Posts Tagged ‘parenting a deaf child’

Kathy Loo: Learning What is Best for My Son

June 26, 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 12, 2017

We are the Albers Family, a homeschooling family of nine with two children who have severe to profound hearing loss. We entered the deaf/hoh world three years ago when we adopted our son, Matthew. He was five years old with severe hearing loss. We were told that he could hear and talk with the help of his hearing aids. We thought, Okay, we can handle that! We knew that his hearing loss might be worse than what was presented in his file, but we clung to the hope that he could hear and talk with his hearing aids. We began learning some sign language, and researching deafness. We had moments of second guessing ourselves, but ultimately we knew he was our son and that we would do whatever was needed to help him.

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The day we got him was a whirlwind. He came to us showing us pictures we had sent to him. He had no hearing aids. They told us they were broken. That first day he soaked up what little sign language we knew. We remember his first signs, same and different. We knew we had a smart little boy on our hands.  The next day they brought us his hearing aids with no batteries. We managed to find some, and we were so hopeful when he put them in his little ears. He knew exactly what to do.  We tried all the noises we could, there was no response. Our hearts sunk a little. That night, while in China, we got on lifeprint.com and started taking the free on-line courses for ASL. We knew we needed to up our game. This little boy was taking in all the ASL that we could give him. He wanted to know the signs for everything. He was soaking up language for the first time, and he was so excited about it. We wished we would have learned more.

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After bringing him home we started private ASL lessons with a deaf tutor, continued to learn through lifeprint.com, scoured our county for deaf people (there weren’t many), met as many deaf people as we could, did hours of research on the computer and went to multiple audiologist and ENT visits. After several months with new hearing aids that were helping him just a tiny bit, we decided to explore Cochlear Implants. We were torn, because there was such a divide on what the right thing to do is within the deaf/hoh community. Ultimately, after lots of prayer, watching Rachel Coleman’s “One Deaf Child” , and doing more research, we knew we wanted our son to try it. Ten months after being home he was activated. At first he didn’t like the sound, but he grew to enjoy new sounds over the coming weeks and months. I remember about a month after being activated, he heard the sound of a bird chirping outside, and he wanted to know what it was. We worked closely with our audio-verbal therapist who was able to help us know how to teach him to listen. His speech began improving significantly. We knew we had made the right decision.  We’ve continued with English, using sign language when needed. He’s learning to read and write at home and is quickly catching up with his peers.

Fast-forward 3 years. We are now home with another profoundly deaf son, Isaac, who is 4 years old. He was adopted 7 months ago with no language. Unlike Matthew, he had profound hearing loss. There was no hope of hearing aids helping him. But we were more prepared this time. We had so many things in our tool belt. We had a better knowledge of ASL and the deaf/hoh world, we knew the resources that were available to us, we knew what the journey to Cochlear Implants would be, and we had even learned Cued Speech by going to Cue Camp Cheerio. We decided to pursue cochlear implants and got the ball rolling with that right away with our ENT and audiologist. Right now he has been activated about 7 weeks. He’s starting to respond to our voices, but still very far from understanding speech. Since we knew that we wanted to give him access to language right away, we started with sign language from the moment we met him. He quickly grew to expressively use over 150 signs. His first sign was car. He loved looking out the cars through our hotel room in China. Once he had a good grasp of basic signs, where we felt like could effectively communicate his needs to us, we moved to using cued speech. We’ve focusing on using and teaching him cued speech for six weeks. Our whole family knows the system and continues to work on fluency. Receptively he understands a many of the basic phrases we use, and expressively he knows about a dozen words. Every day he adds a few more words to his vocabulary. It’s quite amazing to see his progression.

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This journey has not been simple. There have been ups and downs. Moments of self-doubt. But we keep going. We keep learning and doing what we feel is best for our deaf children and our family as a whole. We’ve learned that the process is always changing and growing too. Their needs may be different year to year. We’ve had to, sometimes, ignore the voices around us, telling us what we HAVE to do for our children. There are an abundance of opinions out there when it comes to raising and educating deaf children! We have, more than ever, learned over these last 3 years that every child is different. There is certainly not a one size fits all or one language fits all or one education fits all when it comes to deafness. The biggest joy of this journey is seeing our boys, who had no language those first few years of their lives, pick up a new word through sign, speech or cue. Seeing their eyes light up with understanding is an amazing thing.

Language, in any form, is a beautiful thing.

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Support for Military Families with Deaf and Hard of Hearing Children

June 1, 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 31, 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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The “Letting Go” Moments of Parenthood

January 22, 2017

 

david as a kidWhen my first child was born, I wasn’t prepared for the experience of my heart being wrenched out during the moments of learning to “let go.”  The first time my husband and I went out for dinner and left the baby with grandparents, I was excited for about twenty minutes. Then I started wondering, “I wonder if he’s crying? (he was going through the colicky stage), did I leave enough breast milk? Will they remember to change his diaper?” and so on.

The first time I let go of my toddler’s hand to take his first steps, he faceplanted hard on the carpet. When the second and third kid came along, I was much more cautious about letting go and waited until I thought they could master the walking thing. Some of that wisdom comes from experience the second time around, and some of it comes from being patient and knowing the time when the kid was ready to master it on his/her own. That’s the fine line of parenting and letting go–figuring out that magic formula and timing.

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We live in an era of Helicopter Parenting–parents who hold the reins of parenting so tight that the kid has little opportunity to learn on their own and make mistakes. But here’s the thing, letting go is a vital part of the parenting transition that enables a child to achieve maximum growth in all areas of life.

When my oldest son was around five, we were at a McDonalds (I know, I know) playland and he asked for an ice cream cone. I gave him the cash and he went up to the counter to order his ice cream. Another parent who was with me was flabbergasted.

“You let him order by himself?”

My oldest son is deaf, and from an early age I wanted him to be independent and competent just like any other kid. I stood back and watched as he ordered his own ice cream. He came triumphantly walking back happily devouring his cone. The other parent continued to order for her deaf child for YEARS after that. She just could not let go and allow her kid to struggle with the ordering process. It was far easier for her to speak for her child and do the ordering.

The struggle is part of the process. In fact, it’s probably one of the most valuable aspects of the parenting gig–letting your child navigate the world and the challenges on their own is one of the most valuable gifts you can give your kid. The letting go stuff is hard. It’s so much easier to do for, or hold on–and wait for a better time or more maturity–before letting go. Yet, by letting go, our kids gain skills and experiences that they wouldn’t have if we didn’t hover so darn hard over them.

The first time I let a child take off with the car and a newly-minted driver’s license my heart was in my throat. And no, it did not become easier with each child because I was reliving all my fears, doubts, and scary thoughts with each child. But the only way around the fear of letting go is to…let go.

steven at RIT

And the first time they leave home…oh my…that’s the ultimate letting go.

Letting go often means giving up control, and that can be so darned tough at times. Here are some tips for navigating those parenting transitions that involve letting go:

Shift Your Perspective: 

Instead of seeing the letting go process as a loss of control, focus on the gain from it: increased independence, learning, and growth. Each time you “let go” and allow your child to experience something new and unknown, both of you grow in the process. Yes, your child may make mistakes or chose poor outcomes as a result, but the lessons learned can strengthen both of you. You can actually stunt your child’s growth by holding back instead of letting go.

Connect with Other Parents:

One of the easiest ways to handle the letting go process is to connect and talk with other parents who have been there or are going through the same process. You will often find that “hindsight advice” is spot on and this will help ease the parenting transition. Knowing that you aren’t alone in the “letting go” process can be comforting.

Connect with Deaf and Hard of Hearing Adults:

When you’re early in the parenting journey with your Deaf/Hard of hearing child, it can be difficult to see into the future years because you’re just trying to get through the day to day stuff. Take the opportunity to meet Deaf/Hard of hearing adults. This is a wonderful way to get questions answered, to see different perspectives and experiences, and to gain knowledge that would otherwise be difficult to find on your own. Take some time to scour the web for stories of Deaf/Hard of Hearing adults in various professions and activities and share them with your child.

 

Karen Putz is the mom of Dave, Ren, and Steven. She is the Co-Director of Deaf and Hard of Hearing Infusion at Hands & Voices. For fun, she walks on water

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Rhonda Bergsma: And This Was the Easy Part

December 22, 2016

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It was a frosty morning that April in 1982, the middle of the month– you’d think it would be warming up here in the Pacific Northwest. But maybe it was my nerves that was sending chills thru my body. We arrived at the Hospital early in the morning to get my labor started. This was my third baby and both previous births were not easy.  I was a bit nervous.

All settled in and ready to go, here we go , one more time, I can do it. This was me self-talking my way thru this ordeal called giving birth. The nurse came in to hook up the drug that would get my labor going, a must since my “water” broke the day before. In those days most people never knew if they were having a boy or girl, but then it really didn’t matter to us since this baby would have a brother who was 5 years older and a sister who was 3 1/2 years older.

To fast forward over all the gory details, labor was extremely hard but not too long, about 8 hours from start to finish. After much struggle, baby boy Bergsma was born. I noticed that all the doctors jumped up and looked concern at the moment of birth. I was so exhausted I could barely whisper “what’s wrong?”

“Nothing,” said the doctor.

But I noticed the umbilical cord was tightly wrapped around the baby’s neck and he was not breathing. He looked very pale and limp, dead-like really. After all that work, was he even alive?  It seemed like an hour went by but I’m quite sure it was only 20 seconds when I heard a wonderful newborn cry.

Whew.

As I looked over at him, he was nice size–I thought, maybe 9 pounds.

I was close he was 8lbs 14 oz and doing pretty well by now. Andy and I were ready to introduce Mitchel Kent Bergsma.
At home, Mitch was spoiled by his sister who loved to sit and hold him. He was a very good baby.  I didn’t know what a good baby was like since both his older brother Tyler and sister Tandi were always crying. They cried so much I didn’t know if I could handle another baby who cried. The first week we are doing good, no crying, and on we went , no crying.

I can’t remember exactly when I took Mitch to the doctor in concern. I laid baby Mitchie on the table and said, “There. Take a look at him, something must be wrong.”

Dr Johnson, our kids’ pediatrician, looked at the baby and said, “What’s wrong?

I told him it’s been months and I’ve not heard him cry yet, so something must be wrong with him. The doctor took the baby and checked him out thoroughly. He turned to me and said, “Well, I’m not sure what to tell you.”

I knew it, I thought, something is wrong!

“I think you have a good baby this time” and then he smiled.

I think I actually cried, never had I actually enjoyed the newborn stage of my other two babies because they cried all day. At this point I don’t actually believe it to be true but I went home and told my husband what the doctor said.
Baby Mitchie was such a good baby that he would sleep 12 hours at night and take a couple very long naps during the day. When he was awake he was always happy. He seemed a bit different though and I chalked it up to being such a good baby. And remember, we had never experienced this up till now.  He was extremely visual, he would watch and copy facial expressions, if you smiled big at him he would do the same back to you with his two huge dimples.

As he lay in the little seat on the table he made such a loud noise that we all covered our ears. It was a weird sound coming out of a small baby I thought. But I had a good baby this time and that’s what they are like I  guess. Looking back, I now know different but at the time, that’s what I thought.
Baby Mitchie was a very huggable baby, so lovable and very happy, always smiling. I can’t really ever say I remember him crabby or crying. When he was around 8 months old when I carried him in my arms he would always put his hand on my throat when I would talk. He did such cute things, so different from his brother and sister.
One time we left him with my sister and her family when he was around 15 months old.  It was over the Fourth of July and they took him to a fireworks show. My sister mentioned that he sat the whole time with his eyes shut and seemed scared. It seemed that whenever he was scared or not sure of what was happening he would just shut down and close his eyes. Months later we know why he behaved that way, but it seemed odd at the time.

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Months went by, he was still a good baby, but now I’m noticing that he seems to look me in the face and follow my expression but doesn’t really respond to anything I say to him. If I would say “Daddy’s home” and by this close to a year old he should understand some of what I’m saying and respond to me. Sometime he wouldn’t even look at me when I’d talk to him. Again I thought was he just good-natured or a bit odd? Actually I hate to say this but I did think at one point that maybe he just wasn’t very bright.

It was time for his 9 month check up. One thing I really liked about Dr David Johnson was that he never rushed thru the visit, he would sit and listen to any concerns I had. He didn’t disappoint this time either. The doctor asked how everything was going, I hesitated to say this, but I had to get my concern out

“I think maybe this baby is not very smart.”

Doctor J. sat down next to me and said   “Well, tell me about it, why do you say that?”

I went on to tell him how the baby ignored me when I was trying to get his attention or how he didn’t respond to me correctly.

The doctor thought for a few minutes, and said, “Maybe he doesn’t hear you.”

Doesn’t hear me I thought? What, everyone hears, especially babies. After some thought I said, “Okay, then maybe he needs tubes in his ears, I hear that fixes most babies ear problems?”

“Well…” The doctor looked through his files.  “He hasn’t had any ear infections. So that’s not the problem.”

My mind was running wild.  What!? Doesn’t hear me! What, everyone hears!  What’s happening here?  The doctor said to go home, talk to my husband Andy, think about it and come back in a few months for the next check up and we’ll see what we think then.

As I am driving home, I can’t stop thinking about it and it is starting to come together.  After talking it through with Mitch’s dad, it didn’t take long for us to realize that its possible that Mitch doesn’t hear. I am thinking of all the things that were different: the strange noises he made, so loud we covered our ears and he made weird little noises in his throat, and always focusing on our faces.

I put me hand on my own throat, as Mitch always did, then made a sound.  Oh man, it hit me, he was feeling my voice!  Now I get it, he would feel my voice and then look me in the face. He liked the vibration in my throat. He knew something was happening, he was a smart baby, so very smart, really!  At such a young age he was already adapting! I think he was figuring out his surroundings in his own way and learning to deal with them.
That night, Andy and I were going over all the details of this baby’s short life so far and all the ways and funny things he did differently than the other two kids. We knew that night, we might have a deaf baby. We bonded together and decided that we would find out everything we could so we would know how to help this truly delightful baby.
I can look back today and say we never had the dreaded “why us” thoughts. We had hard times and a new path to fight through but seldom a pity us syndrome. We thanked God for that first wonderful year of Mitch’s life without the wonder of something being wrong.
And this was the easy part….

Half Full or Half Empty? 

Of course there were times we wanted to have a pity-party about having a deaf child. Not often, but it did happen. The sadness of something that never will be, things that we love that he will never have the opportunity to hear, like music, birds chirping. Things, I thought at the time, he would never be able to do; drive a car, go into a store alone and function alone in this big world. The dangers are everywhere for a deaf child. I didn’t really know any deaf kids or families for that matter so this whole deal was new to us. We had no knowledge or experience; what we should or shouldn’t do. But then it’s that way with every parent, but at least your family can guide you along. This was a whole new world for us and we were going to just have to “wing it.”

Luckily we had a very happy child, he only knows his life as it is; not as it could have been.

When Mitch was around 6 years old. our family went camping at a Washington State Park. That summer they had a few ponies for the kids to ride. We rented a pony for the kids. Mitch’s brother  Tyler and sister Tandi didn’t want to ride one, but Mitch sure did. He climbed up and of course they only let you ride it in a circle with the owner holding tight. Mitch loved every minute of it!

Then this little girl and her mom came up to ride a pony. The girl was blind and as they put her in the saddle, her mom described the pony to her. She told her the pony was black and guided her hand around his mane and head as she petted him. The mom was really good with her. We stood back in awe, as the complete opposite was happening right before us from what were experiencing with Mitch.

On one pony there was a deaf child and the other pony was a blind child; who has more of disadvantage?

Mitch couldn’t hear the clip clop of the hooves, the sounds the pony makes; snorts, whining, the owner talking to the pony. But he could see the color, he knew what black was and what the horse looked like, how tall it was, the coarseness of its hair as it flew up in the wind, the fullness of its mane, its big beautiful eyes and eyelashes. I don’t remember her name, but this little girl could hear the sounds; the snorts, the whining, the clip clop, the owner as she guided the pony around the circle. But she has no idea that the color black is very dark, what the actual animal looks like, where she was riding or who is even guiding her. She must have so much trust in those around her.

We told Mitch the little girl couldn’t see, and her mom told her  daughter  there was a little boy on the other pony that couldn’t hear. She could hear us talk but not see us sign to Mitch. Her mom explained how we used our hands to talk to him. Mitch was fascinated by her and the fact she couldn’t see and wondered why. And she was just as fascinated about him. He just couldn’t imagine not seeing, and she couldn’t imagine not hearing. They both asked why the other couldn’t hear or see.

It was an experience I will never forget; who was better off, who has the advantage? I’m sure each thought they were the one better off. As most of us enjoy both  sight and sound, our glass is half full, is theirs also half  full or is it half empty. If you asked each one of them today they would probably say they are the lucky one. She was so happy to hear her mom’s voice and the noises around her and Mitch was really happy he could see the things around him.

One day, Mitch told his dad he wanted to play hockey. He was around 10 years old at the time.

“Hockey!” we said. “Why? Why would you want to do that?”

But Mitch was very insistent, so  Mitch’s dad and uncle George took him to a Canucks game in Canada one day. Mitch came home even more excited to play. We signed him up at the local arena, bought all his gear. Then we realized that he has never been on the ice, what if he hates it or can’t skate? Too late now, we are $500 deep into this thing. He is playing even if he hates it.

Well, on his first day on the ice, he came to me and said, “Mom, you can’t know the feeling, its like floating!” He was hooked. He took to skating like he’d done it for years. I think he played for 6 years then it became a whole different game, more serious.

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By this time, Mitch was more interested in water sports. I always say he went from solid to liquid; ice to water. One of his high school friends had a wakeboard boat  and Mitch would go every weekend. He found a new love in this sport. He did seem to excel at this sport too. He would go on to be very skilled on the water, but in Washington the summers are short and only a couple of months of warm enough weather.Then his friend and family moved back to Colorado.

When Mitch was around 20 he decided to move to Colorado to live with his friend and his family so he could get away from our small town and get back on the wakeboard. I didn’t think he would actually do it as he had never driven a car to the next town let alone across the country. And now he was talking about driving his car and pulling a U-Haul trailer with all his motorcycles in it across  5 states to Colorado. He must be nuts!

The night before he left, I was in absolute disbelief and utter stock. I cried like a baby, worried myself absolutely sick, literally shook with fear and really thought I would never see him again. Had we prepared him enough for the world?  The things he might come in contact with were too much for me to bear. What if he gets lost, or an accident? How can I stop him from going?

Mitch was not afraid. He was totally prepared, with his laptop in the car with his journey all mapped out and every stop tagged. He knew what he was doing and where he was going and why. I was forced to trust him at this point and let go. My husband Andy didn’t seem to have the reservations and fears that I did. He assured me that he would be fine.

Well morning came, I had cried all night.  Mitch loaded up his car and drove away with me filling a river with tears. He said to me, as he stood in the driveway, “Do you want me to stay here forever or go live my life?”

(I have to say this is the only time that I tried to use the “deaf card.”) “Mitch! Did you forget you’re deaf?”

This sent him in a laughing fit and he assured me that he would be fine, and that I can stay in constant contact with him along the way. Which I did.

(Mitch took up competition and became a wakeboard pro. Check out his skills:

A YouTube Star is Born

Today, as I look back on this, I can be so thankful that his glass was half full and that Mitch was willing to step outside the safe box, go explore the world. He was full of life and wanted to experience so many things and adventures away from the safety net of home. But at that time I gained a few gray hairs and shed a bucket of tears. My husband would remind me that’s how we raised him and not to try to hold him back now. But at that moment, I sure regretted the independence we instilled in him.

Mitch started creating YouTube videos and all of a sudden, he attracted a large audience.  Mitch’s success on YouTube and notoriety around the world really gave him even more richness in his life. For some reason it seems to be “cool” that he is deaf. Would he have had the appeal if he was hearing? He found an outlet in this digital world to really explore his talents in videography, bring it to the world and actually make money doing it. We bought him a video camera for high school graduation because he loved photography. We had no idea he had the “eye”. He told me he did when he was younger but I didn’t really believe him.  So many doors have opened for him because he has explored this avenue.

When I traveled to Brussels with Mitch in the summer of 2014, while he was there producing a commercial, just the sounds of the languages around me were fascinating. One day at lunchtime we decided to go to the “Grand Place”  at an outside cafe. I wanted to sit next to this park-like spot because this young lady was there playing a song beautifully by Andrea Bocelli on her flute. When Bocelli sings it just makes me stop everything and listen, it romantically represents Europe to me for some reason.   Mitch asked me why I wanted to sit there and I responded that the music was so beautiful that I wanted to listen to it. He looked at me and shook his head like he understood but really he has no idea how music can speak to your soul. When I returned to work after that trip I teared up as I was telling one of my co-workers how the music that day really touched me, and how much I love music, the sad fact that he just doesn’t get the same enjoyment from it and never will. But in respect to that; sign language is a feast for the eyes, it lays out the story and transcends you into the mood and right into the song. I have a hard time watching someone signing a song and not tearing up. The movements just become the words and they paint the story so beautifully. There are times when I can’t help but sign when listening to a song, to me a song is complete when the beauty of sign language is added. A beautiful replacement for sound.

Mitch is definitely living his life to the fullest. He is now married. He still has a long list of countries to visit and things to experience  but he has done more to date than I ever expected from him in his whole life.  My view of success for a deaf child in adulthood was a job, an apartment, a car and hopefully someone to love. To date he can check all those boxes…and more.

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How do we make sure our deaf kids view the glass as half-full? I don’t have any great answers but it seems to me that experiences are what fill up that glass. We were lucky that we had a child who wanted to explore and experience life to its fullest. I think this is to be encouraged–not just our deaf kids–but all kids.

 

Rhonda Bergsma

Follow her on her blog, Deaf-initely Mitch

 

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Pieces of the Puzzle: Jaden’s Story

October 7, 2016

jaden-2009

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

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

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

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

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

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

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

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

 

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

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

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

 

Wendy Roback

 

 

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Helen Mackay: Turning the Tables

August 1, 2016

Three Amigos - 1

I cried today.

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

Today. The. Tables. Turned.

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

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

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

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

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

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

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

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

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

Me and my Deaf daughter

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Helen Mackay

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Guided by China, A Journey Abroad and Within

June 11, 2015

candace and kids

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

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

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

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

Candace Lindow-Davies

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Where Do We Find Others Like Us on the Parenting Journey?

March 18, 2015

chevonne son

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

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

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

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

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

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

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

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

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

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

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

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

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

Chevone Petersen

South Africa

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