Posts Tagged ‘Hard of Hearing’
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.
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!
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.
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.
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.
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 enoughhis 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.
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.
Follow her on her blog, Deaf-initely Mitch
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.
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.
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.
My name is David Cluff and I am deaf, and this is my story.
In March of 1993 I was born with a virus called Cytomegalovirus, which is known as CMV. This virus has many side effects and doctors thought I might not survive. I was born pre-mature and despite what doctors initially thought, I was born healthy. I was welcomed by loving parents and would eventually be the oldest of four children.
My childhood was not like most kids growing up. At age three I was diagnosed with hearing loss and fitted with my first set of hearing aids. At age six, I woke up one morning and any hearing I had the night before was completely gone. Just like that, something that I cherished so much was gone. My world had changed in a matter of moments. I felt broken, unsure, and I missed the way things used to be.
Shortly after losing all my hearing, I was given the option to receive a Cochlear Implant. After lots of prayers and help from family, friends and people I hardly knew, I got my first Cochlear Implant in October of 1999. Shortly after recovery, I got the Cochlear Implant turned on–and very quickly, my ability to hear my parents, my own footsteps and the water running was restored.
Did that magically make everything perfect again?
Rather, it was the beginning of a journey of faith as I re-learned to hear the world around me. It was like a matching game of “what sound goes with what.” As the years went by and after a major move to the great city of St. Louis, Missouri, I was given another opportunity to receive a second Cochlear Implant for my left ear. It was my dream to hear with two ears again. I was once again faced with the challenge of re-learning to hear. Hearing with two ears is not the same as hearing with one.
Back in 2007, I was working closely with my surgeon, Dr. Hullar, on a five-year research study. He became a good friend and a great mentor to me. During one of the meetings in his lab he overheard my parents and I brainstorming on what project I should do for my Eagle Scout rank in Boy Scouts (BSA). Dr. Hullar knew my background in computers and said, “Why not build a website for deaf teens like yourself?” It was like a huge light bulb went off and I found something to be passionate about. Before I could actually start the project I had to get it approved by the BSA board. I was nervous as I really wanted to do this project no matter what and being able to do it as my Eagle Scout Project would make it more meaningful. The board members approved the project.
Today, I am happily married to my best friend and a father to an energetic 8-month-old boy. Even as an adult, I am still learning to hear the world around me and cherish every moment I can. I have come to realize that life isn’t supposed to be perfect; rather, it is like a puzzle. When you get a puzzle in a box or bag you now have the choice to either put the puzzle together or let it sit on the shelf. My challenges came like a bag of puzzle pieces. So many pieces that it often felt like it would take years to put each one together to match the master photo. Yet, I had a choice. Am I going to let it sit on the shelf and let my challenges hold me back or am I going to do my best to put the puzzle together? Once completed you see the whole picture; but notice how there are lines going all over the place from each puzzle piece. It is not seamless at all, but it is also not broken. That is like life. We are given pieces of a puzzle and with time, we come to see the masterpiece.
My master puzzle is still in the works and I am seeing parts of it coming together–and that is when I know that everything is all right and that everything will work out.
Read more about David’s story, visit: www.davidbcluff.com
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).
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.
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!
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.
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.
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.
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.
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.
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
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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.
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:
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!
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 I who was “Guided By China.”
A blog of the trip can be found here: Guided By China
I found myself missing the child I once knew. The one I always referred to as “happy-go-lucky”, the one who loved my cuddles and giggled through my delightful butterfly kisses!
You see my son was diagnosed with delayed speech and language mid 2011 and then mild hearing loss at the end of 2011. The 6 months that followed his diagnoses were a roller coaster of fluctuating loss, pushing for intervention and finding support through online communities!
All this while my son spent the better part of 2012 not hearing his teacher. And me, yearning to connect with other parents.
All I found though were resources referring to profound hearing loss…believing that we did not fit the “category” of needing support since we were fluctuating between mild and moderate. Even our government hospital agreed that my son was not a “candidate” for intervention services.
It angered me that my son’s challenges and diagnoses could just be dismissed by the flick of the wrist. File closed. Move on. Come back in a year! Our system disappointed me, it failed us, and to this day, still continues to fail many families.
I made a decision to take ownership of my son’s challenges. My son’s worth was NOT going to be defined by his level of hearing loss!
I enrolled him at a school for the deaf, where he received the necessary intervention in 2013. He thrived! His language became more colorful and bright! Leaving home at 5:30am and arriving back after 6pm; a four hour journey everyday, was well worth the sacrifice.
Today, my son has a dedicated “Team Kai”, he attends mainstream school and still continues to receive intervention services privately. He wears bilateral hearing aids and uses his FM system in the classroom. His teachers are supportive and accommodating. He is the only deaf/hard of hearing child in a school of +/- 900 students!
So you may wonder, why do I miss the child I once knew, the “happy go lucky” boy? Sensory Processing Disorder (SPD)!
His hearing loss is no longer our biggest challenge. His SPD and behavioral responses is what’s got me “missing” the child I once knew…he has become my four seasons in a day…I never know what to expect when I get home.
Watching my child go from a loving happy go lucky boy to an angry, aggressive and intolerant child during a sensory meltdown is not easy; it is extremely unsettling. I am however encouraged when his teacher tells me how he advocates for himself at the age of 7. He asks to go for a walk where he can have some time to self regulate when the classroom environment becomes too noisy, or the tapping of a pencil on desk is making him feel “all funny inside” and sitting is becoming unbearable. He reminds his teacher to use the FM system when she forgets, and he works exceptionally hard!
Together we’ve been working on how to best “manage” his reactions to overwhelming sensory input. It’s our mom-son adventure!
His resilience has inspired me to reach out to other families. In 2014 I founded Decibels of Love, a parent-to-parent support group for families raising deaf/hard of hearing children. Together we grow. Together we empower. I believe that the smallest act of kindness CAN change someone’s world forever. All it takes is one family to advocate, educate and empower an entire community!
Early on in my own life journey I promised myself that I would always try to live my best life even in my weakest moments. It is this philosophy that’s allowed me to maintain my sanity, to draw myself closer to who I am and strive to be the best parent that I can be…
One would think that growing up with a hard of hearing father would have prepared me for this journey, but this could not be further from the truth. Through my son I realized that I also had a level of ignorance. It is only through my son’s diagnoses that I could truly understand my father’s world…a world of silence embraced by the knowledge that all things are possible if you believe and have the courage to be the change…