parenting

What It's Like to Hear Again

Parents Talk Back by by Aisha Sultan
by Aisha Sultan
Parents Talk Back | December 19th, 2016

Water makes sound.

It crashes, it swishes, it drips, it cascades, it pours.

Amanda Eshelman, a typical 13-year-old in many ways, had had no idea.

The first time she flushed the toilet after getting a hearing aid in her right ear a year ago, she jumped back, startled by the sound. The hearing aid brought back sounds that had been getting softer for years.

She was deaf in her left ear. She had been born with some hearing in that ear, maybe enough to hear a lawnmower right next to her, but it gradually faded away almost a decade ago. Her right ear started deteriorating when she started middle school two years ago.

Amanda, a bubbly teenager, found ways to cope with the gradual hearing loss. She sat in the front in her classrooms. She asked her friends to repeat themselves often. She focused on watching people's mouths when they talked, so she could read their lips.

When she got a hearing aid in seventh grade, she picked a hot pink one. Suddenly, it was like everyone was talking into a microphone. She could hear the dishwasher, the water when she turned the shower on and that crazy sound the toilet made when it flushes.

It was easier for Amanda to hear her teachers at school, but she still couldn't understand anyone when there was a crowd, like in the cafeteria or in the hallways. She couldn't tell where sounds were coming from, either. And every few months, the sounds became fainter. The hearing aid had to be cranked up as her hearing declined.

Her mother, Betsy, worried about what would happen if the hearing in Amanda's right ear kept worsening. Would her child's world become completely silent?

Amanda had already started preparing for that. She joined a club at school to learn sign language, and taught herself even more by watching YouTube videos of popular songs being signed. She, her twin sister and three friends performed Fall Out Boy's "My Songs Know What You Did in the Dark" in sign language for the talent show.

Looking for options, her parents took her to see a specialist at St. Louis Children's Hospital, who suggested she might be a candidate for a cochlear implant, which can restore hearing in a different way than a hearing aid. It requires surgery to implant an electrode inside the inner ear, which attaches magnetically to a sound processor worn outside the head.

But there was a risk the implant wouldn't improve Amanda's hearing at all because her left ear had been "dead" for so long.

"It's your choice," her father said.

In typical Amanda fashion, she wanted to go for it.

"What else am I supposed to do?" she said. "Sit in my room and cry all day? I can't do that."

In mid-November, she had surgery to get the Cochlear company's newest implant and sound processor, called Kanso. Two weeks later was activation day, when audiologist Amy Carlson would turn the system on to see how much sound her auditory nerve and brain could pick up. Whereas people with normal hearing hear sounds acoustically, the implant transmits electronic pulses, which can be difficult to adjust to for patients who have had hearing before.

Amanda had picked out a hot pink cover for the sound processor that magnetically attaches to her head.

"Are you sure you want pink?" her father had asked. She was very sure.

I spoke with Amanda prior to activation, and asked what she might want to hear if it worked.

She thought about the question and remembered a pair of socks she wears on Christmas Day. They have little bells on them, and her mom can hear her wherever she walks around the house.

"I can't hear the jingle bells," she said. "I don't remember ever hearing it."

When she walked into the hospital room where Carlson would turn on the device, Amanda was nervous and excited.

While the audiologist began the testing, Betsy's gaze, full of worries and hopes, was fixed on her child's face. She remembered holding Amanda in her lap during hearing tests as a young child. Betsy could hear the beeps through the headphones her daughter wore for those tests, but Amanda wouldn't respond. She had wanted to poke her daughter to get to raise her hand and show she could hear. But she couldn't.

This time, it was different.

Carlson turned it on.

Amanda's hands flew to her mouth. Her laugh mixed with her tears, which mixed with her mother's laughter and tears.

"Hi, baby," her mother said, grabbing her in a tight embrace.

"I like it," Amanda said, through her tears. "It's a lot better than I thought it was going to be."

She heard the sounds of the fan and the heating system in the room; even the overhead lights made a slight buzzing sound. Her own voice sounded so strange to her. Carlson explained that there was a long road ahead of gradually increasing the sound levels, and retraining the brain to focus on new sounds and block out background noises.

Amanda could hardly wait to start. The next week, she was sitting in the living room, surrounded by her siblings with the television on, like she had on countless afternoons before. There was so much sound all around her. She turned to her mom and said, "I didn't realize how quiet my world had become."

It had hit her when she walked inside their home after the activation. Their cat, Geno, was waiting by the front door.

He was purring. That's what purring sounds like, she thought. It was louder than she expected.

When he ran off, she heard another new sound.

He had a bell on his collar.

"I could hear it," she said.

A jingle bell.

Physical Health
parenting

'Winning' the Empathy Game

Parents Talk Back by by Aisha Sultan
by Aisha Sultan
Parents Talk Back | December 12th, 2016

When I coerced my family into playing a new card game designed to nurture our empathy, the first question was: How do you win?

"Oh my God, it's not that kind of game," I said.

We're a competitive bunch. Let's just say I've been uninvited from some family game nights due to unsportsmanlike behavior involving a Taboo buzzer. Also, there may have been loud allegations of cheating leveled against certain children based on flimsy circumstantial evidence.

Never mind that. This PeaceMakers game, developed by Suzanne Tucker, a St. Louis mom and parent educator, was bound to increase our compassion and peacefulness toward one another. Who couldn't use a little more of that in their families, especially this time of year?

I was a little skeptical when the game arrived. It's a colorful deck of 42 cards, with a cute animal illustration and a mantra printed on each one. Granted, the target age group for the game is 3 to 9 years old. I was going to try this exercise with a 14-year-old girl who believes in her heart that she is unspeakably cooler than anyone in her family, and an 11-year-old boy who would rather be playing baseball or video games than indulging my empathy-building projects. Oh, and a spouse who likes to win family game nights nearly as much as I do.

The cutesy deck seemed stacked against us.

There are no specific rules, according to Tucker. Everyone takes a turn drawing a card, reading it aloud and then saying something about what they've read. You can relate it to an experience you've had recently, a thought or desire, or even sing, dance or draw in response.

It's less a game, and more a reflection time.

My son drew a card that said, "I stick with things and get things done." He mentioned a school assignment that had taken some time, and we agreed this card described him well.

I drew a card that said, "I am a leader." I added: "Yes, I am a leader in trying to get this family to do things even though no one really listens to me." That probably wasn't in the "positive affirmation" spirit, but Tucker had told me there was no "wrong" way to play.

The girl drew a card that said, "My mistakes help me learn and grow." She said she had nothing to say about that. In fact, she could not think of a single thing to offer in response.

"Just say something," I said, through gritted teeth.

"Fine! You don't have to get so mad!" she responded. She conceded that she may have made some mistakes before, though obviously not as many as the rest of us.

It was my husband's turn, and his card said to sing a song, an instruction he wholeheartedly embraced as he began to serenade us. My son and I cracked up laughing, and my daughter bolted.

"Oh my God, I'm outta here," she said on her way out.

We played a few more rounds, and I have to admit that it was fun and sweet to have a few minutes to say positive things out loud to one another.

Tucker says families can take five minutes to pull a card at breakfast before kids head to school, or perhaps at bedtime to create a moment of calm and sharing. It's a mindful way to bring focus and set an intention.

She launched her idea for PeaceMakers via Kickstarter in March and doubled her fundraising goal within three weeks, raising $7,000. She's shipped boxes all over the world, to more than 20 countries, and is working to get the game into various school districts. Her goal is to help children learn to self-regulate their emotions, and ultimately to see an end to shame, blame and pain in children.

Helping children (and adults) learn to identify their emotions is a critical part of that process.

"Name it to tame it," she said. "Feel it to heal it."

Studies shows that emotionally intelligent people are more successful in life, and high EQ can be more valuable than raw intelligence and experience. Decades of research suggests emotional intelligence is a critical factor that distinguishes successful leaders and star performers in the workplace.

Beyond the skill-building aspect of this game, I enjoyed the experience of just joking around with and listening to the people I cherish.

My husband agreed, although he added, "If that game had a winner, I would have totally won."

Embodying the spirit of the game, I'm willing to say, sure, honey.

You totally won.

Family & ParentingSchool-Age
parenting

Young Hockey Players Face Biggest Challenge Off the Ice

Parents Talk Back by by Aisha Sultan
by Aisha Sultan
Parents Talk Back | December 5th, 2016

Brandon Swenson was 7 years old when he started noticing bruises all over his body. And he had been feeling so tired.

His parents wondered if someone was bullying him at school.

When his pediatrician ran blood tests, he sent them straight to St. Louis Children's Hospital. His white blood cell count was dangerously low. Within hours, doctors started Brandon on chemotherapy.

His parents were told their son had leukemia and would need 2 1/2 years of treatment.

"To go from everything's fine ... to 2 1/2 years of chemo. We were like, 'What?'" recalled his father, Chris Swenson, of Lake Saint Louis, Missouri.

The news spread quickly, particularly among members of Brandon's hockey club, the St. Peters Spirit.

When Kim Dannegger, whose son also played with the St. Peters Spirit, heard about Brandon, she remembers thinking how sad it was. Her son, Jack, was active and healthy, and had perfect attendance the year before in second grade.

A few months later, Jack got a cough. A low-grade fever followed. His mother worried he might be coming down with strep throat.

She took him to the pediatrician, who saw Jack's swollen belly and slightly jaundiced skin and sent them straight to the emergency room.

She had called her husband, who was on a business trip in Kansas City, to come home early. When the doctors reviewed Jack's blood tests, they told her she needed to get her husband on the phone immediately.

"Jack has leukemia," the pediatric oncologist said.

"I don't remember anything after that," Dannegger said.

Jack figured it had to be something bad, because he could hear his father crying on the phone from across the room.

Both Brandon and Jack were given a promising prognosis. A full recovery was likely, but the next 2 1/2 years of treatment would be brutal. And so it began: days, weeks and months in and out of hospitals. Intense chemotherapy, surgeries and painful procedures.

Sometimes, even very brave children surprise us with how they handle adversity.

Brandon's father says he never once heard his son complain. Before Brandon had a central IV line, or port, put in his chest, the nurses had to stick him repeatedly for blood samples. One night, he had to have his blood drawn nearly a dozen times, his father remembered.

"They'd wake him up, and they'd have two people (ready) to hold him down," he said. But they never needed to restrain him. Brandon would put his arm out each time. "By the eighth, ninth and 10th time, he'd wince, but he'd put his arm out," his father said.

Still an avid hockey fan, Brandon kept his sticks with him in the hospital room. He named his IV stand Chris Mason after his favorite goalie, and put a bearded face on it. He wrote in an online journal that he wanted to persuade the nurses to let him put a Blues jersey over the stand.

Jack went through 10 rounds of cranial radiation and faced 111 straight weeks of chemo. Two of the friends he made during his treatment died.

"But they don't have what I have, right?" he asked his mother. She reassured him that he would get better. She kept her own fears buried.

"That first month, all you can do is get on your knees," she said.

The boys began responding to treatments, and when hockey season started, they wanted to play again. The ports that delivered the medicines to their bodies each week were protected behind chest pads. They would show up to practices after chemo, and the coaches would tell them to skate to the bench if they got too tired. But they rarely did.

It was a chance to play.

This year, they both ended up on the same team. When the coach's wife, who is also the team manager, found out Brandon, now 9, and Jack, 10, were finishing up 2 1/2 years of chemo, she wanted the club to recognize the battle they had been fighting off the ice. Parents and friends pledged that for each goal scored this season, money would go to Friends of Kids With Cancer. They wore orange, the color that symbolizes leukemia, and kicked off fundraising with orange balloons. Other teams heard about the boys and asked to contribute.

The week after Brandon's last chemo treatment, and just before Jack's last one, their young teammates staged a surprise before practice. When the boys skated into the rink, they were greeted by a semicircle of about 70 young hockey players down on one knee.

In youth hockey, when a player gets hurt, the others players on the ice take a knee in a show of support. When the injured player returns, they tap the ice with their sticks.

Brandon and Jack seemed confused by the sight: rows of children, all their regular laces replaced with orange ones, banging orange-taped hockey sticks on the ice.

The boys skated to their team bench, and their fathers walked onto the ice and led them to the center of the rink.

Every parent in the stands stood to cheer.

Health & SafetyFamily & Parenting

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