Chasing bubbles with Alyssa

By the time Alyssa was one, the world of MRIs, doctor and therapy appointments was a familiar one to us. Even as a newborn, Alyssa’s eyes seemed to move involuntarily, so we pushed for an eye specialist to see her. We were stunned to learn then that the specialist believed despite some perception of light that Alyssa was functionally blind and never expected to see. Those eye movements were called “nystagmus” which made any focusing impossible. When following up with a neurologist at seven months, we learned something different. She had Cortical Visual Impairment (CVI), not blindness. Though not blind, her brain doesn’t process what she sees well and needed therapy to make the most of what she could perceive. Between learning about CVI, her brain malformations and their suspected effect on development, we had a steep learning curve.

We got her into therapy quickly and started to see some early responses. Still, she didn’t respond quite as expected, and some of what the therapists saw they wrote off to her vision. When she was about a year old, a geneticist noticed that she wasn’t responding typically to sounds and recommending having her hearing checked. Hearing? I was pretty thrown off guard with this revelation. Did she have a newborn hearing screening? No one ever mentioned her hearing before. I had seen her responding to sounds like doors closing and the microwave in another room. We didn’t realize until later that she should have alerted to us when talking to her or to each other. We knew she was behind developmentally, but everyone thought it was vision or developmental delay, and no one gave her quality of hearing much thought.

Like most parents, I knew very little about hearing loss. Her first test, while awake but quiet, was the Otoacoustic Emissions (OAE). The results indicated a moderate hearing loss, but the audiologist said this might be caused by fluid in her ears. She was sedated, tubes were placed, and an Auditory Brainstem Response (ABR) test administered while she was still asleep. Tubes did help; her hearing changed to a mild to moderate range. While Alyssa was in recovery, the audiologist explained what the tests showed and let us know that she would in fact need hearing aids.
By then, we were getting used to learning new diagnoses. After blindness and risks of cognitive delay, hearing didn’t seem to be that big of a hurdle. We threw ourselves into getting her fitted for her hearing aids and into therapy. It was beyond helpful to have the hearing coordinator, a non-doctor experienced in talking to new parents about their baby’s hearing loss, explain the next steps and help us pull a plan together with her huge, highlighted notebook illuminating the process and choices ahead.

In just those first blurry thirteen months, we had a lot of information to take in and no time in which to adjust to it. We learned that a child with mild hearing loss may have difficulty hearing soft speech or conversational speech in background noise, and that moderate loss would cause difficulty hearing normal conversational speech. Alyssa’s mild to moderate loss caused her to hear some sounds but not respond or discern others. If a child cannot hear all the speech sounds well, she will learn to talk the same way sounds are heard, and also have difficulty understanding spoken language. The hearing coordinator explained to us that Alyssa may not hear the sounds “p, sh and c,” for example, but hear a phrase like “piece of cake” as “iece of ake.” Without the use of hearing aids, she would be working so hard to make sense of what she heard. She might find classrooms and conversation confusing and stressful – learning would be more work than fun. She might disconnect from a world that didn’t make much sense.

Alyssa started therapy at home with a Magnolia Speech School therapist shortly after getting hearing aids, an early intervention program for babies birth to three that is free of charge. She also attends a special needs preschool (which has a total communication approach) at T.K. Martin Center for Technology and Disability on the Mississippi State University campus, and has PT, OT, feeding therapy and speech through Kid Therapy Spot. We are glad to know that she can stay at T. K. Martin until she is five. She is now 27 months old has made great progress over the past year.

We have learned many games to do at home to help improve her listening and communication skills. If she appears to hear or respond to a sound, we praise her and say, “Yay, you heard that!” We made an activity box with her favorite toys (animals, vehicles and people at this point) to help her see that specific sounds are associated with each one. We practice the six Ling Sounds with her too, knowing that if she respond to them and eventually learns to repeat them, we know aids are working across all frequencies.) Daily routines like meals, bathing, getting dressed and playing are also ideal opportunities to practice listening skills. We explain everything to her. Singing is another great way to engage her. Her favorites are popping bubbles, singing songs, story time and peek-a-boo. We rewarded any imitation of sound that she gave even if it wasn’t quite right. If she showed any interest in communicating, we’d jump on it to keep it going, even if we were in the middle of an important meeting.

We see such changes in her. From the moment Alyssa started wearing hearing aids, she began reacting to sounds she had never heard before. Now she looks for the person talking and explores the world around her much more. She said her second word ever within a few weeks of wearing them: “Bubba” for her older brother. (We highly recommend big brothers like Triston!) She started wearing glasses shortly after starting hearing aids to help with near-sightedness. Both glasses and hearing aids have opened up her world. Before, she seemed more closed off and to herself; disconnected. We are enjoying getting to know a more mobile, talkative, curious Alyssa as her world opens up.

Alyssa’s journey is just beginning. We know she will face down challenges, but we believe in her and have faith in her future. We had to embrace patience with her and ourselves. Some things we learned quickly, but learning how to best parent Alyssa comes more through educated trial and error. (We learned from experience that Ear Gear clips were a necessity to keep aids safe, for one thing!) There is nothing simple or easy about adjusting to the news that your baby has a hearing loss, visual impairment or any other medical condition. Some days we definitely feel in over our heads, but our new way of life feels more familiar the more bubbles we chase with her.