A Different Way of Keeping Score

Rosalind Fournier with daughter Harper Nell

Rosalind Fournier with daughter Harper Nell

Down syndrome can be a game changer-in the most unexpected of ways.

Written by Rosalind Fournier//Photography by Beau Gustafson

“Did you know she had Down syndrome?”

This is what most people want to know. The first time someone asked, my daughter, Harper, was probably two or three months old. I’d been living in a bubble for much of the time since she was born, and in my fog I’d increasingly come to believe the fact of her having Down syndrome was completely unremarkable to others—maybe even unnoticeable.

But that day, I’d taken her with me to my son’s soccer practice and run into an acquaintance I hadn’t seen since the previous summer, when I was still pregnant. This was the first time he’d seen Harper as more than a swell in my tummy.

How can you even tell? is what I thought. “No, I didn’t know,” is what I said.

I understand why people are curious. Down syndrome is a difficult subject for parents who are expecting or might be in the future, because most people have no idea what it means to raise a child with Down syndrome. My husband, Brad, and I certainly didn’t. We’d never tried to educate ourselves about what Down syndrome is really like.

My doctor, who had already seen me through two pregnancies, was used to fielding my endless questions about the odds of having a child with birth defects. I had even more questions now that I was 40. I’m sure my doctor went through this with all of his patients—but he always had a deeper understanding of what parents really want, which is an assurance that simply doesn’t exist. “I think,” he once told me, “that people who say they’re concerned about birth defects deep down are actually unsure they want a baby (or second, third, or fourth) at all. And there’s nothing wrong with that.” Though I took umbrage at the time—of course we wanted another baby—eventually I understood. Having a baby who’s born perfectly healthy is a blessing, but it’s no guarantee of what will happen tomorrow, or in five years or 20. Children come with a lifetime of uncertainties, giving their parents infinite reasons to fret and question and worry that their children’s lives might not go as they planned.

Parenthood is not easy on control freaks.

The good news is that the opposite is also true: Some children are born with conditions that seem daunting or even frightening at first, and they turn out to bring more happiness into our lives, in unexpected ways, than we ever imagined.

I know all of this to be true today. Four years ago, it was a different story. So while I wish I could say I stood up and declared we didn’t want to test for Down syndrome because it didn’t matter to us one way or the other, I just chose to go with the kind of magical thinking that helped me fail statistics the first two times I took it in college: 1 in 85 odds for a mother pregnant at 40 = not going to happen.

So we didn’t have our baby tested for Down’s—but it’s not entirely true we didn’t know until she was born. During what turned out to be my last prenatal checkup, supposedly a month out before my due date, a last-minute ultrasound revealed something called duodenal atresia. To this day I can’t explain that properly other than to say it has something to do with an intestinal obstruction and she would require surgery as soon as she was born. But somewhere in all that I heard my doctor say it can be related to Down syndrome.

Brad and I wandered around in a fog the rest of the day. The next morning, we saw the specialist we’d been referred to. He told us our baby’s heart was healthy. I asked if that meant she didn’t have Down syndrome. “Of course she has Down syndrome,” he said. Everything about our response confounded him, which in turn confounded us. We didn’t understand why he was delivering this astounding, life-changing news so matter-of-factly. He didn’t understand why we weren’t more excited about our baby’s healthy heart. (Of course we were glad her heart was healthy. We just didn’t know to be concerned about that until 60 seconds earlier.)

Exasperated, he finally threw up his hands and said, “I don’t understand how you got this far without knowing this,” and I believe at that point he left the room, leaving his assistant to console me as I asked to be wheeled over to the psych ward. It wasn’t a proud moment. 

Karen Fleming (left) and Paige Bradley with their children (from left): Carson, Macon, Spencer, and Sullivan

Karen Fleming (left) and Paige Bradley with their children (from left): Carson, Macon, Spencer, and Sullivan

Reflecting on this recently, it all seems so foreign, but I know my reaction wasn’t uncommon. I called one of my friends, Paige Bradley, who also has a daughter with Down syndrome, and asked about her experience when she found out.

In many ways Paige, and her wife, Karen, couldn’t have a more different situation than mine. While my boys were already six and 10, Paige and Karen had a set of four-year-old twins and now were expecting another set of twins—which sounds overwhelming enough, even if you didn’t suspect one had special needs. And while Paige didn’t know for sure, she was aware that one of the babies had something like seven markers for Down syndrome, which is pretty close to a slam-dunk.

Like me, Paige is horrified to think back about concerns she had at the time that now seem absurd to her. But unlike me, she had taken steps to deal with her emotions. A clinical psychologist herself, she sees the value in seeking help to work through her feelings and saw a therapist during the last months of her pregnancy to talk about what worried her. Ironically, in her life before children she’d actively considered adopting a baby with Down syndrome. But now that she already had a set of twins and two more on the way, she wondered how the dynamics would play out.

Mostly, she worried about this. “Carson and Spencer (the older twins) had always been thick as thieves,” Bradley remembers. “I wanted that for Macon and Sullivan, too. But I worried they wouldn’t have that same kind of relationship.”

I’d had similar thoughts about my family, if not as well articulated. My boys hadn’t really wanted another sibling—much less a sister—in the first place. Could they love a little girl who was different?

After Brad and I were blindsided by the news, we left to pick up the boys. We made up a story about why Dad was home early from work. I cried at dinner, though I’d tried so hard not to. When my older son asked why, I told him something about pregnancy and hormones. I tried to remember every positive thing I’d ever read about children with Down syndrome, but in reality I was in disbelief.

Three days later, Harper decided she’d had enough of my moping around, and I went into labor early. She was ready to meet the world and be met. It breaks my heart to admit that I cried when I first held her. Until that moment, I must have still thought there was a chance she didn’t have Down syndrome. Worse, I still thought her having Down’s was something to cry about. But there were no judging looks. The nurse was expecting this and encouraged me to get it out.

A Turning Point

I think the moment I began to rally was when Brad woke me up a few hours later and let me know our baby was about to be taken over to Children’s of Alabama, where doctors would operate to repair her duodenal atresia. Alarmed—and frankly, offended—that they would take her without warning me, I made my way to the NICU and found her alone in a bassinet, sleeping peacefully. “Hang in there, baby girl,” I whispered close to her ear.

She spent the next three weeks at Children’s and was released on Christmas Eve. I came home with at least three large books on Down syndrome. I have never opened them.

But I did begin to learn, first from the people at the Bell Center, where I signed her up for therapy. Located in Homewood, the Bell Center for provides early intervention services to children with a wide variety of special needs and diagnoses. Families come from all over Alabama for therapy and to have their children attend classes there.  I don’t think I’d be the first to say that the Bell Center provides early intervention for parents as well as children—a chance to start focusing on the positive and know you’re in good company.

“Sometimes a family finds out following birth that their child has some challenges, and they haven’t really been seeking out other people,” says Executive Director Jeannie Colquett, “but they come to the Bell Center, and all of the sudden they find themselves surrounded by this community, and it just makes it so easy then to open up to another family and get that feeling of, ‘We’re on this path with you. We may be a little further ahead, but here are some things that we’ve done…and if you feel like this, it’s normal.’”

While early intervention therapies are the primary mission, Colquett says the Bell Center also spreads awareness in the community about people with special needs. It begins with the Service Guild of Birmingham, which helped found the Bell Center in 1984 and whose members raise money for the Bell Center and also act as one-on-one volunteers working with the children.

“That’s the real community builder,” Colquett explains, “because we have 100-plus women every year who are connecting with children with special needs in our community. It’s the same with the Mercedes Marathon (which supports the Bell Center) and our ‘Bell Runners’ who are running for a child at the Bell Center. They get to know a child here, and the same transformation goes on with that person, who then comes to know a little bit more about what we do, and then they become community advocates for people with disabilities.” There are also community volunteers in addition to Service Guild members who give time each week to work with kids in the classroom. “So we’re touching lots of different types of folks.”

The Beauty of Inclusion

Harper started to come out of her shell during her last two seasons at The Bell Center, participating enthusiastically in circle time and finding her rhythm. But when she turned three and started “normal” school, her personality grew about three sizes in as many months.

In Homewood, where we live, Hall-Kent is the designated elementary school to offer pre-K, which is is open to both kids with special needs and their typically developing peers. Harper is currently the only one in her class with Down syndrome, but it was clear from the start that the others fully embraced her as one of their own.

Her first teacher at Hall-Kent, Katie Wallace, explained to me that preschool is a special time for this kind of bonding, because as kids move on to elementary school and there is more pressure to meet certain milestones, there will likely be more periods of separation as Harper requires one-on-one work with aides to achieve her own goals. Therefore, preschool “is a time when we can celebrate being ‘one,’” she says. “The typical kids are used as peer models to model how an activity is done, but they are also peer ‘helpers,’ helping the kids with special needs complete the activity.

“As a class, we talk about our peers’ individual needs,” Wallace continues. “For example, if a student is non-verbal, I teach the typical students that those friends are learning to talk and they may learn to talk a different way, but they are still able to communicate in their own special way. We talk about differences a lot, but don’t focus on it too much. My three- and four-year olds are so innocent, joyful and free. I teach them that we are a class and are all friends.”

Finally, Wallace says her students carry that sense of one-ness with them into elementary school and beyond. “These kiddos are not at all shaken by seeing wheelchairs, etc., since it has been a part of their daily classroom scene. They don’t think twice about helping, and see it as an honor.”

The non-profit Children’s Dance Foundation, also in Homewood, has a similar philosophy of inclusion. Though they do offer a class specifically for people with special needs, most special-needs children who attend classes do so among their typically developing peers, explains Blakely Cottle, one of the program directors.

“Our philosophy is that dance is for everybody,” Cottle says. “So we are always striving to make sure that everyone who wants to learn to dance can find a place here. If they have developmental delays, they are welcome here. If they want to be a prima ballerina, they are welcome here. We have a place for everyone, and we want to meet everyone’s needs and make sure they all get to enjoy the joy of dance.”

She adds for kids with special needs, dance helps kids them work on balance, coordination and strength building—which is important for children with Down syndrome like Harper, who struggle with low muscle tone—in a way that’s more fun than traditional physical therapy.

And like inclusive preschools, the Dance Foundation provides a way for children to come together and embrace differences at a formative time in their lives. “More often than not, children love to surprise you,” Cottle says. “They love to be helpers, and they love to help that child who might be different or might be struggling in class. Every once in a while, children do notice differences and ask questions about it, and we make sure our teachers are trained to address those and not just let them slide, but make sure whenever possible to bring it back to, ‘Yes, we’re different, but we’re also the same. And here are all the ways that we’re the same. There are many more ways that we are alike than we are different.’”

Looking Ahead

Still, Harper is only four, and I do find myself wondering about her future, just as I do my boys’. What will it be like at Edgewood, where she’ll go next year for kindergarten? What about middle school, high school and beyond? I recently called Tricia Kirk, executive director of The Exceptional Foundation, to ask about her experience with older kids and adults with Down syndrome. She innately understood some of the concerns I already have: namely, that kids with special needs might struggle to have friendships with their normally developing peers as they grow older. Even now, outside of school the people who know and embrace Harper are almost always adults—the people from the gym where we exercise, the stores where we shop, the church we attend, or even the salon where I get my nails done, where they ask after her if I show up alone. That’s because, to use a cliché, Harper has never met a stranger—but to be honest, without the magical nurturing that takes special in an integrated, special-needs classroom, sometimes other kids—uninitiated to the world of kids with Down syndrome or other differences—don’t understand why she can’t talk or do other things like they do.

Tricia Kirk (center), executive director of The Exceptional Foundation, says the foundation participants “understand each other’s exceptionalities, strengths and weaknesses, and accept people for who they are.”

Tricia Kirk (center), executive director of The Exceptional Foundation, says the foundation participants “understand each other’s exceptionalities, strengths and weaknesses, and accept people for who they are.”

That’s where a place like The Exceptional Foundation comes in. A non-profit organization adjacent to Homewood’s Central Park, the Exceptional Foundation provides individuals with special needs a place to enjoy social and recreational activities outside of school. For school-age kids starting at the age of five, the foundation offers after-school and summer programs, and for adults age 21 and up, it’s a place for participants to enjoy life to its fullest, on their own terms, among people who accept them completely.

“Here, it’s like their own city,” Kirk says. “Our people with Down syndrome, or people who are oxygen deprived at birth, or people with autism—they just gel perfectly. Every one of them knows that they are in the special needs world, and they understand each other’s exceptionalities, strengths and weaknesses, and accept people for who they are.” They also complement one another—those with Down syndrome tend to be extremely social, where their friends with autism are more likely to know important information such as phone numbers and addresses. And while they might live in their own community during the hours they spend here at the foundation, they also spend a lot of time together out in the larger world—taking Exceptional Center-hosted trips out to lunch or to the park, and even annual trips to the beach.

“I learn more from these people who come here every day than I can ever teach them,” Kirk adds. “It’s okay that their friend doesn’t know his letters because of whatever his special needs are. His friends accept that. So maybe in return, we should all learn patience from them. Look at the country right now—maybe we should learn acceptance and treat everyone as if we are the same.”

Many of the adults at the Exceptional Foundation also have jobs, at least part time. We commonly encounter them at grocery stores, for instances, but some small business owners also hire people with Down syndrome and other special needs.

Keith and Amy Richards, founders of Taziki’s, came about it almost by accident. They happened to be on a trip when they ran into a woman named Cindy Vinson, the special needs job coach for Shelby County Schools. After learning who they were, she asked if they’d be interested in hiring any of her students or graduates with special needs.

Keith says he wasn’t sure what that would entail but told Vinson, “Why not?” The first student he hired was a young woman named Brandy Nivens, who has Down syndrome. “We just fell in love with her. Brandy would do work that other people would find monotonous, but they give it to her, and man, she would fold the best napkins. And when she picks the grapes, she makes sure they’re washed perfectly. Everything is perfect with her.” 

So when Vinson asked if Keith would consider bringing in another student at a different location, he said, “’Heck yeah! I love this.’ Now I have an array of students, and actually now a lot of them aren’t even students any more. They’ve graduated. Brandy’s now 30 years old—she’s been working for 10 years.”

Taziki’s founder Keith Richards with some of his special-needs employees. “My personal mantra is, “How do you change lives?” he says. “And it can be so simple as hiring a special-needs child or adult.”

Taziki’s founder Keith Richards with some of his special-needs employees. “My personal mantra is, “How do you change lives?” he says. “And it can be so simple as hiring a special-needs child or adult.”

The Richards have received awards for their contributions to the special-needs community, and Keith says the recognition is nice, but that’s not why they do it. “I do it because I love, love, love these kids, and we’re putting them in hopefully a good working environment, but also giving the parents a feeling that their children can do something constructive and they don’t have to worry about their child or adult while they’re at Taziki’s. And now our franchise community has kind of embraced my passion for this and done the same thing.”

He’s also helped special-needs students at Vincent Middle/High School in Shelby County start their own micro-business: HOPE—Herbs Offering Personal Enrichment. Kids in the special-needs class grow herbs, and Keith buys them.

“My personal mantra is, ‘How do you change lives?’” Keith says. “And it can be so simple as hiring a special-needs child or adult, because it’s giving back. I love them, and as a business owner and as a child of God I think this is what you’re supposed to do. And watching how my employees have treated these young adults has just been incredible to watch.”

My friend Paige feels the same way when she sees the way their three other girls interact with Sullivan, their daughter with Down syndrome. “I had been worried that Macon would miss out on having a twin just like her, but it turns out they all fight over Sullivan,” she says. “I think Macon actually won.”

As for our daughter, Harper’s story is just beginning, and so far all I can say for sure is that already she has a view of the world that challenges me every day to reconsider my own. I recently remembered a story that was part of a sermon delivered by the Rev. Dr. Glenda Curry at All Saints Episcopal Church:

“A 4th grade teacher introduced a game called ‘balloon stomp’ to his students. A balloon is tied to every child’s leg. When the signal is given, the object of the game is for the students to try to pop everybody else’s balloon while protecting their own. The last child with an intact balloon is the winner.

“Balloon stomp is a zero-sum game. If I win, you lose. Anyone else’s successes diminish my chances…it’s Darwinian, the survival of the fittest.

“Then a second class was brought in to play, only this time it was a class of developmentally challenged children. They got the same rules….(but) the kids didn’t quite get the instructions. They understood that the balloons should be popped but instead of fighting each other off, these children got the idea they were supposed to help one another pop the balloons…When one boy couldn’t quite step on his balloon target, the little girl to whom it was tied held it for him till he stomped it flat. Big smile. Then he held his for her to stomp. On and on it went, one child helping another. Everybody cheered and everybody won. A different way of keeping score is born.”

When children with special needs come into our lives, they teach us a different way of keeping score, too. In fact, it’s about not keeping score. When Harper walks into a roomful of strangers, babbling as if describing a glamorous trip to Paris and hugging everyone like they’re longtime pals, she isn’t wondering—as I’m apt to do—how she measures up in terms of likeability, intelligence, fitness, acceptability. She just assumes they see her as she sees them—as a friend. 

When I asked Rev. Curry for a copy of the sermon about the balloon stomp, we talked a little about Harper, and I asked her thoughts about how people with Down syndrome fit into God’s vision. “He wants us to find gifts in the differences, and no one person is like another completely,” she says. “We’re each unique, unrepeatable miracles. I have long believed God hopes we will see each other the way he sees us, and in many ways, Harper is able to see with God’s eyes. She doesn’t see motive, weakness, advantage, greed, and lots of other flaws that seem to lead ‘normals’ into dark places.

“Being in a relationship with her brings out good parts of us, (just like) the children from the story about the balloon stomp who play together redefine our norms instantly…and open a window to love each other. They appeal to our higher angels.”

My daughter certainly appeals to mine.

3 Responses to “A Different Way of Keeping Score”

  1. Sana says:

    Rosalind this is just beautiful! I’m delighted to know your family.

  2. Ann Sanders says:

    Thanks to Keith and Amy Richards for giving these special people a chance to be appreciated for the skills that they have. We lease to Tazikis at Mountain Brook Plaza 280 and our favorite folks there are the special employees who always give us a hug.
    We have a special Grandson who brings joy to us each day. He has a large capacity for giving love and receiving it. Supporting the Exceptional Foundation has become a big part of our lives. After attending the Bell Center our Grandson has excelled in many of life’s skills. Each summer he attends Merrimack Hall in Huntsville which is another great facility for special children and adults. Having a different life does not mean you have less of a life.

  3. Brad Early says:

    Rosalind, you are a great parent. I appreciate the article. I grieved for a long time after our son’s diagnosis. Comparing reality to my expectations was a destructive exercise that was difficult for me to stop. Grayson’s disorder (Lesch Nyhan) is so rare that we could find no other parents nearby that shared concerns and experiences specific to his condition. Thankfully, we found an online support group. I cannot imagine how isolated I would have felt otherwise.

    Grayson has had a positive impact on his older sisters. I can see that they are more empathetic and take fewer things for granted than their peers. Best of luck to you in the future.

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