Insights on up syndrome with Oakley Peterson from Nothing Down About It
Oakley Peterson, created the Nothing Down About It (@nothingdownaboutit) blog to share her story about the joys of raising a son with Down syndrome.
What is Up Syndrome? How did you come up with it?
“Up Syndrome” is something we came up with shortly after we had our son Welles, who had been diagnosed with Down Syndrome. We had information flying at us from many directions about all the possible hardships and negatives this diagnosis would have on our family and life. It didn’t take long to debunk most of these ideas and perceptions. We quickly noticed the pure and beautiful joy that was enhancing our family life! We decided we were going to change the whole outlook for those around us and those we could reach by calling it “Up Syndrome”!
What is the most challenging part of advocating for your child?
Most systems in our society are not set up with individuals with disabilities in mind. We can be shut down and told “No” on things as basic as our kids being allowed in a typical classroom setting. Helping people see what kids like Welles are capable of and the value they bring to the world around them can be a lot of work. But it has always paid off and I feel like he is changing hearts and minds everywhere he goes. It’s not easy but it’s an honor to do it with him!
How did you begin advocating for Down Syndrome awareness and support?
I started a little blog when Welles was one! It was this passion for him and others we were meeting with Down syndrome that drummed up a desire to share him and his worth with whomever would listen!
What are some of your favorite organizations that advocate for Down Syndrome support?
We All Belong, Ruby’s Rainbow, Global Down Syndrome, Reece's Rainbow and United Angels Foundation are a few of my favorite organizations!
How did you explain Down Syndrome to Welles’ siblings when he was born?
My daughter was only one, but as my kids get older we have explained the value of people with differences — in terms of how Welles’ brain works a little differently, and how important it is to take the time to understand and include people who are not like yourself. We have also helped them understand the chromosomal process that led to DS.
What is your favorite thing about Welles that makes him unique?
He is so incredibly pure. Born without guile or malice. He loves unconditionally with zero judgement. He takes you for exactly who you are!
You have four beautiful children! How do you ensure that each gets the attention they need?
We make a concise effort to give each child the time and attention they need to feel important and loved. It’s not fancy or elaborate. We sit down and read a book with one kid, practice piano with another, ask for help making dinner and get all the chats in with them. Just spend time around the house doing simple things with each child each day. Some need more time than others some days and we watch for that and adjust!
Oakley Peterson is the creator of Nothing Down About It, a website that highlights her son Welles who was diagnosed with Down syndrome and the joy, happiness, and love he has brought to their family. To learn more, visit nothingdownaboutit.com or follow Oakley on Instagram at @nothingdownaboutit