Journalist Soledad O'brien Helps Her Hearing-Impaired Son Advocate for Himself

FEBRUARY/MARCH 2018 BY ROBERT FIRPO-CAPPIELLO Journalist Soledad O’Brien Helps Her Hearing-Impaired Son Advocate for Himself O'Brien has made a career of tuning in to the stories of those in need. As the mother of a hearing-impaired child, she does the same at home.

During her years as a broadcast journalist, Soledad O'Brien has never backed down from challenges or controversy. As the host of Matter of Fact with Soledad O'Brien, a syndicated news show owned by Hearst Television, O'Brien has covered everything from the high rate of suicide among veterans to the hurricane relief and recovery efforts in Puerto Rico.

And while she's proud of her mixed heritage—her Australian father is of Irish and Scottish descent and her mother is from Havana, Cuba, of Afro-Cuban descent— she knows what it's like to be different. "Growing up in the only Afro-Cuban family in my town on Long Island may have given me some appreciation for outsiders, for people who look and speak differently," she says.

Her skills as a reporter—her tenacity, determination, and compassion—and her experience as an outsider served Soledad O'Brien helps her hearing-impaired son her well when her son Jackson began exhibiting Jackson advocate for himself. COURTESY troubling behavior as a toddler. "When he was about 2, SOLEDAD O'BRIEN he would slam his head against the wall until he had bruises, sometimes cuts. Ordinarily he was a very sweet kid, but then he would have meltdowns unlike any we'd seen. He'd be rolling on the ﬂoor screaming. And not just one meltdown, but sometimes 20 in a row."

A visit to Jackson's pediatrician was not enlightening. "The doctor said Jackson was healthy in every other way. He suggested getting a helmet to protect Jackson from his head-pounding and meltdowns," O'Brien recalls. Assuming it was a behavioral problem, the family would simply ask him to stop. "He always obeyed," says O'Brien. "He was such a sweet, obedient child. We never suspected something else was going on."

School Allies Once he entered elementary school, Jackson's behavior could alienate him from other students, and he often seemed bafﬂed by the way they behaved. "If he was playing a game with a classmate, he might not pick up on the cues around him that game time was over, and he wouldn't understand why his classmate just walked away," says O'Brien.

Then, during the first week of first grade, his teacher asked the class to write a true story. When Jackson wrote about aliens landing at his house the night before, the class laughed, and he was mortified. But the teacher, who suspected he misunderstood because he didn't hear the instructions, recommended a routine hearing test.

Test Scores A hearing test at a pediatrician's office confirmed the teacher's suspicion. Jackson's hearing level was significantly lower than that of his classmates.

A follow-up test with an audiologist, involving a wider and more sophisticated variety of tone frequencies and levels than a standard screening, revealed that Jackson had lost about 80 percent of his hearing. He was subsequently diagnosed with sensori-neural hearing loss, a neurologic condition in which the tiny ﬁbers of the cochlea, or inner ear, can't properly translate sound waves into nerve signals from the auditory nerve to the brain.

Mued Sounds For Jackson, all sounds are muted, but higher frequency sounds like women's and children's voices and consonants such as "s" and "f" would be even harder to hear, says Anu Sharma, PhD, professor of speech, language, and hearing sciences at the University of Colorado at Boulder. Jackson's meltdowns were also not unusual. A 2013 study published in The Journal of Deaf Studies and Deaf Education demonstrated a link between hearing loss and behavioral problems, especially for hearing-impaired children of parents with normal hearing.

"In hindsight, of course we wish we'd realized that Jackson was experiencing hearing loss. But one-on-one his hearing seemed normal, and we really thought the problem was behavioral," O'Brien recalls. Possible Causes Sensorineural hearing loss can be caused by ear infections, injury, age, Meniere's disease, loud noises, trauma, infectious diseases, surgery, tumors, or genetic factors. Part of Jackson's diagnosis included genetic testing, which showed that he carried a gene for this type of hearing loss.

"Progressive sensorineural hearing loss is most often caused by a dominant gene inherited from one parent, while sensorineural hearing loss at birth, accounting for more than 75 percent of inherited hearing loss, is caused by a recessive gene inherited from both parents," says Timothy Hain, MD, an otoneurologist and professor emeritus of physical therapy and human movement sciences at the Northwestern University Feinberg School of Medicine in Chicago.

Counterintuitively, Dr. Hain notes, when a child inherits hearing loss, both parents often have normal hearing. In Jackson's case, both of his parents and even his fraternal twin brother have normal hearing.

Compensating Strategies Although Jackson's hearing was tested at birth and was deemed typical, it is common for hearing loss to occur between birth and elementary school. And children can be quite good at hiding the problem, says Robert W. Baloh, MD, FAAN, professor of neuro-otology at the David Geffen School of Medicine at UCLA. "They assume it's normal because they haven't known any other way of hearing. Sometimes it takes an outsider to notice it." For O'Brien, the diagnosis was a relief. "We realized his acting out had been due to frustration. He was exhausted by the everyday challenge of trying to ﬁgure out what people were saying, trying to read their lips, missing out on so much that was going on around him."

Overcoming Deﬁcits Hearing loss in early childhood poses real risks to a child's development, including learning to speak, acquiring social skills, controlling impulses, and building self- esteem. "Jackson did learn to speak before experiencing serious hearing loss, but he deﬁnitely faced challenges with impulse control and socializing," O'Brien recalls.

Early intervention is essential. In Jackson's case, he was ﬁtted with bilateral hearing aids at age 7 and immediately experienced an improvement in hearing. He also felt a sense of relief from no longer struggling to understand what his teachers and others were trying to say to him. "His experience was a bit like traveling in a foreign country where English isn't spoken, where you have to work so hard to ﬁgure things out," O'Brien says. "He felt such a sense of calm once that burden was lifted."

Jackson also started speech-language therapy, and his teachers came up with compensating strategies at school. For instance, O'Brien says, instead of teachers calling on Jackson with a question he's never heard before, they let him know the question in advance, such as, "I'm going to ask you about the plot of the book we read."

Hearing aids make a huge difference for Jackson, but they have not restored his hearing to typical levels. "Even with hearing aids, Jackson was only hearing at about 80 percent of the level of his classmates," O'Brien says. Hearing aids do not restore typical hearing, but simply amplify sounds, Dr. Baloh explains.

That ampliﬁcation can be jarring. In fact, Jackson sometimes takes his hearing aids out in the lunchroom because the voices are too loud and confusing, says O'Brien. Jackson also uses a personal FM hearing system that allows his teachers to communicate with him via earbuds. His teachers also use closed captions when videos are shown in class, which O'Brien believes helps not only Jackson but all the other kids in class, too. During her long career, Soledad O'Brien has been at the anchor desk and in the ﬁeld covering everything from Hurricane Katrina in New Orleans and the earthquake in Haiti to the recent hurricane in Puerto Rico. COURTESY CNN (TOP); STARFISH MEDIA (2)

Jackson's three siblings reinforce these strategies at home by watching movies with closed captions, for example, and being sensitive to how his challenges can affect his mood. "We've learned that he sometimes lacks the context that we take for granted," O'Brien says. "If, for instance, the family is discussing going out to dinner, it may take Jackson a bit longer to understand what we're talking about or that we're leaving the house."

A Progressive Disorder Sensorineural hearing loss can be progressive. In Jackson's case, his hearing has declined steadily since his initial diagnosis. Five years later, his hearing loss is at 95 percent, and he is nearing the point at which his hearing aids will no longer help. When he was diagnosed, Jackson told his mother he thought he might be deaf by the time he was 40. In reality, though, the 12-year-old may be deaf in just a few years, says O'Brien.

Jackson is adept at lip reading, which he did naturally in early childhood as his hearing diminished. The family has experimented with sign language and also looked at cochlear implants—small devices that transform sound vibrations into nerve signals—but is holding off for now. "Once he gets the implant, he won't be able to play some of the sports he loves, so we're going to wait," says O'Brien.

At 12, Jackson is a thriving seventh-grader who plays soccer and lacrosse and has a wide circle of friends and teammates. Unlike most of his classmates, however, he also has to remember to wear his hearing aids and carry his personal wireless hearing system. Most challenging of all for an early adolescent, Jackson must have the courage to sometimes say, "I can't hear you," to teachers and classmates.

Giving Back Jackson has already acquired his mom's instinct for activism. When a doctor asked if he'd consider speaking to groups of parents whose children are losing their hearing, he didn't think twice before agreeing. As his proud mother explains, "He talks to parents about his experience, and he makes them think, 'It's going to be okay.'"

More About Sensorineural Hearing Loss

More than 48 million Americans experience some form of hearing loss; sensorineural hearing loss is the most common, according to estimates from the US Centers for Disease Control and Prevention. Sensorineural hearing loss occurs when sound waves are not processed correctly. COURTESY NEW MEXICO STATE UNIVERSITY

Genetic factors; trauma from blunt force or excessive loud noise; viruses and autoimmune diseases; malformations such as tumors and sclerosis, a progressive hardening of tissues that prevents proper sound conduction; aging; and Meniere's disease are all possible causes, says Frank Robert Lin, MD, PhD, assistant professor of otolaryngology and epidemiology at Johns Hopkins School of Medicine in Baltimore.

Genetic Connection A wide array of genetic factors may affect the complex biochemistry of the inner ear. "Children born to couples who both carry a recessive gene for sensorineural hearing loss, such as connexin 26, have a 25 percent chance of hearing loss," says Timothy Hain, MD, an otoneurologist and professor emeritus of physical therapy and human movement sciences at the Northwestern University Feinberg School of Medicine in Chicago. Dr. Hain says a connexin 26 mutation is the most common form of genetic hearing loss, accounting for 49 percent of people with inherited hearing loss.

"Alteration of the structure and function of the connexin 26 protein leads to a disruption of the delicate balance of the hearing mechanism in the cochlea," explains Hela Azaiez, PhD, a research scientist in the department of otolaryngology at the University of Iowa in Iowa City.

"Children born to one parent who carries a dominant gene for sensorineural hearing loss, such as a mutation of the Wolfram syndrome gene, have a 50 percent chance of hearing loss," says Dr. Hain. A rarer genetic mutation expressed in the cochlea, eyes, kidneys, and pancreas, Wolfram syndrome is linked not only to hearing loss but also to diabetes, kidney disorders, and visual impairment, he adds. "Sometimes, inherited deafness is due to a new mutation, in which case neither parent has the responsible gene." Some temporary forms of sensorineural hearing loss, such as those caused by loud noise or head trauma, may be treated with corticosteroids to reduce inﬂammation, says Dr. Lin. But the most common form is irreversible and must be compensated for with hearing aids or cochlear implants.

In Service To Others Doing good for others, whether it's her own children or her television audience, is a priority for journalist Soledad O'Brien. She has established a foundation called PowHERful that mentors and supports young women from minority backgrounds in their efforts to attend college and enter the corporate world. "I want people to understand what it's like for a young woman walking into an ofﬁce looking different, dressing different, and having to work extra hard to be successful," O'Brien says.

On her syndicated news show Matter of Fact, O'Brien tackles topics that touch lives in some of America's struggling communities. Last fall, she co-hosted a two-hour special on Fox that examined the murders of legendary New York City rappers Tupac Shakur and Biggie Smalls, both of COURTESY POWHERFUL FOUNDATION whom were killed in drive-by shootings. Shakur was murdered in Las Vegas in 1996; Small was shot in Los Angeles in 1997.

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O'Brien is also the chair of the Starﬁsh Media Group, a multi-platform production and distribution company that partners with media companies such as Hearst, Oxygen, and others to produce Matter of Fact, Mysteries and Scandals, and other news and documentary programming. In 2009, she produced Latino in America, a CNN documentary about the vast and varied Latino community in the United States.