Meghan Marrinan Feliciano was due to give birth to her third child, a daughter named Sybil, in July 2016. The pregnancy went smoothly, the baby...
A different kind of parenting journey
Wendell Sherman-Strand, 5, of Minneapolis — who vacationed out West with his family of five this past summer — has an extremely rare genetic condition.
Wendell was born in 2011 as a healthy baby. After his two-month checkup, his parents Katie Sherman and John Strand headed to northern Minnesota with their toddler, Bjorn, and infant Wendell to spend the summer on an organic farm.
It was there that Sherman noticed her son wasn’t grabbing onto things and sitting up like he should. The thought gnawed at her until their return to the Twin Cities in August.
“I just knew they would tell me something was wrong,” Sherman said.
After looking at Wendell’s wandering eye and lack of head support, the pediatrician sent Wendell to what would be the first specialist of many.
“My world exploded at that point,” Sherman said. “We were hurled into the medical world, consumed by what was going on — and terrified of what we didn’t know.”
And they wouldn’t know for an agonizing number of years. Test after test came back normal. No diagnosis could be found.
“I was stunned,” Sherman said. “How could this happen. We’re in the 21st century, and you can’t tell me what’s wrong.”
Meanwhile, Wendell’s condition changed rapidly and he developed seizures. Once able to eat solids, he began aspirating food and ended up hospitalized. After that, he began receiving nutrition through a gastric tube.
“I was mourning who I had thought my child was going to be,” Sherman said. “I could never even fully grasp what he was going to be like because he was always changing. Those two pieces turned our world upside down with emotional stress.”
Today, for Sherman and Strand, parenting is still stressful, but they’ve learned to cope using a variety of strategies, including help from in-home caregivers.
Wendell Sherman-Strand camping.
Now 5, Wendell enjoys special education kindergarten classes. His three loves are books, songs and being outside.
“Overall, he’s a happy kid. We’ve gotten to a point that’s more stable,” Sherman said. “He can’t walk or talk, but he understands a lot. He has a beautiful smile and he communicates in his own way.”
Sherman and Strand also have the small benefit of a diagnosis.
Doctors — with help from newly discovered genetic sequences — were recently able to confirm that Wendell has a mutated gene.
It’s a rare diagnosis, so Sherman has turned to a community on Facebook where families as far away as Mexico, Israel and Spain share their experiences.
In Minneapolis, she connected with parents of other special needs kids through community ed classes.
There, she met a mom with a strikingly similar story — and a boy named Julian.
Hanson's son, Julian
Seven years ago, Jennifer Hanson’s healthy, 5-month-old son, Julian, her second child, had a seizure.
Suddenly, he wasn’t breathing or moving. Hanson and her husband began to panic. She remembers running into the street, screaming for someone to call 911.
To this day, Hanson still has no diagnosis for Julian, despite extensive genetic testing at the Mayo Clinic and through a National Institutes of Health genetic study.
Julian has an unexplained unusual gait as well as a sensory-integration disorder and body-locking disorder.
Hanson knows a definitive diagnosis wouldn’t necessarily change her son’s life, but it would bring a certain comfort.
Right now, there are only more questions: “What’s it called? Is anyone else going through it? It’s very alienating.”
Julian talks using sign language and a few spoken words.
“He screams in frustration when he can’t communicate,” Hanson said. “I’ve been slapped, hit, bruised.”
To make matters even more challenging, Hanson is now on her journey of day-to-day special needs parenting on her own.
In the wake of Julian’s condition, her marriage crumbled.
Numerous studies have linked parenting a special needs child to a higher divorce rate.
Hanson knows why.
“People handle challenges and stress very differently,” said Hanson, who found herself a single parent of two, thinking, “There’s no way I can do this by myself.”
And, at times, it still seems impossible.
Despite years of testing, including genetic testing at the Mayo Clinic and the National Institutes of Health, doctors were never able to provide a diagnosis for Jennifer Hanson’s son, Julian, now 7.
Julian doesn’t understand danger, so there’s a constant fear that he’ll accidentally harm himself like he did once on a hot fireplace. Once he ran into the street — and was almost hit by a car.
He needs constant supervision like a toddler, Hanson said, remembering the time he turned on an upstairs faucet, resulting in $12,000 in water damage.
Parenting Julian has its delights as well as stresses, Hanson said. He’s often cheerful — and his ever-present smile can light up a room, especially when he engages with others by saying, “Hey, baby!”
Siblings come in second
Siblings of special needs kids face their own challenges. Hanson said her firstborn, 9-year-old Makai, wonders why Julian doesn’t have timeouts or chores.
“We can’t do activities that other normal families do. We have to modify our outings and activities,” Hanson said. “Makai is constantly second. I have to try so hard to give as much attention as I can to Makai. It’s especially hard as a single mom.”
In the Sherman family, Wendell’s older brother, Bjorn, now 7, experienced an initial mourning period.
“He wanted a little brother to play with,” Sherman said.
For his younger sister Segovia, 3, however, it’s all she’s known.
She climbs up on his wheelchair and goes for walks with him. (Experts say growing up with a special needs sibling can help children develop crucial skills, including empathy.)
Wendell has added a great deal of joy to the household, Sherman said, adding, “Ultimately, it’s been very positive.”
Julian and Makai
A rewarding family life
Wendell and Julian ride the same bus to a public magnet school in Minneapolis, which has a Developmental Cognitive Delay program. Their moms have been friends since they met at Early Childhood Special Education classes.
Both families have their own ways of creating experiences everyone can enjoy together.
In fact, despite the changes special needs parenting has brought the Sherman-Strand household, the family of five has maintained an adventurous lifestyle.
Last year, Katie Sherman and John Strand, who live in the Twin Cities, took a month-long road trip with their kids — Bjorn, 7, Wendell, 5, and Segovia, 3 — including stops at the Pacific Ocean in Oregon, Devil’s Tower in Wyoming and the Laura Ingalls Wilder site near Walnut Grove, Minn. In 2016, they also took all three kids to the Minnesota State Fair.
Last year they took a month-long road trip to Oregon, camping along the way in national parks, where Wendell loved being outside.
Hanson, meanwhile, includes both Julian and Makai in her outdoor hobbies such as running and biking. (Julian uses an ingenious adaptive bike on their rides.)
Jennifer Hanson includes her sons, Makai, 9, and Julian, 7, and in her outdoor hobbies such as hiking, running and biking in the Twin Cities and beyond. Photo by Juan Carlos ArÇvalo.
He enjoys drums, guitar, dance, music, books, iPads and ice cream cones.
“I try to create a world that’s bigger than what it would be like for these kids 20 to 30 years ago,” Hanson said. “It’s more rewarding for all of us.”
Taking care of yourself first can be incredibly difficult for parents with special needs children, said Dr. Elizabeth Reeve, a child and adolescent psychiatrist in the Twin Cities.
“If you aren’t getting a break, sleeping, having a date night with a significant other or friends, it’s virtually impossible to be caring for the kid.” Reeve said. “The social, emotional and behavioral care can be draining.”
Sherman couldn’t agree more. She’s come to realize how critical it can be to practice self-care.
“I appreciate it when people offer to watch the kids so my husband and I can go out,” she said. “Fuel yourself, so you can fuel your family.”
Reeve, who treats patients with significant physical or cognitive disabilities, is a special needs parent herself. She has an adult son with autism. She co-authored the 2012 book The Survival Guide for Kids with Autism Spectrum Disorders (And Their Parents).
“I live and work it 24/7,” Reeve said, adding that she finds rest and peace at her vacation home, a prairie restoration in southeastern Minnesota — “my passion and respite, a place to run away to.”
Families without a plot of prairie can still get the restoring effects of nature on a smaller scale.
“Getting outside doesn’t have to be expensive,” Reeve said. “We’re blessed in Minnesota to have outstanding outdoor space. Drive over to Como Park to walk through the flowers at lunch time. There are little things you can do that seem minor, but they’re really important.”
Makai and Julian
Despite the immense challenges, Hanson describes parenting a kid with special needs as empowering.
“I’m the lucky one,” she said. “I get to experience a whole other world. As a family, we can do this. We can make this work, although much differently than the path we thought we’d be on.”
Sherman said her son has inspired a lot of people — including her. This summer, she’ll start a program to become a physician’s assistant, all inspired by her family’s journey with Wendell.
“I really do look at this as a journey,” she said. “A journey of giving myself grace, leaning on others to help and knowing I can’t do it all.”
Abbie Burgess is a Twin Cities freelance writer and lifestyle blogger at thepinkpaperdoll.com.
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