Posts Tagged ‘deaf children’

Marbely Barahona: We Wondered How His Future Would Be

December 10, 2018

Today was the day.

As parents of a deaf child, we always wondered how his future would be.

At some point, we felt overwhelmed, sad and very hopeless. We remember those days that we couldn’t see a clear future for him.

Today, he left from our nest and found his own wings. It was hard to let him go, but we knew he was ready.

He is ready because we didn’t let anyone dictate our choices.

He is ready because we never let him feel less capable of doing something, because we worked days and nights incessantly to make sure he developed a language.

He is ready because he had people around him that truly cared: teachers, audiologists, professionals and a wonderful organization, Hands & Voices where we together as a family learned so much and never again felt alone in this journey.

He is ready because we encouraged him to make friends, those that last forever, because he took advantage of every moment, every challenge, every adventure.

This is just a new beginning for him, there is still a lot more to do, only that this time he will do it by himself, he will advocate for himself and he will become a man.

Marbely Barahona

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Rosabel Agbayani: The Road We Travel TOGETHER

August 15, 2018

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.

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Teaching Deaf and Hard of Hearing Kids to Read

June 4, 2018

By Karen Putz, Co-Director of Deaf and Hard of Hearing Infusion

I grew up hard of hearing. The library was my favorite place and I often spent Saturday mornings picking up books for the week. I immersed myself in reading for hours and hours. For me, the written word was the key to the universe because the audio world simply wasn’t accessible. When I became a mom of three deaf and hard of hearing kids (who are now young adults) I was determined to give them the same keys to the universe. My children were all born with normal hearing and became deaf/hard of hearing at two, four, and two years of age. When they were born, I introduced them to board books before they could even sit up. I had books everywhere in the house–and always kept a box of books in the car. Today, all three of them enjoy reading, although they all took different paths to learn to read.

Here are some creative ways I’ve used to teach my children to read:

Make Reading FUN

The key to teaching reading to any child is to make it FUN! Learning to read doesn’t have to be a dreaded process for you or your child. Start early. Your infant can begin to enjoy picture books as early as six weeks–which is about when their vision sharpens. Keep in mind, books need to be held no more than ten inches away during the first three months.

As soon as each of my babies were a few weeks old, I brought out picture books with simple objects and just one to a page. Before my kids could even sit up, they would become excited at seeing the same books over and over. Often, my husband and I would team up to read, with one of us holding the kid and the other reading and signing. When our kids were a bit older, one of us would read out loud while the other held the book and followed along pointing at each word. We often alternated our methods in a variety of ways depending on each child’s development and skill.

Not only did we strive to develop their language skills, we worked on auditory skills with whatever auditory ability they had. Even kids with profound losses can appreciate books that focus on sound–using drums, vibrations, visual lights flashing, etc. Be as creative as you can in showing your child the visual and auditory world around you.

The Bathtub Reading Center

 

One of the best places to teach reading is in the tub. This is the perfect place to keep your child in one place for a while and have some fun learning to read. Of course, you’ll need to keep the books OUT of the water.  Occasionally I would also bring in treats like ice cream bars or popsicles (you can make healthy ones!) –this would keep my child occupied long enough to sit in one spot and watch me as I read from a book.

The best reading tool is a set of foam letters. Yes, that’s right. A cheap set of foam letters. I taught all three of my kids to read during bath time. Start by teaching them to recognize each letter. Once they know the alphabet, play “Hunt for the Letter” by placing two of them in the tub. “Where’s the A?” “Where’s the P?” You can gradually increase the number of letters floating around until you have the entire alphabet in the tub. You can use cueing, fingerspelling, or flashcards to show the letters you’re looking for. Have your child put each letter up on the bathroom wall as they find them. (If your child has a waterproof hearing device, they can keep it on during the play session–check with your audiologist to confirm).

The next step is to start spelling out short words. Cat. Dog. Mom. Dad. Pig. And so on. I had a whole collection of plastic animals that we used in the tub–I would put the word up on the wall and my kid would have to find the corresponding animal.

Here’s a way to vary the activity and encourage kids to think. Put up the word “Cat.” Then hold up an “M” and a “H.” Now ask your child, “Which letter would turn this word into “Hat?” If your child has some difficulty, then use visual cues, props, flashcards, cueing, or fingerspelling. Do this with a variety of easy words.

Around the House

Grab a 100-pack of index cards and a marker. Label things around the house and stick the cards to each item. Once your child has mastered the words, substitute the cards with more complex words or similar words. This works great for families with multiple languages. Yes, deaf and hard of hearing kids can learn more than one language. The key is to provide access in a way that the child can comprehend, process, and understand language.

Once your child has basic recognition of words on the index cards, you can put them in a pile and play, “Find the Word.” Then expand it to, “Create a Sentence.” For more advanced word, ask your child to pick up five index cards and “Create a Story” with the words. The stories can be as silly as possible!

Choose different areas of the house to read books. Spread a blanket outside and have a picnic while you read.

Use Books with Pictures for Words

One of my kids’ favorite books was “Picky Nicky.” This book was a bit more advanced for the beginner reader, but the beauty of this book was each sentence had one or two pictures in place of words.  I would read/sign the words and pause at the pictures. This gave my child the opportunity to fill in the word by looking at the picture. It was a great way to involve them in reading longer books and allowing them to participate in the reading. My kids also loved “The Very Hungry Caterpillar” because of the different-sized pages. For fun with pre-schoolers, you can purchase all the foods in the book and have a feast as you read!

Cooking + Reading

If you have a kid who won’t sit still long enough to get through a book, another way to teach reading is through cooking. Yup, that’s right, cooking! Use the back of a brownie or cake mix to teach reading. Most box mixes have pictures as well–showing eggs, a measuring cup, etc. Ask questions like:

“Can you find the word, ‘Pan?’”

“What temperature should I turn the oven on?”

“How many minutes do we need to bake the muffins?”

“Do we need one or two eggs?”

Let your child scan the box to find the answers.

Create simple recipes for foods that your family eats often and read the recipes together as you prepare the food. This skill goes a long way in life!

On the Road

One of the first signs my kids learned to read was the “stop” sign. “Oh look, there’s the stop sign,” you say as you come to a stop. “S. T. O. P. Yup, that means stop. So I’ll need to stop here.” Yes, that sounds cheesy when you say it, but hey, you’re teaching your kid to read everything, everywhere you go.

As they become older, you ask for their help in finding certain exits. “I need to watch for the exit for Lawrence,” you say. “Can you help me find the exit that begins with the letter, L?” Do this within a mile or two at first. For more fun, start out on a trip with a list of words to find and cross them off as you pass them by.

Play the License Plate Game on long trips. You can print out the license plates of all the states here: License Plate Printable.

Other Reading Tips:

When your child begins to learn to read and knows a few words from a favorite book, read along by pointing to each word/sentence (as you speak/sign/cue) and then stopping in puzzlement at a word that your child knows. Give them a chance to recognize and read the word–kids love to help adults and share what they know! When your child has a comprehensive understanding of a book, you can also have some fun by misreading a word and waiting to see if your child catches your mistake. This is also a way to test your child’s understanding and comprehension.

Another fun reading activity: alternate sentences when reading familiar books. You read one sentence, your kid reads the next one.

Everywhere you go, with everything you do, find and create opportunities to expand your child’s language and their exposure to the written word. One of our favorite toys was the Magnadoodle–I would introduce a new word and draw a picture for the word. This was great during the times we had to wait in doctor’s offices. At the beach, we would write words in the sand.

Pick books that fit your child’s language development at the time then alternate with a book that’s a bit above their language level. If you notice your child has a passion for a certain sport or activity, select books around those topics. My youngest child hated to read books but he was content to sit through a football book–he knew every NFL team by the time he was four. Don’t be afraid to read books that are above your child’s reading level. The more words you expose your child to, the better!

You can even find books with deaf/hard of hearing characters: Wikipedia List of Books with Deaf and Hard of Hearing Characters

Here are some resources for teaching your child to read:

Clerc Center Literacy

Hands & Voices Literacy Resources and Research

Instructional Strategies for Students Who are Deaf or Hard of Hearing

 

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Deaf and Hard of Hearing Teens: Fitting in When We Stand Out

September 11, 2017

The Journey through Adolescence: Fitting In When We Stand Out

Winning Sportsmanship

 

The adventure of adolescence is full of discovery both socially and within ones’ self, and even more so for someone who is deaf/hard of hearing.  Adolescents seemingly expend constant energy to become strong, unique individuals while at the same time trying to fit in without standing out.

For young people who are deaf or hard of hearing (DHH), adolescence provides the opportunity for them to own their hearing without it becoming their central identity. People do not want to be defined solely by their audiogram, technology, or by the accommodations they use.

Supporting our youth as whole people who happen to have hearing differences may lead to increased acceptance of self.  When a group of teens who are DHH were asked what they would wish for in a perfect world, they did not wish for normal hearing. Instead they wished that “people wouldn’t think of us as impaired or broken”. They wish that people would think of them as a teen first, person with hearing loss second.  At the Colorado Hearing Foundation-sponsored Journey Through Adolescence Conference (Children’s Hospital Colorado March 2017), Jonah Berger, therapeutic mentor, stated “…disability should not be in charge, we are in charge…” Adolescents can learn to take charge and become confident with who they are as they choose their path in life.

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To support confidence and self-advocacy for teens who are DHH–the strategies below, built around pillars of growth through adolescence, may help them on their journey of self-discovery

 

  1. EMPOWER ADVOCACY:

Empower advocacy by teaching adolescents how to become active in their audiology and educational appointments. Glaring at their audiologist or counselor may give them a feeling of control, however, it does not build partnerships. They need to tell these professionals what makes them cringe, what makes them grumpy or frustrated in school, with their technology, or being deaf/hard of hearing.  Teens should become the expert about their own hearing. They need to describe what makes them hear better and how they prefer to communicate. Learning the skills of self-advocacy through partnerships will be an invaluable skill as teens mature into fully independent adults.

 

  1. OPPORTUNITIES FOR CHOICE:

Advocacy works best when you understand your hearing, your technology and what works well for you.  Adolescence is a time for DHH teens to try new technology, strategies and communication styles to have full access to the information that their peers are receiving.  Encourage your teen to explore their options. Sometimes the hardest part of making choices is taking the first step to try something new.

 

  1. BALANCE INTERDEPENDENCE WITH INDEPENDENCE:

Interdependence is how we rely on each other.  Independence is how we rely on ourselves.  Healthy interdependence builds the foundation for future independence and should start early.  The goals for independence for a teen that is DHH should be the same as for their siblings.

For example, teens should be expected to get up on their own and get ready for school in the morning. DHH teens can use vibrating alarm clocks or other technologies to develop this independence. Staying home alone and knowing what to do in case of an emergency are valuable skills for all teens.

 

  1. BEYOND HEARING TECHNOLOGY:

Technology is rapidly advancing and can remove some of the typical and frustrating communication barriers.   To stay connected with friends, teens can now access Instant Messaging, texting, social media, real time captioning apps, video relay.  Internet safety and supervision is critical and must be taught to all children and youth regardless of their hearing differences. Additional information on cyber safety may be referenced at

www.handsandvoices.org/resources/OUR/2014/V17-3_cybersafety.htm

 

  1. CULTURAL LITERACY:

Teens who are DHH benefit from being informed on current teen culture.  Incidental language and learning is rapidly acquired during adolescence through music, movies and TV and are part of the adolescent culture.  There are multiple ways for adolescents who are deaf/hard of hearing to connect with the typical adolescent world and be a part of that culture.  This might include YouTube, videos, lyrics, technology and interpreters that specialize in signing music and live concerts.  Being a part of a team or other activities give the teen another identity besides their hearing.

 

  1. SOCIAL COMMUNICATION:

During pre-adolescent years, a variety of skills are developed through play and guided by adults.  During these years, parents and teachers often help with miscommunication or clarify missed information.  During adolescence, the development of friendships requires more communication skills and less play.   Adolescents need to develop the skills to repair communication breakdowns, which include asking for clarification and/or asking for information to be repeated. Adolescents have the responsibility to increase their ability to be better understood, whether that be through spoken language, sign language or both.  Multiple opportunities to socialize with friends and family members will increase their confidence and ability to repair communication breakdowns.

 

  1. IDENTITY:

As William Shakespeare said, “To thine own self be true…”  Often people with hearing loss are not aware of how exhausting good communication can be. When exhaustion happens, it is easier to revert to faking or pretending that we are hearing rather than asking for repetition for the third, fourth or fifth time. Encourage youth to be true to themselves and to the people with whom they are interacting. Responding with “just forget it”, is unfair to all. People with typical hearing do not hear everything and ask for repetitions with confidence.  Let teens know that it’s okay to take a break when they are working hard to hear and to let people know that is hard to hear everything that is being said.

 

 

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  1. SELF-ESTEEM:

Let’s be clear, everyone’s self-esteem is fragile. This fragility is not a flaw to be corrected, it is a human condition to be respected in everyone. Like all adolescents, teens who are DHH struggle with self-esteem and self-identity. Hearing is another facet of self-esteem and self-identity.  Teens who are DHH may feel comfortable with people who are hearing, people who are deaf or people who are hard of hearing, depending on the time or the social situation. Make sure they know that they do not need to choose only one group, and that the group is not their self-identity. The development of self-identity is a life-long, fluid process.

 

  1. ROLE MODELS:

You can’t be what you can’t see. DHH role models or mentors are the best kept secret but it shouldn’t be that way.  If teens, parents or professionals are curious about the possibilities and successes of people who are of hearing in today’s world, then seek out the people that are on that journey.  As you and your teen meet people and cultivate stories, keep in mind that your child will have their own unique experiences and journey. For perspectives from teens may be referenced at www.handsandvoices.org/resources/dhh_adults.html

 

  1. CONFIDENCE:

Teasing and bullying will happen whether you are deaf, hard of hearing or if you have typical hearing. Bullies are victims of low self-esteem too.  Bullies attack perceived weakness.  Help your teen learn a variety of skills to get through all kinds of situations. Kidpower.org is an international organization that provides trainings to increase safety and confidence. Your DHH adolescent can teach the community how they want to be treated, what they need for respect, and what they have to offer. The respect one has for oneself becomes the model for the respect one receives from others.

 

by Stephanie Olson, Co-Director of Deaf and Hard of Hearing Infusion at Hands & Voices

and

Lynne Canales, Itinerant Teacher, Englewood Public Schools

 

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Shelia Cargile: “More Than Fine”

August 17, 2017

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Shelia Cargile, director of Hands & Voices Mississippi, passed away in a tragic car accident on May 28, 2017.  She passed before she got to see Guide By Your Side implemented in Mississippi. I wasn’t sad for Shelia. I know where she is. I know she is with her mom. I was sad for those of us left here: John, her husband of 19 years, her children, Eli, Emily and Audrey, her twin sister Sherri, her father, and hundreds of friends. I believe the most important thoughts about Sheila belong to her husband and children. Sheila Cargile was a woman devoted to her Christian faith – as is her family.  Their words will reflect this faith and aren’t intended to offend anyone.

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“She was loving, always reading to us, she tried her best to make sure she was doing right, she was and is a child of the most high God, she loved to sing and was on the praise team, she was always smiling, she fought her good fight and I believe that if we fight ours we can see her again someday.”

Emily Cargile

“I love my mama because she was always loving and gentle, she was a great teacher, she loved Jesus, and she was more than just a mom. She was an amazing, fun mom that was also a great singer.”

Audrey Cargile

 

“Everyone has a first ‘true love.’ My Sheila/mom is my first true love. She was/is the definition of beauty and restoration. She carried herself in a more intelligent and Godly manner than 90 percent of people alive. She was fearless and discerning. She was exactly what I look for in a woman.”

Eli Cargile

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“Sheila: a precious gift from God. A beautiful, remarkable wife and mother. The most diligent, sincere, genuine person I’ve ever known. Always smiling and uplifting to everyone around her. A vibrant woman who sought God in everything. She wanted the best for everyone and tried to help them achieve it. She was selfless, joyful, an absolute treasure. Having her as my wife is my greatest achievement.”

John Cargile

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Shelia was fiercely loyal to and madly in love with her family. I have only known her for four years, but felt like we had been connected for a lifetime. The stories she told of her family were beaming with pride. Shelia had a way of being a cheerleader to everyone. She was always smiling. She was a natural encourager. Sheila loved. She loved people. She loved animals. You never knew where Shelia’s adventures were going to take her and her kids. One day she would be tutoring homeless kids. A few months later, she would be loving on shelter animals. She was all things to all people. She was and is a champion for the deaf and hard of hearing children in Mississippi.

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Shelia was an advocate. Through her work with Hands & Voices Mississippi, she touched thousands of lives. I loved being a part of the “Shelia & Julie” that worked to get MS H&V Guide By Your Side started with the help and guidance of EHDI-M and Hands & Voices headquarters. We we’re equally obsessed. Life got in the way sometimes, but we always worked together to navigate our way through being accidental leaders. Sheila had a way of talking to you that was so empowering.  When dealing with tough situations, she would exercise restraint in a beautiful way. She was sugary sweet. When you were with her- you felt like the only people in the room.

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We had a song together. “More Than Fine”. Shelia wanted “More than Fine” for H&V MS (GBYS) and the families she served. She wanted “More Than Fine” for her husband and kids. Sheila will never be replaced. It will take multiple people to carry on her legacy.  She was Chapter Leader, ZOHO manager, newsletter mailer, event coordinator, legislative maven, meeting and workshop attendee, constant networker, consultant for many different facets – just to name a few- joyfully all while homeschooling her three kids and prioritizing spending time with John when we had off of work. She did it all. Sheila is a giant in the faith, and a giant to her cause I, along with many others, feel like we can’t do this without her. We won’t have to carry on this work without her. She searched out, cultivated, and even equipped us with the skills we need. Many people have come forward to take over portions of what she did for MS H&V. Like a friend and Board Member Stacy DeZutter said, “We are going to honor her by carrying on her vision”.

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For Shelia, H&V MS GBYS was birthed despite having to work through pain and travail. Shelia, I thank you for your friendship and I love you fiercely. Thanks to you – your family, friends, and MS H&V will be “More Than Fine”.  On July 15, 2017, Hands & Voices MS Guide By Your Side posthumously honored Sheila in recognition and appreciation of her many years of distinguished service for the deaf and hard of hearing children of Mississippi with the ” More Than Fine” award presented to her husband, children, and sister.

It’s time for all who may to continue and rise up so we can be for her children and those to come what Shelia tirelessly was to ours.

“We are going to honor her by carrying on her vision,” said Sheila’s friend and Board Member, Stacy DeZutter.

Julie Seawright

Program Coordinator
Hands & Voices MS Guide By Your Side

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Elizabeth Albers: Language in Any Form is a Beautiful Thing

June 12, 2017

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.

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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.

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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.

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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.

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Alyssa Pecorino: There’s No Place Like Camp

May 17, 2017

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It’s the end of June.  School has let out and it’s time to enjoy the summer.  Mom and Dad are helping me pack my things for two weeks away at summer camp.  I have never been to camp before and I’m excited to try something new, yet I’m nervous about who I’m going to meet.  

Will I be able to understand them?  

Will they understand me?  

Being a 10 year old, oral, mainstreamed, hard of hearing child, I was never exposed to Deaf culture or American Sign Language.  All I had was the knowledge from Linda Bove of Sesame Street’s sign language book and the occasional commercial or blurb on television featuring Deaf people.  

What was this deaf camp going to be like?  I have a hard enough time understanding people who speak, now I’m going to immerse myself into another language and get introduced to a whole new community.  No pressure there, right?

Moreover, how did we get to this point?  

Like most parents, my mother researched what she could (before the internet and Google) and got advice from everyone including her younger sister, who is a highly regarded speech pathologist on Long Island.  My aunt made her point clear: yes, your child is succeeding orally and using what she has in a mainstream setting, but socially she’s falling behind.  You need to send her to a camp for Deaf and hard of hearing children so she can develop her identity and learn all those wonderful things we don’t learn in school.  The education that children get from camp is just as valuable as a formal education setting, if not more.  This is how my parents came across Camp Isola Bella in Salisbury, Connecticut.

Camp Isola Bella is the oldest and longest running camp for Deaf and Hard of Hearing children in the country.  It’s a picturesque island in the middle of Twin Lakes in Salisbury.  This camp beckons Deaf and Hard of hearing children from all over the world to come enjoy their program and develop their identities.  I was fortunate to be one of them from 1988 to 1993.  Little did I know that the nervous child my parents dropped off would grow to be a confident young teenager just from two weeks in the summer.  I went from crying every night to laughing every day and eventually helping new campers acclimate.  My crying wasn’t from how people treated me, but rather from me adjusting to a new environment and preparing to reveal my new identity.  The caterpillar was becoming a butterfly and this is a dramatic change that was bound to shed a few tears.  Besides, as I wrote to my mother that first week, it’s okay to cry because none of the other campers could hear me anyway.  :o)

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Let’s fast forward to June 2000.  I’m now 21 years of age and more excited than ever to go back to camp.  It was the only place I truly felt happy and free to be myself.  This time, I was going back as a camp counselor and newly-certified lifeguard.  Every fiber of my being is anticipating a wonderful summer where I finally get to give back to the camp that gave me my identity and a community to belong to. I couldn’t wait to welcome those first timers to camp, especially those who are in the same shoes that I was in back in 1988.  In my mind I was only going to do this for a summer or two before getting a full-time job.  After all, how could I possibly be able to make my schedule work to be able to work here in the summers? Could I be lucky enough to be able to do this for more than one summer?  

 

Fast forward to today: it’s now my 18th summer at Camp Isola Bella.  I went from being a teacher’s aide at various schools on Long Island to a teacher in both New York and Connecticut to an administrator at the American School for the Deaf.  I worked my way up from counselor to Camp Director and I have no intention of leaving any time soon.  When you find a place that isn’t a job but rather a passion that requires you to pinch yourself to believe you are lucky enough to be working there, you don’t leave.  Seeing new and old campers come every summer to a place where they are free to be themselves, learn the meaning of resilience and develop their identity–that is a place to be cherished.  It’s awesome–which is why our theme this summer is “Believe in *A.W.E.S.O.M.E.!”, which stands for Adventurous World of Experience with Signing Opportunities and Meaningful Education.

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Let me just share one story with you before I wrap up this article.  Many parents are not only concerned about sending their children away from home, but also hesitant that their child will thrive in an environment that doesn’t use technology.  Yes, that’s right, most camps don’t allow phones, iPads, laptops, etc.  We’re one of them.  We had a young teenager come a few years ago who was anxious being away from home for the first time, but not only that, she was upset there was no television or wi-fi.  After a few days, she adjusted and soon forgot about the lack of technology and focused more on being with people and making friends. She came back the next year and admitted she wasn’t looking forward to being without her TV again, but enjoyed the program and that helped a little with the anxiety.  She was adamant that she MUST have TV and looked forward to getting it back when camp was over.  Naturally we all chuckled and quickly we forgot about the technology again.  

Finally, during her third year, I walked down to the waterfront where all the campers were lined up to do the swim test and I gave her a warm hug and welcome back to camp.  I teased her and asked if she missed her TV.  Without skipping a beat, she opened her arms as if to show off the island and waterfront and exclaimed:  “THIS is my television!”  

I immediately welled up and gave her the biggest hug I could muster.  THIS is my reason for working at the greatest place in the world.  There is no place like camp.

If you haven’t already, please consider sending your child to camp.  It doesn’t have to be at Camp Isola Bella, but can be at any one of the many camps for Deaf and hard of hearing children around the country.  As I mentioned above, it’s an invaluable experience for any child, but more so for those of us in the Deaf and hard of hearing community.

Alyssa Pecorino, M.S.

Questions about sending your child to camp? You can reach me at Alyssa.Pecorino@asd-1817.org

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Helen Mackay: Turning the Tables

August 1, 2016

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I cried today.

I went to a Deaf community meeting. No interpreter available for signing impaired people like me. I went anyway, keen to know about the new voting options for the local Deaf Society and new club room plans. I took my kids. One hearing. One deaf.

Today. The. Tables. Turned.

For just a few hours I experienced a little of what it must be like for my deaf daughter in a ‘hearing’ world. I think I understood about 30-40% of what was being signed. Enough, I think, to fill in the blanks with context. Perhaps as much as my deaf daughter picks up when reliant on lipreading when people don’t sign to her or caption TV. I will never know if I did understand so there’s a nagging doubt I missed something, but I think I’m OK.

But it was hard. My head hurt so much it is throbbing, still, even as I write this.

I concentrated intently on the signing in front of me, unable to be distracted by kids tapping on my shoulder for me to do something. I simply couldn’t multi-task, I had to focus on the people right in front of me. The note pad in front of me, rendered redundant as I couldn’t take my eyes off the ‘speaker’. The distant but loud noise of a builder banging felt out of sync with what my brain was trying to do visually. I had to close the door to help drown out the background interference. My daughter tells me sometimes she just has to take her hearing aids off at school as she cannot focus with them on “mummy they don’t help, its just noise”. Perhaps this is what I was experiencing inside my brain in reverse.

I felt compelled to get up and ‘sign’ to the community about something I felt strongly about. I was nervous. As a sign language beginner, with every sign I made, I was conscious that it was far from perfect and desperate that people would understand me. Perhaps this is the same experience my daughter has when she has to stand up and speak without hearing her own voice. Without knowing whether her words sound right and looking for reassurance from her friends to let her know she has been understood or turning to me for assistance with a word she struggles with – just as I had to fingerspell words I could not sign. I looked to the crowd who supported me by signing the word I was stumbling on. But I was vulnerable. The emotion of it all – the subject I was signing about and the way I felt, the tears dripped!

When it came time to leave, my eldest daughter wanted to stay. She was at home.

This is not the first time this year I’ve cried at a Deaf community event. A few months ago, it happened twice in a week at events held to celebrateDeaf Aotearoa New Zealand Sign Language week.

The first, was a solo outing for me. No kids, no husband. Just me. A special screening of the British Deaf Association film the “Power in Our Hands” hosted by Terry Riley, visiting from England to attend the World Federation of the Deaf – Official Board meeting.

It’s a powerful film, complete with captions so people like me can follow. It tells the true story of suppression / oppression of the British Deaf community and the gradual recognition of British Sign Language and deaf culture in British society. The film had captions and the signed introduction by Terry was interpreted. I was challenged by the film but linguistically I was still in my comfort zone. My needs were “accommodated”.

However the message of the film was so incredibly powerful it cut me to the core that this might happen to MY daughter. I felt ever so grateful for people like Terry who has been instrumental in the UK to make the deaf voice “heard”. He has been instrumental to the British Sign Language Broadcasting Trust who produce wonderful video directly relevant to the Deaf community (and accessible to people like me with subtitles). I resolved, as I powered down the pavement away from the event, that the “power” was indeed “in my hands”. As a parent I have a responsibility to ensure I do everything to make my daughters’ lives full, and free from discrimination. And to learn more sign. (My daughter is fluent receptively already and has a full time interpreter in her mainstream school where she is the only Deaf child in a roll of 400+. Our family are all learning to sign).

Me and my Deaf daughter

In another event that same week, we went to ‘listen’ to Drisana Levitzke-Gray speak – or should I say sign, to a Deaf community event, about her experiences as Young Australian of the Year. There was an interpreter. Again I was moved to tears and compelled to stand up as she shared her experiences of mainstream schooling, rising above the challenges of isolation and her advocacy for children like my daughter. Her message resonated with me, and both my daughters. Again, I strengthened my resolve to be a ‘hearing’ ally. A partner for good.

But today with no captions, no interpreter, no ‘signing aid’ and no voice, I had no “accommodation”.

I knew there wouldn’t be any, but I choose to go anyway, just as my daughter has had to do every day this week to her wonderful school (her educational interpreter has been away). Except that she doesn’t have a choice, she must go to school regardless, like tonnes of other deaf & hard of hearing kids that don’t have their needs met either. Perhaps they are Cochlear Implant users, denied teaching assistance as they are “cured”, or with an inability to access sign language lessons because the kids are oral and not on the priority list for sign classes. Perhaps they are hearing aid users who are not ‘quite’ deaf enough, but struggle to piece it all together using a combination of lip-reading and technology.

Today, it was just me. Laid bare, in a room of people about the same size as my daughters year 6 class. I felt vulnerable, scared and exhausted as I concentrated to understand and then be understood.

The tables turned, on me, today. But you know what, that’s no bad thing.

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My daughter is deaf. Like many deaf children she was born into a family of hearing parents. Being deafened post-lingually she talks. But she is most at ‘home’ with her deaf friends. They get her. Many many times since she went deaf, I have fought to be sure she has full access and treated equally in society.

Today, I cried because I realize how much load this ten year old carries, just to get through the day with a smile, let alone understand and be understood.

I’ve done deafness ‘simulations’ before and I thought I ‘got’ it.

But today, I really got it. You know the best thing? When I cried, no-one judged me. No-one stopped me and said (or signed) “you can’t do it. I was welcomed, appreciated supported and encouraged. For that, I am truly blessed.

You see, regardless of whether some form of ‘technology’ may help my Daughter now or in the future, she is Deaf. She speaks, she signs, she has choice. She’s Deaf and proud, and I am thankful she is growing in her own Deaf confidence.

I am sure some people will say that I shouldn’t cry about this stuff, and definitely not in front of my kids. But they hugged me tonight and as I signed “I love you” to my Deaf daughter she said “I love you” back. My hearing daughter did the same. I need to be able to switch in the moment, just as they do daily. To see me struggle too helps them both know, life ain’t easy, but it sure is what you make of it.

As I write this, again I cry. But tonight, they are happy tears. I know that my daughter has a community of support who get it much more than me. I too value the friendship and welcome. My hearing daughter also gets to see and play with other children who too have deaf brothers and sisters and that’s cool too.

To everyone that hesitates to get involved in the “Deaf” community, I offer these words of encouragement. Do it! Let your kids have choice.

I know we are all stronger together – Deaf & Hearing. For that, tonight, I give thanks. “Hands wave”.

In case you are wondering, I’ve also made a note to myself. I must NOT cry at the next event!

Helen Mackay

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More Than We Know ~ Bonnie Leiser (Grandmother)

January 15, 2014

Apple picking with Nana

“We will teach you all that we know. You will teach us more than we know.” I reread these lines from a welcoming prayer I had written to my first granddaughter for her birth, as I tucked in both of my precious little girls this past new year’s eve. We were tending to them that night so their mom and dad could go out on a date. As the year turned the final corner and a new one loomed ahead, I gave pause and thought about the true depth of what these words had come to mean for me.

Our first granddaughter, Ashlin, was born in a very successful water-birth, We had the honor of being present for that miracle. Both mama and baby were fine, healthy and robust. We even photographed the truly exceptional moment when Ashlin actually reached up towards her father’s face, as he leaned in to say hello to his new daughter. Our son, Walker, and his beautiful wife, Helen, had made us grandparents at long last! We were ecstatic!

Ashlin was such a sweet little baby, so happy, responsive, so loved. I remember bowing over her and talking to her and hearing hear laugh and smile up at me. As she grew, her sweet demeanor remained. Time went by and yet she hadn’t spoken a word. She was nearly two and not talking yet. My son and I were convinced she would speak up when she was good and ready to do it, on her own timeframe. I guess, looking back, we were in denial, however, my husband and Helen had some concerns. One day at her doctor’s appointment it was suggested that hearing tests be done. The result of the test told us that Ashlin was profoundly deaf. It was the most shocking and devastating news I had ever heard. There was no family history of deafness that we knew of, nothing to help us understand how this could be. We reeled with the news, passing through the stages of grief, loss, confusion like moving through heavy water. How would my beautiful granddaughter ever hear the rich beauty of music, so dear to my heart? How would she know the sounds of nature and life? How would she communicate with us? How could she ever hear the words “I love you”?

Then the family had to move into action to find out what we could do. This was a fact of life for us and we simply had to move ahead. Helen and Walker began a search into all of the options which might be pursued. We all learned so much. They told us about an incredible procedure called cochlear implants. I had never heard of this. It took me some time to come to accept it, as I was concerned about the potential dangers to Ashlin. Through the help of a friend, I found a family whose young son had been implanted. That family was gracious enough to meet with me and let me ask questions of the father and son. It really helped me to go down the path of cochlear implantation. I fully understood that I was just the Nana and it was not my decision to make, but I desperately wanted to believe it was the right thing to do.

The day came when Ashlin, just barely two years of age, got her first implant. It was so hard to see that little baby girl being carried off into the operating room. The family waited in agonizing tension for her return from surgery. I filler the air with my quiet prayers for her, asking that she come back to us; asking for her protection. At last she came out. The poor thing looked like she had been hit by a truck. But, after a while her little spirit awakened and she was with us again.

Our second beautiful granddaughter, Mikaylin, was born in another successful water-birth. We all held our breath wondering if she too would be deaf. This time testing was done early on. We awaited the results with stilled hearts. The answer came back that she was, indeed, deaf. How could this be? Again, we were thrown into sadness. And yet, this time we had more hope. We knew there was a way for her to hear; and she had an older sister who was thriving.

Mikaylin had her first implant surgery when she was 10 months old. I’ll tell you, it doesn’t get any easier to see a second baby girl carried off to the operating room. The prayers were every bit as strong for her. Even though we had been through this before, twice, it was still so hard. But, Mikaylin bounced back from her surgery very quickly and she was in full force very soon.

I think, honestly, that it is a blessing that both girls are deaf. Both now have bilateral cochlear implants. They share a bond that none of us can even fully fathom as hearing adults. They will always have this bond. Their relationship will always be strong and magical.

Both of our beautiful granddaughters are strong, healthy, and smart. They love to dance and sing. Their speech is clear and their diction as good as, or better than, hearing kids of the same age. They have been going to school since age three and had lots of special training from a wonderful school, They are now even learning sign language, which pleases me immensely. I hope that they will master several languages in their lives. The girls have bright futures with unlimited possibilities.

We thank these girls for being in our lives. They have and will continue to “teach us more than we know.”

 

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