By Brenda Elliott, Pikes Peak Region Parent Guide
My family’s journey begins twenty years ago, and there are a few twists and turns. Please join me as I take a stroll down memory lane. Surprisingly for me, this still elicits many emotions.
Back in May 1996, we eagerly awaited the arrival of our firstborn. I had a very easy pregnancy, and other than the fact that our little bundle of joy was seven days overdue, things were great. As is typical of a first baby, the labor was lengthy but manageable. There were some complications with his delivery involving a prolapsed cord, meconium and intubation, but he did well when those resolved. We were discharged the following evening with Jayson, who had a gorgeous shock of strawberry blonde hair, just like my mom had had. On the way home, I wept a bit, missing her. She had passed away the previous November, but overall everything was well in our world. As an aside – a single $10 co-pay covered the entire pregnancy and delivery. Those were the days!
A few days later, I went through the paperwork from the hospital. In the pocket of a new, free diaper bag, there was a paper indicating my son had failed a newborn hearing screening. What? I didn’t even know his hearing had been tested, much less that he failed. Why hadn’t someone told us personally? I called right away and made an appointment for another screening as the paper requested, and I was assured that is common and usually a result of fluid in the ears incurred during labor. (I later learned that this is not to be said to parents!)I returned to the hospital with Jayson, and tests showed the same result.
Did I cause the hearing loss?
At that point, it was starting to hit me. I felt guilty. Did I do something wrong during the pregnancy? My OB had given me a chart with all the food groups and how they related to a baby’s growth, and I had been careful to ensure that he got excellent nutrition. I searched the chart, but there was not a food group, vitamin or mineral directly connected to ear or hearing development. Still, it must be my fault; I was the one who carried him, and everything had been fine. Did we see a movie in a theater that was too loud? I was in a church choir– could that have been it? I don’t know how long I struggled with this notion. I kept it to myself, but the ‘mom guilt’ was real for me.
However, something was wrong with his hearing, and I had no idea to what extent. We were referred to another hospital for diagnostic testing, and the first available slot was not until Jayson would be almost two months old. In the meantime, we watched how Jayson responded to sounds. If we dropped a dish and he jumped, my husband and I would look at one another and say, hopefully: “Well, he heard that; at least he’s not deaf.” In truth, we didn’t really know. Could he be responding to vibration? When friends with children visited and Jayson slept through the ruckus, we didn’t know whether to be thankful that he was a good sleeper or worried that he couldn’t hear. Or could he? Ah – such a frustrating and anxious time. While on maternity leave, Steve and I took Jayson to meet family in Montana. My older brother, who is a father to three teens, was playing a music box for Jayson, and noticed that Jayson seemed to prefer the music box to be held closer to him. We hadn’t disclosed anything yet about the hearing concerns, so that caught our attention.
Finally the testing day came. I took Jayson by myself, not really grasping what was happening, and doing my best to bring him sleepy as requested. We tried to do the test, but Jayson was a little squirmy. The audiologist was very patient and suggested I nurse him to help him settle down. This worked like a charm—he loved to take his own sweet time, which was perfect for the test (later I learned this was a non-sedated Auditory Brainstem Response (ABR) test.) When the audiologist shared the results showing that he had a hearing loss, even though I had known it was possible that my little guy wasn’t hearing everything, emotions washed over me. I was sad. I was worried. I felt guilty and responsible. The audiologist went on to say that Jayson would need hearing aids, encouraged us to follow up with a specialist, an otologist. She also said something about someone following up with us later. I walked out, stunned. I remembered that I had grown up with a friend who wore hearing aids, enjoyed music, was a wonderful person and who had graduated from college, so I held a lot of hope for my son.
If the Doctor Says So…
We went to our family doctor for Jayson’s well-baby appointment, and got the referral to the otologist. This time Steve came with me, and the very nice doctor even told us that with hearing aids, Jayson could hear as well as you or me! We were delighted! Wow – who knew? All this worrying over nothing, but hey, I was tickled at the news! How lucky were we? We asked if Jayson would always have to wear hearing aids, and they said probably only until his language was fully developed – around the age of twelve. It would be his choice then. You can imagine that we were almost euphoric! The best of all outcomes: mild-moderate hearing loss, full correction by hearing aids, and he would only need aids for a few years of his life! Things were definitely looking up.
As part of the appointment, we met with an audiologist in the office, who fitted Jayson for ear molds and hearing aids. We first put on Jayson’s aids when he was 3 ½ months old, on my husband’s birthday. Back then, the hearing aids were analog (not digital), and they had a volume control on the back. The hearing aids were also enormous on a baby’s ears. Like many parents do, we selected beige to match Jayson’s skin tone as closely as possible. We didn’t want to attract any unnecessary attention, and my husband remarked that we could let Jayson’s hair grow over his ears, even though my husband preferred a style that was short and above the ears. The audiologist suggested we try keeping the dials on the hearing aids at 2 and 2 ½ for volume. She showed us how to put on the hearing aids and keep them clean. We came regularly for basic testing and to make larger ear molds. We once asked if there was anything else we should consider. The John Tracy clinic was mentioned, which was in Los Angeles, and they offered a correspondence course for families whose children are deaf or hard-of-hearing. We contacted them and enrolled in the program, and although we tried to connect with the material, it seemed more appropriate for those with more significant hearing loss, but we did what we could.
When they recommended hearing aids for Jayson, the firm for whom I worked (a small, privately held company) had insurance that helped cover the cost of hearing aids at $800, per pair, for one time only. People told us how lucky we were. The aids were $1600 apiece, so that was helpful, however I worked with my local manager to write the Human Resources department to review the policy. I did not know this was “advocacy”; it just seemed ridiculous to me that hearing aids, especially for children whose language is developing, should not be covered by insurance to ensure access. Surprisingly, the company agreed, and changed their policy to cover the aids at 100% with no other caveats. We were delighted and felt good about affecting positive change. I must give credit to the management team and to the company (which has since been purchased by a larger firm) for responding with such a proactive and counter-cultural response.
Early Childhood, Music and Early Trouble at School
Fast forwarding a bit, when Jayson was 17 months old, we found music classes for toddlers, and we enrolled with a friend. As fate would have it, the teacher’s husband was hard-of-hearing, as was her grown son, so she was comfortable teaching Jayson and treated him like a typical child, for which we were thankful. Of course as a person who loved music, I was thrilled to find classes for my little guy. I had no idea what the future would hold for my sweet son, but I knew I wanted to share my enjoyment of music with him.
Later, when Jayson was two and a half years old, we asked the doctor what we could do to keep his speech on track. The doctor suggested we check with a local speech therapist, who evaluated him and found that he was doing well and on-track within six months of typical speech development. Again, all seemed well with the world. (Note that no one ever connected us with Colorado Home Intervention Program, which could have worked with us until Jayson was three, and had specialists in hearing loss.)
We welcomed Jayson’s little sister, Kyra, when he was 3 ½ years old. Although we had another easy pregnancy we did have concerns about whether our next child would also have a hearing loss, but she did not. Whew! However, she used to pretend she had hearing aids. She had several pairs– a princess pair, glow-in-the-dark, and a pair of Buzz Lightyear aids. Kyra would ask for them in the morning, and I would pretend to get them. She always put them on herself. True to her personality, even today: “I help myself, mama” is her mantra.
In the fall of ’01, Jayson started half-day kindergarten at a local elementary school. We continued with childcare until I was laid off in October of 2001, when I started a business offering early childhood music and movement classes. Jayson seemed to enjoy Kindergarten, and his grades seemed fine. However near the end of the year, the teacher held an open house-style conference. I overheard her telling several parents how wonderful their children were doing. I patiently waited until she came over to me. She leaned over and said, rather quietly, “He’s doing the best that he can.” Tears began welling up in my eyes. I didn’t say anything. What did that mean? I never did ask. I just figured that my son was going to have to work hard in school and just was not naturally academically bright. There was another elementary school that was closer to home, and since I was mostly a stay-at-home mom, it made sense to transfer Jayson to our home school. This change seemed to be a good one. Jayson was doing well in school, and this new teacher did not have any concerns. I would go in weekly to help with math, and occasionally Jayson would struggle, but I figured it just that he was not strong in math, kind of like the teacher in kindergarten had intimated. We worked with his teacher and did lots of math drills at home, and he seemed to do okay, but his confidence had definitely taken a hit.
As he progressed in second grade, Jayson’s reading comprehension seemed to suffer, even though he was a solid and avid reader. The teacher noticed and contacted us right away to ask if she could start a process to see what might be the cause. We agreed. As part of that process, they discovered his reading comprehension was actually quite strong. Hmmm. What was going on then? The tests continued, and they suggested we have his hearing and hearing aids checked. We had not been seen by the ear doctor or audiologist for over almost three years, per their recommendation, since everything was going so well. We found out the school district had an audiologist, and so we made an appointment with her. At the time, she was located at the Colorado School for the Deaf and Blind. When we arrived for the appointment and she tested Jayson’s hearing. His hearing hadn’t changed, however his hearing aids, which he’d had for seven years, were not functioning properly. Oh. The audiologist also asked us what equipment Jayson used at school. We were a little confused, but answered her with “hearing aids.” She asked us about an FM system. Ummm – what’s that? She began to explain about an FM system and was surprised that we were not using anything to assist him in school. She encouraged us to talk to the school about assistive equipment, and she gave me a green piece of paper, approximately the size of a bookmark. It contained information about assistive equipment, but what shouted to me was something that read like this: “A child with a mild-moderate hearing loss is at risk for being successful without assistive equipment in the class room.” At risk for being successful? It was as if I’d been punched in the gut. How was this possible? The doctor had said he could hear as well as you or me.
Eventually Jayson was placed on an Individual Education Plan (IEP), for which he automatically qualified due to his hearing loss and difficulties had anyone in the school been educated as such. Unwittingly, we became catalysts for advocacy within the school district when the teachers-of-the-deaf/hard-of-hearing began pre-emptively educating the teachers and staff about hearing loss. If they saw a child with something on their ears (aka hearing aids), please notify the special education department immediately. Jayson had slipped through the cracks, since we were not assisted in his transition to preschool by early intervention, and they were not going to let that happen again, if possible. This first IEP helped Jayson with an FM system and other accommodations (sitting near the teacher, using captions/subtitles on videos and TV, ensuring he was not seated near a noise source like a fan, a heater or an open door, etc.). I really had no idea what was happening at our first IEP but the learning curve had begun in earnest.
Support for Learning
A Teacher of the Deaf (TOD) would work with Jayson weekly, helping to build his vocabulary. That was why his comprehension had seemed weak. He knew lots of words, but his vocabulary had unpredictable holes in it, like Swiss cheese, if you will. For instance, during the testing for the IEP, he called a calculator was a ‘math thing’ – he didn’t know it was called a calculator. Binoculars – they helped you see things far away, but he didn’t know the name for them. Yikes. He also knew that Safeway and King Soopers were places you went to purchase food, but he did not connect them to the category “grocery store.” I learned about incidental learning, a critical and typical way that we learn about the world through overhearing others talk and inferring meaning from the context of discussion. For people with hearing loss, incidental learning can be impacted, and children may need to be taught concepts more directly when developing language. Oftentimes with vocabulary, you pick things up when you overhear others. When you have a hearing loss, you tend to focus on what is right in front of you. This is a generalization and a very basic description, but it was certainly true for our son.
Life had changed. We ordered new hearing aids for Jayson. He selected them, and they were a lovely teal green and they were digital! He was offered the opportunity to choose colored ear molds, but he chose clear. With the hearing aids working, and systems in place to help him, things were once again looking bright. When he was seven, he began learning the keyboard. His musical aptitude was very strong and he chose to spend time working on it. He also played soccer, enjoyed riding bicycles and playing with friends. Just an ordinary boy–like we had hoped.
A few weeks before Jayson would enter 5th grade, we were blessed with another little boy, Timothy. He had also passed his hearing screening. Jayson’s hearing loss must have definitely been a fluke. Soon, it was time for Jayson’s triennial IEP. At school things were going pretty well, but when we had his hearing tested, it had progressed from mild-moderate to moderate overall and needed his hearing aids adjusted. We didn’t know exactly when this had happened because we had not been testing his hearing regularly, since it had been stable and the doctor had suggested about every three years. By this time our school district had hired an audiologist full-time. We asked her if we could test his hearing more frequently and we began testing his hearing every six months. We did not want to repeat the mistakes of the past, particularly since we had no idea of whether or not his hearing would continue to change for the worse. On the way home, Jayson asked if he could begin to learn American Sign Language. He did not want to lose the ability to communicate. Tears welled up in my eyes, and I told we would get him started on it right away. I had a sign language book at home that my mom had used years ago when she worked in a group home. I had no idea that it was for Signing Exact English (SEE).We started signing simple sentences to one another. The audiologist assured Jayson that he was a long ways from becoming dependent on sign language, so we just sort of dabbled here and there for fun.
A New Baby Brother: Early Intervention Makes a Difference
In 2007, Jayson was eleven and starting sixth grade, our fourth child was born. By this time, we weren’t really concerned about hearing loss occurring again. While we were in the hospital, we were informed about the screening and the results. It was interesting to see the expression on Jayson’s face when we were told that his baby brother Justin failed the hearing test. My impression was that it was a mix of grief, as in “I know things are going to be a little more challenging” and relief– “I’m not the only one, and I’ll show you the ropes.” That probably encapsulated what Steve and I were thinking, too. The volunteer who performed the newborn screening offered to repeat the test with Jayson present, so he could see the process, which Jayson welcomed.
Things were so different this time! We made an appointment for a non-sedated ABR, which was explained to us in advance. Steve and I went together for the ABR, and when we heard the detailed results, we were relieved to find out that Justin’s loss was moderate, but very similar to Jayson’s when you look at the audiogram. Also, the audiologist mentioned early intervention services—this was new to us. She gave us the name of a CO-Hear and said that someone should be in touch with us in the next few weeks. In the meantime, we visited our family audiologist and fitted Justin with hearing aids. Many things had changed, both for us as a family, and in terms of technology. The audiologist was able to find some tiny digital hearing aids, and Jayson chose the color – dark blue. At that time, our insurance covered the majority of the cost. When the hearing aids arrived, the audiologist utilized a new device to perform a Real Ear Test, which programs the hearing aid based upon the audiogram as well as the size of person’s ear canal. I was floored. I had to know more. As the audiologist explained, I realized that in the past, particularly when Jayson was young, that there was a likely a fair amount of guesswork involved. I was so grateful for the leaps in technology that would provide advantages and support to Justin that Jayson had never had.
Once again we ventured into the unchartered waters, but the irony was that this time we would have a guide, so to speak. We waited about six weeks and had not heard anything, so we reached out to our CO-Hear and scheduled an appointment. I think she asked if she could bring someone from Hands & Voices, a group that supports families with hearing loss, and I welcomed that. We met and visited, and even in that brief visit I learned so much and felt connections I did not know I was missing. The CO-Hear, Denise, set us up with the Colorado Home Intervention Program (CHIP), and we began that program when Justin was a few months old. Believe it or not, there is no way for me to adequately articulate the gratitude and appreciation I felt for these services. Our CHIP provider provided me with a handbook, and I perused the information, drinking richly from the knowledge bank contained within those pages. I read the entire contents before our interventionist, Ann, returned the next week. Even though I had parented a child with hearing loss for eleven years, there was so much information I didn’t know – Swiss cheese knowledge, on my part this time. I was also encouraged by Ann, to attend a playgroup at Colorado School for the Deaf and Blind (CSDB) for families with children birth to kindergarten with hearing loss. Again, connecting with other families filled a need I did not even know existed. Parents were able to share their stories and connect and topics ranging from how to keep those hearing aids on, to what the future might hold, safety, education concerns, and typical mom stuff. Much of what I was learning with Justin helped in many ways with Jayson. I would share things I thought would be helpful. We also started with the Integrated Reading Program (IRP) so that we could begin to learn some American Sign Language (ASL).By this point, because Jayson had already expressed an interest in learning ASL, and we were realized our children were in many ways betwixt and between–neither hearing nor deaf, and we wanted to provide a bridge to both worlds, in hopes that would help them to have more options when they were ready to make communication choices.
When Jayson had his next triennial in eighth grade, we had been having his hearing tested regularly, and it remained stable. Due to major changes in technology, particularly with the popularity of Bluetooth, Jayson got new hearing aids. These aids could even communicate with one another, providing a truer simulation of how human ears identify sound, through Bluetooth, and he chose a cool metallic blue, with multi-colored ear molds. He continued to work with the Teacher of the Deaf on vocabulary and to use an FM system. She said that was a little unusual, but Jayson seemed to value its benefit – probably having struggled so much when he was younger. He continued to study piano and had began writing music. Most of his music compositions seemed to lacking the lower, deeper bass clef notes, but we did not really give it much thought. One day the school audiologist called and said she had read about some musicians who wore hearing aids, and that there was a music program that she could add to his hearing aids. As we learned, hearing aids amplify only speech sounds which tend to be in the range about middle C – about 260Hz for you science types. She added the program to Jayson’s hearing aids, and he went home and started playing piano – his favorite pastime and passion. After he finished the first piece, he looked at me and said sincerely, “Do you mean you’ve heard like this your entire life?” Once again, my eyes welled up with tears. I had no idea that he hadn’t been able to hear those lower notes. Wow. Needless to say his music compositions began to become more rich and complex with the inclusion of the bass notes.
A Later Look at the Boys
When Justin completed the CHIP program, he started preschool with an IEP, with the same TOD that our older son had. He was off to a great start, complete with an FM loop in his classroom and vocabulary support. Justin is now in third grade and doing well. Interestingly enough, since we raised boys with and without early intervention within the same school district, we can evaluate firsthand in a somewhat controlled environment the difference it can make. With our Teacher of the Deaf, we compared the results of several tests from when the two boys were in second grade. We found it heartening to hear that Justin’s vocabulary scores were much stronger than Jayson’s. On a personal note, Justin has not expressed anything to indicate an erosion in his self-confidence regarding his school work. I credit this to early intervention as well.
Jay took three years of ASL in high school, graduating in 2014 and working in the music field while attending college part-time. He’s happy and enjoying his life. He’s also involved in several ensembles in the community and has a small music studio where he offers private lessons.
There is no end to our learning. I recently attended a workshop in our school district on technology for the deaf/hard-of-hearing. Our next steps involve learning more about technology, like captioned phones, hearing dogs, etc., now that our sons are old enough to advocate and explore what is helpful to them.
I’m very excited to join the CO Hands & Voices team, and I hope our story provides encouragement to others. Chances are, if you’ve read through this, you’ve been thrust into an unusual situation. You can do this, and we’re here to help. Oh, and you have a long attention span. =)