Helen Mackay: Turning the Tables

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I cried today.

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

Today. The. Tables. Turned.

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

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

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

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

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

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

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

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

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

Me and my Deaf daughter

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Helen Mackay

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Tabby Belhorn: There’s Room for Everyone On Our Path

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Thirteen years ago I was grieving the loss of having a child that could hear. My daughter had just been diagnosed with a permanent hearing loss. I was facing a lot of decisions to make about amplification, communication, doctors, and therapies. I left the audiologist’s office that day with a hundred emotions swirling inside.  I realized my daughter had most likely never heard me say “I love you” or calling to her from the another room in the house to say, “It’s okay, Momma’s right here” while she was crying. I also realized that day, that her life was exactly the same as the day before. She was happy, smiling, still had her favorite foods, toys, books, and TV show. Most importantly, she knew she was loved and she knew how to love as well.

My life changed that day, not hers.

Shortly after that day, my husband and I were contacted by  professionals to help us know what to do. We were provided guidance and information, but ultimately, we had to make choices for our daughter and our family. We were not aware of the conflict and controversies surrounding communication and amplification options for deaf or hard-of-hearing children. We simply made decisions that felt right to us for our family and our daughter.

We continued to make decisions that were right for our child and our family. We were lucky though, we knew we had options and choices. Part of this was because of our location, part because we worked with experienced and knowledgeable professionals, and part because we had support–family and friends were beside us to support our decisions.

A couple of years later I found myself working as a parent mentor.  Somehow I had become the parent that others went to for advice and guidance. During those two years, the job brought me into a world of differences and really taught me how to support parents who have a different perspective and those who made different choices than I did. That shift in focus was hard for me. Some days I didn’t understand why parents made the choices they did for their child and family. When I took the time to listen, and I mean really listen and hear what parents were telling me, I realized we were not all that different. We had the same goals for child and family, the only difference was the path we chose to get there.

One of my job duties was to establish a support program for parents and families of deaf children. My job was to provide support without bias for families of all deaf children regardless of the choices they made. This is how I found Hands & Voices.

Hands & Voices was founded by parents who were tired of the communication wars. They quite simply wanted to support each other, because raising a deaf or hard of hearing child alone is hard. The parents involved wanted unbiased and unbridled emotional support. A group of parents guiding parents.

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The first Hands & Voices conference I attended felt like home. In my life as “Reagan’s Mom,” I often found myself explaining the choices we made for our family and why, but when I attended the Hands & Voices conference, there was no need to explain myself. No one there judged us, disagreed with our choices, or disrespected our choices. Everyone had open arms and welcomed me and my family, because now we were all family.

Hands & Voices has shown me that it is okay to have my own opinion and personal belief system, but also how to set those aside and walk beside any parent of a child who is deaf or hard of hearing. Hands & Voices has a wonderful way of respectfully accepting individual differences, while focusing on our common goals to achieve success-individually and collectively. We do not let our differences separate us, but instead our differences bring us together.

Thirteen years on my path raising a deaf child and 11 years into my role supporting parents has made me realize two things; there is no fork in the road and we are all sharing the same path. We all want happy, well-adjusted kids. The path we walk is shared with parents, families, children, friends, Deaf adults, doctors, audiologists, speech-language pathologists, teachers, interpreters, and more. I urge you to take the time to talk to and listen to the people sharing your path and find the shared respect and support we all need.

There is room for everyone on our path.

 

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ASL at the Super Bowl: A Mother’s Request

Attachment-1 (1)Dear CBS:

I write to you as the hearing mother to my 4-year-old daughter Sarah who is Deaf. On Sunday evening my daughter, her father and grandparents were getting ready to watch the National Anthem prior to the Super Bowl. Why was she watching? Because last Tuesday the website for the National Association for the Deaf explained that Marlee Matlin would be performing the National Anthem in American Sign Language along with Lady Gaga. Here is the link to that announcement – https://nad.org/news/2016/2/nad-nfl-pepsico-and-cbs-announce-marlee-matlin-perform-asl-super-bowl-50. I do not have the statistics regarding how many people who are Deaf and hard-of-hearing were watching the Super Bowl on Sunday night. However, according to a Gallaudet University website, “Across all age groups approximately 600,000 people in the United States (0.22% of the population, or 2.2 per 1,000) are “deaf.”

We can assume with good reason that a great many people who are Deaf and use American Sign Language in order to fully access communication were watching the game and anticipated seeing Marlee Matlin’s performance. I watched it, and by my calculations she was on the screen for not longer than 2 seconds. This is unacceptable.

CBS has a civic responsibility to provide equal access to communication for all people. I know that the interpretation was on the Jumbotron during the entire performance but what about broadcast television? Surely, additional cameras could have been utilized to guarantee equal access to communication.

I have some confusion regarding why this situation has occurred in the first place. Yes, Lady Gaga is an international celebrity. People want to see her sing. I myself enjoy her performances. However, Marlee Matlin is also a very well-known celebrity and an Academy Award winning actor. She currently stars in the acclaimed television program ‘Switched at Birth’ and she recently starred in ‘Spring Awakenings’ on Broadway. Deaf and hearing people alike should have been given the opportunity to see her ASL interpretation during the Super Bowl.

I think our largely hearing society forgets or just does not realize that for smart, capable, educated people (like all of the Deaf people who I have met, been educated by and befriended since my daughter was born in March of 2011) American Sign Language is not just something that would be nice to see if it’s possible. It’s like spoken English for people who are hearing. It is purely and simply necessary in order for a full access to communication to take place.

CBS: you had an immense opportunity during the Super Bowl–an event with far reaching magnitude–to show my daughter and so many other children and adults who are Deaf that society recognizes them. All the cameras needed to do was shine their lights on both the singer who was performing in English and on the performer who was using ASL in a poetic and equally beautiful performance.

I hope that CBS can do better in the future. I hope that my daughter can begin to see more of herself in society. I believe that change and growth is possible and I hope that in the future we can bring that to fruition. I will be submitting this piece to other organizations in hopes of continuing a conversation that greatly needs a voice.

Thank you.

 

Sharon Lynn Clark

Mother, Teacher, Writer

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Why Marlee Matlin Should Have Shared the Stage with Lady Gaga

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My husband and I were a little late leaving the house to head to a friend’s house to watch the Super Bowl game. I was a little heavy on the pedal as I didn’t want to miss Marlee Matlin signing the National Anthem at the start of the game. I just prayed no cops would pull me over.

We arrived just as Lady Gaga took to the stage and the first notes of the song began. My husband and I joined our friends as we gathered around the TV and waited in anticipation to see Marlee sign.  The camera panned out to show Lady Gaga standing next to the piano, alone.

“Wait a minute, where’s Marlee?” I asked.

“Hopefully they’ll show her.”

So we sat and we watched.

“Ah, there she is!”

The camera zoomed in on Marlee.

For four seconds.

And we never saw her again.

Well, no, that’s not true. If you squinted and looked a couple feet away from the stage during an overhead pan out, you could see Marlee’s arms moving.

As Lady Gaga belted out the last line, the rest of us looked at each other, stunned.

“Marlee should have been on that stage,” someone said.

Yes, she should have.

This is the third time Marlee has signed the National Anthem at a Super Bowl. In 1993, she shared the stage with Garth Brooks. She shared the stage because Garth specifically wanted her up there with him.  Garth’s decision sent a powerful message to millions–he wanted his music visually accessible and he wanted Marlee signing next to him.

Garth Brooks and Marlee Matlin: National Anthem

 

As it should be.

Yes, I know star performers would rather have the spotlight, but in this day and age, could we possibly shift the paradigm a bit–one that is more inclusive?

We had missed the earlier announcement from NAD that CBS Sports would also live-stream Marlee Matlin’s entire performance online as an alternative viewing source. But even if we had streamed it alongside the TV, the experience would not be the same as watching Marlee on the same stage on TV. Heck, most of us would have been happy to just have Marlee on a split-screen at the very least. Thankfully, Marlee’s performance was shown on the Jumbotron: Marlee Matlin Signs the National Anthem.

I must say, long after the Super Bowl ended, I couldn’t shake the disappointment I felt. I thought about my three deaf and hard of hearing kids–and all the deaf and hard of hearing children of families all over the world–how many more years will it take before we truly equalize the playing field?

Marlee should have been on that stage.

 

Karen Putz

Co-Coordinator of Deaf and Hard of Hearing Infusion

Mom to Dave, Ren, and Steven

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Different Perspectives on Raising a Deaf Child

Bill Kolb, Irene Kolb, Leigh Kolb, Rachel Kolb

Bill Kolb, Irene Kolb, Leigh Kolb, Rachel Kolb

Rachel Kolb is a Stanford graduate and Rhodes scholar who is currently pursuing a PhD in English literature at Emory University in Atlanta, GA. Rachel was born profoundly deaf to hearing parents and grew up bilingual, using both sign language and spoken English. In this guest blog post, Rachel and her parents, Irene and Bill Kolb, give their respective perspectives on how their family navigated the complexities of communication, education, and personal development, especially during the early years of Rachel’s life.

 

Q: Briefly describe your family’s journey with deafness and with communication. How did you, as parents or as a family, make the decisions you did?

 

Irene: The day after we received Rachel’s diagnosis of having a bilateral sensorineural hearing loss, we went to the main library and checked out every book available on sign language and deafness. I learned that the biggest window of opportunity for language acquisition is from birth to three years. We started using signs that same day and within a few months, Rachel was communicating to us with baby signs.

This was the year that cochlear implants were approved for children by the FDA and we were told she was a candidate. We did not know if Rachel would grow up to self-identify as Deaf. We chose not to pursue cochlear implant surgery for her because we were sensitive to the message it may send, that she was not okay being deaf. The most profound book I read was Deaf Like Me. With that book, we came to the early realization that Rachel may never learn to hear or speak, even with a cochlear implant, but we could learn to sign. And who wouldn’t want to have open communication with their child? The journey continued to unfold, but we didn’t really know where it would lead or how we would get there.

We as parents continually learned new things and let Rachel try new things. We enabled Rachel’s interests and passions, and we made educational decisions on Rachel’s behalf. That’s what parents do: set the path. We chose to send her to a preschool for the deaf and then mainstream her with an interpreter in elementary school. She attended a private school, with an interpreter and as the only deaf student, from sixth through twelfth grade. We never considered sending her to a residential deaf school because we felt children need to live with their families. Rachel being deaf is not more heavily weighted than her identity of being part of our family. Going to college was simply an accepted family conviction, not an option or a mere possibility. By that time, it was Rachel’s choice on where to apply for college and what she wanted to study. We had set the path; the rest was all up to her.

 

Bill: We have two lovely girls that we are truly blessed with. I believe Irene is the one who set the path forward for Rachel’s journey. Irene is the one who would read everything available on a topic and then ask me for my input. After that, we would march forward with a new plan. She is a remarkable individual who helped shape not only Rachel’s future but helped me make informed decisions.  

Right after Rachel was diagnosed, we were placed into a New Mexico state-sponsored program called Step-Hi. People from this program would visit our home regularly and give us important information and services. The initial visits were very basic, and taught us things such as how to clean ear molds, change hearing aid batteries, and so forth. Then during one visit the individual brought a record that gave me, as a hearing person, an insight to what different levels of hearing loss sounded like. The record repeated a story over and over again, and each time the narrator would drop certain frequencies until the recording lost all frequencies – that is, let me hear what it sounded like to be profoundly deaf. This recording really hit home with me. Going forward, I decided I would learn as much as I could about how to communicate with my precious daughter.

We enrolled in sign language classes that were offered over lunch at our workplace. We went to the local university and enrolled in continued education sign language classes. We obtained as many sign language books and videos as we could and practiced with each other and with Rachel. We also decided we would not only communicate by sign but also with voice. If you were part of the family, signing was not an option. It was a way of life. Written language was also a way of life. We used 3”x5” cards to label most things in the house with their names. We also sat at night and signed (read) books to Rachel. Before long she was reading better and faster than I could, and she soon told me (in not so many words), “Get lost, you’re too slow.”

I believe that if a person is going to be born deaf, this time is much better than any other time in history due to the evolution of assistive devices such as hearing aids, text messages, closed captioning, Skype, and so forth. When Rachel was diagnosed, hearing aids were worn on the chest and the batteries were the size of a car battery – well, not really, but they were enormous. Technology was rapidly changing, which made it hard and expensive to keep up with. But we made an early decision as parents that we would try to keep up with the latest in technologies for the deaf and hard-of-hearing. We investigated and pursued options for hearing aids and other technologies to best meet Rachel’s needs, and I believe that also made a difference.

 

Rachel: As I’ve gotten older, I have appreciated more and more the effort my parents put into getting the right information and into making decisions on my behalf. Most important, for me, is the decision they made to learn sign language and to enable my bilingual communication access. I have met too many deaf individuals who feel like they cannot communicate with their hearing family members because their family does not sign. Having a family that signed and that worked to provide language access for me gave me a sense of confidence in myself, even when things got challenging. With my family, I was never just deaf; I was a fully contributing member of the family, and my parents’ high expectations enabled me to learn and to succeed in the ways I wanted.

I also appreciate that my parents recognized that it was important for me to have access to the deaf community, even if I was mainstreamed. I went to a deaf camp in Aspen, Colorado every summer for many years (and went for several winters, too). Although most of my friends are (and have always been) hearing, I’ve been able to find and keep in touch with deaf friends from many different places. Trying to be involved in both deaf and hearing worlds is not always easy, but I think my parents recognized this early on and tried to give me as many tools and as much access as they could to both.

 

Q: What was the most important thing you learned along the way?

 

Irene: I learned and was empowered by the fact that no one, not even the professionals, knows what is best for a particular family or child. Listening to the advice and reading up on how to raise a deaf child was just part of the critical thinking that led us to decisions, and we never felt we had to go along with what one side or the other said. We could make our own decisions, based on our family situation and our values. We certainly chose a different approach than many families, and that is okay. One size does not fit all.

 

Bill: I learned that family is the most important thing. Through thick and thin, family will always be there for each other. If you put a little effort into something, the rewards will surround you tenfold. I also learned to let my children explore the world and follow their heart. Rachel has mastered her passions through following her desires.

 

Rachel: I learned how to enable and advocate for myself, definitely not as something that happened overnight but as a result of my parents’ decisions and the expectations they had for me. They made it clear they would always be there for me, but also made it clear that there were some things I could only do or decide for myself. Learning how to take control over my own decisions and become my own best advocate has been a process that has taken years, but thanks to my family’s involvement I feel like I’ve gotten there.

 

Q: Were there any parts of the journey where you disagreed about one thing or another? What parts were the most challenging?

 

Irene: I can’t think of a time when we disagreed. I do think that at times Rachel wondered why we chose a mainstream situation instead of putting her into a school with other deaf students. A very challenging aspect for me was the grief I felt. It’s not that I didn’t love and appreciate Rachel. Having a deaf child was not what I had expected. A new, difficult situation would arise for Rachel, and I would grieve. Bill helped me realize that not every difficult situation was related to her deafness. Over time grief cropped up less and less, but it was a very tough emotion to process, especially at the beginning. Bill and I usually took turns being in a grief funk and luckily it was not often that we were in a funk at the same time. The emotional toll of having a deaf or other special needs child is something I don’t think people talk about enough, or one that the professionals appreciate from a personal standpoint.

 

Bill: I also can’t think of a situation where we disagreed. I think the most challenging aspect for me was being concerned about Rachel’s emotional wellbeing. When she was a young child we would attend social gatherings where all the other kids would be playing and talking. Rachel would end up in an isolated part of the house reading a book. This just wrenched my heart and there was nothing we could do about the situation. Nothing could be said or done that would make others accept and include her in their games and time together. When faced with groups of people, we would try to sign or at a minimum explain what was happening, but often we failed to keep Rachel current with the situation. I am not sure what I would change or how I could make it better for her if I had to do it again. Sometimes we would visit deaf individuals to give her the opportunities to be with other deaf people, but that then put me in a situation where I often could not understand the conversations.

 

Rachel: I’ve come across stories of deaf and hard-of-hearing people who resent the decisions (especially communication-related decisions) their parents made on their behalf. I don’t feel like this has happened to me, maybe because I’ve never felt like my parents dropped me in completely over my head, or did not understand the repercussions of their decisions, or did not empathize with what I was going through. Some things along the way, such as being mainstreamed or going to speech therapy, were certainly frustrating and difficult. I’ll be honest, I did not always enjoy being surrounded by hearing peers, many of whom did not make the same effort to communicate with me as my family did. But my parents gave me their full support, and I also was conscious that their choices gave me benefits I would not have gotten otherwise, such as access to an incredible education. Growing up, my family was my refuge: they were the ones who enabled me, who were always there, and who let me be fully myself. I won’t deny that it was very difficult at times to grow up in a hearing world, but with where I am right now I also can’t say I would have changed very many of those tangible decisions, based on the options we had.

 

Q: Who was your most valuable mentor?

 

Irene: Rachel’s very first speech language pathologist was very instrumental in helping us through those early days. Beginning at six months old, Rachel started going to speech therapy twice a week for years, and continued going once a week in middle school through high school. I would often talk to the SLP after the sessions. That was therapeutic for me and helped shape my ideas of how to educate a deaf child to function in a hearing world, even though we did not choose the cochlear implant route, which must have seemed odd, especially since this SLP was the director of the cochlear implant program. She supported our choices. And she helped me to formulate the ethos of never putting limits on Rachel just because of her deafness.

 

Bill: I had several mentors at work and church who guided me with family concerns. There is one individual who was, and still is, inspiring when it came to guidance about deaf life. My friend Roger is a man with a progressive hearing loss who became immersed in the deaf community later in his life, and who offered sign language classes to many people. We often met for coffee on Saturday morning to catch up on life and to support each other. He taught me so much about deafness, deaf culture, and service to others, and not only offered advice but would also lend an ear when needed.

 

Rachel: I can’t pinpoint one mentor, but I do remember a number of counselors and staff members I met at deaf camp when I was young who gave me a positive image of how to be deaf in the world. I think it’s very important for young deaf and hard-of-hearing children to have access to older deaf role models. I’m still meeting deaf role models in a variety of places as I move into adulthood, and their influence on me is huge. (I say this, even if I would add that I have had many positive hearing role models, too.)

 

Q: What piece of advice would you most like to give to hearing families with deaf or hard-of-hearing children?

 

Irene: It’s important to be mindful and intentional about communication with a deaf or hard-of-hearing child. They receive limited incidental learning by overhearing what’s going on around them. So do take time to fill them in, even when it means explaining things that seem like they should be obvious. And be as inclusive as possible so the incidental becomes the intentional.

 

Bill: Treat them as you would any other family member and include them in everything and anything. Learn as many communication skills as you can, and apply them as early as possible. The first few years of your child’s life are the ones in which they learn the most. And last but most important: love them daily, and it will be rewarded in many ways.
Rachel: Communication is key, and so is being inclusive and intentional. Find out all the information you can, not only from professionals but also from people who have lived it. Engage with a variety of communities and give your child options, based on what works best for that child and for the family. Discover your child’s passions, the things that light his/her imagination on fire, and enable them.

Rachel speaking at a TEDx event:

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Rocky Mountain Deaf Theatre’s “Compelling” production of SILENT SALZBURG

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Rocky Mountain Deaf Theatre’s “Compelling” production of SILENT SALZBURG

by Richard Medugno
 
My full-length play Silent Salzburg tells the story of an Austrian Christian family that goes into hiding in 1940 to protect their deaf teenage son from sterilization or worse by the Nazis. It is not a true story, but it is based upon actual historical events.
 
I was inspired to write this piece after wondering about the benefits of ASL in an “Anne Frank” situation. After a little research about how the Nazis treated Deaf people during World Word II, the idea for the play really came together and the drama almost wrote itself.
 
The first production of Silent Salzburg was staged at the California School for the Deaf, Little Theatre in Fremont in September, 2006. It directed by Deaf actress Megg Rose. I’m proud to say it was very well received and helped raised over $5000 for DCARA.
That first production holds a close place in my heart also because my daughter Miranda Medugno played the role of Marlena. This is note-worthy because it was Miranda first “real” Theatre experience and set her off on a road that led to her winning the Helen Hayes Award in Washington, D.C. this past spring for her portrayal of a Helen Keller in a new musical.
 
I am, of course, so very proud of my daughter and so thankful that she came into my life. It led to my exposure to the Deaf community and provided guidance into a writing career that now includes the publishing of my memoir Deaf Daughter, Hearing Father and the creation of a number of theatrical pieces with Deaf and hearing characters.
 
Needless to say, I was overjoyed when I learned that Nicki Runge, Rocky Mountain Deaf Theatre’s Artistic Director, wanted to stage Silent Salzburg. She deserves a ton of credit for taking on a difficult and challenging piece with heavy, dramatic material.
 
I was delighted to learn the production received a glowing review by Theatre Colorado.blogspot.com from a reviewer who saw the play in Colorado Springs. There are only a few more performances of this production as it moves to Fort Collins’ Bas Bleu Theatre this weekend and in Denver’s Bug Theatre the following weekend. I hope you will make every effort to see the show. I will be attending the performances in Fort Collins and look forward to meeting the cast as well as audience members.
 
I heartily applauded the efforts of all the Theatre artists who made this Colorado production of Silent Salzburg happen.
 
Richard Medugno
San Jose, CA
October 14, 2015
 
Twitter: @deafkidsparent
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The Hands & Voices Network:  It takes a Van to get to Destiny

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Having just flown back from our Annual H&V Leadership Conference, the buzz is in the air….on Facebook, email exchanges, twitter, Instagram, and texts….

“It was SO good to connect.”

“Thank you for helping me with what I needed for a strong healthy chapter”

“Thank you for supporting me in a situation I have with my own child”

It’s just so wonderful to see the connecting, the exchanging of support, the “Wisdom Among Us”.  We get such little face time together, that when we are together we talk a lot about feeling like we are back together as a family.  We share our unique and yet common experiences of raising a child who is Deaf/Hard of Hearing, and we CONNECT!  I personally walk away from the conference every year filled up and ready to make sure parent-to-parent support is available to all, and to tackle the challenges of improving the lives of our children in the health, education, and other systems that serve us.

The ‘magic’ or our family in some ways has elements we can define and prepare for, but also just happens when we are together.  The logistics of bringing a conference together, however, is not magic – it’s hard work, TO DO lists, endless planning of details, and dealing with onsite happenings you just can’t predict.  We learn from these experiences and also grow from them.  I want to  give a shout out to Molly Martzke, and  Jeannene Evenstad, along with our full H&V staff that made the logistics parts of this conference come together.

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But it’s not just AT the conference where we get this vibe.  In fact, I just wanted to share a few moments that happened AFTER the conference, and I mean IMMEDIATELY after the conference when everyone was tired, looking towards home, and back to the ‘inboxes’ we so willingly abandoned for a few short days.

At our conference this year, we had the privilege of welcoming some international guests to our ‘family’ for the conference from Russia, China, and Kenya.  As we closed out our time, people from among us stepped up to ensure that our guests got where they needed to go, created even more opportunity to enjoy their visit here in the U.S. and to ensure that the network of not just a few, but of many, continued the networking.

Stephanie, Jackie, Lisa

So… thank you Stephanie Olson and Lisa Crawford for opening your home after the conference, spending more time with our Kenya partner, Jackie.  Jacki Oduor is giving to us the gift of herself, energy, and commitment to families in Kenya.  We are so grateful to be connected with her.

Photo:  Stephanie, Jackie, Lisa

To Candace, who not only helped arrange a visit from two special guest professionals from China, but went on to Colorado and spent the next day showing elements of the U.S.  educational system in Colorado, and other activities to help broaden the guests perspectives.  To our professional partner, Christine Yoshinaga Itano who helped arrange this as well.

chinese visitors

The China group visiting a Colorado preschool after flying from the conference in Texas to Colorado.

                                                                     

And to Molly, who is the Leader for our Russian/U.S. Partnership Project, driving our guests in a rather large, 15 passenger van that tested the limits at times of wearing the hat of ‘driver’  amongst her other duties.

huge van

You try parking this huge van perfectly every time.

 

 

 

I wanted to mention these rather ‘logistical’ elements of the ‘network’ that helps us, in the midst of limitations of our capacity, the amazing number of people who step up and abandon their title for just getting done what needs to get done.

Networking together.

Networking together.

I am so proud to be a part of this organization.  Not just for the stars on our map on our website that shows our growth, but that in any given moment, the number of people that are willing to step up and ‘just get it done’ is astounding to me. Thank you all, for making this 12th Annual Conference the best ever, and for keeping the network going even when we are not face to face.

Finally, as the Chinese visitors were boarding a plane after the conference to the next step of their journey, they turned to Candace and said, about their being here to experience Hands & Voices, “This is Destiny”.

Yes, it is.

 

Janet DesGeorges, Executive Director, Hands & Voices Headquarters

View photos from the conference here: www.instagram.com/handsandvoices

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Letting Go, The Hardest Part of Parenting

karen and ren

From the moment our kids are born, our parenting journey is one of letting go.

Do you remember the first time you let go of your wobbly toddler for that first step? The first time you let someone babysit your child? The first time you let your teenager drive alone?

Letting go is hard. Letting go means we’re no longer in control of the parenting stuff.

When my daughter called me earlier in the spring, she informed me she was no longer going to pursue the college path. Her heart was set on acting and she wanted to find a way to pursue her passion.

“Ok, so what’s your plan?” I asked.

She didn’t really have one. She was going to come home after the semester ended and figure it out. She might move to New York City and live with her cousin. She might try and get a job in Los Angeles and live with a friend. She just knew she wasn’t going to go back to college. Acting school, maybe.

As a parent, I wrestled with a whole range of emotions.  The parent side of me screamed, “oh-my-gosh-she’s-gonna-have-a-tough-life-without-a-degree!” The Passion Coach side of me calmly whispered, “let her have her journey, she’ll figure it out.”

My conversations with my daughter showcased the whole range of those emotions and thoughts. During one conversation, I was calm and rational, even positive. During other conversations, I brought out the “play it safe” cards and the “get your degree first–after that you can do whatever you want” rationality. I think I said some not-so-nice things.

“How can you tell others to follow their passions if you won’t let your own daughter follow her heart?” she asked me.

Yes, she called me on it.

And she was right. I had to let go. This was her journey. Even if I pulled the parenting card and insisted she stay in college, I knew it would create the biggest thorn between us. She had been miserable with school since fourth grade and we had plenty of battles over it.

As the end of summer rolled around, the plan was still unclear. My daughter even had moments of self-doubt, of wondering what direction to go in next.

Then out of the blue, she found an audition for Spring Awakening on Broadway. Without a single bit of hesitation, she booked a flight.

The moment she FaceTimed me to tell me the news, a swing role on Broadway, I suddenly understood why this process of letting go is so important: it’s the only way to grow.

spring awakening with ren

I’m all too aware it could have gone the other way and the journey would have taken another twist and turn. That’s how it works, that’s how life unfolds.

 

 

Karen Putz is a mom to three deaf and hard of hearing kids. She resides in the Chicago area and is the Co-coordinator of Deaf and Hard of Hearing Infusion at Hands & Voices.

 

More about Spring Awakening on Broadway:

Cast of Spring Awakening

Deaf West Makes Spring Awakening All Its Own

Broadway First Look: Spring Awakening

 

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Teresa Kazemir: The Job of Parenting is Never Quite Finished

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Our oldest son is almost 20 – gone are the years of feeding his brain with language, modeling and teaching values and morals,  nurturing his self-esteem, providing opportunities for him to discover and develop his identity…we’re pretty much done.  And yet this job of parenting is never quite finished. I still find myself asking gently probing questions such as:

“So, did you tell your coworkers/roommates/professors about your hearing?”

“Should you perhaps call the audiologist and make an appointment?”

“Were you worried about losing your hearing aids (Bone Anchored Hearing Aids which are easily knocked off) when you went climbing up over huge piles of fallen trees across a river?”

It is a wonderful feeling, however, to hear our son sharing his story with others, and to see just how much he has embraced all that we have tried to teach him over the years.  I love it when he tells families about his hearing loss “I find that if I’m OK with it, other people are OK with it too.”  He is so comfortable in his own skin, and doesn’t hesitate to show families his ears and hearing aids (he has microtia and atresia, so his ears are a little smaller and differently shaped than most, and he wears bilateral Baha hearing aids).

It does feel a bit strange, though, to be stepping back. I am still working out this new role of parent to an adult. I’m learning it’s fine to ask how a course is going, but I really shouldn’t be asking or reminding about homework and deadlines.  I can ask about the accessibility of a lecture theatre or the use of assistive listening devices, but our son is now the judge of what he needs, and it’s no longer my role to advocate for him. The lines of communication are still open, but I am learning to follow his lead.

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So I am gradually letting go of the role I have embraced for 20 years, as the parent of a child who is hard of hearing.  In some ways it’s nice to let that piece go. On the other hand, I have spent years learning about hearing loss, how to parent a hard of hearing child, how to advocate…it would be a shame to let all that hard-earned knowledge and experience go to waste.  So I’m  very thankful that Hands & Voices allows me the opportunity to share what I have learned, and support other families along their journey.  I love this organization!

Teresa Kazemir

BC Hands & Voices

More posts from Teresa: BC Hands & Voices Teresa Kazemir

 

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Coming Full Circle

For me, deafness is a way of life. I was born hearing, and began losing my hearing as an infant. My parents couldn’t get a proper diagnosis until I was almost 2 and then I was fitted with hearing aids. My parents chose to raise me with an emphasis on spoken language, using speech therapy, hearing aids, and FM systems while being educated in the mainstream setting.

 

My hearing loss got progressively worse and I became profoundly deaf by the time I was nine years old. At that point, relying only on auditory information started becoming more and more difficult. By fifth grade, I began learning sign language and using an interpreter, which continued through high school and college. I went to college and earned my BA in Deaf Education, Elementary Education, and Special Education.

 

I moved to the Chicago suburbs and began began my teaching career working with deaf students who also had emotional & behavioral disorders and I learned a LOT about behavior management. At the same time, I began working in Early Intervention and became credentialed as a Developmental Therapist-Hearing (DTH). Over the years, I went back to school to get my Masters in Early Childhood Special Education and have taught in a variety of schools including residential, self contained, resource room, and itinerant services. I had the opportunity to start moving into more administrative roles in the schools as a Curriculum Coordinator, Assistant to the Principal, and am now Director of Student Support Services in a Montessori School that has an embedded Cued Speech program.

 

I married a hearing man and together we have 4 beautiful children, all hearing. However, 2 of them have been involved in the early intervention system and have had IEPs in the mainstream setting. I feel like I’ve come full circle in my life in that I’ve experienced all educational settings and communication modalities, whether professionally or personally. I also feel like I’ve been on all sides of the table at the IEP, as a student, parent, teacher, advocate, and administrator.

My personal and professional experiences lead me to the point that I most often emphasize when I work with families of deaf children….when your needs change, your choices can change too! Too often, people get stuck on one way to do things. If something isn’t working, why not explore something new? If something is working, why not add something new? Because I can talk, sign, and cue, I have met so many people and have had my life enriched in so many ways. I am able to be a part of the hearing world, deaf community and the Cued Speech community. There is no one size fits all. There never has been! What works for the family is what works for you. Keep an open mind and be willing to explore sign language, ASL, oral, and Cued Speech options!

Karla Giese

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