When Bianca Mitchell, a school administrator in Maryland, tells the story of her and her husband, Shon’s, diagnostic odyssey, it’s all too familiar.
For the first couple years after birth, doctors attributed their daughter Lauren’s challenges to hypogenesis of the corpus callosum, or a short brain stem. A genetic test in 2009 was not yet sophisticated enough to identify Kleefstra Syndrome. Then, after three more years of persistence, a second genetic test, when Lauren was 12, finally put a name to her struggles.
Despite the fact Lauren is nonverbal, has mild hearing loss in both ears and struggles with depth perception, she is enrolled in the Kennedy Krieger Institute in Baltimore — one of best schools in country for children with intellectual disabilities — and she is happy.
“She is good at communicating with you,” says Bianca. “She has her own style. She can be very bossy. If she goes to your house, she will go to the pantry and find the oatmeal and she will find a bathroom and she will turn on the bathtub.
“Everybody loves her, I’m only popular because of her. If I don’t bring Lauren with me to church, everybody is like ‘well, where’s Lauren?’”
However, it tears at Bianca’s heart that Lauren does not have any social friends her own age.
“I remember we used to get invited to everything, but as she got older and her behaviors were more profound, we stopped getting invited to stuff, and that was hurtful,” said Bianca. “Even now that her behaviors have moderated, people are reluctant to invite me places with her because they’re like, ‘Lauren may not be able to handle it.’”
For a while, that caused Bianca to avoid gatherings if she thought it might make others uncomfortable, but she says those days are over.
“A couple of weeks ago, I said, ‘I am not apologizing for my child anymore.’ This may sound insensitive or rude, but it’s true. We as a society have to accept everyone. I’m not apologizing for my daughter anymore; I’m just not going to do it.”
Based on her experience as an educator and a KS mom, Bianca offers the following advice:
“Your child is patient and resilient, and they’re going to show you everything that they’re going to be able to do when it’s time. When it is time for it to happen, it is going to happen. Also, have a plan, but don’t over plan; don’t over think everything. Because what I’ve found is, as Lauren’s gotten older, everything I’ve needed has happened at a certain time.”
For example, it wasn’t until recently that the Mitchells met another African American family in the KS community. One of Bianca’s best friends is a girls basketball coach in the Washington, D.C. area and one of the players on the team has a brother who was diagnosed with Kleefstra Syndrome about a year ago.
Bianca believes there are many more kids of all races that have KS, but they just haven’t been diagnosed yet due to health disparities.
“I think a lot of it has to do with this is such a rare disease. We are also fortunate to have good insurance, and I was persistent and got the diagnosis.”