Archives for 2017

The Richter Family Story

Late Diagnosis and Early Intervention

By Jennifer Richter

My first pregnancy with my daughter Paige was fairly uneventful. I was measuring a bit smaller then the doctor would have liked so they started me on non-stress tests for about four weeks before she was born. She was born almost two weeks early and weighed in at 5 lbs. 9 oz. We are not very big people, so the doctor was not worried at all. Paige sat up at six months, crawled at seven months and walked at 11 months. She started talking at about ten months and never stopped!

When I got pregnant with my second daughter, I assumed this pregnancy would be “business as usual.” I again started measuring small, so I began the non-stress tests again. We had a precautionary ultrasound at 32 weeks to measure the baby, which I thought nothing of since I had a history of carrying small babies. This time the news was not what I expected. The doctor told us that she had mild ventricularmegaly, which is enlarged ventricles of the brain. They were not too worried at that point, as long as the ventricles did not get any bigger.

Of course I was a complete wreck, looking up anything I could about it on the internet, which was a huge mistake. In retrospect, I found that the internet usually gave the worst case scenarios.  At 35 weeks we repeated the ultrasound and the ventricles had gotten slightly bigger, so they suggested that I get induced at 37 weeks. Of course, I thought only of the worst case scenario (hydrocephalus, shunts, etc.), and did not know what to expect. When she was finally born on December 17 at just under five pounds, she scored 10s on her Apgar test and was deemed healthy. She was very small and jaundiced, but otherwise healthy. She had her newborn hearing screen while she was in the hospital, and passed! I remember saying to my mother “at least that’s one thing we don’t need to worry about!”  I guess I was wrong about that.

Due to her prenatal problems, she was monitored closely. We had an unsedated brain MRI at three weeks. I remember how proud and impressed I was that my baby stayed so still through the entire test! I now know it was because she did not hear the extremely loud noises the MRI machine makes. Thankfully, the MRI was normal and we thought our worries were over. However, at about six months of age, we noticed that she wasn’t turning to her name like her sister had. She didn’t startle to noise, but she was very tricky. She learned to respond to facial expressions and had great peripheral vision. When we clapped hands behind her back, she responded (because she saw us, probably). Of course she could hear! She would wake up when the shower went on (which was next to her bed), and when the door would slam. It is so easy to see now, looking back, that she was alerted by vibrations and her own good visual skills. She also had some gross motor delays. She was slow to sit up, roll over and crawl. At six months we enrolled her in the Montgomery County, Maryland Infant and Toddlers Early Intervention Program to receive physical therapy. Within a month of beginning therapy she sat up and started to make real progress. Her pediatrician,   concerned that she wasn’t babbling or making eye contact, referred us to a developmental pediatrician. That doctor referred us to speech therapy. which started immediately. She did not make any progress. No one even thought twice about rechecking hearing since she had passed her newborn screening.  I still felt that something was wrong, even though the experts assured me otherwise.  I believe that the hearing loss was missed because it was not a symptom related to her prenatal problems.  Enlarged ventricles do not cause hearing loss.  I believe the doctors were looking for something neurological to fit into the puzzle.

Will She Know Me?

Though she had undergone every test under the sun, I decided to request a behavioral hearing test when she was ten months old, since I was still convinced something was wrong. As the audiologist presented loud piercing sounds, my baby just played with the toys in front of her with no response. She did enjoy when the elephant lit up and the monkey clapped the symbols, but that was about it. The audiologists were concerned, but not overly concerned. Her tympanograms were flat in both ears, so they said that her non-responsiveness could likely be because of the fluid in her ears. I really wanted to believe that was the issue, but deep down I knew that it was not enough to cause no response. She was then scheduled to have ear tubes put in to drain the fluid, but the audiologist also wanted a sedated ABR to rule out hearing loss to be on the safe side. We scheduled the test for December 2005, when she turned one. Unfortunately she was sick on the day of the test, so they couldn’t sedate her, but they were able to get enough information from the unsedated test to suggest that Cameron could have a severe hearing loss. The audiologists provided me with information about hearing loss, hearing aids and cochlear implants. I don’t think I heard a word that they said. All I kept thinking was “Will she ever know me? Will she ever say mommy? Will she go to college?” I had never known anyone with a hearing loss and had no idea what a cochlear implant was. I didn’t think that a child who was deaf could listen and acquire spoken language. Once I started reading and researching our options, I knew that I wanted my daughter to learn to listen and speak if she could. So our journey focused on that destination.

Communication Modes and Implant Surgery

Cameron received her ear tubes  and two weeks later had a sedated ABR. At that point we just wanted a diagnosis so we could move forward. We had gone through every emotion possible, but it was so difficult not knowing for sure. Her final diagnosis was a profound bilateral sensorineural loss. The audiologist at Bethesda Naval, knowing in advance that a diagnosis of a profound hearing loss was very possible, had asked a mom with a child about a year older then Cameron to come to the hospital to meet us. Unfortunately she couldn’t make it, but her daughter who was implanted about a year prior left a message on his voicemail. She said the words “more, my turn, mommy” into his voicemail. I started crying and knew then that there was hope. I also started meeting with anyone I could to educate myself on the communication options. We first met with the ENT at Walter Reed Army Medical Center who scheduled us for surgery on Feb. 14, 2006. We were so thankful that the military did not have a required six month hearing aid trial…we knew that with her profound hearing loss that she would not be able to access speech sounds with a hearing aid and she had already lost so much time listening because of her late diagnosis.  She had met the minimum implant age at the time of her diagnosis so she immediately became an implant candidate.

The doctor was not the most encouraging person we ever met. He provided us with the risks, and said that he did not know if she would be successful given her other prenatal problems and developmental delays. I left his office angry and discouraged, but knew that the CI was her best chance to hear and acquire spoken language. We also met with a teacher of the deaf through the Infants and Toddlers program, an Auditory-Verbal Therapist at Chattering Children in McLean, VA and an audiologist at Bethesda Naval Hospital. The audiologist provided us with all of the communication options available and a list of all of the people who could educate us. She discussed the differences between auditory-oral communication, auditory-verbal communication, sign language, cued speech and total communication. These terms were completely foreign to me at the time. I didn’t know that there were so many communication options available. She also provided me with the names and numbers of parents who could provide us with their experiences with the different modes of communication.

The audiologist also provided us with information about The River School in Washington DC.  The River School has a unique inclusive education model. There are two deaf/hard of hearing students in each classroom and the rest of the students are typically developing. The school bases its curriculum around language and phonological awareness and the typical peers act as speech models for the deaf/hard of hearing students. In addition to structured therapy, we began attending play groups at The River School as well as through the deaf and hard of hearing program. The play groups were fun for Cameron, but they were so beneficial for me. I was able to speak with parents about their communication choices and was able to see firsthand how well their kids were doing. It really provided me with a sense of peace and the ability to know I was making the right decisions for my child. I knew I wasn’t alone.

Cameron received her first cochlear implant in early 2006 and was activated by the end of March. She did great!  By the next morning she was her usual self. We were shocked at the recovery time! Once she was implanted, we threw ourselves into every group and every therapy.  Through the Infants and Toddlers Program, Cameron was visited by a teacher of the deaf who used oral communication as well as sign language and attended a toddler group once a week where cued speech was used.  Cameron loved the cued speech.  She came home singing songs from the class and used cues (not properly, but enthusiastically) while she sang. This was the first time I was exposed to cued speech. I think it is a great way to bridge the gap of communication because it clarifies sounds that sound and look the same on the lips.  Cameron also saw an Auditory-Verbal Therapist at Chattering Children for 1 1/2 hours a week and attended The River School from the time she was 20 months until we moved to Colorado in 2008.  We wanted to educate ourselves about all the various communication modes, but we ultimately chose auditory-verbal therapy as our primary form of therapy.   We were so fortunate to live in a place where so many options were available.

Military move

My husband’s urology residency was finished in June, 2008. We knew that this would most likely mean a permanent change in duty station. We became members of the Exceptional Family Member Program (EFMP) when she was diagnosed. This program dictates that military families who have a member who has any exceptional medical needs must be stationed where services are easily accessible. The EFMP is the reason we were able to be stationed at Ft. Carson, Colorado. When we moved to Colorado, we thankfully already had a clear communication path. We looked for an auditory-verbal therapist, AVT) an audiologist and a mainstream preschool rich in language and phonological awareness. I received a referral from our audiologist at Bethesda Naval to an AVT in Denver. We were so fortunate that she was able to put us on her schedule. I don’t know what we would have done or what we would do now without her guidance and expertise. We were also referred to the Rocky Mountain Implant Center. of the pieces fell together, and we could look forward to the move to Colorado.

Going Bilateral

We started exploring the option of going bilateral in January, 2008. We started reading the literature and speaking with parents and professionals. Since Cameron relied solely on listening, we wanted her to have the best listening experience possible. This was not a decision we made lightly. We felt that the first implant was a necessity, but the second was, in our eyes, elective, since she already had acquired the ability to listen and speak.  We decided we wanted to give her every opportunity both academically and socially and felt that listening with two ears was better than one. We assumed that our bilateral journey would be as smooth as the journey with her first. We were definitely mistaken.  Tricare, the military insurance company, did not deem bilateral implants as medically necessary. We fought for six long months, facing three appeals and two cancelled surgery dates. Tricare finally changed their policy in August, 2009 and she received her bilateral surgery on October 21, 2009 by Dr. Kelsall at the Rocky Mountain Implant Center. We hope that our fight will pave the way for other potential military bilateral recipients. Now at three months post activation, her “new implant” is catching up to her first. She had to start from the beginning and relearn how to listen with her new implant, but the progress has been much faster than with the first since she already had the knowledge of sound and speech. Nothing quite prepared us for her not being able to identify her name when first activated, but her progress has been amazing. She now able to rely on both of her implants. We are very happy that we made this decision for her.

Moving Forward

Cameron now attends a private school with her sister. She knows that she hears through cochlear implants and enjoys seeing others with implants and hearing aids, but definitely thrives in a mainstream environment with her typical peers. I am still amazed how none of her pre-k peers treat her any differently. They asked questions about her implants in the beginning of the year, and Cameron confidently told them about it, but that was the extent of the introduction. Her sister has always helped us with her therapy (presenting LING sounds and playing listening games) and has always been an amazing role model and speech model for Cameron.  While her sister knows that she has some different needs, she has never treated her as “special” and does not expect that we will give her any preferential treatment.  I believe that her sister is the reason Cameron is the independent, successful person she is today.

Cameron is now at age level or above in her receptive and expressive language and continues to amaze us each and every day. She is independent, thoughtful and has a great sense of humor.  She still has some vestibular issues related to the hearing loss (she didn’t walk until she was 20 months old) but is gaining more and more balance. She participates in gymnastics classes and loves Physical Education (P.E.) in school.  Her favorite sport this year has been skiing! She has been going to ski school at Keystone and has been making great progress. She goes on the magic carpet and then loves to zip down the mountain without a care in the world.  There is nothing that she cannot do!  She has expressed interest in basketball, too. I never would have dreamed when she was diagnosed four years ago that this is where we would be today.  We are still unsure of when and how she lost her hearing and will most likely pursue genetic testing in the future.  The testing may or may not unlock the mystery of her hearing loss.

I thank God every day for the gift of technology and the amazing parents and professionals that we have met along the way. I can’t wait to see where this journey will take us next!

By Sara Kennedy

Anne Toilette and the Homebirth Story

Our third child stormed into the world in the first strange light of an incredible late summer fog. Labor was so different this time — I wasn’t sure I was even in labor until transition hit while I was in the shower (you never know when they’ll let you bathe again). My husband had the baby’s head and one shoulder as the midwife arrived, and I was yelling “she’s not going to make it on time!” The baby boy (we just knew!) then arrived, and we were laughing in shock and surprise at a baby girl and her less-than-two-hour labor. She was very much a girl with intense blue eyes and the palest skin. Because she was born in the bathroom, the uncles had all sorts of names suggested – including Kohler, Aqua Porcelaina, and my favorite: Anne Toilette.

We have the midwife on video measuring, weighing, checking reflexes and estimating age, and ringing a bell to screen her hearing. She definitely seemed to respond and I can still hear my voice saying “she’s going to be an early talker.” The newborn screening mandate had passed that year, but my midwife had not received any official news about it yet. Of course we knew nothing about that, either.

I returned to my job as an occupational therapist and Sara Madeleine (Sara the 8^th in my mother’s line) made frequent visits to the therapy clinic where I worked. Her next older sibling was a late talker, finally coming out with words just as she turned two, so we weren’t worried when Sara Madeleine didn’t start talking by one year. We did notice by her birthday that if she hadn’t seen us arrive at childcare that she continued playing. Once she saw us, she toddled over right away for a big hug, and, organized child that she is, usually went to get her backpack for the ride home. After awhile, we could no longer chalk this behavior up to a great attention span. We took her in to check her hearing.

Yep, we also dropped the pots and pans as most parents seem to do, with mixed results.

Getting to the hearing test was a process. First, the exam at our doctor’s office ended inconclusively with a referral to an ENT, After four more weeks, we got in to that ENT, who seemed to only say “yes, she has ears” on a physical exam. We knew her eardrums (tympanogram testing) were fine at the doctor’s office. The soundbooth test weeks later should have been enough to convince me as my ears hurt while holding her through the test, but she didn’t appear to notice the jarring sounds. She got a kick out of the jumping monkey with cymbals. Unfortunately, the ENT got my fear level up when he said “we used to do the ABR (automated brainstem response test) right in the office, but we don’t have resuscitation equipment.”  I couldn’t believe they would sedate our daughter with such a brief physical exam – what if she had a brain tumor? So we went round and round with the office but finally agreed together that she would be the oldest toddler ever to have a sleep deprived test. Hoping to keep her drowsy as long as possible, we also brought in an acupuncturist to work with her, after we’d read about the use of acupuncture for surgery in China.

The Label

Sara Madeleine had a profound hearing loss. 

I remember nothing past hearing those words, except asking if we could wait and think about their plan of intervention and hearing aids right away, or if we could ponder all of this through Thanksgiving and Christmas and start in the new year. I also knew we had tapped our savings for maternity leave and had no idea where we’d get the money for hearing aids, if she could even use them. As we left the office, we saw the ENT and asked if there was anything we could read about this, and he said “not until we get to the cochlear implants.” Of course I googled that when we got home, and was shocked to find that “profound hearing loss” meant she was deaf. No one had used that word with us yet.

My only experience with a deaf person, other than the late deafened seniors I worked with in the hospital, was a man who handed me a card at a fast food restaurant stating that he was deaf and asking for money. (I later learned that most of those folks who do that aren’t even deaf!)

I knew from the start, and my husband agreed, that our goal was to get her to read and write well, regardless of speech abilities. I thought that was going to be the key to her being able to support herself and do what she wanted to do in life.

Then began an intense period of study. Her hearing aids would not be covered by insurance. Coupled with that, we were mystified to find was an ongoing debate and opinions about the whole continuum of the communication choices available. Coming from health care, I expected to hear about “best practices” and “researched based intervention.” Hmmm. We were alternately told by strangers and relatives alike that we must sign, that we mustn’t sign. I don’t know how some of these crazy folks even got our phone number.  I was amazed that people still said things like “deaf and mute!”

Thankfully, by then we had met our CoHear and begun homebased services, so we had someone to help us sift through what was based on research and what was someone’s fondly-held conviction. I wish we had met her sooner in the process: we would have had help with hearing aid funding, perhaps met another family, or even a deaf adult. You can’t know to ask about what you don’t know!

One unexpected change was Sara Madeleine’s name. SM wasn’t a great sign name, (ahem) and after we understood more about her hearing, we doubted that she could hear or say it. So she became Maddie at just over two years… unfortunately her baby sister Abbey had already been named. I will never get the two names right in a sentence.

Writing for Joy

I love words. I write for fun. Scrabble is my idea of the perfect game. I couldn’t comprehend raising a child for whom this might not be a possibility. Maddie made rapid gains in language once she was hooked up with her CHIP facilitator, who helped us see through careful assessment that her strongest skill was gestures, and how she used them to communicate with us. She wore her hearing aids without much fuss (other than in the noisy car). By the end of her preschool years she had sight words, she was writing, talking, signing, and making her every opinion known. While she did have a 10-decibel progression in her hearing loss at age 4, the new digital aids seemed to help her hear better than before. Maddie has been lucky to have had many, many creative and smart teachers, therapists, and audiologists on her team. I also count the many parents I have met and learned from as crucial members of her support force. In third grade, she left the cocoon of the centerbased program we all loved for the stronger academic challenge of her hearing peers and the neighborhood school, and she did well. Of course, there are many pros and cons to that choice. She has both friends who hear and friends she cherishes who are deaf/hard of hearing. She knows deaf adults that she looks up to. She hopes to be a paramedic so she can “save people and drive fast through red lights.” At age seven, she lost the rest of her hearing that got her anywhere near the coveted “speech banana” and made hearing aids useful, and she lobbied us hard for a cochlear implant. It is serving her well. (See Maddie’s Choice on the https://handsandvoices.org website.) I have no doubt that she will continue to be her own best advocate.  One day I shared with her the usual statistics about reading levels in deaf students, and she said and signed, “That is not going to happen to me.”

Her midwife? Pam went on to develop a hearing screening system for all babies born at home in our community, and works closely with the HCP staff on this task.

We can’t imagine life without Maddie, just as she is.

Regrets – I have a few (music swells.)

Just one big regret. I buried myself so much in Maddie’s education that I didn’t notice how this impacted our lives. My older kids had fewer activities, date nights were rare, and everything was about learning and hearing loss.  I would like to remind parents to make sure they make time for their marriage and take time off just to enjoy this child and all your children. Perhaps this sense of urgency hits late-identified families harder and there is indeed so much time that has been lost. But the occasional day at the lake or a night out with the person you promised to love and to cherish is sometimes more needed than an appointment with the Professional of the Day. You can do this, too, and you can help your child better than the parents who went before you.

Parent Guides are happy to share what they learned along the way with you and help you answer questions you have not yet imagined.

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 5^th 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. =)