Posts Tagged ‘raising a deaf child’
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.
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:
Kierra was born August 18, 2004 at 1:00 in the afternoon in Sulphur, LA at West Cal-Cam hospital. No one would have ever suspected that her incredible journey in life would start that day.
I am Kierra’s father and this is the story of Kierra’s journey so far after nearly 10 years on this earth.
We found out that Kim was pregnant right around Christmas time in 2003. We were so excited by this news and at the same time absolutely worried. The year prior, my wife had a miscarriage. This was a devastating time in our young lives and the new pregnancy only elevated our fears and concerns. Our doctor was optimistic about this new pregnancy. My wife was very sick for the first 3-4 months of the pregnancy and this caused me great concern for her health. As time passed, so did the morning sickness. After about 5 months, I could finally see and feel my baby growing inside her belly. All the testing that was done came back positive news. We went for the ultrasound to determine the gender of the baby. I was absolutely sure that we were having another boy. My family, on my side, produced a great number of boys and the odds did not look to be in the pink direction this time.
Well, low and behold the tech informed us that we were having a girl. I could not believe it, A GIRL?? That also brought on a new set of fears for me personally, not only do I have a 2nd child on the way but a girl. I had no clue what to do with a girl. Girls meant trouble. And by trouble I mean, boys! So now my strategy had to change. You know shotguns and cleaning them, and menacing threats to come in the future. We had already decided on the name that we both loved: Kierra Jade Welker.
The closer Kim got to the due date the more excited and scared I felt. My son, Dakota, was so happy that he was going to have a little sister to look after. (Although now he swears up and down he wanted a brother). I was happy to know what it was like to have a daddy’s girl and Kim was finally going to have a daughter to equal out the balance in the house.
We went to see her doctor on a regular visit and he asked her if she was ready to deliver. She was like “OH YES, PLEASE” and he scheduled her to be induced the following day. The labor was fairly short and Kierra came out in no time. I was there by her side as she labored for Kierra to come meet the world. I had never seen anything so magical and beautiful than the delivery of a child. I looked down to confirm that she was in fact a girl and saw her ear. The doctor proclaimed that she most certainly a girl and I to do my duty of cutting the umbilical cord, weighing and measuring her. Everyone finally got to meet her and hold her. I got to be there for her at night while Kim recovered from the delivery.
The doctor came in to talk to my wife and me, she had some news that had her concerned. Kierra had not passed the initial hearing test. She said that this was not uncommon in newborn babies because they sometimes have fluid in their ears. We were advised to wait a month and take her to an audiologist for another hearing test. The month went by as normal with me bonding with my princess and being there every day to help. I finally went back to work and Kim stayed home to take care of Kierra. The day that Kierra was to be tested for her hearing again I had to work. I was positive in my own mind that everything would be fine. I got the call that afternoon from my wife’s mother. The results showed that Kierra had very little hearing, if any, in both ears. I was initially in shock and heartbroken at the thought that she would never potentially hear me sing and talk to her. I was really upset and had to leave work to clear my head.
On the drive home, I decided that this would not change a thing. She would still have all the opportunities that any child would have. We would not treat her any different. There would be challenges of course, but we were ready to take them on. My wife was great; she dove into this life challenge head on. We started with teaching her sign language as soon as she could sit up; teaching her the basics of communication… eat, drink, sleep, potty etc. We started the process with the ENT doctor to see what her options were. Due to the fact that she did have a little hearing in her ears, we started with hearing aids. Getting a less than 2 year old to wear and keep hearing aids in was a challenge in itself. She adapted to wearing them and we started sending her to a speech therapist. She didn’t seem to make a lot of progress with her hearing aids. The audiologist spoke to us about the possibility of her getting a cochlear implant device. I was initially against such an operation because my baby was only 2 and I couldn’t fathom putting her through such a big operation.
We looked into the benefits of having such an operation and how it would affect Kierra. We decided to go ahead and schedule her for the procedure at Ochsner in New Orleans, LA. The big day came and I was so scared. I cried like a baby when they took her back for the procedure. Kierra was not scared; she was a real trooper. When we were able to go see her in recovery, I cried and held her. Again Kierra was a trooper and acted like nothing was wrong. Amazing behavior for a 2 year old after such a big operation. That was when her real journey began!
Kierra received her device a few days before her 3rd birthday. The activation was successful and she heard us for the first time that day. I cried again knowing that she would have the opportunity to hear.
Kierra started school that same year at College Oaks in Lake Charles, LA., The school offered classes for children with her same condition. Her development was amazing and she proved to be a very smart, intelligent little girl. She started to communicate with us more every day. She was signing well and learning to understand how to put words with her sign language. I remember every night before bed we would sign the alphabet. I believe this helped her to finger spell and at the same time learn the alphabet. Nowadays Kierra is very vocal and outspoken. There is not a shy bone in her body. She’s outgoing with a bubbly personality. She has done very well in school thus far and has had very little trouble keeping up with the rest of the class. Her doctors have been very pleased with her development.
Kierra is now in the 4th grade and has been an honor roll student ever since she started school. This year she participated in her school’s science fair project. She wanted to do something different, so we brainstormed ideas for her theme. She decided to do a project about the color of bottles and how external temperature affects the water inside based on their color. She used 4 different color bottles (clear, brown, blue & green) and did 2 separate controlled experiments. She cooled the water to 32 degrees F and measured the temperature of the bottles every 30 minutes for 4 hours. One was done inside and one was done outside. She recorded the temperature indoors and outdoors on a graph. She had hypothesized that the brown bottle would be least affected and stay cooler the longest. Her experiment actually proved otherwise. The brown bottle got warmer faster and the clear bottle was least affected by external temperature. She put together a very nice presentation and was able to speak to the judges and explain her experiment to them. She was awarded a 2nd place medal for her work and the chance to compete in the regional science fair project later that month. She was so excited and I was so proud of her. The regional competition was slated for Feb. 14th at McNeese State College in Lake Charles. Her entry was placed under the Environmental Science portion of the competition. There were hundreds of entries from all area schools and age divisions. She again presented her experiment to 2 judges and was able to tell them about her project with little assistance from her mom (sign if needed). Awards time came and Kierra was so nervous, she was literally sitting on the edge of her seat.
My wife and I were equally nervous because we knew there we were so many excellent projects she was up against. Kierra was awarded a 2nd place medal for her entry. She was so ecstatic that she ran to the front of the auditorium to accept her award. My heart swelled with pride at her achievement. It speaks volumes to her dedication to school and shows that her condition never held her back one bit. She never once used it as an excuse for any failures that she may have encountered. She’s a remarkable young lady and I consider myself blessed to be allowed to be her father. She’s had quite the journey in her young life and I only see great things for her future. She is a true testament to what perseverance can do. She so far has played very well with the hand she has been dealt.
I know this may seem very biased because I am her father. But that’s what fathers are for, to support their children and raise them up to be remarkable people. Kierra is quite the spirit and spending any time with her, anyone would most likely agree. Thanks for your time.
Kierra’s loving father,
Bridget Ferguson is the Project Manager for the Family Sign Language Facilitator Service. Her husband, Oliver, is a Visual Effects Technical Director and has worked on major films such as The Hobbit and Avatar. They are the parents of Zoe and Elijah and reside in New Zealand. Bridget shared her thoughts about parenting on her blog and gave permission to share it here:
I’ve been reflecting on what, if anything, I would do differently if I had my time again as a mum of a new born baby. I vividly remember that overwhelming sense of excitement, fear, joy and exhaustion! I remember the day that it hit me that this little life was utterly dependent on us.
Our first child, Zoe, was born in 2001, at that time Wellington did not have newborn hearing screening. In a sense I feel fortunate that we did not have to contend with the numerous professionals, appointments and conflicting advice that often follows the newborn hearing screening. We had 15 months of just bonding and growing together as a family. Language was acquired in a playful way in our home and in the wider community. Our two children were born into a bilingual/bimodal home. I am hearing and my husband, Oliver, is Deaf. We have two children, Zoe is Deaf and Elijah is hearing, NZSL is their first language and by the time Zoe was identified via an ABR, she was signing in sentences!
Prior to having children I had worked as a sign language interpreter and a teacher of the Deaf. But my most rewarding and challenging role has been as a mum. All the book knowledge and experience of working in schools and in the community didn’t prepare me for the parenting journey!
One of the struggles we had early on, when Zoe was very young, was finding a community of families, using NZSL. We struggled to find deaf or hearing children with whom our children could play, interact and sign with. We relocated to Sydney Australia and found an amazing community of parents and children who had sign langauge as a language in their homes! This made a world of difference. Both of our children attended a bilingual pre school. Zoe then went onto a bilingual primary school in Sydney.
Even when we returned to New Zealand and no longer had the option of a bilingual education setting for Zoe, the thing that has made the mainstream schools more accessible has been having Deaf professionals involved in the school in a variety of ways and having a community of users who have made the effort to learn NZSL.
When I reflect on Zoe’s primary school years, the biggest priority in the mainstream schools has been friendships and social acceptance. There was often a greater focus (by the professionals) on learning goals and academic learning, however we found very quickly that if Zoe was not happy and was having issues with friendships then her academic learning was taking a back seat anyway. So it made sense to us to put the effort and focus into ensuring Zoe felt confident and comfortable at school.
Her final two years of primary school have been amazing. She has been at a primary school that has adopted NZSL as the alternate langauge for the years 5-8 students. This has created an environment where sign language is a language seen throughout the school not ‘just for the deaf student ‘.
The notion of inclusion has been made more of a reality via the provision of a professional educational interpreter. This has enabled Zoe to relax and learn alongside her hearing peers. And with the peers also having the opportunity to acquire NZSL, it has enabled Zoe to develop real friendships.
In our home we want to raise our children to know that they can do what ever they put their minds to, and to instill in them a sense of confidence and pride in their bilingual/bicultural identities. Oliver and I work hard to ensure that both children have access to NZSL and English. Within our bilingual/bimodal house there are a number of things that we do that I believe brings us closer as a family unit and adds more clarity to our communication.
Signing at the dinner table- when seated around the table for dinner, NZSL is the language for conversations. This is because it is accessible to all of us and ensures that no-one is left out.
For families who are starting to develop NZSL in the home, this can be a great way of developing confidence and practice in the language. The conversation is often predictable and provides a safe setting for the family to all give it a go.
Storytime in sign- bedtime stories were always signed to Zoe. For Elijah he would choose particular stories to be read in spoken English and others he preferred to have signed to him. Again for a family starting out with developing NZSL, learning a particular story, rhyme or song, can be another way of developing confidence in the language and bonding with your children.
Signing around the child – I believe it is important that deaf children see conversations around them and that they are aware that there are many users of NZSL – both Deaf and hearing. It is important that parents take time daily to have conversations in sign language, not necassarily with the deaf child, but with hearing children and each other. This provides the deaf child the opportunity to ‘over hear’, ask questions and learn about the world around them. In the same way that hearing children pick up information incidently from conversations around them.
Seeking out Deaf examples- we are always exposing our children to Deaf examples in all walks of life. There are so many benefits to this: for Zoe it provides her more opportunities to have greater aspirations and a variety of role models. For Elijah it reiterates the validity of his first language and a sense of pride that he is connected to the Deaf world. For the teachers working with Zoe and the general hearing community, seeing successful Deaf people in a variety of roles broadens their understanding of what it means to be Deaf and raises their expectations of deaf children.
As parents there is nothing we want more than happy healthy children. We aim to have an environment that enables our children to communicate with us about anything. I love that Zoe and Elijah can sit with us at the end of a day and tell us about the highs and low of their day.
I am in awe of Zoe’s perseverance. As inclusive as her school is she is still faced daily with a predominantly hearing environment and it is exhausting at times. There are many days when she just wants to be in a Deaf environment and access information directly (not via an interpreter). Her experience this year attending the WFDYS children’s camp at Gallaudet University, was incredible. This was her first time staying away from us for that long. She found it challenging but again her perseverance and courage served her well. She has connected with deaf children from all over the world. She has met Deaf leaders and seen parts of the world that have so much meaning to her and have inspired her to strive to get back to Gallaudet University in the future.
For families who are beginning to develop NZSL I believe it is important that they feel connected and comfortable with the language. This happens by having a connection to a community of users of the language. Having access to Deaf adults, hearing signers, deaf and hearing children who use NZSL, means that families can relax and enjoy learning NZSL alongside their child. This also provides numerous opportunities to practice and refine their use of the language. Although Oliver and I were bilingual before having our children, it was having access to a community of signers at a variety of ages, that made a huge difference to how our children acquired the languages.
Our parenting journey over the past 13 years has been a roller coaster ride that has seen us relocate to different cities in NZ and even to Australia, in search of what we wanted for our children. I have no regrets and I am thankful for the lessons learned with each move we have made. This year we have entered the ‘teenage’ years I am again feeling that overwhelming sense of fear, joy and exhaustion…but most of all excitement about what the future holds for our bilingual/bimodal children!
Read the original post on Bridget’s site: Reflecting on Our Parenting Journey So Far
My oldest daughter Ashlin was identified with profound hearing loss when she was 18 months old. The news knocked us off our feet. It was completely unexpected. No one in our family has a hearing loss, nor did anyone we knew. Until I became involved with Hands & Voices, I carefully used the term ‘hearing loss’ when it came to both my girls. My involvement with Hands & Voices meant opening my vocabulary to include such words as “deaf.”
In my opening comments at our first statewide conference this past spring, I admitted for the first time how difficult it was for me to use the word “deaf” when it came to my girls. I was personally surprised by how emotional and meaningful that one little word was to me as I admitted out loud to a roomful of strangers, and for the first time, that I didn’t like saying “deaf.” Deaf. For some, it’s just a word. For many it’s who they are. For hearing parents, this one little word can be scary: not just new to their vocabulary, but a reminder that their child is different from them. The word brings us face to face with the unknown. My saying “hearing loss” felt less foreign to me, easier to my heart and I find that when I use the word “deaf” in public I get a more pitied look from the person I am talking to. Deaf to me meant a world I didn’t know, a community that might not accept our choices.
Deaf. Both of my girls are deaf. They are also smart, funny, silly, caring, generous, snuggly. Oh, and they have cute little girl butts! Deaf. Why is it that this part of them stands out the most? Why is it that this one word raises so much controversy, so much angst? And if I really want to talk about controversy, then I just need to mention the words “cochlear implant!” The use of hearing aids amongst hard of hearing individuals doesn’t seem to entice such controversy. Why is that? But cochlear implants can bring hostility—the eviction of someone from the Deaf community.
At the conference, former H&V board member Janet Johanson stated that her bilateral cochlear implants are a “tool,” similar to using the myriad of other technological tools available to deaf/hard of hearing individuals. As a parent, I have always looked at cochlear implants as a communication tool that can help my daughters be with and part of the greater community. They are still deaf. They just have this incredible technology that let’s them talk and sing and hear birds sing. Blind people don’t seem to have such an exclusive culture or so much emotion put into their sensory loss; why does deafness cause so much emotion?
I wonder how my girls will feel about deafness, the Deaf culture and community in the future. Will they feel like they are part of the deaf world or hearing world? Or, because they were implanted at young ages, and attend school with hearing kids and kids with hearing loss and are part of the H&V community, will that line become blurred for them? Will it matter? No one can tell me what life will be like for my kids since only in the last few years have children been getting implanted so early.
Question: Should they define their life as being deaf or hearing? Or should they define their life by the type of women they are going to be, the role they will play in our community, and in the world? Call me naïve (and I very well might be when it comes to this!) but as their parent I want their lives to be defined by the human beings they will grow up to be. I want them to do amazing things with their lives. I want them to make a difference. I want them to be happy, to believe, to have depth in their character. My girls get to experience the beauty of quiet and of sound which I think can give them a unique perspective on things, and I think it will make them better women, and will make them more attuned to the world.
I know their deafness has made me a better person and I thank them for that. I have been able to meet really incredible people from around the world because of them.
My girls are deaf. I am grateful. They are healthy, they are smart, they are fun to be with. As some incredible deaf adults have told me, I am making too much of this. Maybe I am. But as I meet more parents and deaf individuals, I come up with more questions. My experience with deafness is limited; I have more to learn and I am grateful that I get to learn more.
Deaf. I no longer feel threatened by this one word.
I vividly remember the day we learned our son was deaf. New parents as we were, I remember being unsure of his future, feeling crushed by the decisions we faced, and feeling so incredibly alone. But what slowly built up our strength in those early months, throughout his life, and even today is the reassurance that we are, in fact, NOT alone. We learned that there are families all across Minnesota, all across the United States, and the world on the same journey. And when we come together and start to share our experiences, the differences between our geography, our cultures, our choices and paths…fall away. What is left is this common bond of loving our child so much and our need to reach out to each other for acceptance, wisdom, guidance, innovation, resilience, and even laughter. Hands & Voices means my family and most importantly, my son has a positive, up-lifting community who sees the gifts he brings and together, celebrates them.