Posts Tagged ‘american sign language’

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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Karla Giese: My Life in Full Circle

March 22, 2017

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For me, being deaf 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 two 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 became 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 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.  In addition, I am also the Coordinator of CHOICES for Parents, a statewide parent support program for families of deaf and hard of hearing children.  Plus, I’m pursuing my doctorate degree in Special Education with a concentration in Deaf Education.  I am very interested in parent support, early intervention, language acquisition and literacy.

karla

I married a hearing man and together we have four beautiful children, all hearing.  However, two 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, both professionally and 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 and hard of hearing 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 different 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 Cued Speech community.  There is no one size fits all.  There never has been!  What works for your family is what works for you and your child.  Keep an open mind and be willing to explore Sign Language, ASL, spoken language, and Cued Speech options!

 

 

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ASL at the Super Bowl: A Mother’s Request

March 4, 2016

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

February 9, 2016

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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

November 3, 2015
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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