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What people with Down syndrome can teach us about living in the moment

SALT LAKE CITY — When Milo Benton was born four months ago, there was a small crisis with his breathing. It was quickly resolved, but the hospital staff wanted to check him over more thoroughly. So Stephanie and Adam Benton gave their new baby a quick squeeze and off he was whisked to the newborn intensive care unit.

"You worry your whole pregnancy about your baby being healthy," said Stephanie Benton, 34. "When he was born, he had all his limbs and he looked just fine. I thought they were just being extra careful."

The baby was soon back in Stephanie's arms and while Adam videotaped, she did a meet-our-new-miracle commentary on Milo's features: "Look at this nose. I've never seen this nose before," she remembers saying. "Look at this ear; it's kind of folded over. … My goodness!" Milo was content, dozing through the narrative, eyes closed.

"For two hours, I was the most happy, calm person. I was just so grateful to be done with the pregnancy. I had a healthy baby. Then we received news that hit us between the eyes," Stephanie said.

Stephanie Benton holds her son, Milo, as he gets sleepy before his afternoon nap at their Salt Lake City home on Tuesday, March 12, 2019. Stephanie and her husband, Adam, did not know Milo had Down syndrome until he was a couple of hours old. Now they're figuring out what that will mean.

Steve Griffin, Deseret News

Stephanie Benton holds her son, Milo, as he gets sleepy before his afternoon nap at their Salt Lake City home on Tuesday, March 12, 2019. Stephanie and her husband, Adam, did not know Milo had Down syndrome until he was a couple of hours old. Now they're figuring out what that will mean.

Doctors said Milo had Down syndrome, the most common chromosome disorder affecting babies. About 6,000 Americans are born each year with the condition, caused by a full or partial extra copy of chromosome 21. The name "Trisomy 21" may explain why World Down Syndrome Day is marked on March 21 — "3/21" — each year around the globe, with activities ranging from celebration of those with the condition to a push for policies that improve their lives.

In recent years, several state legislatures have proposed bans on abortions sought only because a child might have Down syndrome, and cases are working their way through the courts in some jurisdictions. Meanwhile, those providing care are emphasizing attention to individual challenges like hearing loss so that prompt treatment can minimize harmful effects.

"People with Down syndrome attend school, work, participate in decisions that affect them, have meaningful relationships, vote and contribute to society in many wonderful ways," the National Down Syndrome Society says. Cognitive delays are "usually mild to moderate."

Over several days at the hospital, the Bentons would learn a lot about the condition, the available resources and what to watch for. They'd change some expectations, mourn those changes and celebrate the cuddly bundle that is Milo. Not unexpectedly, their emotions have been swinging back and forth a bit as they adapt to the unexpected.

"I think that every child is going to have problems in life and every kid is going to have obstacles and things they're going to have to overcome. You just usually don't learn what they are within the first two hours of your kid's life. In some ways, we know more about him than our other children," said Stephanie, referring to Pippa, 2, and Wade, 4.

In the moment

Parents comment that children with Down syndrome live in the present — something kids generally do well and adults do poorly as their thoughts bounce between past, present and future and the worries that populate each realm.

These kids' focus on the present is reminiscent of "mindfulness," the process of clearing one's mind and focusing on what's happening "right now." Advocates of mindful practices claim they bring calm and increase happiness.

Stephanie Benton changes her son, Milo, as he gets sleepy before his afternoon nap at their Salt Lake City home on Tuesday, March 12, 2019. Stephanie and her husband, Adam, did not know Milo had Down syndrome until he was a couple of hours old. Now they're figuring out what that will mean.

Steve Griffin, Deseret News

Stephanie Benton changes her son, Milo, as he gets sleepy before his afternoon nap at their Salt Lake City home on Tuesday, March 12, 2019. Stephanie and her husband, Adam, did not know Milo had Down syndrome until he was a couple of hours old. Now they're figuring out what that will mean.

That's something Stephanie Benton relates to Milo, noting that living in the present is "infectious. I think parents so often are just worried about how their kids are going to turn out and worried about the future and worried about the decisions their children are making and the decisions they are making to help their children."

One can't look too far down the road with Down syndrome, she said. Despite commonalities, each child is different in capability and challenges. "I think too often we put emphasis on the future self and don't validate right now — and I think Down syndrome has a way of pushing back on that. Since we don't know what this means for our future, I am constantly trying to live in the present," said Stephanie.

Right now, that feels "pretty wonderful," she said. "He's the easiest baby I've had. He hardly cries. I guess that's fairly typical of kids with Down syndrome as long as they're fairly healthy. … You put him down, he falls asleep. You pick him up, he smiles."

Milo doesn't have heart anomalies that up to half of children with Down syndrome do. He's been screened for hearing loss, common with Down syndrome and so far, his hearing's fine. If undetected, that could exacerbate cognitive processing issues. Children with Down syndrome are vulnerable to many things: sleep apnea, ear infections, vision problems and to a lesser extent issues like thyroid disease or hip dislocation, according to the Centers for Disease Control and Prevention. They are also far more likely than other children to have leukemia by age 5. Early dementia is typical with Down syndrome, but average lifespan is increasing. In 1983, people with Down syndrome seldom lived past 25; now they live into their 60s. Watching for problems and intervening early has changed lives.

Milo and other children with Down syndrome grow more slowly, but at their own pace. They are developmentally delayed and intellectually challenged to different degrees.

People with Down syndrome should not be underestimated, according to research led by Dr. Brian Skotko, director of the Down Syndrome Program at Massachusetts General Hospital in Boston, where researchers examined milestones in 2,600 affected families in the United States and the Netherlands.

Stephanie Benton laughs with her son, Milo, as they play before his afternoon nap at their Salt Lake City home on Tuesday, March 12, 2019. Stephanie and her husband, Adam, did not know Milo had Down syndrome until he was a couple of hours old. Now they're figuring out what that will mean.

Steve Griffin, Deseret News

Stephanie Benton laughs with her son, Milo, as they play before his afternoon nap at their Salt Lake City home on Tuesday, March 12, 2019. Stephanie and her husband, Adam, did not know Milo had Down syndrome until he was a couple of hours old. Now they're figuring out what that will mean.

"Contrary to some public beliefs, people with Down syndrome never stop learning, and functional skills can still be attained and improved well into adulthood," he said in a news release.

The study found people with Down syndrome walk by 25 months, speak "reasonably well" by age 13 and take care of their own hygiene by 13 years. By age 20, they can "work independently." Half read "reasonably well" by 31 years, just slightly fewer write pretty well and more than a third lived on their own by that age, while a slightly smaller number could travel alone. The report was recently published in American Journal of Medical Genetics Part A.

Still, some with Down syndrome are more challenged than others. "Mikey" Craynor's level of disability is severe and is coupled with sensory processing issues. Now 16, the Salt Lake teen cannot speak, but communicates fairly well through actions and use of picture cards. Mikey is in diapers, though Cody and Emily Craynor continue to work on potty training.

To meet his needs, the Craynors have learned and modified and learned some more, said his mother, Emily Craynor. When they shop, for instance, Mikey's in a large stroller because he's prone to trying to run off. Parents must adapt to meet the needs of the child.

Emily and Cody Craynor pose for a selfie with their kids, Caylee, 6, Mikey, 16, and McKenzie, 12.

Cody Craynor

Emily and Cody Craynor pose for a selfie with their kids, Caylee, 6, Mikey, 16, and McKenzie, 12.

His is not a sad life, Emily Craynor said. "He's social and loves to be around people. And people just love him. He has a talent for making other people love him."

Mikey's mom describes joyful moments playing with is best pal Bozzly, his Shih Tzu dog. His mom loves watching him thrill to leaves buffeted by wind in trees. "That makes him really happy and he'll laugh. It kind of shifts the way you think about everything."

Legislative mandates

Down syndrome has been in the news in part because several states have considered or passed legislation to keep people from getting an abortion solely because prenatal testing indicates a baby could have Down syndrome.

The Utah Legislature just joined other states approving such a measure, which is awaiting Gov. Gary Herbert's decision on whether to sign it. The bill would delay enactment until a court rules on whether similar laws in other states are legal, to prevent costly litigation.

Proponents of such laws point to Iceland and Denmark to show why they think protection is needed. In those countries, pregnancy is terminated in about 98 percent of cases if testing indicates a child might have Down syndrome, although that's just among pregnancies where genetic screening is done. In the United States, about 68 percent of women who learn through genetic testing that their fetus has Down syndrome terminate the pregnancy.

The pro-life Charlotte Lozier Institute outlines the state of legislation around the United States. Ohio and Indiana both have cases winding through the courts, challenging laws that prohibit an abortion sought solely because the child has Down syndrome. In North Dakota, the law prohibits abortion solely for a genetic abnormality. A law in Louisiana, now being challenged, prohibits abortion after 20 weeks if desired "solely because the unborn child has been diagnosed with either a genetic abnormality or a potential for a genetic abnormality."

Several other states have introduced bills, but the institute suggest legislatures are watching to see what the courts do with challenges to the Ohio, Louisiana and Indiana laws.

Making life better

No one knows more about changes that could make life better for those with Down syndrome than those deeply affected by the condition.

"Several things would help," said Adrian Forsythe, an advocacy programs specialist with the National Down Syndrome Society, who describes himself as a motivational speaker and an advocate for equality. "One is competitive and inclusive employment opportunities, for people with Down syndrome find it hard to find employment, especially when out of school."

Adrian Forsythe of the National Down Syndrome Society says employment, education and marriage are big challenges.

NDSS.org

Adrian Forsythe of the National Down Syndrome Society says employment, education and marriage are big challenges.

He should know. Forsythe, 30, has Down syndrome and spent more than a year "doing nothing" because he couldn't find a job. He believes many potential employers decided what they thought he could — or couldn't — do, rather than giving him a chance. And "when people do have jobs, they get held back because of stereotypes," he said. People "assume we can only do factory work."

Forsythe longs to see more opportunity for education. He attended college through a program at George Mason University that enrolled what he calls "advocates" for those with disabilities. He studied acting, communications and women's studies.

Medicaid often covers cost of medical care for individuals with Down syndrome, he said. While it cares for challenges like the common heart problems, it also inadvertently breaks hearts: Sometimes, he said, people with Down syndrome forego marriage because couples may earn too much to qualify for Medicaid but don't have the kind of jobs that let them afford insurance.

A huge challenge for the Craynors — for anyone with an adult-size person who wears diapers — is finding a private place to change them away from home. Emily Craynor said England has full-size changing tables, but American stores and restaurants have baby-sized tables.

“I didn’t realize that I was sort of already in this community before I knew I needed it.”

Stephanie Benton

They recently started to receive respite services from the Utah Division of Services for People with Disabilities, which has made a huge difference. They were on a waiting list for years and know other families desperate for help are still waiting.

"It's life-changing to receive services," said Emily Craynor. "When you have a child that big, who wears diapers and can't speak, it's not easy to call the girl down the street to come baby-sit."

Help already in place

Stephanie Benton said it feels in some ways like their universe was being prepared for Milo. It was on World Down Syndrome Day 2018 that she learned she was pregnant. This year, they enrolled their oldest son, Wade, in a new school where they've gotten to know a couple of families with children with Down syndrome.

"I didn't realize that I was sort of already in this community before I knew I needed it," she said.

Wade has friends with Down syndrome, as a result. He doesn't see them as different.

Stephanie likes how Milo was treated at the hospital. "It was really beautiful," she said. Expectations were erased, and the attitude was, "Just let him do what he's going to do. Just let him be the person he's going to become, no strings attached." Nothing was rushed as hospital staff made sure Milo was in shape to go home thriving, said Stephanie. "It was a really compassionate way to start out with him."

A tender moment with Emily Craynor and her son Mikey, who is 16. He has Down syndrome and is mostly nonverbal.

Cody Craynor

A tender moment with Emily Craynor and her son Mikey, who is 16. He has Down syndrome and is mostly nonverbal.

Her mom arrived to help Stephanie and Adam with the baby the day before Milo was born. While she was there, her husband called to tell her The Church of Jesus Christ of Latter-day Saints was calling them as service mission leader coordinators in Ohio, where they live. They will help people with special needs, like their newest grandson, Stephanie said.

And the Bentons had picked a different name before Milo was born, but changed it to one that he would be able to pronounce himself, easily. Then they added his middle name: Bond, also a family name on Adam's side.

"Sitting in the hospital about four days after he was born, I realized we've had a family motto for years: The Bentons are bonded in love, service and faith. And I realized Milo is going to bond our family."

She'd felt "angst" over how to keep her family close as the kids grew up, worried about what she called "forces pulling us that threaten family." That concern left with Milo's birth, she said.

"I see Milo at the center of our family, and everybody is going to gravitate toward each other because of him. We really love this guy, and we are taking it one day at a time."