What is a day in the life of a person with Down syndrome like? That’s the question posed by the writer and advocate Meriah Nichols and the Down Syndrome Diagnosis Network, whose mission is to provide accurate, up-to-date information to parents receiving a prenatal or post-natal diagnosis of Down syndrome. The answers, in honor of World Down Syndrome Day 2015 (Saturday March 21) are a beautiful mosaic of life in all its interesting variations. And by and large, they look like anyone’s life, extra chromosome or not. (You can also find other great ideas from the National Down Syndrome Congress at this link.)
I wanted my son to participate this year, since he is the actual person with Down syndrome. He helped me choose the pictures and I helped him “edit” what he wanted to say. He is 6 after all. The whole time I was typing this, him and his twin sister (who does not have Down syndrome) and big sister, age 9, were buzzing around me, fighting, arguing, trying to press the buttons, getting their heads in the way of my work, looking to see if far-away friends had messaged them, answering my questions, playing with toys, begging to go outside, putting on shoes without the socks and basically being nuisances to each other and to me. In a nutshell, that is a typical day for us.
This is a picture of him receiving a participation medial at a cheer competition for the Angels, which is this fabulous cheer team where kids with disabilities are paired with a teenage volunteer to learn tumbling and aerial routines that they perform locally. In this place, with these people, he shines. That look on his face of pure pride and confidence? That’s real, so incredibly real.
Some of his best friends are here, and every Friday we get to see them. He is especially fond of his volunteer, who is something of a big brother to him. What do you think about Angels, I asked him?
“Angels, my friends. I look and I wave. I wave to you! Then I get some ice cream.” Apparently he has not forgotten the one time after a competition when myself and some other parents went for ice cream with the kids.
“How did you feel when you got your medal?” I asked him.
“Happy….eeeee….that’s e in the middle?” He said.
“That’s not e, it’s a y,” piped in his twin sister with her usual exasperated authority. Day in the life? You betcha.
And next is a picture of all three at Christmas time (in case you didn’t notice the giant tree). I asked my son to look at the picture and tell me what he wanted to say about his family:
“I kiss Eva (big sister). I want to kiss Nino (that’s himself).” What else do you want to say? “Computers. Dinosaur Say Goodnight and Dinosaur Is Feeling Sick (two of his favorite books to read on the computer).” And? “I want to be Elsa and Eva can be Anna. Veronica (his twin) is Kristoff and Nino can be Elsa.” Frozen, if not his favorite movie, is the one he’s most obsessed with. He strongly identifies with Elsa and her unusual power.
What else can you say about your family?
“My sisters are nice to me.”
Do you fight with them sometimes?
“No.” (A total lie).
Do you like school?
What do you like best about school?
“I learn about Greek and computers too.” They go to a partial Greek-immersion charter school and all of them, to my surprise and delight, love learning Greek.
I also gave his sisters a chance to say something about him. First, big sister: “He can sometimes be annoying but he’s also really cute and funny. Also, whenever I cry or get sick, he always gives me a hug. And he always makes everyone laugh with his violent banana jokes.”
Him: “Knock Knock”
Us: Who’s there?
Us: Banana Who?
Him: “Banana Scratch Your Eye Out!”
And his twin sister’s opinion:
“He can sometimes be annoying, but he’s loving and funny. LIke when I get hurt, he cares about me. He helps me not feel sad anymore. And he can sometimes be mean. But you don’t want to write that. But even though he is mean, I still love him. He’s still funny. ”
Another way to celebrate this day is to read this wonderful blog post by Kelle Hampton and consider donating to fund college scholarships for people with disabilities.