Raising a Deaf or Hard of Hearing Child

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.

“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

“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

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.

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.

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”.

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

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.

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)

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.

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

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