A CHANGE IN VALUES

Joy and BJ Barlean have more than $100,000 left to pay off in student loan debt. But they have bigger priorities — making sure their three kids, all under the age of 8, are healthy and happy.

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Meet the Barleans. Joy and BJ have been married for 15 years and have 3 children. Their daughter Kyleigh is 8 years old, and their twin boys, Luke and Logan, are 5. The twins are one in a million: both have Down syndrome.

Although Joy and BJ have a combined student loan debt amounting to more than $100,000, they don’t see it as a dark cloud that’s always looming. “We think about [money] all the time, but our life doesn’t revolve around it. We’re OK with little; I think sometimes it gets to you a little bit. We still have a lot more than a lot of people, and we don’t worry about where our next meal is going to come from,” Joy said.  

Joy is a stay-at-home mom, so the family relies on BJ’s income to get by. Fortunately for the Barleans, they qualify for Medicaid, which helps cover all of Luke and Logan’s hospital visits, diapers and custom-made beds.

Getting all three kids to sit down and eat at the same time without fighting is often a challenge. “We have a lot more stress than a normal family does,” Joy said in regard to the boys’ Down syndrome. Both of the boys have individual education plans that require lots of attention and constant work on skills such as aggression management, communication and taking turns.

Logan yells across the table in the middle of a tantrum during dinner. Both Luke and Logan are mostly nonverbal. They’re still learning how to talk, but they know more than 100 American Sign Language signs and are very vocal, mostly using grunts, yells and one- or two-syllable vocalizations. While it may sound like gibberish to the average ear, Joy fully believes they understand each other.

“They totally have their own little language,” Joy said.

In the midst of the boys’ argument, Logan dropped his dinner — which consisted of sliced hot dogs with ketchup, diced cucumbers and blueberries — on the floor. When this happens, BJ and Joy pick it up, put it back on the plate, and serve it back. Food is one of the Barleans’ top expenses, particularly because they are all gluten free. Joy will go grocery shopping multiple times a week, and spends a lot of money on fresh produce.

Joy and BJ make it a point to take time to stop and celebrate the little things, like using silverware by themselves and saying specific words, like “no” or “mom.” “We don’t focus so much on still having to build gates, strapping them in booster seats sometimes, changing diapers, but rather focus on what they are doing and how far they’ve come, what they’ve been saying,” Joy said.

BJ and Joy prepare dessert — homemade popsicles — while Logan, Luke and Kyleigh watch a show.

Joy and BJ met at church, and started dating the fall of their junior year of high school. Joy, however, grew up in a strict, religious household where dating wasn’t allowed. Joy remembered sitting on her couch with BJ holding hands and her father coming home yelling at them. “After he found out we had kissed, we weren’t allowed to see each other,” Joy said. After Joy’s parents forbade her from seeing BJ, she moved out for several months and got engaged. “Ultimately I wanted to be done with dating, and we knew we wanted to get married before my parents even found out we were dating,” Joy said.

They got married a week before graduating from high school and have been together for 15 years. “I think a lot of people thought we wouldn’t make it,” Joy said. “Divorce has never been a question. We’ve had some rocky years, but it was never like ‘this is a problem we can’t work through or figure out together.’”

Joy graduated from the University of Nebraska-Lincoln with a degree in costume design, (because “why not?”) However after realizing that costume design wasn’t a career unless you wanted to live in Chicago, Los Angeles or New York City — which Joy didn’t — she moved back to Des Moines with BJ, briefly working for her mom and one of her mom’s clients at a law office. “Going to school for theater, looking back I’m going, ‘what was I thinking?' That was stupid. But I had a lot of fun and I did learn a lot through that.”

While Joy doesn’t currently work in the field of costume design or theater, she still puts her degree to good use, especially around Halloween. Here, she shows off a photo of Kyleigh in a princess dress that she made in 24 hours. Additionally, Joy has found her skills in costume design useful with the boys and their sensory needs. She’s made sensory tank tops, body socks — which are essentially stretchy pillowcases — and Lycra therapy swings.

 Luke gnaws on a “chewy” while Joy comforts him after taking away a toy. The chewys are used to help with the boys’ sensory needs.

Joy frequently uses the problem-solving skills she learned in college in her everyday life. For example, in theater, you work toward an end result of the production, with a lot of steps in between. “It’s the same with the boys with a task,” Joy explained. Currently, Joy is working with the boys toward an end result of successfully playing tag in PE. In doing so, Joy often spends several minutes a day helping them practice with stuffed animals or with the neighborhood kids.

After receiving an honorable discharge from the National Guard for not making it through basic training due to health problems and a knee injury, BJ followed Joy to Nebraska. While Joy worked on her degree, BJ worked several jobs including being a cart pusher at Walmart, mowing lawns, and working at a baby furniture store. He attempted to go to community college in hopes of becoming a firefighter, but BJ was just not ready for school, Joy said. “He was failing more than passing.”

After BJ and Joy moved back to Des Moines, BJ started attending Des Moines Area Community College but transferred to Grand View University before eventually graduating in 2014 with a degree in health promotions. Now, he works at Wellmark Blue Cross-Blue Shield.

Combined, BJ and Joy have more than $100,000 in student loan debt, but because BJ only makes $42,000 a year, they qualify for the income-based repayment plan, so their payments have been zero. Joy and BJ don’t look at their loan amounts very often. “It’s depressing and overwhelming because we’re still poor. And it’s not a high priority. If someday we get these loans paid off, great. If not, they’re going to be there forever.”

Joy comforts Logan while BJ supervises Luke as he plays in a cardboard box. 

After Joy gave birth to the boys, she decided to become a stay-at-home mom. “The years that the kids are young are really important. The amount of effort it takes for them to learn things, they need their mom home....It doesn’t make a whole lot of sense to work, all of the money I would make would go to paying off student loans and daycare costs," Joy said.

“BJ is the fun one. He plays with [Luke, Logan and Kyleigh] more,” Joy said. Joy is more meticulous about taking care of Kyleigh, Luke and Logan. “I’m making sure they pooped today, that they’re eating, putting in eye drops if they have pink eye,” she said, referring to caring for Luke and Logan.

“The boys are just content to be with you." Joy said. "They often play with nothing all day long."

Luke looks through photos on Joy's phone.

Joy comforts Logan while reminding him that he and Luke need to take turns.

Kyleigh plays with Luke after dinner.

“Luke likes people a lot but is also very independent. He wants to do what he wants to do but also wants to be your friend. And if he likes you, he really likes you,” Joy said.

Logan smiles while playing inside a box after dinner. Joy describes Logan as the most introverted of the three kids, but he is still pretty social. “He’s a nerd, he’s more cooperative at school and likes to show off what he’s learned.”

Luke jumps from the coffee table to the couch while playing after dinner. Both of the boys like to climb anything and everything. 

Kyleigh watches a show in the dining room while her brothers play in the other room.

Joy describes Kyleigh as being independent and mature. “[She] went through developmental stages quickly, she wanted to be big, quick.” Joy said Kyleigh was a 10-pound baby and was walking by nine months.

When Joy and BJ returned to Des Moines after Joy graduated from college, they returned to Vineyard Church, which at the time was one of several congregations housed in the Redeemer Lutheran Church. They had been looking around for a house or apartment because they had moved back in with Joy’s parents for the time being. So when the Redeemer parsonage became available, Joy and BJ jumped on the offer.

They pay $725 a month including utilities. “It was a big blessing to have this house here,” Joy said.

The Barleans watch Boss Baby — the boys’ current favorite movie — after dinner. The room adjacent to the living room is what Joy calls the sensory room. It holds a slide, a pile of pillows, therapy swings and exercise balls.

On the wall behind the couch are two heavy-duty wall lights. Function is more important than aesthetics, Joy explained. “When going to Menards and shopping for things, you’re looking for how thick the glass is, if they come in plastic … not what we would actually 'want',” Joy said. In child-proofing their house, Joy and BJ make sure outlets are covered, the shelves are high, and the gates in the doorways are tall enough to where the boys can’t jump over them.

Kyleigh describes their family as “special.” “We all have something, I have Wolff-Parkinson-White syndrome (a condition that causes a rapid heartbeat due to an extra electrical pathway), the boys have Down syndrome, we’re all gluten free.”

Joy spends a good chunk of her time at appointments, ranging from the ear, nose and throat doctor, allergy testing, wellness checks, occupational therapy, speech and chiropractic. “Basically our whole day is a therapy session,” Joy said. 

In between caring for the kids, Joy tries to squeeze in caring for herself, too. “This year, I’m trying to take care of myself a little better. Like actually making it to the chiropractor or other doctor appointments...and then little things like stopping for coffee by myself or with a friend and getting out with BJ or with good friends.”

 "Sometimes it’s hard, but most of the time it’s fun. Occasionally as much as those extra chromosomes require, it gets overwhelming, and that’s OK. When it happens, I’ll cry about it, talk about it with BJ and then we breathe and move on with our day. We try not to focus on what isn’t. Instead we focus on what is. I feel like I value life a lot more and I feel like the boys especially keep a perspective on what’s important,” Joy said.

“Having boys with Down syndrome has changed our life, changed our perspective and changed our values," Joy said.