Thursday, March 21, 2013

World Down Syndrome Day 2013

It's the best day of the year! Today - March 21st - is World Down Syndrome Day. Officially recognized by the United Nations and people around the world, 3/21 is recognized as World Down Syndrome Day because the date reflects the most common cause of Down syndrome - three copies of the 21st chromosome.

If you read this blog then you know that my sweet boy was born with Down syndrome. We have been through many ups and downs in the past 4 and a half years but he stole my heart the moment he came into this world and no diagnosis could ever change that.

Last year I wrote about his birth story and a little bit about what we went through when he was diagnosed. If you would like to read about that, you can see that post here: World Down Syndrome Day 2012.

This year I think I'll share something different. When parents get the diagnosis, whether it is before or after their child is born, they are scared and understandably so. No one wants to hear that there is something wrong with their child. It's terrible for most parents when your child has something as simple as an ear infection, just imagine being told that your child has a permanent, life altering disability. Your entire world is turned upside down. You see all of the plans you had made for your future and your child's future going down the drain. It's terrifying. And even now after four and a half years, I still have those moments of fear and grief for the life I thought we would have.

But whenever those moments come (and they are much less frequent than they used to be), I try to step back and look at what we have. We have a beautiful family that is full of love and joy. Isn't that all we can really hope for? It's not always easy, but being a parent is never easy, regardless of any diagnosis your child may or may not have.

So, I'm going to try to dispel a few of the myths some people have about Down syndrome.

People With Down Syndrome Can't Learn
Not true. Yes, Aaron takes longer to learn things than his typical peers have, but that doesn't mean he isn't learning. Just because he doesn't meet the milestones "on time" doesn't mean he hasn't met them and it doesn't mean he won't continue to meet them. He may need more support and extra help but if he has the tools he needs, he will continue to learn and grow and is capable of great things!

People With Down Syndrome Are Always Happy
Umm, no. Although Aaron is probably happier than most kids when he is out and about interacting with other people, by no means is he always happy. He experiences a full range of emotions just like all of the rest of us. BUT, he is usually very friendly, has an amazing smile and laugh and his personality will light up any room. I can't count the number of times people have told me that he has made their day just by smiling at them, blowing them a kiss or giving them a kiss - all of this without being able to talk.  That is something we should all try to celebrate and emulate - not be afraid of.

People With Down Syndrome Are Angels
Similar to the previous paragraph, Aaron is by no means an angel. He can manipulate and throw a tantrum with the best of them. Jacob as a toddler was an angel compared to Aaron. He has shown us why every single child proofing device ever invented is necessary and why there still aren't enough of them. He is a pick-pocket and a flight risk. Then he smiles and hugs and kisses you and you forget all about his devilish ways. He is a child, a four year old with his own personality and a human, just like the rest of us.

People With Down Syndrome Are Sick
This one can be tricky to answer. Down syndrome is not an illness. Just having DS does not mean a person is ill. However, people with DS can be more prone to certain other medical conditions. About 50% have some type of heart defect but that doesn't mean they are life threatening. Aaron had a tiny hole in his heart when he was born (so he is part of that 50%) but it has since closed on it's own. Jacob actually had the same thing when he was born and his was larger and took longer to close - but it has as well. Most people with DS have what is called Hypotonia (low tone), which basically means their muscles are floppier than they should be. This is the reason they take longer to grasp a lot of gross and fine motor skills like crawling, walking, eating independently and even talking. It takes more work for them to use their muscles than it does for people with normal muscle tone. Conditions like Celiac disease, Alzheimer's and even leukemia are more common in people with DS than they are in the general population. But, other conditions such as solid tumors are less common in people with DS. There is even research being done to see why and if the answers could help treat or cure people with cancerous tumors. Isn't that amazing?! You can't tell me there isn't a reason for people with Down syndrome to be a part of this world - they could help contribute to curing certain types of cancer!

Aaron has certainly had more illnesses and medical diagnoses than a typical 4 year old, but even all of those doctors and diagnoses don't mean he is sick. He's sick when he gets a cold or an ear infection but otherwise, he's just a kid who has some medical conditions we have to manage.

People with Down syndrome are more like the rest of us than they are different. They have certain features that may make them look similar but that doesn't make them all the same. They are unique individuals just like we all are. I hope you will take the time to get to know someone with DS and see that they really do have something to give to this world.

Happy World Down Syndrome Day!

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