Strength In Numbers
Bristen and Colt Musteen knew they wanted a large family. They’ve quickly grown and adapted their home and lives while learning so much raising their five kids, four of whom are on the autism spectrum.
By Amy Gordy, Photography by Katie Childs
The Musteen home is unlike any other in so many ways. You’ll find it at the end of a rural street in Benton. The yard is large with plenty of room to run. Inside, the home has been built to suit this unique family’s needs. Bristen Musteen’s decorative touch and her husband Colt’s handyman skills come together to create a space that caters to their five children—Abraham, 8; Hadassah, 6; Barnabas, 4; Boaz, 2; and Titus, 8 months—the four oldest are on the autism spectrum.
They thought of everything from custom, reclaimed wood floating shelves that are just out of reach of little hands, to an elaborate sensory playroom and secure outdoor play space.
“Our home in itself is built around the children. My husband installed a sensory room—it’s their game room—with sensory features like an indoor swing, crash pad and slide. One of the kids likes to throw things for visual stimulation. A therapist recommended hanging a ball on a string, and he loves it. He’s stopped throwing cars and things at his siblings,” Bristen said.
“Outside there’s a fenced-in playground because I can’t take all of the kids to a typical park because one likes to run. Our home playground has fake grass because Barnabas and Hadassah put a lot of stuff in their mouths. They would cover themselves in mud and dirt if they could.”
Bristen is the primary caretaker for the kids, though she has a hired nanny who helps out tremendously and her husband is very active with the children when he’s not working at his job as a Benton firefighter or at his side business as a handyman.
“Colt is my best friend and an extremely hands-on dad. He doesn’t miss a beat about understanding the kids. They are all very different, and juggling the needs of the different kids can be difficult. For example, something like going to the grocery store—one kid likes going and getting the balloon, and two can’t handle the lights so I can’t just take everyone.”
The Musteen family spends a lot of time shuffling back and forth to therapy appointments at Kidsource Therapy each week. The four oldest take speech therapy, occupational therapy and developmental therapy. Titus, the youngest, is enrolled in developmental therapy to keep a close eye on him, as Bristen has noticed some stemming and realizes the odds are not in his favor.
Research funded by Autism Speaks found that in families with one or more children on the autism spectrum, the chances that a baby sibling will develop autism are around 1 in 5, which is more than double previous estimates. In families with more than one older child on the spectrum, the odds increase to 1 in 3 infants eventually developing autism.
These odds don’t scare the Musteens, who though Bristen thinks they are done having biological children, have started paperwork for adoption. “We are really open to adopting a special needs kid who needs a home. We decided on that after Boaz was born, and we put it on hold when Titus came, but we have resumed it now.”
From the outside it looks like the Musteens have their hands pretty full, and Bristen admits there are many who question their decision to keep growing their family, and just don’t understand.
“Even families who are close to us don’t always understand it. The kids are so joyful, they are the happiest sweetest kids, and having one, two, five—it doesn’t seem overwhelming to us because of the joy they bring. There are days and moments that are hard, but I enjoy serving them and being the person who gets to love them,” she said.
All of the Musteen kids have their own unique stories. Abraham is 8, and it wasn’t until about 18 months ago that his language started opening up. “Two years ago he was still wrestling over learning colors, and now he’s thriving in a very small private Christian school where he’s able to get the attention he needs,” Bristen said.
The Musteens’ only daughter, Hadassah, is the most severely affected. “When she was 6 months old we were seeing red flags. At 9 months, my husband and I sat down at the breakfast table and said there’s something going on. We couldn’t imagine that we would have two kids with autism.” Hadassah’s symptoms were so apparent and severe she was officially diagnosed at 14 months. “She’s still not verbal. We have a lot of trouble pulling her out of the world she lives in. There’s a myth about autism that the children are not affectionate. Hadassah is extremely affectionate. She’s such a daddy’s girl. She’s come so far—she’ll hug my mom now and engage with my sisters. She’s like a butterfly, she’ll float around and if she comes and shows anyone affection everyone just freezes and watches. She’s so pretty and graceful.”
Barnabas is the most severely affected of the Musteen boys. Bristen said he’s more engaged with the outside world than Hadassah is but is also nonverbal though he’s recently begun saying “get down,” which as an avid climber is a command he hears frequently. “Barnabas is very joyful. He’s always rocking and smiling and laughing. He’s a serious cuddler—he likes that pressure and usually carries a weighted blanket.”
“When Boaz was diagnosed it was really shocking to me. He’s nonverbal but trying to talk. He doesn’t seem to present the same social or sensory problems the others do. I expect him to be more verbal than Abraham.”
The road will be long, but Bristen does expect all of her kids to get to a place where they can talk. “Even the nonverbal ones are trying, and we are looking at communication devices, which we will start implementing their therapy.”
While Bristen can easily list her children’s symptoms and diagnosis history, like a mom who’s spent endless hours with doctors and therapists, she paused to consider before recounting how it felt to receive each diagnosis.
“With Abraham I was relieved, because we finally had a name for what was going on with him and could work on a plan to help him. I was shocked about Hadassah’s diagnosis—I was always told girls aren’t supposed to have autism. When I got Barnabas’ diagnosis that was a hard season because I was pregnant with Boaz. I was very confused about why God would continue to trust us with these kiddos. I was worried about us being able to give them the best quality of life. I asked, ‘Why would you give all of them to us?’ Getting Boaz’s diagnosis was also really hard. He was our fourth, and I was hopeful it was just a severe speech delay, so it was hard when the diagnosis came back. I called my husband on the drive home and said ‘I’m not going back, if we have to go back for Titus you’re taking him.’”
The Musteens’ goal is to make sure the kids get the therapy they need, but to still give them a typical childhood that may just look a little different from most. Their typical day requires lots of patience and a go-with-the flow attitude.
Bristen has found a great support community at her Crossfit gym, which encourages her to bring her kids during her workout, and her church, Highland Heights Baptist, which created a special “calm down” room for when the kids get overwhelmed.
“We went from a really dark place—I realized I had no friends shortly after Boaz was born—to having great support through both Crossfit and the church. I would never in a million years have thought we’d find this support in a Crossfit gym, but they are like my family now,” Bristen said.
Her advice to other parents with kids on the autism spectrum: “Number one—if you have any concerns about your kids act on it—early intervention is so important. Number two—something we have learned to help us stay joyful is the perspective we keep. It’s easy to get on Facebook and see a girl Hadassah’s age getting mommy/daughter pedicures and get upset about it, but it’s all about perspective and what culture decides is normal vs. what we have as normal, which can be two different things. We just keep faith and love our kids."