North Bay boy becomes international ambassador for spreading Down Syndrome awareness
SANTA ROSA, Calif. (KTVU) - A five-year-old boy from the North Bay has become a new face for spreading awareness about down syndrome. James O'Leary just became an international ambassador for the non-profit Nothing Down which is dedicated to showing people there is nothing down about Down Syndrome.
KTVU met James and his mom Larkin at their home in Santa Rosa where he showed us the cars he loves to play with and the puzzles he loves to solve and in no time at all we were charmed.
His mom says, "We are just a typical, family there is nothing different about us at all, he just happens to have a label." And like so many moms, she beams with pride when she talks about James, describing him as "a little ham, he's a great friend, he's super empathetic." She says "When I list things about him the very last thing I list is he happens to have Down Syndrome."
Larkin O'Leary and her husband strongly believe in sharing their family's story because she says the Down Syndrome conversation is important because it helps people see the person not just the disability.
"People don't want to ask because they don't want to offend and people don't' want to share because they are oversharing but it's a conversation that needs to be started," she said.
Teaching people how to have that conversation comes naturally. She and her husband are both teachers, and since James was born they've also been learning a lot of about Down Syndrome.
Larkin says her pregnancy with James had been easy. His diagnosis at birth was a surprise. "We had no idea until he was born," she said."I knew nothing about Down Syndrome."
From the day he was born it's been a whirlwind. "We were in the nicu for eight days and then he had open heart (surgery) at four months old and then he had intestinal surgery a week later." Larkin said. "He ended up having a web that caused him to vomit and not be able to gain weight and eat, he was actually not ready for him to do his open heart surgery but they did it anyway."
From the start Larkin shared their ups and downs. "We had so many people reaching out to us that I started blogging and I blogged the first year of his life every day."
Thursday she and another mom whose daughter has Down Syndrome also go to schools to spread awareness. They are known as the two moms.
She says often the children at schools ask better questions than adults saying "I think adults are just scared, they don't want to offend and kids they aren't as scared." And while it may be tempting to just focus on the good moments, she is honest about the rough spots admitting that sometimes she gets mad that James has more challenges than other children.
"Yeah and I get jealous and I hate that about the whole thing but it's the truth it feels really sad to me that I know during my pregnancy I did everything right," she said.
She doesn't mind telling you that at age five, because of his intestinal problems, James still eats pureed food, she'll tell you about the band on his head that helps him hear, and explain how sign language has helped him communicate. "It doesn't matter that he doesn't speak the words they can still communicate with him and people who want to, will learn to communicate with him like any other kids," she said.
Education she says is also important because people aren't always kind. "It's when I see people looking at him and you can tell when it is cute eyes or curiosity and when it's with disgust like why are you bringing him out into public and you do get those looks unfortunately."
She deals with it all but now that she's pregnant with her second child, she admits there is a lot of fear. "With the first one I had no concerns I had worries whatsoever this one has been very scary."
It's all part of the conversation and Larkin says understanding benefits us all. That's exactly what James' preschool believes, too.
I would say about 30 percent of our population currently has some special needs of different degrees
His preschool is called LEAP which stands for Lattice Educational Achievement Preschool. The school says it believes in promoting "inclusion of children with disabilities to support all children in reaching their potential in our school community. The school says modifications are made, but also say the children remind us how easy it can be to accept each other's differences.
"Inclusion definitely benefits everyone there is plenty of research that says it supports growth academic growth for people with and without special needs," said LEAP inclusion specialist Emily Parker.
And when you see them run, and hear them laugh, and watch them play duck duck goose, you see the child not the disability.
Larkin hopes to make the conversation a little easier and remind us we are more alike than we realize.
"I'm just a mom just like you. I love my son just like you love your kids and there is no differnce," she said. "I don't even see an extra chromosome you know I see my son."
James is doing great in preschool. He will get to meet his new baby sister in June.
World Down Syndrome Day was also officially recognized around the globe by the United Nations on March 21. The theme for 2019 was Leave No One Behind, Organizers say they continue to work to address prevailing negative attitudes, low expectations, discrimination and exclusion.