You Can’t Possibly Provide Support Without Bias

July 24th, 2017

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

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

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

Here’s more on Supporting Families without Bias.

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

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

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

hands and voices babies

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

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

It breaks my heart.

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

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

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

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

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

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

www.handsandvoices.org 

Karen Putz

 

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Kathy Loo: Learning What is Best for My Son

June 26th, 2017

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

As parents of deaf children, we face challenges that most other people don’t have to consider in everyday life. The only thing we can really do right is to give it our all and hope for the best. Most of all, know that your best is going to be different from someone else’s and that’s okay. 20160131_142735-1

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Elizabeth Albers: Language in Any Form is a Beautiful Thing

June 12th, 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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Support for Military Families with Deaf and Hard of Hearing Children

June 1st, 2017

jenny and chelsea

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

 

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Janet DesGeorges: Embrace the Past, Change the Future

May 31st, 2017

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

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

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

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

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

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

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

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

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

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

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

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

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

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

DEAF education/deaf EDUCATION

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

Not just the what, but the how.

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

But when it works well, it can be brilliant.

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

It got worked out…

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

When all team members are pulling together, access happens!

The Power Seat of Advocacy

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

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

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

janet selfie

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

I challenge you today

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

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

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

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

sara and Janet

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

By Janet DesGeorges

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

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Savannah: My Deaf Journey

May 30th, 2017

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Hey!

My name is Savannah. I am a hard of hearing high schooler, and I use a cochlear implant and a hearing aid to help me in my everyday activities.

From birth, I was diagnosed with profound hearing loss in my left ear and moderate hearing loss in my right. I have always known that I was deaf, and this has been a fact of life for me.

My first memories of using technology were in pre-school. I wore an FM receiver in my right ear and the teacher would wear an FM transmitter. Now, this transmitter looked quite different than the transmitters commonly used today. It was a large box, clipped to their hip, with a thin cord running up their chest and a tiny microphone attached to their shirt collar.

My kindergarten teacher named it “Tina the Transmitter.”

I used my receiver, complete with a bright pink mold, all the time. My mother would tape it to my ear during karate practice, so I could punch, kick, and hear while feeling secure.

Then, in first grade, I got my first hearing aid. It had a giraffe pattern on it and I loved it. So much so that my mother fought tooth and nail for my audiologist to allow me to get one in my left ear.

Why was this an issue, you ask? Hearing aids amplify sound and sends the waves through your cochlea and to the auditory nerve. But my left ear, audiologists said, wouldn’t be able to pick up the amplified sound, and would therefore be a waste of time. Nevertheless, we persisted, and a few months later I had bilateral hearing aids.

Throughout my elementary years, my parents would sometimes ask me if I wanted a cochlear implant in my left ear. I would adamantly refuse – saying I didn’t want to be deaf but rather hard of hearing.

In seventh grade, my tune changed. Middle school brought new challenges and new experiences. I began debating the pros and cons of a cochlear implant. I still used my hearing aids as well as a newer version of an FM transmitter.

The summer before eighth grade, I got the surgery. It was such a rewarding experience. While I was definitely scared going into the operating room, that fear dissolved quickly. I knew that I had made the right decision.

Master ear

Being turned on was really interesting. There were all these new gadgets and computer programs that controlled my head! My hearing rapidly improved from initial beeps to normal sound. While aural therapy was boring, it was worth every second to be able to hear new and exciting sounds. I learned a lot about sound booths and frequencies in that year!

Finally, I reached high school, where I use Cochlear’s Mini Microphone as an alternative to the transmitter I had once needed. Today, I am able to hold conversations at lunch and collaborate with classmates using this technology.

Being deaf is an important identity to me. I have changed a lot since the days when I rejected the very idea of getting implanted. While I may not understand everything people say to me, I can hear much, much more than I ever realized I could.

An interesting thing about being deaf/hard of hearing and using technology is that you live on the border between the deaf and hearing worlds. I really enjoy explaining to hearing people about my ears and my needs, and hopefully educating more people about my community and myself. But being on the border of my two worlds mean that my “people,” so to speak, are a select group of individuals. While I do try hard to connect with my deaf identity (learning ASL and deaf culture), and I try and integrate into hearing culture everyday, I have come to realize that my world is the border.

Being deaf is challenging. I have to deal with projects involving music and with watching videos without subtitles and with bad audio. Yet being deaf is rewarding as well! I have the ability to share with people my stories and spread awareness for deaf/hard of hearing people.

mydeafjourney2

I even created an Instagram account, @mydeafjourney, that I use to share my everyday experiences with deaf and hearing people alike!

So, if I had the chance to stop being deaf, I wouldn’t take it.

Being deaf is who I am. And I don’t want to erase my identity.

<3 Savannah

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Alyssa Pecorino: There’s No Place Like Camp

May 17th, 2017

alyssa at deaf camp

 

 

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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Why My Child Would Not Wear his Cochlear Implants

May 15th, 2017

lost-processor

 

Why won’t my child wear his cochlear implants?

As parents of a child with cochlear implants, the answer to this question shocked us and made us feel as if we were torturing our child.

Our child was first implanted at about a year old and was seeing an Auditory Verbal Therapist (AVT) on a weekly basis.  Our son could definitively hear with his implant and responded well after activation.  As the weeks went on, our therapist would tell us that our son was not hearing certain vowels or consonants sounds and recommended we see our audiologist to have his map adjusted.

We went to our audiologist and told her that the AVT said our son was not hearing the /p/ or /s/ sound (for example).  The audiologist plugged our son’s processor up to the computer and began saying /ba/, /ba/, /ba/ over and over at different voice levels watching to see how our son responded then she would make changes to the map.

We made this trip to the audiologist constantly over several months because the AVT kept telling us that our son was not hearing different vowels and consonant sounds.   We were remapping our son’s processor so often that we were starting to hear /ba/, /ba/, ba/ in our sleep. Then one day, our son just refused to wear his processor.  He would throw off the headpiece as fast as we stuck it back on his head.  Unfortunately, He didn’t have the language ability to tell us why he wouldn’t wear the processor.  Our AVT suggested we go back to see the audiologist to check the equipment to make sure it was working properly.

We set-up an appointment with the audiologist and she brought in a representative from the manufacturer to help go through diagnostics of the equipment to see if anything was wrong.  After a thorough review, everything seemed to checkout.  Sadly, our son still refused to wear his cochlear implant processor.  Our audiologist’s recommended that we do our best to keep his headpiece on at all times, maybe use a headband, noting that maybe this was more of a behavioral issue.

Over the next couple of weeks, we did our best to keep our son’s headpiece on, but he wouldn’t have it. The AVT was starting to have problems working with our son.  He started to have new behaviors and was not responding to therapy. We were feeling that something was wrong with our child other than hearing loss.

Eventually, our AVT recommended we see another audiologist to get a second opinion about our son’s equipment and map.  She sent us to an audiologist who is an expert working with cochlear implant pediatric patients.  This new audiologist was known for fixing issues children may be having with their implants.

Mapping Sounds

I remember how distraught my wife and I were as we shared our story with the new audiologist and showed her how our son was resisting wearing his processor.  She assured us that she would look at everything and see what she could do to help.  After running diagnostics, the audiologist turned to us and said, “There’s nothing wrong with your child or his equipment.”  After a massive sigh of relief, the audiologist told us our son’s map was over-stimulating and probably the main reason why he is resisting wearing his processor.

The audiologist used the analogy of driving through the mountains with the radio volume turned all the way up with bad receptions. “That’s how your son’s processor is mapped,” she told us.  She couldn’t blame him for not wanting to wear it.

We felt horrible, as if we had tortured our child for weeks trying to make him wear his headpiece all the time.

What happened next truly shocked us.  This new audiologist began mapping our son using different consonant and vowels sounds, no more /ba/, /ba/, /ba/.  With her partner, they elicited responses from our son using different vowel consonant sounds like /s/, /oo/, /ah/, /p/, /t/ etc.  After they were done, our son seemed very happy and joyous about the sounds around him.  From that moment on, our son never had a problem wearing his processor again.

I share this story because too often I hear similar stories and the recommendation to the parents is always try to keep your child’s processors on.  A behavior, such as refusing to wear a processor, is generally a symptom of a problem that a child can’t necessarily express. A behavior becomes the only way to communicate.  If your child is refusing to wear their processor(s), find out why.  Your child might not like the feel on their ear or the magnet strength is to strong, etc.  If the physical comfort of the processor is not the problem, check with your audiologist about the equipment and map.  If you walk out of your audiologist office and they have not resolved the issue, get a second opinion.

Don’t torture your child like we did by making them wear a poorly mapped processor.  Every day, when putting on your child’s device, do a simple check to see if your child can repeat or respond to different speech sounds or words.   If you feel there is a problem, talk to your speech or AVT therapist at your next visit or schedule an appointment with your audiologist.   Finally, if your audiologist doesn’t map your child using different speech sounds, it might be time to find a new audiologist.

More about the author

Eric Sherman is the inventor and founder of Ci Wear, the patented specialty shirt designed to secure and protect cochlear implant processors. Ideal for sports and water activities. No need for added accessories or clipping processors to collar. Shirts are manufactured in the USA and are available in youth and adult sizes at CIWear.com

 

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Camps for Deaf and Hard of Hearing Children

May 5th, 2017

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Aspen Camp

Aspen, Colorado.

http://www.aspencamp.org/

Bill Rice Ranch Bible Camp

Murfreesboro, Tennesee

http://www.billriceranch.org/deaf-ministries/deaf-camp

California Hands & Voices Family Camp

Julian, California

http://cahandsandvoices.org/index.php/dhh-family-camp/southern/

Camp Discovery

Western Pennysylvania

Camp Discovery 2017!

Camp Endeavor

Dundee, Florida

http://www.sertomacampendeavor.net/

Camp Juliena

LaGrange, Georgia

Georgia Center for the Deaf and Hard of Hearing

Camp Mark Seven

Old Forge, New York

http://www.campmark7.org/

Camp Isola Bella

Taconic, Connecticut

http://www.asd-1817.org/page.cfm?p=479

Clarke’s Summer Adventure

Easthampton, Massachusetts
https://www.clarkeschools.org/summeradventure

Deaf Camps, Inc.

Knoxville, Maryland

https://deafcampsinc.wordpress.com/

Deaf Film Camp

Old Forge, New York

http://www.deaffilmcamp.com/

Indiana Deaf Camp

Warsaw, Indiana

http://indeafcamps.org/

John Tracy Clinic Family Sessions

Los Angeles, California

Summer Sessions for Families

Lions Wilderness Camp

Wrightwood and Nevada City, California

lionswildcamp.org

 

OYO Camp

Perrysville, Ohio

http://www.oyocampnuhop.org/

 

Space Camp

Huntsville, Alabama

http://www.spacecamp.com/space/weeklong

Wisconsin Lions Camp

Rosholt, Wisconsin

www.wisconsinlionscamp.com

  If you know of other camps for deaf and hard of hearing children, email us the information and a link:  karen@handsandvoices.org
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From Bystander to Believer: My journey as a Hearing Mother

April 17th, 2017

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

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

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

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

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

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

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

My mind filled with questions and doubt.

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

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

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

What if he says he wants to be a fireman?

How do I best support him?

Should he get hearing aids?

Should I make sure he has speech?

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

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

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

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

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

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

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

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

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

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

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

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

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

Lynell Smith

 

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