Raising a Deaf or Hard of Hearing Child

(By the way, this isn’t an article about how to get your child into a deaf university or any university. It’s about a moment as a parent when you consider the future – the unknown – and your course changes a little bit. A little bit for the better.)

By Scott Smith, Nebraska H&V

My wife or I have been on the Nebraska Chapter’s Board for a few years now. Back in 2016, we decided to go to the Leadership Conference in Estes Park, Colorado. We networked with people from all over the Midwest and from all over the country: parents, deaf adults, medical professionals, and teaching professionals. It was great. They covered all manner of topics from technical updates, to building stronger Chapters, to legislative highlights, to restorative self-care classes, and yes, there were some touching moments that pulled a few tears.

Let me stop a moment and say, if you are reading this, you are likely a member or are supporting Hands & Voices. (Soapbox: On) Consider becoming involved with your local board of directors. These are usually a bunch of cool parents, cool professionals and cool deaf adults that want to help other parents of deaf and hard of hearing children in some of the unique challenges we face from day to day. Someday you will have the opportunity to go to an amazing event like the Leadership Conference. It will have a positive affect on you as a parent. (Soapbox: off).

Disclaimer: I am not cool.

We started this journey when our son was born hard-of-hearing in 2007. Due to trauma during his birth, some of his fine motor skills in his legs, arms, including his finger and hand muscles and some of those in his lips and tongue are affected. Like all of our children, Charlie is a blessing and has changed our lives in wonderful ways. But for Charlie, and even for our other three children, we don’t know what the future holds.

During one of the breaks at the conference I walked through a hall of exhibitors on my way to the snack table. “What is that?” There was a booth for Gallaudet University and the National Technical Institute for the Deaf at the Rochester Institute for Technology was also there. After a few minutes talking to the representatives, I got to thinking about college. I had never thought about college for Charlie. Well, let’s just say we hadn’t spent a ton of time thinking that far ahead. (By the way, this isn’t an article about how to get your child into a deaf university or any university. It’s about a moment as a parent when you consider the future–the unknown–and your course changes a little bit. A little bit for the better.)

Like I said earlier, we don’t know what the future holds for our kids. I’ll be honest; I was more worried about Charlie graduating from high school. On the way home from the conference, I was really in my head. “What can I do? What more can I do?” My wife and I work full time, which sometimes require travel and extra hours. We also have three other children. I am blessed to work for an employer that gave me the opportunity to go from a 40-hour work week to a 32-hour work week. First off, shaving 20% off the family budget was difficult. But it gave me the time to become more familiar with Charlie’s school friends, school staff and curriculum.

A friend was teaching a chess club for third through sixth-graders at Charlie’s school, and asked if I could assist. I know more about Gallaudet than I do about chess, which means “not much”. I said, “Sure. Can Charlie join?” He said yes, and two weeks later, I was helping teach chess and chess-related signs once a week to students in the club. In the spring of 2018, Charlie played in a school chess tournament and had a 2-1-1 record and did pretty well. He wants to play again this year. That probably wouldn’t have happened if we hadn’t thought about working toward college and taking the leap to lower my work hours.

Next year, Charlie transitions from elementary to middle school. Our department of education closed our Nebraska School for the Deaf many years ago. We are faced with various blends of mainstreaming through middle and high school. As parents, we do not feel Charlie will have much success with this approach. So our next big adventure may be obtaining residency in a state that has a school for the deaf. Maybe in six years, I’ll write an article on how to get your Deaf Plus child into college. In the meantime, I look forward to the moments that will change the course of my family’s life a little bit, just like the Leadership Conference did for me. Those moments opened a multitude of doors that have provided experiences for Charlie and me that we never would have had…experiences that make the unknowns ahead less daunting.

The road we travel TOGETHER: Our Family Journey

By Rosabel O. Agbayani, MPH

“If you want to change the world, go home and love your family.” -Mother Theresa

Sometimes we think that in order to make change we have to make a lot of noise. What I have learned from my experience of raising my children, and especially raising my deaf child, is that you have to be able to drown out the noise and listen to your heart.

We found out my son was deaf in September 2010. I’m not sure why I was so shocked because after almost six months of testing we finally had an answer. But I still remember that feeling when I heard the words “Your son has a hearing loss.” My heart sank, tears fell, and this overwhelming feeling of shock took over. The Audiologist had many well-meaning things to say. But I felt like I was in the scene of a Charlie Brown cartoon when the adults talking sound like jibberish. All I could focus on was “What was my son’s life going to be like?” “What is our family’s life going to be like?”

We came home from that appointment and I felt defeated. But with a six-month old infant, a teenager, and now a Deaf child, I had no time to feel sorry for myself. So I spent most of my time on the internet looking to find every answer to calm the worries in my head. We asked for second opinions, I went through parent training modules, but there was no place in the internet that reassured me that everything was going to be okay.

Reaching out to family had challenges of its own. Those closest to me felt pity for our circumstance. Pity was not going to help me, so I found myself getting angry with them and frustrated having to explain what I was trying to do for my child.

To further complicate the issue, in my culture and within the community of family, disabilities is not something to be discussed. Filipinos have a tendency not to share, for fear that if others realize our weakness then we, ourselves are perceived as weak and therefore bring shame to a family. So even in my own family I felt lost and out of place.

In fact, we lost a lot of friends and family along the way. Well-meaning individuals who would minimalize his hearing loss, or say things like “Well just get a set of Rosetta Stone and he will learn language like normal.” One of the most hurtful things I witnessed was at a family party when my nephews were playing a game of “Can you hear me now?” They would walk around my son asking him if he could hear them. Because my son is the playful type, he innocently went along with the game while they laughed at his expense. It was then that I realized the true meaning of “You must learn to walk away from the things that no longer serve you.” It was a painful but necessary lesson. Their noise was clouding my vision.

The first time I ever felt “normal” again was in February of 2011. We had just fought and won our first battle to get our son into the only non-public oral deaf school in our area (a story I will leave for rainy day). I remember clearly his first day, walking through the gates of Oralingua School for the Deaf in San Marcos, California. We were all welcomed and greeted by mothers who were so excited to see another child admitted to the program. There were only six children at the time and my son made the 7th student at the school.

I finally felt at home with our new community. When our kids were busy learning, the parents (we proudly referred to ourselves as the “Parking Lot Moms”) would gather at the local coffee shop and share our stories, retell how our children were diagnosed, explain how they got to the school, and their journey. With each story I heard, my heart felt at ease. Finally, I met another parent who understood me. I didn’t have to speak but just listen. Every word healed my soul. Till this day, these mothers are like my sisters and our children are like siblings from another mother.

I realized early on how important it was to have this kind of network when you are going through something unique and unfamiliar to you. Parents can benefit when we learn from each other. When we can listen and share the choices we have made with each other. We learn to open our minds to new ways that we can help shape our children’s future.

At the time when my son was diagnosed, I only knew three people who were Deaf. My Uncle (my mother’s youngest brother) who had been deaf since he was an infant, an Uncle who was late deafened as an adult, and a friend I met later in life. I asked so many questions at the time. I wanted to know what their lives were like, what challenges they had to overcome and how they got to be who they were today. Deaf adults have a significant role in our understanding as parents. I learned that they have something I cannot give to my child, an insight to the Deaf experience that was critical for my own understanding.

I especially remember talking to my friend and asking her about her hearing aids and school. I was so focused on the technical aspects and she kindly responded to all of my questions. She shared about her experiences growing up in the United States when her parents found out she was deaf. Her mother sacrificed everything she had, left her husband and their life in the Philippines, and brought her and her sister to the United States so she could have a better life. John Tracy Clinic had an international program at the time and she had the opportunity attend the school. It was then that I started to think that maybe our problems were not necessarily about my son’s hearing (I can never change that), but about giving our deaf child opportunities so that he can be the person he is meant to be.

As a parent of a child with special needs, you go through many cycles of joy, pain, confusion, and brief moments of clarity. Some days you just lose it, it comes with the territory. It doesn’t have to be anything significant that happens but some days are just tough.

I remember one day, it was just like most days. I was carrying my twelve-month old in my arms, dropped off my eldest at high school, and went to the hospital for one of my son’s many appointments. I must have been very exhausted because after one of my son’s back to back appointments I just sat in my car and cried. The emotions I held in my heart just suddenly overwhelmed me. Beaten and broken, I wanted my faith to show me a sign, anything to help me understand why life had to be so hard. I was never angry that my son was deaf but I was frustrated because I didn’t know if what I was doing was ever going to be enough.

Suddenly, my three year old deaf son (who had just learned how to put 2-3 word utterances together) looked at me, wiped the tears from my eyes, and said “Mom, why cry?” His sentiments made me smile. I just gave him a big hug. It was what I needed at just the right time. From that moment on I realized, there was NOTHING wrong with him. He didn’t know any differently that he was different. My answer was there beside me, telling me that I was doing EVERYTHING right. In his beautiful world he didn’t know he was “deaf”. All he cared about was that I loved him. I was the one who was broken and HE was the one who fixed me!

Sometimes we get so focused on taking care of others needs that we fail to tend to our own needs! Our kids need us to take care of ourselves! It is as much a priority as our responsibilities as a parent! When you are on a plane they instruct you to put your own oxygen mask first before you do it for your child. I needed my air so I could breathe and think clearly. Then I could refocus and care for the needs of all of my children.

When I finally stopped feeling sorry for myself, I got myself together, and started focusing on my own needs. It had been six months since I got a haircut and it was one of the first things I did for myself. I forgot how good it felt to feel “normal”. Little by little our lives transformed and we found our “New Norm”. I made it to the gym, spent time with friends, and enjoyed my family time.

It was important for my husband and I to spend time together finding moments of joy with each other, despite the hardships we were experiencing. We squeezed in date nights when we could, even if it meant driving in the car till “The Littles” fell asleep to have ice cream cones together. It’s those sweet moments that I cherish the most.

My husband is a hard worker. He worked full-time to support the family while I was busy managing our family business, taking care of the kids, and driving to appointments. When I needed rest or a moment of sanity he gladly stepped in and did his daddy duties with pride. We spent a lot of time talking to each other as a family, having conversations about everything. We love to travel and we learned from our experiences together.

We knew that if we were going to help our son communicate with the world we needed to learn how to communicate as a family. Because when you have a deaf child, you become a deaf family. As with most families, the diagnosis of having a deaf child changes your life and the dynamics of a family. This was not our weakness, it only made us stronger.

My son’s diagnosis changed me too! I have always been a bookworm and self-proclaimed nerd. So when life settled to a comfortable pace, I went back to school and started online classes to earn a second bachelor’s degree in Communicative Disorders and Deaf Education at Utah State University. I graduated on the Dean’s List in 2013. I always felt lucky that I had the kind of training that most of my fellow classmates didn’t have. Regardless of my degree, I was a parent first. I used my new found knowledge and taught my son how to read and write. I learned to communicate with him and create opportunities for him to learn how to communicate with others. It was exciting to use the tools I learned and see my son’s progress. I was fortunate to have on the job training! This knowledge helped me create better relationships with his educators. I knew that if he was going to meet his goals, as a part of his IEP team, we needed to work together.

When my son was mainstreamed in our home school I decided to take a job as an aide in a Special Education classroom. I worked my way up to becoming a Behavior Intervention Instructional Assistant working with kids on the Autism Spectrum. I also volunteered at the local Children’s Hospital working with kids who were Deaf and Hard of Hearing. I also volunteered briefly for an Audiology office observing Aural Habilitation techniques used for kids with Hearing aids and Cochlear Implants.

My work experiences helped me have a different perspective compared to working with my own child. It helped me understand that professionals have a responsibility to heal, to habilitate, and to provide a service that meets a specific need for our child. But that does not take away from the real learning that comes from home. As a parent, our job is to meet professionals and educators half way. They hold the piece of the puzzle that we need to understand our own journey. It’s our job as parents to put the pieces together in a way that fits best for our family.

As a parent and a “wannabe” professional, I met Auditory Verbal Therapists, ENTs, Speech Pathologists, Occupational Therapists, Reading Specialists, and Deaf Educators and Specialists along the way who gave me different tools to use. I like to think of these moments like a trip to the “Special Needs Home Depot”, you can fill your toolbox with many tools and use it if (and when) the time is right. I filled my head with a lot of information, gave myself the opportunity to fill my toolbox as much as I could. I didn’t want to miss the opportunity of having something fit just right for my family or for the children that I worked with. My advice for new families is to always keep that toolbox open and learn as much as you can! Together with your child you can figure out what works best!

In 2015, I got my first job working on a research project studying outcomes of Deaf and Hard of Hearing Children with Cochlear Implants. Having a better understanding of the CI candidacy process and collecting data from educators helped me understand the many different factors that can influence a child’s ability to succeed academically as well as communicate effectively. The bottom line (as a parent by this time I was NOT surprised) family involvement in their child’s education has a positive correlation to overall success.

Because I was no longer just on the receiving end of services, I gained a newfound appreciation of the fact that we all have different perspectives, but our hearts are in the same place. Professionals, even those who think differently, expect different outcomes, or provide a viewpoint different from ours also want the best for our children. We are more alike than we are different. I often think to myself, “Imagine how much we can accomplish as a group if we focus on the sameness and not differences.” Our children need us to work together.

Togetherness is a concept that speaks to the core of what it was like for me parenting a child who is DHH. It is a re-occuring theme in my life, in our journey as a family, and now for me as a professional. When everything was falling apart, I struggled to keep my heart, my family, and my community together. Some days were better than others and progress was not always perfect or prompt. What gave me hope when times were tough was realizing that along the road, I walked the journey with people (my son, my family, DHH parents, and everyone else that crossed my path) who reminded me that I was not alone.

It seems like a lifetime ago when my son was diagnosed. My son is now 11 years old, entering his last elementary school year in the 5th Grade. He has friends (both hearing and DHH), plays baseball (his favorite positions are 3rd base and catcher), loves Hip-Hop music, and annoying his two siblings. My eldest daughter, a senior at CSUN in the Music Therapy Program and President of the Music Therapy Student Association, hopes to pursue a career helping others with specials needs. My youngest daughter (who is now eight years old and grew up alongside our beautiful journey) has won awards at school for good character, recognized for being kind and having compassion for her fellow students. My husband and I can only look back and think about how far we have come. Married for 10 years and after everything we have been through, we live the truth of that “which does not kill you will only make your stronger”! Our lives have never been without struggle, but we wouldn’t change a thing.

Currently, I work as a Pediatric Clinical Research Coordinator for Rady Children’s Hospital in San Diego, I serve as PTA President for my children’s school and on the Community Advisory Committee for Poway Unified School District. Most importantly, I remain committed to my role working with California Hands & Voices helping to build bridges between parents, professionals, educators, and others in the DHH Community.

Together we grow. While my son was learning how to speak, learn, read, write, communicate; I was learning too! When he struggled, I learned how to help him succeed. While his knowledge of the world around him grew into his identity, his identity defined who I am today. His deafness helped me learn how to listen to my heart and my heart allowed me to follow my passion.

Healing begins when you can find purpose in your pain. What started off as a desperate mom looking for answers has led me on a path where I have combined my real life experiences as a DHH mom with the knowledge of as a Professional. Because of this, I feel a responsibility to share my unique insight with others. Everyone has an important role to play. As Parents, Deaf Children, Deaf Adults, Medical Professionals, Educators, Researchers, and Advocates we all have the power to create a community for DHH Children and their families…TOGETHER.

By: Kristi Riley

One of the big questions researchers have in the D/HH and autism world is, how do you tell the difference between hearing loss symptoms and autism symptoms? As a mom of a child with a severe hearing difference and a child with both mild autism and a mild hearing difference, I have gotten to see first hand what some of these differences may look like. I am in the process of earning my doctorate degree in clinical audiology at the University of Wisconsin-Madison. I am also a family trainee in the Wisconsin LEND Program (Leadership Education in Neurodevelopmental and Related Disabilities) at the Waisman Center, where I have learned about different developmental disabilities in children. I was recently trained through LEND on how to administer the ADOS. I have friends who are D/HH and friends who are on the autism spectrum. I can tell you for certainty that narrowing down the symptoms of hearing loss and the symptoms of autism is no walk in the park, and requires the subjective feedback from both parents who know the child best and the objective analysis of trained professionals.

In 2012 when my daughter Lauralee was born, she failed her newborn hearing screening. Right away, we were whisked into bimonthly audiology appointments. Being music teachers at the time, my husband, Justin, and I were concerned not only about her ability to enjoy music, but her ability to gain access to language and literacy. If you can’t hear, you can’t speak. If you can’t speak, you can’t read. If you can’t read, then just about every subject that crosses your path is affected. (Who cares about aspirations of Julliard!) Learning to talk, read, then write affects every single subject in school. Lauralee was not officially diagnosed until 6 months old. She did not get her first pair of hearing aids until she was 11 months old. We were worried about her language development.

Lauralee has always been very alert and interactive. She has always made good eye contact and loved to play. She is goofy and is such a joy to be around. Even though she did gain the stereotypical “mama and dada” babble in the first few months, she mostly talked with her facial expressions. I decided to get the Signing Time DVDs, and she and I soaked-up sign language. It was like we had our own “secret language”. I always felt like we had a deep connection. Sometimes, I seriously questioned whether she was truly deaf or if it was all a big mistake!

In 2014 (right after I started my path to audiology), we had our son, Oliver. He was such a beautiful baby and I was ecstatic to find out he passed his newborn hearing screening. Even though he had a short NICU stay after he was born, he ultimately seemed healthy in every way. When we brought him home, right away I noticed he was a little different from Lauralee. He was fussier and cried a lot. I chalked it up to being a different personality. Besides, I was a fussy kid too! I’ll never forget, at around 7 weeks, I was holding Oliver in my lap attempting to do face time. He would not look at me nor smile. He seemed so disconnected. I would force my face into his gaze until I got a reaction. But ultimately, I did not connect with him like Lauralee. I felt guilty.

When Oliver was about 3 or 4 months old I started subbing at a local daycare. Oliver stayed in the infant room while Lauralee was in the 2-year-old room. Lauralee was immediately the “favorite friend”. Kids would follow her around because she was so expressive and out-going. She caught-up academically and knew all her letters and sounds by the time she was 3. Oliver, on the other hand, was making minimal progress. He had little ticks like “twinkle hands” when he was curious, leg tensing and screaming when he was excited, and head shaking when he was bored. He did not learn to sit until he was over 10 months old.

When Oliver was around 12 months old, I contacted birth-to-3 about my concerns. He started receiving OT services right away. Weeks went by and Oliver did not learn to walk. He resisted every idea the therapist had. One night while crying my eyes out, my husband told me about this place called the Wisconsin Early Autism Project. I doubted autism because Oliver was gaining language and had okay eye contact but I went along with the idea just in case…

Two summers ago, I realized Oliver was saying “what?” a lot. Sometimes he would ignore me all together. He had not yet started autism therapy, and I wondered if it was his hearing. On a last ditch effort to prove it was NOT autism but something else, I asked my professor if we could test him. She agreed.

Testing day was a nightmare and an absolute embarrassment. Oliver screamed bloody murder in the sound booth and was ultimately untrainable. We waited six months and got a few frequencies. We waited another couple of months and got a few more frequencies- my professor is amazing! Ultimately, it looked like Oliver DID have a mild hearing loss in one ear (which newborn screenings do not catch). (YESSS!) We confirmed objectively through ABR over the summer. Even though he had a mild loss, my professor made the point that the loss would not affect his language development nor his behavior. The autism diagnosis stuck. (Darn.)

I have finally come to terms with Oliver’s diagnosis. I don’t know why it took me so long. Maybe because there is a stigma about autism or a stigma about children with “poor behavior”. Lauralee made me feel like an amazing mom. Oliver challenges me every step of the way. Looking back, there’s no doubt Oliver has the right diagnosis. And to tell you the truth, he’s a good little boy.

Both autism disorder and hearing disorders are a spectrum. Every case is different. Someone could have the exact same audiogram as Lauralee but be affected more. There is so many intricate connections between the peripheral hearing system and the cortical synapses in the brain where hearing and cognition happen that something could go haywire at any point along the auditory pathway. Some one could have mild autism like Oliver but have a completely different set of abilities or behaviors affecting everyday life. Because of all these factors, it’s hard to truly come up with a set of “symptoms” that separate autism and hearing differences.

Maybe rather than separating the disabilities as two separate entities, maybe hearing loss is a symptom of autism. Autism on a basic level is caused by sensory wiring differences in the brain. There have been several studies showing the autistic auditory pathway is wired differently from the neuro-typical pathway. Perhaps hearing differences, whether peripheral or cortical, are a common symptom of autism. But the social insufficiencies that are commonly associated with autism do not translate to a person with deafness.

People who are deaf but given adequate language access through sign or otherwise, develop socially normal. Yes, a person may have to grab their attention differently but ultimately a deaf person is very socially aware. Autism can make a person seem “deaf” because they lack social cues like eye-contact and quick verbal responses. Neuro-typical people with deafness do not lack these social differences when given the chance to communicate. You can see it clearly in my children, but we are only one example on the entire spectrum.

Growing up, even as a child of the 80s, I’ve have never been great with technology. I can post pictures on Facebook and record my favorite Housewife reality show on my DVR, but nothing much more advanced. When our family began our journey with two children with hearing loss, technology was an idea that terrified me. As I began my research after our children were diagnosed, I quickly felt that without getting an engineering or medical degree in my spare time, I would never understand the explanations I was given for the equipment being used to identify their hearing loss–nor the technology being suggested to help my babies hear better. Our son Harrison was identified at birth and our daughter Alexis was correctly diagnosed at four years old after a misdiagnosis at birth.

I thought my involvement with hearing aids stopped at picking out cute colors, not learning a second-language to understand words like hertz, tympanograms, sensorineural, and cookie-bite hearing loss (a configuration of hearing loss with less sound perception in the middle frequencies). I felt like I was drowning in a sea of alphabet soup with all the ABRs, OAEs, ENTs, FMs, IEPs and IFSPs. Dealing with all of this while adjusting to being a new mom of three children all under age four was too much for my sleep deprived non-technical mind. For the first few months, I put the dreaded “T” word out of my mind, vowing only to deal with it on an ‘as needed’ basis as they entered school.

As the years went on, and my kids got older, I noticed how my lack of knowledge for technology was limiting them, both in and out of the classroom. My children were having problems with their FM equipment in their schools, and I didn’t know what other options there were. My son was beginning to struggle hearing his soccer coach as the fields got bigger and instruction was coming from further away. My daughter began to shy away from popular adolescent activities such as talking on the phone and going to movies because she could not hear the words clearly. I watched how different my middle son Cole, who has typical hearing, was moving through life compared to my two kids with hearing loss.

Motivated by Necessity

I decided it was time to embrace my fear of technology and, along with my children, learn all I could. I began researching personal FM systems, personal closed captioning devices, closed captioning devices available in public areas, captioned telephones–anything I could find to help bridge the gap so my kids could participate as their peers did. Along with community organizations, school professionals and various websites, other parents of kids with hearing loss were the most helpful in sharing what worked and didn’t work for their kids and guiding me to available options. There has been lots of trial and error, and it’s still a dreaded task for me to research technology. Yet we’ve learned which movie theaters provide our preferred “rear view mirror” closed captioning devices rather than the “captioning glasses”. We’ve experienced which captioning devices are out of range in the balcony seats at our local playhouse. We’ve purchased personal FM Systems and devices to connect hearing aids wirelessly to TVs/music/computers for our children to use outside of school in various activities. We can’t wait for the weather in Las Vegas to cool down and we can wirelessly connect our stereo to the kids’ hearing aids at the drive-in theater so they can sit outside the car and still hear the movie! We’ve downloaded apps and received a telephone from a local deaf/hard of hearing services agency so they can have their phone conversations captioned. The kids have their own bed shaker alarm clocks to help with independence. While having access to all our technology definitely makes life easier, it does not solve all the issues my kids have faced. Simply knowing what options are available (and knowing our kids’ rights through IDEA and the ADA – Americans with Disabilities Act), my husband and I have had educated discussions with the schools and professionals and offer solutions to problems.

Finding A New Passion

To my surprise, all this technology I had been dreading for years wasn’t all that scary. The most surprising element in giving up my own fear was the fact that my daughter discovered her own passion for technology as it pertained to her personally having hearing loss. Beginning last year, our children began attending school at a STEAM Academy (Science, Technology, Engineering, Art, and Math). Our daughter especially began to embrace her hearing loss and used it as the basis for every technology based-presentation she could, including “The History of Hearing Devices” and “People Who Are Deaf/Hard of Hearing Can Do Anything”. She recently attended a Girl Scout summer camp focused on technology, and her final project was to code a computer game. While I can still barely turn on a computer without reading the directions, I was not only amazed she generated a “Choose Your Own Adventure” type game, but that she chose Heller Keller as the main character. She navigated her “Helen” avatar on journeys all over the world for other kids to learn about her experiences. Watching my daughter present this computer game she had coded by herself brought tears to my eyes. I remembered how terrified I was six years ago at not only the thought of how to raise children who had hearing loss, but also the responsibility of understanding the technology that tends to come along with our kids. In an instant, my personal journey with technology, while never-ending, had come full circle. Letting go of my own past fears was the true gift I can give to my children. And, thanks to my technology-creating daughter, I can now quote Helen Keller as saying; “Fear: the best way out is through.”
Editor’s note: Jones serves the NV Chapter as Guide by Your Side Coordinator.

This article and many more are found in The Communicator. To receive quarterly issues:  The Communicator.

“Information helps you to see that you’re not alone. That there’s somebody in Mississippi and somebody in Tokyo who all have wept, who’ve all longed and lost, who’ve all been happy. So the library helps you to see, not only that you are not alone but that you’re not really any different from everyone else.” -Maya Angelo

In the 90’s, there was no Google website to go to when you wanted to search for tips on teaching your deaf child how to speak. There was no online forum where you could talk with other parents in your shoes in order to find out what worked for them. There was no app on your phone to help teach you ASL. Parents were left to their own resources and gut instincts, they were left with vague recommendations from their audiologists, and they were left with hand scribbled landline phone numbers of someone that had a deaf child.

My parents were in those shoes of not knowing what laid ahead for them. They had just been told that their 15 month old baby daughter was profoundly deaf in both ears as a result of Meningtis. They lived in rural Minnesota in a town of 1,200 people. The only deaf people in town were 80 years old or more. My parents desperately needed a family to empathize with and to relate with the issues they were going through.

The moment that gave them hope was getting a phone number for a couple in the Pilot Parent program. Dennis and Deb were the parents of a girl who also had Meningitis as a baby, and had been deaf for about 5 years. This family was the Morrows and they were our saving grace. Over the next decade, our moms became very close and learned to rely on each other. There were many phone calls to ask:

“Is this right?”

“Is this normal?”

“Tell me I am not ruining my baby…”

With everything they shared, the most important thing Deb told my mom was, “You will meet a lot of experts that will tell you what to do, but remember, the most important expert in her life will be you.” We were one of the lucky families, not everyone was able to find this type of guidance.

CHALLENGES BEYOND THE FRIENDSHIP

No matter the motherly advice my mom received from this family, there was always still a lack of professional advice based on real life cases. One of her biggest struggles was that she was not sure what accommodations the school system was legally required to offer. In an effort to know more, she joined a state board in order to surround herself with others who knew more.

With this support system, she was able to understand so much more when it came to IEP’s and services. In fact, with the expertise of other board members, I was the first D/HH child in Minnesota to have the public school system help financially with an interpreter within a private school. I did not stay long at the parochial school but it was something that my mom’s hard work and research helped make happen.

A significant lesson that my parents learned right off the bat was that you can and should try every tool out there. Each person is different and each person will benefit differently. Instead of looking at different routes as successes and failures, they looked at them as crossing out the items that didn’t work and keeping the items that did. There were many things that worked for us, and even more things that didn’t.

“YOU WANT THREE QUESADILLA MEALS!?”

We had a rule they made when we went out to eat because dining out was a chance for my parents to teach me how to be assertive. This story often makes my parents seem like they did not care, but it is the opposite… They cared so much that they struggled to watch me go through the situation of dining out. They started me with this practice at a very young age.

When it was time to order, whether it was McDonalds or Perkins, I was left to fend for myself and it would be a conversation between the waitress and me. If questions were asked by them, I had the chance to smile and nod or I had the chance to ask them to repeat themselves.

For many years, my dad did not order a meal for himself because they knew with certainty that I would not get the food I ordered and he could eat my food. In fact, when I was 16, I accidentally ordered three quesadilla meals instead of three quesadillas. That was a $48 mistake…

As a child, I was the picky eater who would order a cheeseburger with no mustard, no onions, and no pickles. After smiling and nodding at the clerk, my order would come with extra onions, extra mustard, and pickles. My mom would just hand me more money and send me off for a second chance.

For years it seemed like I would not learn, but slowly and surely I began to ask the waitresses to repeat their questions, I would tell the cashier that I was deaf, and I would repeat my order back if needed. Now, as a 30 year old woman, I am confident going through a drive through and telling them I will see them at the window to give them my order.

“I’M A BARBIE GIRL, IN A BARBIE WORLD”

Music was one of those things that we struggled with trying to figure out. When a kid with hearing aids wants to learn lyrics to a song today, it’s easy to go to MetroLyrics or Lyrics.com. A song can be played on repeat until the feeling of the beats becomes natural and the words become second nature.

I grew up in the days where radio was the source of music and songs could not be played on repeat on iTunes or YouTube. There was no way to look up lyrics beyond learning them from sound.

In true family love fashion, my parents and sisters came together to make music work for me. My older sister, Dani, would sit in the car and record the radio to a cassette drive. Then, my mom and dad would listen to the cassette and write down the lyrics on a sheet of paper. They would have to listen very carefully, mulitple times, in order to make sure they were on track with the words. To this day, my mom always laughs and says that no grown man should know the words to “Barbie Girl” by Aqua.

There are going to be challenges and there are going to be solutions. The solution might not be ideal, but there is almost always a way around it.

THE FUTURE IS BRIGHT

If there is any advice I have for parents, it would be that the future is bright. There are so many opportunities out there for support and resources. I would be confident saying that my parents would be jealous of the options out there today as you begin this journey with your D/HH child.

Take advantage of everything you can get your hands on. Go to the family camps, try out the different technology options, follow blogs of those who have gone through this already, and never set limitations for yourself or your child. And if all else fails, at least you have Google, Siri, and Alexa to ask for help.

I was wearing my “What’s your sign? ASL” t-shirt one day when a friend pointed it out and asked, “Isn’t that showing your bias when you display your communication choice? I thought Hands and Voices was ‘neutral’ when it comes to favoring communication choices?”

There are often a lot of misunderstandings about supporting families with deaf and hard of hearing children without a bias toward communication choices. “You can’t possibly provide support without bias,” people often challenge us at Hands & Voices.  I frequently see the word “neutral” associated with the idea of supporting families. In fact, I wrote about it here: Neutral is a Shade of Color, Not an Organization.

If anything, the opposite is true. The people who become a part of Hands & Voices are pretty passionate about a lot of things when it comes to supporting families with children who are D/deaf and hard of hearing. When you truly operate without bias–you are able to join a variety of organizations, mingle with people from every communication experience, be comfortable with every combination of choice, and open-minded about the experience of raising D/deaf and hard of hearing kids. No one blinks twice when you attend an event centered around a certain communication philosophy or technology. Because at Hands & Voices, we know that the more you learn, and the more you experience, and the more you open your mind–the more you can provide to families on the parenting journey.

Here’s more on Supporting Families without Bias.

Yes, you CAN celebrate your own experience, choices, and journey. You CAN share your expertise and experience in ways that do not manipulate another person’s journey. You CAN mentor/guide/educate without the intent to manipulate, belittle, or manage a family’s experience.

I have often said, “My journey does not define your journey.” Families can take what they want and need from my experience and frame it into ways that helps their own experience. There’s quite a difference in saying, “Let’s explore ways you can provide communication access for your child,” versus “I think you should provide your child with _________.”

You can take the journey “with” the family, not “for” the family.

In my early days of being a Deaf Mentor in early intervention, I had families who opted for cochlear implants for their child. They asked me questions that I didn’t have answers to–I had hearing aids. So we learned together. I brought in others who could answer the families’ questions. I went above and beyond to learn everything I could. I went to the hospitals and provided support before and after surgery. That’s just one example of how you can provide support along the journey–even when the family’s experience is quite different from yours.

When people meet me, they often make assumptions based on my expression of communication. They usually throw me in one communication camp or other, based on what they see/hear at the time. What saddens me is that I come across this communication marginalization almost on a daily basis. Through my work with families and young deaf and hard of hearing adults I see this happening all the time: separation, judgment, and segmentation based on communication skills and choices. I’ve seen families torn to shreds on the web about the choices they make for their D/deaf or hard of hearing baby/child.

It breaks my heart.

I believe in the mission and the purpose of Hands & Voices:

Hands & Voices is dedicated to supporting families with children who are Deaf or Hard of Hearing without a bias around communication modes or methodology. We’re a parent-driven, non-profit organization providing families with the resources, networks, and information they need to improve communication access and educational outcomes for their children. Our outreach activities, parent/professional collaboration, and advocacy efforts are focused on enabling Deaf and Hard-of-Hearing children to reach their highest potential.

I’ve said this before, and I share it here again:

At any given time, Hands & Voices is whoever is a part of the organization. Families and individuals are not the sum of their communication experience and we don’t identify our Hands & Voices organization merely by those choices. We do our best to include everyone who wants to be a part of the movement of providing support without bias to families. Whenever we stumble along the process, we try harder yet again. The bottom line is to support families along the journey of raising deaf and hard of hearing children. We all have the same goal in mind: well-adjusted, successful kids.

As for being “neutral,” to me, that’s a shade of color, not an organization. What I love seeing instead is an organization that is passionate, vibrant, and colorful– an organization which is made up of amazing, diverse families, professionals, and individuals who celebrate the many different ways there are of being Deaf/deaf and hard of hearing.

Now that’s Hands & Voices. And I invite you to be a part of it.

www.handsandvoices.org 

Karen Putz

Growing up, I never saw myself being the parent of a deaf child. Although my mom and brother are hard of hearing, it was never more to me than just part of  who they were. It wasn’t even that big a deal in my household.

The only deaf person I recall knowing aside from them was a friend from high school.  But again, it was just part of who he was.

We didn’t even think much about deafness until we started learning sign as a communication bridge for our youngest children. We started learning to sign when our oldest daughter was one year old and I was about 4 months pregnant with our youngest.

After we started learning we wanted to know more. We became involved in a deaf ministry near our home and started taking classes through Sacramento State.

Little did we know, it would lead us to deaf adoption–and three years ago we brought home our son. Lots of time during our adoption process was invested in trying to figure out what was right for us. Everyone had an opinion. We even had some strong ones of our own, but that all changed the day we met him.

Suddenly it wasn’t about what was best for us, but what was best for him. It wasn’t about what we envisioned, but the potential we saw in him. Our first night with him he was so starved for communication that he soaked up around 65 signs.It was impressive  the amount of language he  gained in those first two weeks, after 8 years of minimal language.

At some point early on with us he discovered there were two worlds going on around him. Until he saw us signing with him and talking with each other, I don’t think he realized that sound actually existed.

He became enamored with the concept of sound and discovering how it works.

At that point we began to question our own biases. This was all unraveling as we watched a friend struggling with outside opinions of her son getting implanted. Was that a battle we even wanted to tackle?

We realized that no one had to answer to him but us, about what tools and opportunities we did and didn’t provide. We decided that any issue someone had based on a choice we felt was right for our child was not our problem, but theirs.

We opted for the implant and he was well on his way to discovering a world with sound. Unfortunately,  it malfunctioned a few months in, despite every effort to correct it.

We’ve since opted to do a 2nd surgery to see if replacing the internal equipment will correct the issue. We are optimistic, but no matter what we know we can stand before him and say “The only thoughts that mattered were yours. We followed your lead.”

The most important things we’ve learned through this whole journey are:

1. That WE are the experts in our child. No one else has been assigned the duty to love and care for him and provide his physical,  mental, emotional, and linguistic needs.

2. It is important to surround yourself with people who support, love, respect, and understand you. Even if those people haven’t or wouldn’t make the same choices for their child that you would. They fully understand that you have the most skin in this game. No matter what, as parents we always do the best we know how and we will never get it perfect.  Despite what others think, no one has a perfect answer for raising ANY child.

3. Every child is different. Even if they are in the same household.

Remember, we started signing with our oldest daughter. At the time, she was believed to have normal hearing. That has since come under question in the last year. The supports we provide for her aren’t the same as for our son.

There is no one size fits all. They have completely different needs and what would work for one isn’t as helpful (if at all helpful) for the other.

I encourage you to stay strong, be your child’s loudest advocate, and know that it is okay if you switch gears or make mistakes.

As parents of deaf children, we face challenges that most other people don’t have to consider in everyday life. The only thing we can really do right is to give it our all and hope for the best. Most of all, know that your best is going to be different from someone else’s and that’s okay. 

We are the Albers Family, a homeschooling family of nine with two children who have severe to profound hearing loss. We entered the deaf/hoh world three years ago when we adopted our son, Matthew. He was five years old with severe hearing loss. We were told that he could hear and talk with the help of his hearing aids. We thought, Okay, we can handle that! We knew that his hearing loss might be worse than what was presented in his file, but we clung to the hope that he could hear and talk with his hearing aids. We began learning some sign language, and researching deafness. We had moments of second guessing ourselves, but ultimately we knew he was our son and that we would do whatever was needed to help him.

The day we got him was a whirlwind. He came to us showing us pictures we had sent to him. He had no hearing aids. They told us they were broken. That first day he soaked up what little sign language we knew. We remember his first signs, same and different. We knew we had a smart little boy on our hands.  The next day they brought us his hearing aids with no batteries. We managed to find some, and we were so hopeful when he put them in his little ears. He knew exactly what to do.  We tried all the noises we could, there was no response. Our hearts sunk a little. That night, while in China, we got on lifeprint.com and started taking the free on-line courses for ASL. We knew we needed to up our game. This little boy was taking in all the ASL that we could give him. He wanted to know the signs for everything. He was soaking up language for the first time, and he was so excited about it. We wished we would have learned more.

After bringing him home we started private ASL lessons with a deaf tutor, continued to learn through lifeprint.com, scoured our county for deaf people (there weren’t many), met as many deaf people as we could, did hours of research on the computer and went to multiple audiologist and ENT visits. After several months with new hearing aids that were helping him just a tiny bit, we decided to explore Cochlear Implants. We were torn, because there was such a divide on what the right thing to do is within the deaf/hoh community. Ultimately, after lots of prayer, watching Rachel Coleman’s “One Deaf Child” , and doing more research, we knew we wanted our son to try it. Ten months after being home he was activated. At first he didn’t like the sound, but he grew to enjoy new sounds over the coming weeks and months. I remember about a month after being activated, he heard the sound of a bird chirping outside, and he wanted to know what it was. We worked closely with our audio-verbal therapist who was able to help us know how to teach him to listen. His speech began improving significantly. We knew we had made the right decision.  We’ve continued with English, using sign language when needed. He’s learning to read and write at home and is quickly catching up with his peers.

Fast-forward 3 years. We are now home with another profoundly deaf son, Isaac, who is 4 years old. He was adopted 7 months ago with no language. Unlike Matthew, he had profound hearing loss. There was no hope of hearing aids helping him. But we were more prepared this time. We had so many things in our tool belt. We had a better knowledge of ASL and the deaf/hoh world, we knew the resources that were available to us, we knew what the journey to Cochlear Implants would be, and we had even learned Cued Speech by going to Cue Camp Cheerio. We decided to pursue cochlear implants and got the ball rolling with that right away with our ENT and audiologist. Right now he has been activated about 7 weeks. He’s starting to respond to our voices, but still very far from understanding speech. Since we knew that we wanted to give him access to language right away, we started with sign language from the moment we met him. He quickly grew to expressively use over 150 signs. His first sign was car. He loved looking out the cars through our hotel room in China. Once he had a good grasp of basic signs, where we felt like could effectively communicate his needs to us, we moved to using cued speech. We’ve focusing on using and teaching him cued speech for six weeks. Our whole family knows the system and continues to work on fluency. Receptively he understands a many of the basic phrases we use, and expressively he knows about a dozen words. Every day he adds a few more words to his vocabulary. It’s quite amazing to see his progression.

This journey has not been simple. There have been ups and downs. Moments of self-doubt. But we keep going. We keep learning and doing what we feel is best for our deaf children and our family as a whole. We’ve learned that the process is always changing and growing too. Their needs may be different year to year. We’ve had to, sometimes, ignore the voices around us, telling us what we HAVE to do for our children. There are an abundance of opinions out there when it comes to raising and educating deaf children! We have, more than ever, learned over these last 3 years that every child is different. There is certainly not a one size fits all or one language fits all or one education fits all when it comes to deafness. The biggest joy of this journey is seeing our boys, who had no language those first few years of their lives, pick up a new word through sign, speech or cue. Seeing their eyes light up with understanding is an amazing thing.

Language, in any form, is a beautiful thing.

Have you ever thought about what it would be like to be a military spouse? Have you thought about trying to explain the lifestyle to others?  How do you describe a life that is so far outside the experience of most others?  Which part of this unique lifestyle warrants a mention?  Some of us delivered a baby, raised our children, and continued on our lives while our sponsor (our active-duty spouse) was overseas.  Others made the move to a new duty station on our own so we could begin life there and make the transition back home easier for our spouse.  Nearly all of us have spent many months on our own, keeping our lives, and by extension, our spouses’ lives running.

Because we are so often on our own, in a new place, we tend to bond with those in similar situations.  There is beauty in the “sisterhood” that develops from sharing common experiences related to a marriage to a service member.  We understand the stresses and strains that go along with receiving official orders to move across the country or the world.

A Permanent Change of Station (PCS), – or move, for those of you not military-affiliated – begins months in advance, when the Active Duty Service Member gets a list of available positions, which they must rank in order of preference.  That preference is not simply about where you would like to live.  Discussions revolve around not only that, but also entail which positions would be advantageous for your spouse’s career, what schools and communities are like in the area, and, for those of us with children with special needs, where the nearest medical facility is that can handle our child’s needs.  After much discussion, the sponsor turns in his list to his branch manager or detailer, who actually places the service member into the assignments, based on the needs of that particular service branch.  Then you wait… often for months, to discover where you are headed.  Sometimes you get one of your top three choices.  Other times… you do not.  Sometimes, you get an assignment, only to have it changed weeks before the actual PCS.  Once the orders are actually cut, you are *usually* good, but you will never be sure until you are physically there.  Once you receive those final orders though, it is time to Google, research, reach into that rolodex and start making calls.

Now the fun begins – the actual moving process.  People say, “Oh, but you have packers who come and move everything for you. That’s great!”  Actually, while it is helpful in the grand scheme of regular moves, take a minute to think about how you would like three total strangers coming into your house and packing everything you own.  So… the day before the movers arrive, you hide everything you don’t want them to pack in a bathroom. This includes any trash, your IDs, clothes for the duration of your move, etc.  You tape a sign over the door that says “Do not pack” and then spend the next day following the movers around to ensure that everything is packed and labeled properly, and nothing that should not be packed accidentally winds up in a box.  All of this is happening while juggling babies and fielding phone calls.

The movers arrive, and 24 hours later, everything you own is boxed up and on their way to your new location. Your vehicles are stuffed with everything you need in the meantime.  You attempt to carve out room amongst the pillows, clothes, paper plates and assorted “keep the kids happy” toys to actually seat all the members of your family.  Little Susie surely will not mind holding that roll of paper towels for the duration of your 15-hour trip. Because only the items you specifically remembered to pull out of your house prior to the pack out are with you, you will make at least one trip to the store to buy a spatula or coffee pot (!!) that you forgot to snag before all of your household goods were packed.  As you can imagine, PCSing is a very stressful time for families.  Now, let’s talk about how this applies to the family of child with hearing loss.

Remember when you first found out that your child had hearing loss?  How you embarked on a journey that meant adding many new people to your life: Audiologists, ENTs, SLPs, D/HH Specialists.  That is just the hearing portion of it.  If your child has other challenges, you worked your way through referrals and insurance, all while waiting for initial appointments for those specialists, as well.  For older children, you may have worked with your school district on an IEP team to determine what services your child needs to help them have access to all of their studies, as well as support during them.  Each new meeting is a little nerve-wracking as you work your way through understanding your child’s diagnosis and learning to relate to each member of his/her medical and educational teams, individually, in a way that (hopefully) is productive.

Once services started, each service provider had to build rapport with your child.  This means that it may have taken anywhere from weeks to months for your child to trust and respond appropriately to providers, especially if the child is very young or has other challenges.  Now, imagine that you get to repeat this scenario (minus the huge learning curve regarding diagnosis), every 2-3 years.  Obviously, the combination of moving coupled with ensuring care and services for your D/HH child can be incredibly daunting.

What if military families had a head start?  For as long as there has been an American military, families who relocate alongside their active duty member have become experts at finding “the best” in each new area.  These families are amazing at networking, for their own sake, certainly, but most notably for helping fellow dependents out.  The era of social media made this process even faster and easier.  The first thing most spouses do when their sponsor gets a new assignment is send a message off to anyone they know in the new area and/or those who lived there before.  For those dealing with special needs, the search is on for the best services in the area, the best school district, etc.  Usually, this involves friends introducing families to others in similar situations in the area.

What if we could cut out the middle step, and provide parents a forum to share current information about the area?  This information could carry over to families moving there in the future.  What a difference that would make for these parents, and by extension, their children in need of services?  This is the aim of Hands & Voices: Military Family Support.  Our goal is not to take the place of local Hands and Voice Chapters, but rather to offer support specific to those living the military lifestyle with their D/HH children.

Jenny Swan and Chelsea Hull, moderators of Hands & Voices Military Family Support

Jenny Swan holds a MAEd in Elementary Education, which she is currently using to homeschool her 5 children (4 hearing and 1 HH).  She enjoys reading, hiking with her family and gallivanting around the country in her “tiny home” on wheels.  Life is an adventure and she’s so thankful for the opportunity to live it! 

Chelsea Hull currently operates her own business as a freelance interpreter.  She first learned American Sign Language (ASL) from her mother, who was hard of hearing/deaf.

She holds a Bachelor of Arts Degree in Deaf Education from Fresno State University and a Master of Arts Degree in Deaf Education from San Diego State University.  She has over 15 years experience providing classroom instruction, working with families of children with hearing loss and communication delays, and teaching developmental playgroups and baby sign language classes.

Chelsea specializes in teaching parents to utilize ASL signs and principles to improve their child’s speech, vocabulary and language usage, reduce problematic behaviors, and strengthen the parent/child bond.

Chelsea’s two children, both began signing at 6 months, and are now 4 and 2 years old.