“I don’t want people to look at my child and think she’s stupid or feel sorry for her,” Hampton said, noting that it wasn’t that long ago that children with Down Syndrome were relegated to institutional settings. Now, therapies and more inclusive education practices are giving people with Down Syndrome the chance to lead more fulfilling lives.
Even with the progress, though, advocating for a child with Down Syndrome or other special needs can be thankless and exhausting work. Warrior moms are tired, but it’s not because their children are a burden.
They’re constantly fighting public perceptions and social stigmas. They log countless hours battling insurance companies about coverage for therapies. They often have to lobby for services from the local school system, and then keep a close eye to make sure their children’s Individual Education Plans are implemented and working. And, like Hampton, they’re worrying, even when their children are toddlers, about what awaits them in adulthood.
Yet for all the fatigue, for the most part, their lives are the same as any other mother’s, because, you know, these are their kids. Fighting for them is part of the job description. Hampton tries to reflect the normalcy of her life by deliberately not mentioning Down Syndrome much on her blog Enjoying the Small Things.
“My advocacy is about reading between the lines,” said Hampton, who lives in Naples, Fla. “I don’t talk about it a lot, because I want people to realize that we’re just a normal family, so when they see families with a child with Down Syndrome they don’t feel sorry for them.”
Hampton would rather people talk about all of the things Nella can do. Nella loves music and dancing — particularly to Hannah Montana and Taylor Swift — and playing on the iPad. She is busy learning her letters and she loves to talk. Just like most 3-year-olds.
Hampton acknowledges there is a wide range of difficulties affecting children with Down Syndrome, and many other families struggle with medical problems or cognitive issues that Nella doesn’t have. Regardless of those challenges, though, she wants everyone to see Nella and other people with Down Syndrome as people, instead of always viewing them through the lens of their disabilities.
“I want to build a world for my daughter so that when she’s 18, she’s happy,” Hampton said.