What a difference a year can make in the life of a child & her family! Ken & Jamie Mulligan, reflect back to all that has happened with their daughter Riana, and share what they have learned each step of the way.
**From our archives. Originally published in our May 2001 newsletter. Riana is now a young adult and her dad, Ken, is one of our Board Members.**
In May of 2000, Riana Mulligan, 7 months old, didn’t quite yet have the hang of sitting up all by herself, and had been recently diagnosed with a profound, bilateral hearing loss. Now 18 months old Riana has grown into a curious and busy toddler-on-the-run.
Step One – “Push as hard as you can to get testing-confirmation of your suspicions. It is really important for your child’s development to confirm or rule out a hearing loss.”
Jamie and Ken recall how visiting Santa when Riana was three months old made them question if their baby daughter could hear. “Riana was mesmerized by the Christmas lights and when we tried to get her attention for the picture with Santa, she didn’t respond to us calling her at all.” Jamie and Ken had noticed that Riana’s cousins, who were the same age as her, were responding to lots of sounds, and Riana wasn’t. But at first they thought, “We’re lucky! Riana sleeps well. She doesn’t cry a lot. We are good parents!”By 5 months the family was sure that Riana had no reaction even to loud sounds and then Jamie said, “Something’s wrong. I know she’s deaf.” Jamie had to find out for sure if Riana had a hearing loss so that Riana’s development wouldn’t be delayed. She feels very fortunate that her family doctor believed her and within a week Riana was seen by an ENT (ear nose and throat doctor). While the ENT didn’t think Riana had a hearing loss, he did refer her for testing at Ken and Jamie’s request. Within a month Riana had an ABR test at Children’s Hospital that confirmed a severe to profound hearing loss.
Step Two – “Make sure the decision you make when you are getting started is the right one for you.”
Ken and Jamie were actually relieved to have their suspicions confirmed. “We came home from Sunny Hill with a stack of paper a mile high! We began looking for a place to get support. We knew we wanted to do speech and sign together right away for Riana so that she could have the best of both worlds. That decision came naturally and we felt very comfortable with it. We chose the BC Family Hearing Resource Program to help us learn how to best help Riana.”
Step Three – “Having an open relationship makes decision making a lot easier.”
Ken says, “We have talked about everything right from the beginning. I want to be very involved in Riana’s life. I share in her daily routines. I spend time with Riana after work and on weekends and Jamie kind of ‘goes on strike.’ This is how we choose to parent and this is what we would do even if Riana wasn’t deaf.
Step Four – “Don’t close any doors.”
Right now Riana is wearing her hearing aids all day every day and is beginning to pick up sounds with her aids on. She babbles all the time, imitates mouth movements, is trying hard to speak and is starting to say some words. She is using about 50 signs and is learning new signs every day. She still is facinated by lights. Her first sign was light! Ken and Jamie have been exploring the option of a cochlear implant for Riana. “For about the first 8 months that Riana was wearing her hearing aids and we were working hard on listening activities, we never saw Riana respond to any sounds. Now she turns to her name, and many sounds around her. She responds to music. We know that a cochlear implant doesn’t work for everyone and right now her aids are working well for her. We have hope that her speech will develop. But if the aids don’t give her the benefit she needs later on, we will pursue a cochlear implant. Whatever is best for Riana is what we want.”
Step Five – “Encourage your whole family to get involved. There is a lot to learn.”
Ken and Jamie share, “Our family has generally been supportive. They all love Riana! We’d like everyone to spend more time with Riana so they could understand everything we do and how hard we have to work all day everyday. We ask them to be involved but we don’t push them.” Jamie says, “My mom was very involved right from the beginning, but in trying to support me she bombarded me! I had to talk to my mom about the fact we are the parents now and we had to feel comfortable with the choices we were making. It was information overload at first and I told my mom to slow down!” Some family members have gone to the Centre’s ‘Relatives’ Night’ which gave them a chance to talk with other people and share how they think and feel. Some relatives go to sign class. Others have chosen not to be as involved and Jamie says, “this kind of hurts and puts me off. We have learned that older deaf kids and adults often find it hard to communicate with family members who can’t sign. We think even if they learn a little bit of signs it will benefit Riana as she gets older.”
Step Six – “Come to the Monday Morning Parent Group – it’s the best thing!” (Note: In present day, this is our Bouncy Babies Group.)
Jamie confides, “Without Parent Group I don’t know where I’d be! New parents might feel shy or awkward at first about joining in. I made the effort and said next to nothing at first, and Riana had trouble separating. Ken comes too whenever he can. Now we are all used to it. You don’t feel alone and it is confidential! Someone else has usually been through what you are facing and it’s helpful to get ideas. Offering suggestions too makes me feel good. It’s a day out and it helps to deal with everything.”
Step Seven – “Sign language gives you another way to communicate.”
Ken and Jamie talk about the rewards of learning sign language. “Intensive home sign language was a great start for us last spring. Then we moved on to a more advanced class in the fall. We found the classes very helpful and enjoyed meeting new people. We are learning a whole new language and that is very positive. When Riana was very young, signing was a one way thing. Now she is giving back and using signs herself!”
Step Eight – “Work closely with your audiologist.”
Riana has had 13 audiological assessments in the last 12 months in addition to many appointments for better fitting earmolds! At first the molds squealed a lot. It was a problem especially when Riana was a baby and lying down much of the time. As Riana moved through the early stages of sitting to crawling to pulling herself to stand, she started to pull her aids out a lot. Ken admits, “We were insistent, but putting the hearing aids on and keeping them on as well as all the audiologist’s appointments were our biggest challenges this past year.” The effort has really paid off. Each hearing test has given the audiologist and the family more information about Riana’s hearing loss so that the best hearing aids and settings could be used. Riana now wears her hearing aids almost all day “except for naps, baths or when she is frustrated!” As the family has worked to provide many listening opportunities for Riana, her awareness of and attention to sounds have grown!
Step Nine – “Get a big binder and put everything in it in an organized way!”
Jamie and Ken found taking in all the new information and processing it another big challenge this year. “We have had to sort through what works and doesn’t work for us. We didn’t want to lose all the valuable resources and information we were getting so we started putting things in a binder with an index. We haven’t even looked at half the papers but we can look at things as we need to because we know where to find them!”
Step Ten – “Think about the positive things.”
When asked what positive things have happened over the past year, Ken’s first response was, “Everything!” After giving it a bit of thought he added, “In general, a lot of things have been positive. Riana’s deafness has opened our eyes to both the deaf world and the hearing world. There is so much out there we didn’t realize!” Jamie summed up their attitude and feelings this way, “We didn’t plan this, but we knew when I was pregnant that being older and having some health risks meant anything could come our way. We didn’t wallow in pity. We try to meet life’s little challenges head on!”