Posts Tagged ‘raising deaf and hard of hearing kids’

Scott Smith: D/HH Plus, Just a Little Bit

August 23, 2018

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

By Scott Smith, Nebraska H&V

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

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

Disclaimer: I am not cool.

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

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

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

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

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

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Coming Full Circle With Technology

December 18, 2017

Joneskids

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

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

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

Motivated by Necessity

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

Finding A New Passion

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

 

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

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A New Book for Families with Deaf and Hard of Hearing Children

April 11, 2017

HV book

Maria Renninger recalls seeing the word “refer” flash on the screen after her baby girl’s hearing screening hours after birth, and wondered what it meant. “Refer to what? The operating manual?” She found herself wishing for an operating manual many times during her early years as a new mom and on her unexpected journey raising a child who is deaf or hard of hearing.

This is just one of the 26 personal reflections shared in a new book by Hands & Voices, We Are Hands & Voices: Stories for Families Raising Children Who Are Deaf/Hard of Hearing, from moms and dads raising children who are deaf or hard of hearing, with a few insights from young people finding their way, and six gems from women who are Deaf or hard of hearing themselves.

“It wasn’t cheating, it was playing fair,” notes Stephanie Olson, when her sister and brother signaled her how to get to home base during nighttime games in her neighborhood, in the darkness only imaginable far from city lights. Over time, hearing parents learn much from their children and from adults who have hearing differences that begin to shed light on what daily life is like, and CAN be like, when we begin to experience the world as our children do. Playing fair means understanding access and appreciating differences.

Knowing that there is no better way to connect than the art of story, four experienced moms (Karen Putz,  Stephanie Olson, Janet Des Georges and Sara Kennedy) put this book together to shed light on the journey and to celebrate our children, who teach us again and again that “the little things are not little at all,” just as author and mom Bianca Birdsey says about raising her daughters who are deaf in South Africa in her story.

bianca and girls

Here is what others are saying about the book:

“I was overwhelmed when our daughter was diagnosed as deaf, and I searched for the stories of other parents who had helped their children navigate through a hearing world and lead productive, fulfilling lives.  It was these connections, like the ones detailed in “We Are Hands & Voices,” that allowed me to understand that I was part of a larger, welcoming community.  The powerful insights and wisdom you will find in this book will inspire you.  I wish it had been around 16 years ago!”

– Lee Woodruff, parent and best-selling author

 

“Positive parental supports is an integral part of a child’s life.  Having the support of other families who have walked a similar path, well, that’s priceless.”

 – Andrea Marwah, parent and Illinois Hands & Voices, President

 

“One of the best outcomes of a book of stories is that it illustrates the varying experiences, individual characteristics, and often unpredictable paths taken by individuals and families. Stories break down walls. In this book you will find that it is not hearing status that defines who these people are; rather it is their life experiences that shape who they become.”

– Cheryl Johnson, parent and advocate, Co-Founder of Hands & Voices

 

“These deaf kids may have a hearing loss, but their hearing loss doesn’t necessary mean that it has, controls, operates or owns them. This book has great and incredible insight on how our hearing loss doesn’t necessarily define us, but that we define who we really are.”

– Justin Osmond, member of the world-renowned Osmond Family, motivational speaker and author

The digital copy is available on Amazon: HV Stories for Families

To order hard copies or bulk orders:

We are Hands & Voices 2017 order form (1)

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What I Learned from Raising Three Deaf and Hard of Hearing Kids

December 10, 2013

david graduation

I’m nearing the end of my parenting season.  My kids are on the cusp of adulthood (or so, they think.)  At 20, 18, and 16, they’re at the point where they are deep into their own lives.  I’ve heard it said you never end your journey as a parent, so I’ve segmented this into seasons instead.  I would say the school years were one long winter season! Fortunately, I like snow skiing, so there were lots of times when we just skied through it. Other times, the school years felt like being stuck on a chairlift for hours with the wind and snow blowing through my bones. Yeah, parenting is like that!

Here are some random things that popped into my mind this morning as I reflected back:

Finding Support is a Blessing

In the early years of raising three deaf and hard of hearing kids, the most crucial piece for me was the support of other families with deaf and hard of hearing children.  They say it takes a village to raise a child and you’ll have to create that village for your kid.  I stayed open to meeting as many different families as possible. I didn’t care about the communication modes or methods, that wasn’t important to me. I wanted to connect over the common bond of raising our deaf and hard of hearing kids and getting through the occasional challenges.  I found families everywhere– in my town, state, across the U.S. and thanks to the Internet, literally everywhere.  I set up play groups in my home, at the mall, in the parks, and at the pool.  We’ve lost touch with some of the families who we connected with during the early years and have formed second families with others.  Each one of them had an impact on my kids while they were growing up. There’s that human need for connection and I just wanted to fill it on every level.  We sometimes drove for hours to attend an event with other families. There were some days I questioned the purpose of stuffing three screaming, cranky kids into the car for a short event, but in every case it was always worth it.

 

Kids Need Kids

Which leads me to the next random thought: the important of peers.  When I was growing up, I was the only kid with a hearing aid in my school–until I met my first hard of hearing friend, Shawn, in high school.  Just seeing the hearing aids perched on Shawn’s ears wasn’t enough to get me to connect with her.  If anything, I didn’t want to be reminded of my hearing status. Shawn and I were as different as night and day. Without the common bond of hearing aids, we likely would have never connected but a stubborn itinerant teacher insisted we spend time together.  Shawn was a rebel, a “rough around the edges” gal. I was a Goody Two Shoes.  She introduced me to brass knuckles and numchucks. I taught her the value of paying attention in class. We are still friends today.

At the time, I didn’t realize how important it was for me to connect with another person who also struggled to understand day-to-day conversation and understood the loneliness of being left out.  So when my deaf and hard of hearing kids were growing up, I connected them with as many other deaf and hard of hearing kids as I could.  And again, I didn’t care about how much or how little hearing they had, whether they had hearing aids, implants, or none, or how they communicated.  My kids grew up with kids who cued, signed, spoke, or combined–you name it.

 

Deaf and Hard of Hearing Adults are Essential

I can’t stress this part enough. Connect your kids with deaf and hard of hearing adults while they’re growing up.  If your kid wants to be a fireman, doctor, lawyer, pilot, pharmacist, engineer, janitor, entrepreneur, nurse, counselor, teacher, author, professional athlete, or Nobel Prize winner–go find a deaf/hard of hearing adult living that dream and connect your child to them.  Deaf and hard of hearing adults are out there in all walks of life just like everyone else, but it’s essential for deaf and hard of hearing kids to know them, see them, and connect with them in some way.  If you can’t find someone on the path your child wants to take, then perhaps your deaf/hard of hearing kid is going to be the one to blaze a new path.  Someone has to be the first down a path that hasn’t been taken before–perhaps it’s going to be your child.

 

Last, but Not Least

For years, I tried hard to blend in, fit in, and fly under the radar while growing up hard of hearing.  After I became deaf as a teen, I changed my attitude and embraced the journey.  There’s a line from the movie, “What a Girl Wants” and this line is something I’ve been telling my kids for a long time:

“Why are you trying so hard to fit in when you were born to stand out?”

Our kids were born to stand out. Let ’em shine!

 

Karen Putz

Director of Deaf and Hard of Hearing Infusion

Hands & Voices Board Member

 

 

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