Raising a Deaf or Hard of Hearing Child

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.

I am the mom of a beautiful, smart, talented accomplished well educated Deaf/Hard of Hearing daughter named Sara.

Eighteen years ago, I sat in a meeting hall at an ASL Deaf retreat where the entertainment one night was a group of Deaf individuals who performed a satirical skit about the ineptitude of hearing parents of Deaf children.

I said in my heart, “I am hearing, but I am Sara’s mother.”

Twelve years ago, I sat in a medical conference surrounded by hundreds of physicians who were listening to a passionate lecture on genetics and deafness. At the conclusion of the presentation, the Researcher stated, “…and the eradication of deafness is at hand”, which received a standing ovation.

I said in my heart, “my deaf daughter will not be eradicated.”

Ten years ago, I sat in an educational conference surrounded by thousands of special education directors in the audience, and every time the presenter used the term ‘parent’ she put the word ‘angry’ in front of it.

I said in my heart, “that is not how it has to be.”

In my work at Hands & Voices, every day I am surrounded by parents of children who are Deaf/Hard of Hearing, where we share the journey of raising our children – who desperately need the support of D/HH individuals, medical professionals, and educators to help us ensure success.

But you must capture and know our hearts if you want to partner with us in this journey.

(I know what you are thinking right now… man, she sure goes to a lot of conferences…)

Of course those are not my only stories. My life experience is woven with a rich fabric of deaf individuals who have come along side me, have not judged me, have sometimes challenged me in a good way, and ultimately helped me to open the door to my heart to make decisions for my daughter based on her needs as a deaf child, and look beyond the filter of my life as a hearing person.

There have been audiologists and other professionals who have come along side our family and supported our choices and also made technology useful and functional in the real world for Sara, and given her the freedom to use her technology when and how she wanted to, and to be in control of that as she grew up.

There have been educators who have stood up and demanded educational excellence from my daughter, from her schools and not backed down when it came to her communication access, and also provided me with the tools to be effectively involved in her education.

The thousands of parents at Hands & Voices have their own stories that have framed their journey, and though I am the one up on the stage today, I carry their stories in my heart as well.
Regarding Deaf Education….

DEAF education/deaf EDUCATION

I met a deaf educator who left the field of deaf education to immerse herself in traditional and new models of education for all students and came out the other end telling me that we must never minimize either of the words when talking about DEAF EDUCATION. We must never dissect these two aspects apart from one another. Yes our kids are Deaf (and this includes kids who are hard of hearing) AND yes, our kids need an education. Let’s call it: Deaf Education.

Not just the what, but the how.

It’s not just about what we know or don’t know about Deaf Education. It’s not just about communication, language, literacy, and social/emotional development of Deaf children. We must now advocate for these things in a system and a world where it’s not often understood.

But when it works well, it can be brilliant.

Here is one tiny snippet of one tiny issue during one tiny piece of a 13 year old’s day at school. A mom went to the school and said that she had been arguing with her daughter about homework every night. Her daughter said she didn’t have any. Was this a communication access thing? Was it a teenage thing? Was it a school thing?

It got worked out…

Every day, the teacher in the classroom, when announcing homework assignments said it both verbally, making sure she was facing the student (who used an FM system and lipread), and also then turned and wrote it on the board to provide visual accommodation. The student could also turn and look at the sign language interpreter who was also there for her. The special education specialist in the school had arranged with the general education teachers that homework assignments would come to him and then also be posted for parents to have access to, so that they could check in with the student and help with any homework as necessary.

When all team members are pulling together, access happens!

The Power Seat of Advocacy

I’ll always remember the father who called and asked if I could come to the IEP for their son. I knew this Dad, he was a high powered attorney. He told me that he had never been into a meeting like IEP meetings where he felt so discounted in what he had to say.

Even if the law provides for parents to be at the table we must continue to create a future where true collaboration exists, and where meeting the needs of deaf child is not something to be negotiated by teams who all have different motivations for what the outcome might be (fiscal, methodological, lack of information) but be based on that child’s needs, as an individual who is unique. We must continue to create this in our educational system and to have hope that this can be accomplished.
Parent Advocacy

One day I was in the mountains of Colorado and the sun was setting in a beautiful grove of Aspen trees. My husband is a professional photographer so I barely ever take pictures, but I was alone, so decided I would take a picture of this beautiful scene. As I was standing there, I thought, “I think I’ll do a selfie with me in front of the trees.” I don’t do selfies very often, so I kept trying to figure out how to hold the camera, press the button, and get both myself and the trees in the photo, while still trying to capture the beautiful light in that moment. As I was juggling the camera, at the very last moment, I remembered my friend had told me that if you take a selfie looking down on yourself from above, you look thinner, so I held the camera up high, and then took the shot.
Here it is:

When I think about the power of parents, parent engagement, parent advocacy, parents whatever…ruling the world – I think of this photo.
If we as parents forget what the point of all this is…. In this case our children who are D/HH – it’s not about ourselves as parents – we will miss our goal. Beautiful, light filled successful children. We do not need to put ourselves in the middle of the picture. We want to stay clear on whose ultimate journey this is. But as Parents – we are the holders of the camera, we are the photographers in our children’s lives, we are the ones with the right and ultimate responsibility to frame the picture and ensure a good photograph. But we could use your help (educators, health professionals, Deaf and Hard of Hearing adults) in framing the photo and knowing how to use the camera.

I challenge you today

I challenge you. Whether you are a Deaf individual, a researcher, a teacher/educator, a medical professional – don’t forget that the point of all this is not about you, just like it’s not about me….it’s about our kids, each one individual and unique.

If you commit to doing that, so will I, and so will all parents who only at the end of the day want their kids to succeed. But if we stay separated as we have done over the centuries, I don’t know, truly if there is any hope.

I am not a Pollyanna, I know that we will not all agree in this room and/or across organizations and systems. Ghandi said, “Honest disagreement is often a good sign of progress” But we have no hope if we only focus on our own selves. I am so enheartened by movements right now in the field like the Common Ground project and the Radical Middle, and of course…Hands & Voices.
We must stand together…

I am learning that everyone has a story and is a human being behind their ‘role’ in this conversation. We often come together in rooms where we do not stop to listen and reflect on different perspectives in deaf education – and partly because we do not view one another as human beings with respect. I know that the history of deaf education over the past 200 years has been played out with passionate forces each clamoring for their stake in education of Deaf children. The stories I shared with you at the beginning of this presentation are my stories, and I know each one of you brings your own story to this conversation, and I thank you for it. I carry in my heart those who have come before us to make a path for my daughter today. – whether they communicated like my daughter does today or not. I am grateful for those in this world who are passionate and fight to keep the path for all our kids.

I am a mom of a beautiful smart talented accomplished well educated Deaf/Hard of Hearing daughter named Sara. Does she speak or does she sign? Does she use both or not? Why does that matter? For my daughter or for any of our daughters or sons who are successful human beings in this world. Yes – we must all stand together to help our children attain success through one means or another, but the light on the trees must be successful outcomes for ALL kids, not the means by which we achieved it.

By Janet DesGeorges

(This speech was given by Janet DesGeorges, Executive Director of Hands & Voices at The Deaf and Hard of Hearing Program Presentation Thriving Together Friday, May 5, 2017 Boston Children’s Hospital.)

I am a hearing wife of a Deaf man and a hearing mother of four children, three of whom are Deaf. I was born in a hearing family with all hearing siblings. Although I learned a bit of sign language, and even performed a song in sign at my 8th grade graduation, I had never met a deaf person.

When I was fourteen, my sister, who was just two years older then I, was losing her hearing. She saw an audiologist, who gave her hearing aids, but my wise mother knew that there was something more, something better for her. She found a program for the deaf and my sister switched schools, started learning ASL, and using an interpreter. I didn’t want to be left behind! I started learning and my sister would ‘help’ me by not using her hearing aids on weekends and forcing me to sign with her.

Learning ASL led me to involvement in the ASL community; however I was reluctant to become fully involved. In college, I was a little bit involved with the deaf community and decided that I wanted to teach deaf children.  I became a huge advocate for Bi-lingual/ Bi-cultural education and looked forward to teaching. In my naivete, I said I believed deaf people could do anything hearing people do. I was convinced that I really believed it too.

In my senior year of college, I met my husband who was the ASL lab instructor. We started dating and just after graduating, married. When he felt moments of discouragement regarding his success in life, I encouraged him. I believed he could do anything he wanted to. . . except run a business of his own. His experience was in construction and that’s where he wanted to start out. Eventually he wanted to do something big that would inspire deaf youth to succeed.

The first few years of marriage were rocky as I finished my degree and started teaching and he ran into difficulties finding a steady job in construction. After much thought, he decided to go back to school, major in history and become a teacher.  I was secretly relieved that the big talk of starting a business had stopped. I knew he would be a wonderful teacher, and he had a passion for that. It would also provide us with a steady income. That’s what I needed.

Our first child was born and I worked full time while my husband attended school. My son was hearing and began signing at six months of age. We were a happy family.

Then, my second son was born deaf. No big deal, I thought. I still thought I believed that deaf children, and deaf adults, could succeed and do whatever they wanted. I had no idea how it (his birth) would shake my beliefs and my marriage.

My mind filled with questions and doubt.

What if he doesn’t want me as his mom because I’m hearing?

What if I don’t know how to teach him to read?

What if he never learns to read above the 4^th grade reading level?

What if he says he wants to be a fireman?

How do I best support him?

Should he get hearing aids?

Should I make sure he has speech?

If he can talk, won’t he have a better chance at success in the future?

Only a parent understands the dreams and desires her or she has for her children. Only a parent can understand the gravity of having those dreams crushed. It’s natural for someone who gives birth to a child who is different than herself to grieve. But I was the hearing wife of a Deaf man! The hearing sister of a Deaf adult! The teacher of d/hh children! What was my problem? Didn’t I believe my child could do anything he wanted to?

I realized that as much as I had thought I ‘believed’ in the Deaf individual, it just wasn’t true. As much as I thought I had been truly accepted and enculturated into the Deaf community, I felt alienated. I was only a bystander after all.

After going through the grief and seeing a counselor who understood Deaf culture; making decisions and moving forward as a hearing mom of a Deaf child, I had nagging thoughts. Nagging, negative thoughts that would come to me as my little boy grew. They didn’t disappear as my 3^rd child was born: a Deaf girl. In fact, they probably became a little worse.

I remember my son telling me, “I want to be a fireman someday.”  That was a moment when I put on a face without expression and said, “Ok! That’s awesome.” However, inside, my nagging mind was posing questions the whole time: They won’t let him be a fireman! He’s deaf! He can’t hear! How can he become a fireman? You are feeding him false hope! STOP! He also said he wanted to become a policeman or a soldier. I felt all of these jobs were impossible.

It was during this time that my husband began to dream again. He was in his Master’s program and doing a research project on Deaf Culture and History. He wanted to develop a poster that would show the world that Deaf individuals can and DO succeed, in many different careers. He finished that poster, (link “that poster” to www.deafsense.com/store)  featuring 48 deaf individuals in 48 different career pathways. To my amazement I saw on the poster a Deaf fireman, a Deaf police officer, and a Deaf ROTC participant. What? My mind went into shock. It couldn’t be. My husband must be wrong.

So I did my own research. I found that not only was he correct, but that these men weren’t the only ones who were changing the career field for my son. There were 50 documented firemen who were d/hh. There were other d/hh men who were serving on a police force. The ROTC participant is still lobbying to change the laws to where d/hh people could serve in non- combat positions.

At this same time, I began to go through a personal transformation. I began to see that I, with my bystander beliefs, was holding my husband, and my children, back from succeeding. It wasn’t his deafness that was holding him back; it was his insecurities coupled with my insecurities and beliefs that we couldn’t succeed in achieving our dreams.

The world today teaches us to settle for less than what we might want to achieve. The world says go to school, get a job, settle down, the end. Our hearts, deaf or hearing, tell us differently. They tell us to set our expectations high and go for them through whatever challenges beset us.

The truth is, we all have challenges we must overcome. As parents, as spouses, we have a huge impact on what our loved ones will attempt to achieve in their lives. Will we stand by, allowing ourselves to be bystanders because we are hearing? Will we give into the nagging thoughts and beliefs that life is hard, and that there are only certain jobs a deaf person can do, and our children just won’t be able to achieve their dreams?

Or can we reach into our hearts and find true belief? Can we open our minds to the possibility that others are changing the dynamics in the career world and that what may not have been possible only years before, just might be as our children grow? Can we begin to see that, in reality, it has always been possible?

Can we see that we can become believers? And through believing, inspire those around us to become believers too?

Come follow us at www.deafsense.com where we believe everyone can and should succeed!

Lynell Smith

For me, being deaf is a way of life.  I was born hearing, and began losing my hearing as an infant.  My parents couldn’t get a proper diagnosis until I was almost two and then I was fitted with hearing aids.  My parents chose to raise me with an emphasis on spoken language, using speech therapy, hearing aids, and FM systems while being educated in the mainstream setting. My hearing became progressively worse and I became profoundly deaf by the time I was nine years old.

At that point, relying only on auditory information started becoming more and more difficult. By fifth grade, I began learning sign language and using an interpreter, which continued through high school and college.  I went to college and earned my BA in Deaf Education, Elementary Education, and Special Education.  I moved to the Chicago suburbs and began my teaching career working with deaf students who also had emotional & behavioral disorders and I learned a LOT about behavior management. At the same time, I began working in Early Intervention and became credentialed as a Developmental Therapist-Hearing (DTH).  Over the years, I went back to school to get my Masters in Early Childhood Special Education and have taught in a variety of schools including residential, self-contained, resource room, and itinerant services.  I had the opportunity to start moving into more administrative roles in the schools as a Curriculum Coordinator, Assistant to the Principal, and am now Director of Student Support Services in a Montessori School that has an embedded Cued Speech program.  In addition, I am also the Coordinator of CHOICES for Parents, a statewide parent support program for families of deaf and hard of hearing children.  Plus, I’m pursuing my doctorate degree in Special Education with a concentration in Deaf Education.  I am very interested in parent support, early intervention, language acquisition and literacy.

I married a hearing man and together we have four beautiful children, all hearing.  However, two of them have been involved in the early intervention system and have had IEPs in the mainstream setting.  I feel like I’ve come full circle in my life in that I’ve experienced all educational settings and communication modalities, both professionally and personally.  I also feel like I’ve been on all sides of the table at the IEP, as a student, parent, teacher, advocate, and administrator.  

My personal and professional experiences lead me to the point that I most often emphasize when I work with families of deaf and hard of hearing children: when your needs change, your choices can change too!  Too often, people get stuck on one way to do things.  If something isn’t working, why not explore something new?  If something is working, why not add something new?  Because I can talk, sign, and cue, I have met so many different people and have had my life enriched in so many ways.  I am able to be a part of the hearing world, Deaf community and Cued Speech community.  There is no one size fits all.  There never has been!  What works for your family is what works for you and your child.  Keep an open mind and be willing to explore Sign Language, ASL, spoken language, and Cued Speech options!

At birth Jaden had a hearing test like all newborns in our state and he failed; two weeks later he had a repeat test and he passed (or so we were told). The next several months went by without incident but at about 9 months, I felt he was not developing the way he should. Jaden was making milestones but later than most kids do.

At Jaden’s one year check-up I brought up my concerns to his pediatrician. it was shortly after this that Jaden began Early Intervention services.  Jaden began basic skills, physical and speech therapy.  Closer to 2 years of age Jaden also began occupational therapy.  Jaden’s days became filled with what I call “structured play”; every day of the week sometimes more than once a day, Jaden had one therapy or another.

It was by accepting the fact Jaden was not quite where he should be and by being willing to allow professionals into our home that we were able to start getting Jaden caught up.  He went from a boy not walking to one who could take steps and eventually run.

With the help of his therapists Jadan was making progress in most areas but his speech had not shown significant improvement.  Between 1 and 2 years of age, Jaden had 3 hearing tests all of which came back inconclusive.  Just after his 2nd birthday Jaden had an ABR and that is when we found out about his hearing loss.  Jaden has a severe to profound hearing loss in his right ear and a moderate hearing loss in his left ear.  He was fitted for hearing aids the same day he was diagnosed.  That day I was not upset; rather I felt relieved and almost vindicated.  I knew there was an issue and now I had the answer; we could begin to help Jaden in ways that we had not helped him before.  Finding out about Jaden’s hearing loss is what I call the first half of the puzzle that is Jaden.  His hearing loss did not explain all of his quirks, such as low muscle tone and feeding issues, but it did explain why he was not talking.

Within a week or two of Jaden being diagnosed we were put in touch with a teacher of the deaf for infants; she was a blessing to our family.  She began working with not just Jaden but our entire family once a week and what a difference it made!  Jaden started picking up signs right and left; especially signs for his favorite things like milk and cookies.  Now that Jaden had hearing aids, with the help of his speech therapist, his speech began to improve too.  Okay, so he was not talking yet but he was babbling which is something he had not done before.

In January of 2010 Jaden started at Little Listeners Pre-K class at the NYS School for the Deaf in Rome; since then there has been no looking back.  Sending our not yet 3 year old son on a bus to a school about 30 minutes away to attend a full day of school was an adjustment for the entire family but it has been one of the best choices we have ever made for him.  Jaden was in a small Pre-K class with a wonderful teacher and teacher’s aide.  At school Jaden also continued to get speech therapy from an amazing therapist every day of the week along with getting occupational and physical therapy both several times a week from great therapists.

It is with the help, knowledge and daily communication that our family had with his team that blessed us with a whole new little boy. During his pre-k years with the help of his teacher and speech therapist Jaden went from a boy whose number of words could be counted on one hand to one who talks and talks and talks.  I never thought it was possible but there are days I crave silence; what a wonderful ‘problem’ to have!

When Jaden was almost 4 years old, he was diagnosed with a genetic condition called 22q Deletion Syndrome; this is the 2nd half of the puzzle that is Jaden.  We are fortunate in that Jaden does not have many of the health issues that others with this condition do.  Though this was not something I considered to be good news, it is something we are fortunate to know for it explains many of Jaden’s quirks; such as feeding issues which he no longer has and weak muscle tone and fine motor skills which we now know he will likely always have.

Over the past several years Jaden has blossomed into a funny, smart, confident and witty little boy in large part thanks to the knowledge that we have been fortunate enough to find out about him and being willing to accept the help and information that others could give us.

Today Jaden is 9 years old and in the 4th grade. Jaden’s newest adventure began in September of this year. Jaden has entered a mainstream school setting in our local school district (New York Mills).  We are fortunate in that Jaden has many of people rooting for him. Our family has had and continues to have tons of support from individuals that have worked with Jaden in the past as well as those that are new to his team. Jaden seems to be settling in nicely to his new school and he’s even joined drama club and band. I’m sure there will be some bumps in the road as Jaden embarks on this new journey however, we have every expectation that Jaden will continue to thrive and excel at his new school.        

I think Jaden’s story shows that the saying “Knowledge is Power” is so very true; accept the knowledge that others can give you about your child, embrace it and use it to help your child.  For our family, it is the knowledge that we have been given about Jaden, both good and not so good, that has allowed us to help him become the wonderful boy he is today.

Wendy Roback

My name is David Cluff and I am deaf, and this is my story.

In March of 1993 I was born with a virus called Cytomegalovirus, which is known as CMV. This virus has many side effects and doctors thought I might not survive. I was born pre-mature and despite what doctors initially thought, I was born healthy. I was welcomed by loving parents and would eventually be the oldest of four children.

My childhood was not like most kids growing up. At age three I was diagnosed with hearing loss and fitted with my first set of hearing aids. At age six, I woke up one morning and any hearing I had the night before was completely gone. Just like that, something that I cherished so much was gone. My world had changed in a matter of moments. I felt broken, unsure, and I missed the way things used to be.

Shortly after losing all my hearing, I was given the option to receive a Cochlear Implant. After lots of prayers and help from family, friends and people I hardly knew, I got my first Cochlear Implant in October of 1999. Shortly after recovery, I got the Cochlear Implant turned on–and very quickly, my ability to hear my parents, my own footsteps and the water running was restored.

Did that magically make everything perfect again?

Nope.

Rather, it was the beginning of a journey of faith as I re-learned to hear the world around me. It was like a matching game of “what sound goes with what.” As the years went by and after a major move to the great city of St. Louis, Missouri, I was given another opportunity to receive a second Cochlear Implant for my left ear. It was my dream to hear with two ears again. I was once again faced with the challenge of re-learning to hear. Hearing with two ears is not the same as hearing with one.

Back in 2007, I was working closely with my surgeon, Dr. Hullar, on a five-year research study. He became a good friend and a great mentor to me. During one of the meetings in his lab he overheard my parents and I brainstorming on what project I should do for my Eagle Scout rank in Boy Scouts (BSA). Dr. Hullar knew my background in computers and said, “Why not build a website for deaf teens like yourself?” It was like a huge light bulb went off and I found something to be passionate about. Before I could actually start the project I had to get it approved by the BSA board. I was nervous as I really wanted to do this project no matter what and being able to do it as my Eagle Scout Project would make it more meaningful. The board members approved the project.

Today, I am happily married to my best friend and a father to an energetic 8-month-old boy. Even as an adult, I am still learning to hear the world around me and cherish every moment I can. I have come to realize that life isn’t supposed to be perfect; rather, it is like a puzzle. When you get a puzzle in a box or bag you now have the choice to either put the puzzle together or let it sit on the shelf. My challenges came like a bag of puzzle pieces. So many pieces that it often felt like it would take years to put each one together to match the master photo. Yet, I had a choice. Am I going to let it sit on the shelf and let my challenges hold me back or am I going to do my best to put the puzzle together? Once completed you see the whole picture; but notice how there are lines going all over the place from each puzzle piece. It is not seamless at all, but it is also not broken. That is like life. We are given pieces of a puzzle and with time, we come to see the masterpiece.

My master puzzle is still in the works and I am seeing parts of it coming together–and that is when I know that everything is all right and that everything will work out.

Read more about David’s story, visit: www.davidbcluff.com

As Board President of Hands & Voices Headquarters, I was honored to represent H & V through a Hear the World Foundation Grant, by joining U.S. educators and audiologists who have the common goal of sharing strategies on how to foster language development in children who are deaf and hard of hearing. Dr. Christine Yoshinaga-Itano, Audiologist, Teacher, and Researcher, periodically leads a group in conjunction with Soaring Hope Mission. This year, our team of US, Chinese and Taiwanese professionals traveled to Nanjing for a conference with China’s Newborn Screening Committee and then on to Yinchuan to directly work with 150 children, parents and staff in a regional Rehab Center.  Phonak graciously donated hearing aids and local representatives to join us as well.

As the Director of MN Hands & Voices at Lifetrack for over 14 years, I have had the pleasure of working with the most inspiring parents. I’ve been bolstered by the wisdom and life experiences of adult role models. I have also been humbled by the passion and dedication of professionals in the field.

As a parent of a young adult who is deaf, my role on this trip was intended to be that of mentor and counsel, based on my personal and work experience. At Hands & Voices, we use the term “Guide By Your Side” to refer to our trained Parent Guides who help families navigate next steps. In China, however, I learned far more than I can ever could impart. In the end, it was I who was “Guided By China.”

A blog of the trip can be found here: Guided By China

Candace Lindow-Davies

Disclaimer:

The blogs listed below are written by parents of deaf and hard of hearing children. The blogs are shared as a resource for families with deaf and hard of hearing children and do not indicate an endorsement by Hands & Voices.

A Mom’s Musings

An American Mom in Tuscany

CI Circle Parent Blogs

Kodiak, My Little Grizzly

Mothering Three Deaf Daughters–My Journey

Musings of a Momma

When a child is diagnosed with a hearing loss, the first thing that tends to happen is the quick referrals for more tests and intervention for the child. This is all good and well, we need to support and help the child as best we can. BUT, what about the parents, what about the family? Are they not at the heart of that child’s world?

The more I talk to, and read about families raising deaf children and the more I reflect on my own experience, the clearer it becomes: isolation.

Deafness, often referred to as the silent disability, is not only silent for the child, but in a sense, this initial diagnoses creates an isolation, a silent vacuum for the parents and families.

Where do you begin when you learn that your child can’t hear? You are sent from test to test, a long list of professionals, therapies and referrals. All focused on the child.

Yet, sitting in the seat, is a parent facing a diagnoses of their shattered dreams. Their hopes crushed. Staring at a child, who just this morning, looked as if they could hear the sweet “I love you” of the parent’s voice…

Sitting in the seat, a parent detaching from the world around them, a parent preparing for auto-pilot, shutting down their needs, ignoring their fears, doing what is expected in a haste of the child’s immediate needs…building up the invisible barrier.  A parent, insulated by the isolation and detachment.

Sitting here, reflecting on the parents met, discussions had, and personal articles read. The hints of isolation need not be there!

All we need is for someone to acknowledge the immense power of a diagnoses different to our dreams and realities. We need the humanity behind the diagnoses. A different approach, a way to bridge the gap that often results in the complete isolation a parent feels when their child is diagnosed with hearing loss.

Who do we turn to, who will understand the thoughts, fears, countless questions and emotions rushing through our every being? Where do we find “others” like us?

We need a consistent sensitivity towards the parents before rushing off for more tests and referrals. Acknowledge that any diagnoses, different to what we know to be perfectly healthy, is enough for us to shut down and go into auto-pilot…
We need to move towards holistic medical practices, where we no longer just see to the physical, but where we also acknowledge the psychological and emotional impact a diagnoses have on the parents, and the family.

What if it became standard practice for ALL pediatric facilities to have direct referrals to trained counselors/parent support groups who can guide and support families when their child is diagnosed with a disability/illness?

Is it not true that the parent’s well being is crucial to successful intervention and management of any diagnoses that impacts on a child’s health, development and growth? No parent should navigate their journey in isolation…silence can be deafening to a mother’s soul and a father’s heart!

The Internet is wonderful, but it can also be misleading for parents who are new on the journey. We need to connect with real people, people who can relate, families who are living what we are hearing for the first time. Isolated in their silent need, let us parents, who have traveled this journey, reach out and break the barriers of silence…

Chevone Petersen

South Africa

I found myself missing the child I once knew. The one I always referred to as “happy-go-lucky”, the one who loved my cuddles and giggled through my delightful butterfly kisses!

You see my son was diagnosed with delayed speech and language mid 2011 and then mild hearing loss at the end of 2011. The 6 months that followed his diagnoses were a roller coaster of fluctuating loss, pushing for intervention and finding support through online communities!

All this while my son spent the better part of 2012 not hearing his teacher. And me, yearning to connect with other parents.

All I found though were resources referring to profound hearing loss…believing that we did not fit the “category” of needing support since we were fluctuating between mild and moderate. Even our government hospital agreed that my son was not a “candidate” for intervention services.

It angered me that my son’s challenges and diagnoses could just be dismissed by the flick of the wrist. File closed. Move on. Come back in a year! Our system disappointed me, it failed us, and to this day, still continues to fail many families.

I made a decision to take ownership of my son’s challenges. My son’s worth was NOT going to be defined by his level of hearing loss!

I enrolled him at a school for the deaf, where he received the necessary intervention in 2013. He thrived! His language became more colorful and bright! Leaving home at 5:30am and arriving back after 6pm; a four hour journey everyday, was well worth the sacrifice.

Today, my son has a dedicated “Team Kai”, he attends mainstream school and still continues to receive intervention services privately. He wears bilateral hearing aids and uses his FM system in the classroom. His teachers are supportive and accommodating. He is the only deaf/hard of hearing child in a school of +/- 900 students!

So you may wonder, why do I miss the child I once knew, the “happy go lucky” boy? Sensory Processing Disorder (SPD)!

His hearing loss is no longer our biggest challenge.  His SPD and behavioral responses is what’s got me “missing” the child I once knew…he has become my four seasons in a day…I never know what to expect when I get home.

Watching my child go from a loving happy go lucky boy to an angry, aggressive and intolerant child during a sensory meltdown is not easy; it is extremely unsettling. I am however encouraged when his teacher tells me how he advocates for himself at the age of 7. He asks to go for a walk where he can have some time to self regulate when the classroom environment becomes too noisy, or the tapping of a pencil on desk is making him feel “all funny inside” and sitting is becoming unbearable. He reminds his teacher to use the FM system when she forgets, and he works exceptionally hard!

Together we’ve been working on how to best “manage” his reactions to overwhelming sensory input. It’s our mom-son adventure!

His resilience has inspired me to reach out to other families. In 2014 I founded Decibels of Love, a parent-to-parent support group for families raising deaf/hard of hearing children. Together we grow. Together we empower. I believe that the smallest act of kindness CAN change someone’s world forever. All it takes is one family to advocate, educate and empower an entire community!

Early on in my own life journey I promised myself that I would always try to live my best life even in my weakest moments. It is this philosophy that’s allowed me to maintain my sanity, to draw myself closer to who I am and strive to be the best parent that I can be… 

One would think that growing up with a hard of hearing father would have prepared me for this journey, but this could not be further from the truth. Through my son I realized that I also had a level of ignorance. It is only through my son’s diagnoses that I  could truly understand my father’s world…a world of silence embraced by the knowledge that all things are possible if you believe and have the courage to be the change…

Chevone Petersen

South Africa