Love Chromosome." Some have called the extra chromosome responsible for DS the "love chromosome" because almost every person with DS has a unique capacity to love and show affection. I truly believe God uses people with DS to remind us of His heart of love for everyone. This has been absolutely true with Cooper. Cooper does not care if you have money, what color skin you have, how you look or what you wear, he loves everyone, especially his daddy. :)
8. Our biggest challenges right now. Currently we are trying to teach Cooper how to talk, read and tell us when he needs to go potty. Cooper is very capable in his gross motor skills. He can run with his brothers and keep up most of the time. The talking, reading and potty have been challenges for a while and thankfully he is showing signs of improvements, it's just slow.
9. What you can do? Be a fan of positive Down syndrome pages/sites/blogs, etc. Defend the honor of ALL special needs people by not using terms like, "retard" or jokes about the "short-bus." Go the extra mile to correct that kind of disrespectful talk. Take a stand against the abortion of nearly 90% of children prenatally diagnosed with Down syndrome. The world is being robbed of the joy of these children. Encourage your church to make room for special needs children and welcome them in. So many special needs families feel alone and need a church family to surround, support and embrace their child with them.
10. Bless people with Down syndrome. Since this October is Down syndrome awareness month, I will encourage one last thing...bless them when you see them. You may have a person with DS bag your groceries; bless them with patience and even a tip. If you see a family who has a child with DS in a restaurant, anonymously buy their dinner. Go out of your way to start a conversation with someone who's has DS, patiently listen, welcome the hug (because it's coming) and learn something about them. Volunteer in your church or local special needs pre-school/daycare as a shadow or helper. Along the way you will be surprised at how "normal" they really are. You will no doubt end up like us, thankful to God for people like Cooper.
I would love to read any comments or stories. If you are a parent of a special needs child what would you add?
Post your comments here.