If you remember our story, we are a family who found out their son had Down syndrome AFTER he was born. I didn’t even know that could happen as I thought Down syndrome was always caught on tests or ultrasounds before birth. I did everything healthy before and during my pregnancy, so Down syndrome wouldn’t happen…right? Both truths I found out five years ago. Surprise… your son has Down syndrome and now you need to figure out what that is and what that means for your life!
Down syndrome has pretty much fueled our lives since my youngest son was born, but it has been a good fuel and a fuel that has actually taken us someplace meaningful and purposeful in our lives. We’ve come to learn so much in these five years and here is what I want you to know about Down syndrome.
1. Many don’t know…
There is actually A LOT of misinformation about Down syndrome and A LOT of outdated information still used today in the world we live in. Down syndrome is the most common genetic disorder but less than half of humans have actually met another human with the chromosomal disorder! But it seems EVERYONE has an opinion on Down syndrome or labels it as the worst thing ever to happen to anyone. How can that be if you’ve never met someone with Down syndrome or know any basic facts? People think my son Ronin has Autism as they tend to switch the conditions, and people think Down syndrome is an illness or disease. All the false information and judgments are fueled by fear. Down syndrome is not scary at all. The opinions and misinformation get thrown at us a lot, but you know what, that’s why I’m here to use my voice to set the record straight. I would invite anyone to spend one day with us and I’m sure minds and hearts would be changed.
2. Inclusion works
Inclusion means that my child will be with your typical child in school and activities; both will benefit from it as well! Ronin has been included in his classroom since preschool and just started Kindergarten this year. He is spending most of his day with his Kindergarten class and is doing really well! But he KNOWS when he is being excluded…how do I know that he knows that? He has two older brothers at home and has to do EVERYTHING they do. He’s grown up really fast which I was worried about, but it’s proven to help him in many ways. Ronin might even qualify as the cool kid in school for his knowledge in football, YouTube, Fornite and Minecraft. People with Down syndrome have the same interests, hopes, dreams, ambitions just like everyone else. Not everyone has a family member or knows someone with a disability, so peers at school are a great way to introduce, understand and then celebrate the differences in everyone. Ronin loves making friends, and he is the life of any party. Your child will love getting to know Ronin!
3. Community matters
The Down syndrome Community is HUGE!!! Community means organizations, connections, families, programming, support online and in person, sports, employers, volunteers and teachers! Anything I need or our family needs is really one instant message, email, or phone call away! I always say to new parents,”Welcome to the best community that you never knew existed.” We are so lucky to be living in this age of technology and information. And how awesome that there are so many people that just “get it.” I recently went to a Rockin’ Mom Retreat (Our children ROCK an extra chromosome) with 1,000 moms from all over the world and spent the weekend recharging and learning. Who knew that ONE tiny extra chromosome has brought this many people together! I am ever so grateful for our awesome community!
4. Always happy, I think not!
Ronin is not always happy like people think people with Down syndrome are. If you stare at him long enough in the store, he will call you out by yelling at you, “Don’t Look at me!” or “STOP.” I wouldn’t want that to be me in the middle of Target or something! Yeah don’t stare at him as he can be straight up mean. I would say he is more of a self-advocate than mean, but the boy can yell! However, at home and with people he knows, he is a very happy child. He is funny and will make you laugh. And if you are sad, he will brighten your day with his smile. This boy loves life like no other. He is my inspiration on how I need to live my life and see the world while I spend my days here on earth.
5. Celebrate Differences
Everyone on this earth is different; even everyone with Down syndrome is different. Celebrate being the only you! Even though everyone is different, remember that everyone matters, everyone has purpose, everyone has worth, and everyone is someone! Differences are what makes our stories so unique and meaningful!
We have had five glorious years with Down syndrome in our lives and we’ve already moved so many mountains! I have a feeling we will start to build our own mountains here in the next five years and will be excited share the with the world what I know and love about Down syndrome.