Kassie DePaiva is loud and clear about educating others on deafness

By Lisa Iannucci

Actress Kassie DePaiva—“Blair” on the ABC soap One Life to Live—never could have guessed that a storyline from her own show would prove helpful to her own real-life medical drama.   

It’s 1997 and Kassie’s son James Quentin, or J.Q. for short, is born with profound hearing loss that would soon be diagnosed at around age one. . Kassie noticed something wasn’t quite right with her otherwise healthy boy when she observed her friend’s twins- months younger than J.Q.-- paying attention to conversations and babbling. J.Q. wasn’t.

“I had no indication of his hearing loss when he was born,” says DePaiva.-- At the time only 11 states mandated newborn screening, but since then, it’s up to about 39 states. When J.Q. wasn’t doing what the twins were doing, we just dreaded the possibility that it could be his hearing.”        

After an audiologist test confirmed her worst suspicions, the Kassie and her husband were crushed.

“They put high-powered hearing aids and sound on him and he was not responding,” she says.   “I could hear it through the headphones and my heart was breaking.”

Like many parents going through a crisis, Kassie says she had anxiety and fear, but just didn’t want to deal with it at the time.

“In hindsight I can talk about it. B ut at the time, going through it, I didn’t want to deal with it because you just want your child’s ears checked and hope the doctor is going to say there’s wax buildup and it’ll be fine,” says DePaiva. “O nce you know there is a possibility, you have to allow yourself to think the worst and then when it comes to fruition, you’re just disappointed and you have to mourn that loss and feel those feelings and then move forward and do what’s best for him.”

Enter the storyline on One Live to Life. Two years before her son’s diagnosis, Kassie’s husband Jimmy—he plays Max on the show and his TV wife Luna, had twins; one of whom was deaf. A teacher from the Lexington School for the Deaf in New York was brought to the set as a consultant and t he DePaivas became friendly with her.

“When we realized that J.Q. might have issues, we contacted her and she led us to the League for the Hard of Hearing where we received a wealth of information.” 

The League (www.lhh.org) is a premier hearing rehabilitation and human services agency for infants, children and adults,  who are hard of hearing, deaf and deaf-blind, as well as their families.

J.Q. is now 10 and has had two cochlear implants. According to the National Institute on Deafness and other Communication Disorders, a cochlear implant is a small, complex electronic device that can help provide a sense of sound to a person who is profoundly deaf or severely hard-of-hearing. The implant consists of an external portion that sits behind the ear and a second portion that is surgically placed under the skin.

Even with the right resources and the implants, DePaiva knows that coping with J.Q.’s hearing loss is an ongoing adjustment.

“It’s not exactly what you want to hear and there’s definitely obstacles when you find out your child has any type of disability, but you take what you’re handed and make the most of it,” she says. “It was difficult, and it continues to be difficult, but I think when we meet challenges in life, it makes us better people, depending on our choice in how we deal with it.”

“For example, J.Q. was in a cranky mood and got a little angry at me, asking, ‘W hy did you make me have the second cochlear implant? I don’t like it as much as my first one.’ This gave me an opportunity to be a better parent and talk to him about that in a way that was loving and understanding,” she says.

“I don’t pray every night that J.Q.’s hearing is going to be restored; I just pray that we all learn to be tolerant and helpful and understanding. I hope that I can do the best that I can with my son and that he grows up to be a loving, caring individual who can also have compassion for someone else with hearing loss.”

While many parents of special needs children suffer from strained relationships, the DePaivas have not had those kinds of challenges.

“Our marriage was never challenged because of J.Q.’s hearing loss. I t’s challenged over the regular things that people get upset about like ‘could you empty the dishwasher or can you fold the clothes,’ but if anything, [ J.Q.’s hearing loss] brought our marriage closer because we both had the same goal -- to make sure J.Q. had the best opportunities available to him.”

To help support their son, the couple met with deaf adults and attended group therapy sessions for parents of children who needed speech therapy.

“We had an opportunity to talk about what works for us, what works for them, what are the obstacles? .” Later, the couple discussed cochlear implants with various recipients of the technology while making their decision

Today, she gladly shares advice for those who are just receiving this news for the first time.

“If a young couple finds out that they have a child with a hearing loss, I tell them to look at each other and realize that God chose them, that helping their child is their responsibility, and this will bring them even closer.”

In addition to her acting role, DePaiva is also hard at work increasing awareness of the League for the Hard of Hearing, and making Happy Hats . These fun creations are handmade by the soap opera veteran, with 100 percent of the proceeds benefiting the League for the Hard of Hearing.
She also finds the time to record her music, including her latest album, I Want to Love You.

“Music warms my heart and doing things for other people warms my heart,” she says. “Acting is a lot of fun for me, but that is not all that I am. And I really like to do creative things. T he whole reason behind making the happy hats was for me to have a creative outlet , but I was able to turn it into something that could help the League for the Hard of Hearing, which was a really positive place for us.  So, if we can help them out and I can crochet hats and give a little back in return, its fun.”

For more information on Kassie and her hats, visit http://www.kassiedepaiva.com/.  

Lisa Iannucci is a freelance health writer based in upstate New York. She has written several books including Birth Defects (Enslow Publishers) and her current book, Healthy Travel: Don't Travel Without It (Basic Health Publications). She is also the founder of www.youngwidowsandwidowers.com