parenting

A Baby Who Keeps Beating the Odds

Parents Talk Back by by Aisha Sultan
by Aisha Sultan
Parents Talk Back | December 3rd, 2018

A queen-sized mattress takes up most of the living room floor. It’s the first thing you see when you walk in the front door. It’s draped with blue sheets and surrounded by the larger furniture on three sides, creating an island in the middle of the room. Plush toys sit next to remotes. Pillows are scattered throughout the space, and medical supplies are stacked on the sides of the mattress.

Kyle, 37, and Indy Walsh, 39, have lived out of this room for the past year. Their 4-year-old son, Kyler, has a brand-new nursery in their three-bedroom ranch house in St. Charles.

It’s never been used.

Indy had noticed seizures when Kyler was 3 or 4 months old. When he was 6 months old, doctors diagnosed him with a rare genetic disorder called FOXG1 syndrome, in which a genetic mutation causes brain abnormalities and severely impairs development. Kyler is nonverbal, unable to lift his head or support his own weight, and likely has the cognitive function of a 6-month-old. He is fed through a gastrostomy tube and requires 24-hour care. He has spent months in the hospital, since even a cold can turn life-threatening for him. About 260 people have this mutation worldwide.

One of his parents sleeps on the mattress on the floor with him every night. He used to sleep in the bed with one of them, until they worried he might roll over and fall off. On this icy night in November, it’s his grandmother, Cindy Ryon, staying with him on the mattress, waiting for his parents to return from the hospital.

Indy was shocked to learn in April that she had gotten pregnant again. She has a variation of the gene mutation that affects her ability to carry a baby to term. She had three miscarriages before Kyler was born, and two miscarriages after him.

Her oldest child, 17-year-old Ashlynn, has a different form of the genetic mutation that doesn’t cause the syndrome her brother has. When Ashlynn heard about her mother’s pregnancy, her first thought was, “Oh gosh, we’re gonna be under stress again that I’m going to have to deal with.”

The family operates under high levels of stress. Indy was fired from her job as a manager at Walmart after Kyler was diagnosed. Kyle runs his own painting business with his brother. They don’t qualify for state aid for Kyler’s medical expenses, so they are constantly juggling bills and negotiating with insurance companies. Once, the electricity was cut off during one of his extended hospital stays.

Indy, whose days and nights are spent caring for her severely disabled son, was on pins and needles during her pregnancy, wondering if their next baby would have the same mutation. Ashlynn and Kyler share the same October birth date, but Kameron wasn’t due until Dec. 9.

Then at 33 weeks, she went into preterm labor. The doctors stopped the labor, kept her in the hospital for four days and sent her home on bed rest. The next day, Indy started bleeding. She called her husband and said he needed to come home right away.

Painful contractions hit every two to three minutes during the car ride to the hospital. She was bleeding profusely. Doctors discovered her placenta was breaking away from uterine wall. She was hemorrhaging, and too unstable to transfer to a larger, better-equipped facility in St. Louis.

An ambulance whisked Kameron to St. Louis Children’s Hospital soon after he was born. He would spend 23 days in the neonatal intensive care unit while his parents waited for the results of the medical tests. It was too risky to bring Kyler to the hospital to meet his new brother.

Tonight, the Walshes were going to bring their baby home, and the brothers would meet.

Kyle laid Kameron down next to Kyler. Ashlynn stayed on the top of the mattress, above the 6-pound infant in a fuzzy bodysuit covered with blue and gray snowflakes.

“Look at him. Look at him, babe,” Kyle said to his wife. “He’s talking to him.” Indy was busy unpacking newborn diapers the size of an adult hand. “That can all wait,” her husband said. “You should watch this.”

The brothers lay face-to-face on the mattress. Kyler gurgled and made eye contact with the baby for a brief moment.

Kyle recorded a video on his phone.

Indy started talking to her older son.

“Who is that, Kyler? Is that your little baby brother? Mommy’s been telling you about him.”

She reached over to put lip balm on Kyler’s dry lips.

They are hoping the new baby will help Kyler learn and develop.

Kameron’s test results were clear. He didn’t share either genetic mutation that his siblings have.

He does, however, share one thing with Ashlynn and Kyler: the same Oct. 23 birthday.

Health & SafetyFamily & Parenting
parenting

Better Ways to Teach Empathy

Parents Talk Back by by Aisha Sultan
by Aisha Sultan
Parents Talk Back | November 26th, 2018

We teach young children to consider the feelings of others in the hopes that they will grow to become empathetic adults. And yet, the glaring absence of empathy among adults is on display every day in news reports and social media feeds.

Psychological research has documented a dramatic decline in self-reported empathy over the past three decades. Researchers suggest this growing empathy deficit may be fueled by several factors, including chronic stress and isolation by social class.

When I think about the experiences that have helped me break down my assumptions and increase my capacity for understanding, I wonder if we have been teaching empathy all wrong. Often, we tell children how another person might feel or react in a given situation, but the most powerful lessons come from listening, witnessing and doing. Perhaps we have to let children experience more of what we want to protect them from. Perhaps those experiences are what make them stronger and kinder.

These are the experiences that have most impacted my ability to empathize:

1. Spending time in a place that unsettled me. As a young reporter, I spent two months in a summer school session observing a gifted teacher trying to help remedial elementary school students learn how to read. The students lived in one of the poorest, most crime-ridden neighborhoods in our metro area. Those months completely changed the way I thought about poverty in this country. It’s one thing to read about extreme poverty in America; it’s another to witness it for longer than a short visit. I’ve often wondered what would happen if every middle class and wealthy American had to spend a few weeks in the same environment as a child born into extreme poverty. How would this change our policy debates?

2. Listening to stories. I’ve met refugee families from all parts of the world. Listening to their stories of the lives they left behind and how they got here made debates about immigration more personal and real.

3. Teaching. It wasn’t until I spent an entire day teaching middle-schoolers that I truly appreciated how difficult that job is. I’m having the same perspective-changing experience by teaching writing to college freshman this semester. I have always admired teachers, but until I experienced their challenges firsthand, I didn’t really know what a toll it takes.

4. Witnessing grief. The hardest days of my job have been when I’ve talked to parents who had lost their children to accidents, illness or criminal acts. I have cried with anguished parents. Hearing and holding another person’s grief teaches you about loss, which teaches you about how to live.

5. Holding a hand. A friend called me after she had been violently raped. I drove her to a hospital, saw her bruises and held her hand. Sometimes all you can do for someone shattered by trauma is to show up -- repeatedly, consistently.

6. Traveling to less developed parts of the world. Before I could afford to travel, I read books that took me into other people’s lives and places. Literature has been shown to increase our empathy.

7. Experiencing profound loss. When you have firsthand experience of what it’s like to lose something precious -- a loved one, a desperately wanted pregnancy, your health, your home -- it inevitably changes you. The people I most admire find a way to channel that pain into compassion. I’ve tried to follow their example.

8. Making it personal. Even when you know something intellectually -- such as the fact that it’s incredibly difficult to leave an abusive relationship -- hearing it from a person who has lived through it adds texture and dimension to your understanding. That’s how I’ve felt when I’ve listened to the experiences of very successful women who stayed in abusive relationships until they were able to get out. Or loved someone brilliant who struggles with addiction. It’s harder to judge when you know people who have walked through the fire.

The more we can do to help ourselves -- and our children -- become more compassionate, aware and thoughtful, the better the world we can create.

Mental HealthDeathFamily & Parenting
parenting

Civility Over the Holidays

Parents Talk Back by by Aisha Sultan
by Aisha Sultan
Parents Talk Back | November 19th, 2018

Over the past two years, many politically split families have perfected the art of avoidance.

“It’s not worth it,” one woman said. “I don’t hide how I feel, but I don’t openly engage.”

The political divisions that separated Americans two years ago -- some hitting deep within their close, personal relationships -- are still open wounds. In some ways, they’ve gotten worse.

People have largely shed or stepped away from friendships that became strained after the election, but family is trickier. The holidays are a time when many feel obligated to get together with family members with whom they disagree, while trying to avoid confrontation at all costs.

A 2017 Pew Research Center study found that partisan identification has become the biggest wedge between Americans -- more so than race, gender, religion or level of education. A deep political difference reflects more than just a voting preference, the study found. In the minds of many, it reflects your character.

It’s sharpened the tension between who we love and what they believe. So, how best to navigate this?

James Croft, outreach director for the Ethical Society in St. Louis, offers a talk entitled “How and When to Be Civil” that tackles these thorny questions: What’s the difference between being civil and being nice? Is it ethical to uninvite people to Thanksgiving or family gatherings because they have offensive viewpoints? How is the traditional definition of civility used to quiet dissent?

Croft argues that if someone says something derogatory at the dinner table, it would be uncivil and unethical not to strongly challenge that point of view. His ideas might seem counterintuitive to the “be nice” and “avoid conflict” mindset of the Midwest.

“People don’t want to address challenging topics because some kind of tension will be introduced into the relationship, and they are nervous about that,” he said. But “civility is richer and more complex than just being nice.”

Don’t stay silent in the name of harmony.

If a person is unwilling to ignore uncivil views and comments from people they care about, then what is the most effective way to actually have a productive conversation about it?

“People only have their minds open if they feel valued and respected, and not when they are under threat,” he said. I asked him to address a specific scenario: Say a relative makes a racist, homophobic or otherwise bigoted remark. What is an ethical way to respond?

You should first determine whether the person is reachable at all. Some people are unreachable -- they cannot be persuaded by any evidence or logic, and it’s best not to engage with them at all.

But others may be open to the possibility of making a connection.

Croft suggests saying something like: “Grandpa, I love you very much. You are extremely important to me. I don’t agree with what you just said. Would you be willing to hear why I don’t agree?”

It’s important to be able to listen, to hear people’s anxieties and their explanations of what they believe, he said. If you truly want to influence the way a person thinks about an issue, they have to feel heard. For example, consider a divisive and emotional issue like the migrant caravan in Mexico. Croft suggests starting with questions like, “Why do you think they’re coming here?” “What are you worried might happen?” “What have you seen to make you believe that?”

If the person says they fear crime, it can be helpful to agree that you also don’t want crimes to happen, and point out that many crimes are committed by Americans. So, why do they think immigrants would be more likely to commit a crime?

“It requires listening and staying with them, showing that you are on the same team -- not because you agree with them, but because you care about them,” he said. It can be helpful to cite sources who have more credibility with your family members because they share the same belief system, but have spoken out on a particular issue in a way that you can support.

He added that a person from a marginalized community does not have a responsibility to engage with someone saying something harmful. And, it’s also perfectly acceptable to skip the trip home if the experience would be traumatic, and your relatives are not capable of engaging with you in a respectful exchange.

His family found themselves facing a difficult decision recently after his father died. There is a strong difference of opinion between his mother and her sisters. His family decided the potential for tremendous stress was too great, and did not inform his mother’s sisters about the funeral.

“That’s OK,” he said. The true meaning of civility, Croft said, is making sure everyone in society has a place at the table and is treated with respect.

Holidays & CelebrationsEtiquette & EthicsFamily & Parenting

Next up: More trusted advice from...

  • Last Word in Astrology for March 29, 2023
  • Last Word in Astrology for March 28, 2023
  • Last Word in Astrology for March 27, 2023
  • Good Things Come in Slow-Cooked Packages
  • Pucker Up With a Zesty Lemon Bar
  • An Untraditional Bread
  • Ask Natalie: Coming back to your pre-QANON reality? Your ex said he was polyamorous... but was really just a cheater?
  • Ask Natalie: How do you handle a grieving friend that never wants to have fun anymore?
  • Ask Natalie: Sister stuck in abusive relationship and your parents won’t help her?
UExpressLifeParentingHomePetsHealthAstrologyOdditiesA-Z
AboutContactSubmissionsTerms of ServicePrivacy Policy
©2023 Andrews McMeel Universal