Hi! We are Eric and Melanie Johnson, Parker and Hailey. As far as hearing loss goes, our family is a little unique. I, Melanie, am the only person in our family who doesn’t wear hearing aids. Eric has mild-moderate hearing loss in one ear and moderate-severe in the other.
He is joined by his youngest sister and dad who all have similar levels of hearing loss. When Parker was born, he didn’t pass his infant hearing screening test in the hospital. We were sent to the health unit for further testing but at that time, he had a cold, so his level of hearing loss was chocked up to his cold. We went for more tests over the next several months, and again, we were assured his hearing loss was due to fluid or colds. He regularly had fluid in his ears, so our family doctor referred us to an Ear, Nose and Throat (ENT), Specialist at BC Children’s Hospital (BCCH) just before his first birthday. Since the fluid had been affecting his hearing for the first year of his life, his ENT wanted to put in tubes as soon as possible and surgery was scheduled for three weeks later. The day of surgery, Parker came home and started dancing to music. It was like he was hearing for the first time. Since he had such a dramatic difference in his hearing after getting tubes, doctors again thought that had been the issue all along.
Parker was babbling things like ‘mama’ at five months old, a time when tests showed his ears had been free of fluid. Unfortunately, that fluid-free period was short-lived, and his speech didn’t progress. He didn’t learn any new words and we were growing concerned. We went back to BCCH for our regular six-month check-up and the ENT asked the audiologist to do a hearing test. After the test, she asked if we would allow her to do a sedated Auditory Brainstem Response (ABR) Test. She spent over three hours testing him and was finally able to diagnose him with mild to moderate mixed loss in his right ear, and mild to moderately severe mixed loss in his left ear. We had never heard of a sedated ABR before that, but we wish we had known then, what we know now, and would’ve pushed for one sooner. It was frustrating that it took two years to diagnose him, knowing that there is a history of hearing loss in the family.
I was eight months pregnant with Hailey at the time, so our team at BCCH ensured we got the ball rolling quickly so that we could get everything Parker needed before she was born. Lori Bell at the BC Early Hearing Program got us in touch with the BC Family Hearing Resource Centre (BCFHRC). Before Hailey’s arrival, Parker received his hearing aids, had a speech therapist and went to his first Partner’s and Playmates (PnP) session at the Centre. Everyone was so accommodating. It was a whirlwind couple of weeks, but with our second baby on the way, we appreciated that BCFHRC worked with us to have everything set up before her arrival.
Our audiologist at BCCH told us that regardless of the results of Hailey’s infant screening test, she would like to do a sedated ABR to ensure that she was diagnosed early on and we didn’t have the same experience we had with Parker. We hoped and prayed that she would pass the test in the hospital, but unfortunately, she didn’t. Within a couple of weeks, she went for her ABR and was also diagnosed with bilateral moderate mixed hearing loss and received hearing aids about a month later.
Having a toddler and a brand-new baby is tough enough but now we were trying to juggle the usual woes of have a new baby in the house, along with trying to arrange speech therapy sessions. We felt like we were making up for two years of lost time. Parker had his first development assessment done and when we were told the results, I was in tears. The results were to be expected, considering he had barely been able to hear for the first two years of his life, but I felt like a failure. As a mom, we want to protect our children and we never want to hear that we’ve done something wrong as a parent. Not that I had, and nobody said that I had, but when we were read the results of that first assessment, we were told it wouldn’t be likely that he would be able to catch up to the average five year old by the time he would start Kindergarten.
I took that personally and went through all the realms of emotions, beginning with anger and then sadness. It didn’t take long though before we simply became determined to give him the resources and help he needed to advance him as far as we could. Alex Lay, Speech Language Pathologist (SLP), was our interventionist at the time and she was wonderful to work with. She got to know all of us and knew the best ways to connect with Parker so that she could keep him engaged and develop his speech. She always made the sessions fun for him and he looked forward to her visits.
Hailey was still a baby at this time so the speech sessions were mostly focused around Parker at this point. Hailey wore her hearing aids like a champ and was engaging with the world around her. Unfortunately, as she got a little older, she started pulling them out and it was a fight to keep them in. We got her some headbands that held them in, but it didn’t take her long before she figured out how to push them aside and grab onto the hearing aid. It became a daily struggle and unfortunately, she hardly ever wore them. Shortly after Hailey turned two, she finally started to realize the difference her hearing aids made and she actually wanted to wear them. She went from rarely ever having them in to asking for them the moment she woke up in the morning and wearing them for all waking hours.
As we were nearing this past September, we started to grow more and more nervous about Parker starting Kindergarten. The one thing that was reassuring is there was a team of Kindergarten teachers who had children with hearing loss in their class for the two years preceding Parker. As we had imagined, he got those teachers and they were so well prepared for him! They’ve done this before and it gave us a lot of peace of mind. Emily Black, SLP, who has been our interventionist for about the last year, had been really focusing on Parker’s development before he started school and we felt confident that we had done everything we could to prepare him for the transition ahead. While there has certainly been challenges, he has transitioned fairly well. Hearing loss or not, starting Kindergarten is a big change for all children.
It’s a little different in our house than a lot of families with children with hearing loss. Our kids have never really thought that they’re any different because in our house, mom is the one who’s different. We’ve had other kids ask, “What are those on his/her ears?” The first time I was asked the question, I immediately felt defensive. I was a little nervous and my “mama bear” instincts kicked in. I had never thought about what I would say when someone asked. It’s amazing how many thoughts can run through your head over the course of one second, but I quickly realized this little girl was just curious about what were on Parker’s ears. I quickly thought of what I saw as the simplest way to explain to someone so young. I explained that just like how some people wear glasses to help them see, Parker wears hearing aids to help him hear. She simply looked at me and said, “Oh, okay,” and carried on, playing. Simple as that. I’ve used that explanation for every little child who has asked and they’ve always been content with it. They’re only asking because it’s something new to them and they’re curious.
We try to teach our kids to advocate for themselves, as best they can at this age, and we try to be their biggest advocates. We both work full time so we rarely get to participate in events at BCFHRC, but the support we’ve received from our SLPs has been amazing and they are an incredible resource with all of their knowledge. Even though hearing loss isn’t new to all of us, it’s so nice to know we have support when we need it. Our SLPs have just become a regular part of our lives and the kids look forward to the next time they’ll see Emily. As we were nearing Thanksgiving, Parker was listing off family members to ask if they were coming or not and even asked if Emily was coming. I guess that just makes her part of the family now!