Posts Tagged ‘deaf children’

Elizabeth Albers: Language in Any Form is a Beautiful Thing

June 12, 2017

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

1_family_picture

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

2_Matthew_adoption

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

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

3_bothboys

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

Language, in any form, is a beautiful thing.

Facebooktwittergoogle_pluspinterestmailFacebooktwittergoogle_pluspinterestmail

Alyssa Pecorino: There’s No Place Like Camp

May 17, 2017

alyssa at deaf camp

 

 

It’s the end of June.  School has let out and it’s time to enjoy the summer.  Mom and Dad are helping me pack my things for two weeks away at summer camp.  I have never been to camp before and I’m excited to try something new, yet I’m nervous about who I’m going to meet.  

Will I be able to understand them?  

Will they understand me?  

Being a 10 year old, oral, mainstreamed, hard of hearing child, I was never exposed to Deaf culture or American Sign Language.  All I had was the knowledge from Linda Bove of Sesame Street’s sign language book and the occasional commercial or blurb on television featuring Deaf people.  

What was this deaf camp going to be like?  I have a hard enough time understanding people who speak, now I’m going to immerse myself into another language and get introduced to a whole new community.  No pressure there, right?

Moreover, how did we get to this point?  

Like most parents, my mother researched what she could (before the internet and Google) and got advice from everyone including her younger sister, who is a highly regarded speech pathologist on Long Island.  My aunt made her point clear: yes, your child is succeeding orally and using what she has in a mainstream setting, but socially she’s falling behind.  You need to send her to a camp for Deaf and hard of hearing children so she can develop her identity and learn all those wonderful things we don’t learn in school.  The education that children get from camp is just as valuable as a formal education setting, if not more.  This is how my parents came across Camp Isola Bella in Salisbury, Connecticut.

Camp Isola Bella is the oldest and longest running camp for Deaf and Hard of Hearing children in the country.  It’s a picturesque island in the middle of Twin Lakes in Salisbury.  This camp beckons Deaf and Hard of hearing children from all over the world to come enjoy their program and develop their identities.  I was fortunate to be one of them from 1988 to 1993.  Little did I know that the nervous child my parents dropped off would grow to be a confident young teenager just from two weeks in the summer.  I went from crying every night to laughing every day and eventually helping new campers acclimate.  My crying wasn’t from how people treated me, but rather from me adjusting to a new environment and preparing to reveal my new identity.  The caterpillar was becoming a butterfly and this is a dramatic change that was bound to shed a few tears.  Besides, as I wrote to my mother that first week, it’s okay to cry because none of the other campers could hear me anyway.  :o)

IMG_2974

 

Let’s fast forward to June 2000.  I’m now 21 years of age and more excited than ever to go back to camp.  It was the only place I truly felt happy and free to be myself.  This time, I was going back as a camp counselor and newly-certified lifeguard.  Every fiber of my being is anticipating a wonderful summer where I finally get to give back to the camp that gave me my identity and a community to belong to. I couldn’t wait to welcome those first timers to camp, especially those who are in the same shoes that I was in back in 1988.  In my mind I was only going to do this for a summer or two before getting a full-time job.  After all, how could I possibly be able to make my schedule work to be able to work here in the summers? Could I be lucky enough to be able to do this for more than one summer?  

 

Fast forward to today: it’s now my 18th summer at Camp Isola Bella.  I went from being a teacher’s aide at various schools on Long Island to a teacher in both New York and Connecticut to an administrator at the American School for the Deaf.  I worked my way up from counselor to Camp Director and I have no intention of leaving any time soon.  When you find a place that isn’t a job but rather a passion that requires you to pinch yourself to believe you are lucky enough to be working there, you don’t leave.  Seeing new and old campers come every summer to a place where they are free to be themselves, learn the meaning of resilience and develop their identity–that is a place to be cherished.  It’s awesome–which is why our theme this summer is “Believe in *A.W.E.S.O.M.E.!”, which stands for Adventurous World of Experience with Signing Opportunities and Meaningful Education.

IMG_2468

Let me just share one story with you before I wrap up this article.  Many parents are not only concerned about sending their children away from home, but also hesitant that their child will thrive in an environment that doesn’t use technology.  Yes, that’s right, most camps don’t allow phones, iPads, laptops, etc.  We’re one of them.  We had a young teenager come a few years ago who was anxious being away from home for the first time, but not only that, she was upset there was no television or wi-fi.  After a few days, she adjusted and soon forgot about the lack of technology and focused more on being with people and making friends. She came back the next year and admitted she wasn’t looking forward to being without her TV again, but enjoyed the program and that helped a little with the anxiety.  She was adamant that she MUST have TV and looked forward to getting it back when camp was over.  Naturally we all chuckled and quickly we forgot about the technology again.  

Finally, during her third year, I walked down to the waterfront where all the campers were lined up to do the swim test and I gave her a warm hug and welcome back to camp.  I teased her and asked if she missed her TV.  Without skipping a beat, she opened her arms as if to show off the island and waterfront and exclaimed:  “THIS is my television!”  

I immediately welled up and gave her the biggest hug I could muster.  THIS is my reason for working at the greatest place in the world.  There is no place like camp.

If you haven’t already, please consider sending your child to camp.  It doesn’t have to be at Camp Isola Bella, but can be at any one of the many camps for Deaf and hard of hearing children around the country.  As I mentioned above, it’s an invaluable experience for any child, but more so for those of us in the Deaf and hard of hearing community.

Alyssa Pecorino, M.S.

Questions about sending your child to camp? You can reach me at Alyssa.Pecorino@asd-1817.org

Facebooktwittergoogle_pluspinterestmailFacebooktwittergoogle_pluspinterestmail

Helen Mackay: Turning the Tables

August 1, 2016

Three Amigos - 1

I cried today.

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

Today. The. Tables. Turned.

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

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

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

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

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

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

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

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

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

Me and my Deaf daughter

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

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

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

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

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

kimodo - 1

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

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

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

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

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

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

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

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

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

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

Helen Mackay

Facebooktwittergoogle_pluspinterestmailFacebooktwittergoogle_pluspinterestmail

More Than We Know ~ Bonnie Leiser (Grandmother)

January 15, 2014

Apple picking with Nana

“We will teach you all that we know. You will teach us more than we know.” I reread these lines from a welcoming prayer I had written to my first granddaughter for her birth, as I tucked in both of my precious little girls this past new year’s eve. We were tending to them that night so their mom and dad could go out on a date. As the year turned the final corner and a new one loomed ahead, I gave pause and thought about the true depth of what these words had come to mean for me.

Our first granddaughter, Ashlin, was born in a very successful water-birth, We had the honor of being present for that miracle. Both mama and baby were fine, healthy and robust. We even photographed the truly exceptional moment when Ashlin actually reached up towards her father’s face, as he leaned in to say hello to his new daughter. Our son, Walker, and his beautiful wife, Helen, had made us grandparents at long last! We were ecstatic!

Ashlin was such a sweet little baby, so happy, responsive, so loved. I remember bowing over her and talking to her and hearing hear laugh and smile up at me. As she grew, her sweet demeanor remained. Time went by and yet she hadn’t spoken a word. She was nearly two and not talking yet. My son and I were convinced she would speak up when she was good and ready to do it, on her own timeframe. I guess, looking back, we were in denial, however, my husband and Helen had some concerns. One day at her doctor’s appointment it was suggested that hearing tests be done. The result of the test told us that Ashlin was profoundly deaf. It was the most shocking and devastating news I had ever heard. There was no family history of deafness that we knew of, nothing to help us understand how this could be. We reeled with the news, passing through the stages of grief, loss, confusion like moving through heavy water. How would my beautiful granddaughter ever hear the rich beauty of music, so dear to my heart? How would she know the sounds of nature and life? How would she communicate with us? How could she ever hear the words “I love you”?

Then the family had to move into action to find out what we could do. This was a fact of life for us and we simply had to move ahead. Helen and Walker began a search into all of the options which might be pursued. We all learned so much. They told us about an incredible procedure called cochlear implants. I had never heard of this. It took me some time to come to accept it, as I was concerned about the potential dangers to Ashlin. Through the help of a friend, I found a family whose young son had been implanted. That family was gracious enough to meet with me and let me ask questions of the father and son. It really helped me to go down the path of cochlear implantation. I fully understood that I was just the Nana and it was not my decision to make, but I desperately wanted to believe it was the right thing to do.

The day came when Ashlin, just barely two years of age, got her first implant. It was so hard to see that little baby girl being carried off into the operating room. The family waited in agonizing tension for her return from surgery. I filler the air with my quiet prayers for her, asking that she come back to us; asking for her protection. At last she came out. The poor thing looked like she had been hit by a truck. But, after a while her little spirit awakened and she was with us again.

Our second beautiful granddaughter, Mikaylin, was born in another successful water-birth. We all held our breath wondering if she too would be deaf. This time testing was done early on. We awaited the results with stilled hearts. The answer came back that she was, indeed, deaf. How could this be? Again, we were thrown into sadness. And yet, this time we had more hope. We knew there was a way for her to hear; and she had an older sister who was thriving.

Mikaylin had her first implant surgery when she was 10 months old. I’ll tell you, it doesn’t get any easier to see a second baby girl carried off to the operating room. The prayers were every bit as strong for her. Even though we had been through this before, twice, it was still so hard. But, Mikaylin bounced back from her surgery very quickly and she was in full force very soon.

I think, honestly, that it is a blessing that both girls are deaf. Both now have bilateral cochlear implants. They share a bond that none of us can even fully fathom as hearing adults. They will always have this bond. Their relationship will always be strong and magical.

Both of our beautiful granddaughters are strong, healthy, and smart. They love to dance and sing. Their speech is clear and their diction as good as, or better than, hearing kids of the same age. They have been going to school since age three and had lots of special training from a wonderful school, They are now even learning sign language, which pleases me immensely. I hope that they will master several languages in their lives. The girls have bright futures with unlimited possibilities.

We thank these girls for being in our lives. They have and will continue to “teach us more than we know.”

 

Facebooktwittergoogle_pluspinterestmailFacebooktwittergoogle_pluspinterestmail