As the parent of a 9-year old daughter with Down syndrome (see right), I pay attention to stories about children with this condition all the time. But it seems that the whole country (or at least everyone on Facebook) has read about Leo Forrest, a baby boy born with Down syndrome in Armenia.
Leo's mother apparently wanted to take the typical course in Armenia upon receiving the diagnosis, by sending Leo to an institution. His dad, a native of New Zealand, wanted to raise Leo at home. Now the dad has agreed to a divorce, taken sole custody of Leo, and moved back to New Zealand. He has also raised nearly $500,000 (out of a stated goal of $60,000) through a GoFundMe account for Leo's care.
I sympathize with both parents here, and I am delighted to see an international outpouring of support for Leo. And yet this story has unfortunately perpetuated at least three myths about Down syndrome, which I'm sharing here.
Myth: Parents of children with Down syndrome are likely to divorce.
In fact, according to a study by the Vanderbilt University Kennedy Center, married couples who have children with Down syndrome are less likely to end in divorce than marriages for couples with typically-developing children. Researchers aren't sure what explains that correlation. It may be something as simple as the age of the couple having the child with Down syndrome, since many couples in this position are older and perhaps more mature or economically secure, or it may be something generally true about children with Down syndrome. Regardless, in contrast to Samuel and Razan Forrest's story, divorce is not the norm for parents of kids with Down syndrome.
Myth: Raising children with Down syndrome is expensive.
The fact that Leo's dad has raised $500,000 could lead people to believe that having children with Down syndrome costs exorbitant amounts of money. This story demonstrates the different sociological situations into which kids are born, and it underscores the dramatic difference in cultural and governmental support for children with Down syndrome around the globe. The assumption that it takes a lot of money to have a child with special needs in many nations isn't always true, especially In the United States.
Instead, parents of children with Down syndrome receive support for Early Intervention services (like occupational therapy, physical therapy, and speech therapy), and by law, they also receive a free education starting at age three. There are also resources—domestically and internationally—available to support families and children with Down syndrome. Having a child with Down syndrome is not exorbitantly expensive. Samuel Forrest himself has said that he is looking for ways to give some of the funds raised to help support other families in Armenia that need it.
Myth: Parents of children with Down syndrome are either victims or heroes.
Many parents would say they are neither. I remember when Penny was born some people said, "I'm sorry," as if our daughter, who was healthily and happily at home with us, had died. Others would say, "These children only go to special parents," as if we had demonstrated exceptional abilities. We knew the reality: we were ordinary parents, bumbling our way through the challenges and delights with our baby girl. Samuel Forrest is neither a hero nor a victim. He's a dad, and perhaps he, too, is bumbling his way through what it means to receive the gift of his child with love and support.
I hope that stories like this raise awareness about the social pressure some families face when it comes to children with Down syndrome -- without perpetuating false information and stereotypes. I hope Samuel Forrest's story of loving his son underscores the most fundamental truth parents like me want the world to hear: Babies with Down syndrome are not problems to be fixed. They are children to be loved. Just like everybody else.
Amy Julia is the mom of three kids who love broccoli and hot dogs, and who ask for lollipops every day! Her guilty pleasures are Chardonnay and Diet Coke. She is also the author of Small Talk: Learning from my Children about What Matters Most and A Good and Perfect Gift: Faith, Expectations, and a Little Girl Named Penny. Visit her at amyjuliabecker.com.