Archive for January 22, 2014

Derrick Coleman, the First Deaf Super Bowl Football Player

January 22, 2014

There’s a lot of buzz going around since Duracell released a commercial featuring Derrick Coleman, a deaf football player on the Seattle Seahawks team.  Now that the Seahawks are going to the Super Bowl, Derrick is the first deaf player to grace a bowl game.

 

But there’s another story that touches our heart– a letter written by a young deaf fan, shared by her father on Twitter:

young deaf fan letter

“Dear my inspiration, Derrick Coleman,

I know how you feel. I also have hearing aids. Just try your best.  I have faif  in you.  Derrick good job on January 20th game. GO Seattle Seahawks!

Here are things we have in common:

I where two hearing aids.

I love sports.

Other things are, I’m a identical twin and my twin where’s a hearing aid too!

Other articles on Derrick Coleman:

USA Today: Deafness is a Performance Enhancer

NBC News: No Excuses

NY Daily News:  Fullback Undaunted by Hearing Loss

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Blog Spotlight: Hear Cloe

January 15, 2014

hear cloe

Hear Cloe, is a blog written by the daughter of Marjorie Madsen Keilers, Director of our New Mexico  chapter of Hands & Voices. In one of her recent blog posts, Cloe talks about:

My First Language is Garbled

I think that was the first time it really struck me that my speech and writing were impacted by my hearing loss.  This situation was not the first time someone asked me if I spoke another language.  One time someone asked me what kind of accent I had.  The truth, I realized later, was that I had a deaf accent.
Upon further reflection, I discovered what was truly my first language.  It happened during a start of school meeting with new teachers.  I was asked to explain to the teachers what I heard and a the definition of a new language clicked into my head and I said “My first language is Garbled.”  For a lot of teachers, that explained everything.  I can hear, but I am not always hearing sounds that make up coherent words, even with the use of my hearing aids and FM microphone system.  Most likely it is garbled that no one understands; sometimes even I don’t understand it.

 

Cloe also shared some tips on the importance of Self Advocacy which she summarized from Rachel Kolb’s TEDx talk:

  1.  “Find the strategies that work for you.”  This could mean anything from sitting
in a certain spot in class or signing versus speaking.  It does not matter what kind of
strategies they are or if it is the same as anyone else’s; everyone is different.

2.  “Find people who support you.” Friends and family are people who fall into
this category.  Teachers and classmates should also fall into this category (although in
that case, they would also be your friends, no matter how much homework teachers
gives you).  However, some teachers and classmates don’t always support you.  If they
don’t give you the slightest support, then do your best to avoid them.  They are not the
people you want to be counting on.

3.  “Invest in yourself.”  This could mean getting hearing aids, or a sign language
interpreter, and whatever other tools you need.

4.  “Learn how to express what you need.”  This would mean asking for what you
need.  You could ask for something as simple as a set of notes for a class, or speech
therapy, or (I find that this is the hardest) asking people to face you when speaking.

5.  “Say [or in whatever communication mode that works for you] something:”
This is a reiteration of her fourth thought, but it is important, which is why she repeated it.  You have to speak up in order to advocate for yourself.  You cannot remain
silent.

And we especially like this one:

One last note to make on self-advocacy.  Be patient with your AWESOME Mom, or Dad or guardian as you develop your self-advocacy skills.  They have been advocating for you since you were a baby (since it is kind of hard for a baby to say anything in it defense except look cute).  Sometimes it’s hard for them to accept you are growing up!  And be sure to thank everyone who supported you!

 

You can read Cloe’s blog here:  Hear Cloe

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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.”

 

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Deciphering Dane

January 8, 2014

Dane

Dane… all grown up now

by Leeanne Seaver

The Rosetta Stone was discovered in 1799 in Egypt.  Renowned anthropologist Jean-Francois Champollion studied it for some 20 years before he was able to decipher its content and, in 1822, provide the world with the process by which hieroglyphics could be interpreted.  Even with his inestimable knowledge and professional qualifications—aided by two versions of Rosetta’s text in known scripts (Greek and demotic)—it took two decades of dedicated effort before Champollion understood Rosetta’s full meaning.

Comparatively, I have also had almost two decades to decipher my deaf son, Dane, whose hearing loss shrouded certain fundamental considerations with mystery.  How best to communicate with him, raise him, educate him, and socialize him for life in this world presented new challenges every time we thought we’d figured something out. There have been very few simple answers for any of this. I envied my friends for the easy go they were having with their hearing kids. Sure, they faced some tough questions, but we were dealing with increasingly complex riddles:

How can so many opposing communication ideologies all be “the best” according to their experts citing the “research”?

Describe why this child in a classroom with 35 kids his own age is often completely alone?

Explain your spirited defense of the teacher who volunteered to do unauthorized after-school workshops on slang and swear words (covering both signs and speech articulation).

Field Notes to Parents

For Erika, Lisa, Traci, Hina and about 500 other parents who have asked me directly and personally (gulp) about the choices that my husband and I have made for Dane: here is what I am willing to say about what I’ve learned…

Forays into our personal choices are not going to be that helpful to you.  For starters, I don’t want anyone to assume we hold ourselves up as a model to be emulated, (we don’t).  In spite of my musings about what it’s like “In a Perfect World,” I have never lived there; furthermore, I’ve never lived in your world. So brace yourself: the only thing I’m pretty sure of is that every single child who is deaf or hard of hearing is like a Rosetta Stone. I’ve been deciphering the “Dane” Stone, which I’ve misread as often as I got him right. You will be deciphering the Jose Stone, the Ford Stone, the Morgan Stone, the Manezeh Stone and about 500 other cryptic mysteries that resist a uniform solution. My answers are not your answers. The sooner you grow comfortable with the realization that with communication choices there is no formula…no guarantee, the sooner you’ll engage at the right level: personal investment in finding what works for your child.  The opposite of this is to remain in a passive role.  Like a ship without a rudder, you’ll be blown this way and that by every person with an opinion and every professional with a different point of view.  You may never find your course, and ultimately, you may never reach your destination. You will learn to defy anyone who would tell you different.

The Wonders I have Seen

Along this journey, I have personally witnessed many wonders, spectacles (and some horrors) that have convinced me there is no one communication approach that works for all children who are deaf or hard of hearing. I’ve seen wonderfully successful children in every mode or method category, as well as children for whom those respective modes and methods haven’t worked. Every time I saw something that seemed to scream “aha, this is the way!” there would be something else yelling right back “if only that had worked in our case!”  I have saved mental postcards from my visits with:

Three children with hearing loss in the same family—all of them using cochlear implants.  They’ve all been exposed to sign language and spoken language right from the start via a Total Communication approach. They are beautiful signers with incredible oral English. They are on grade level and they’re doing great in school.

A little girl with a normal IQ who was identified with hearing loss at birth, received state-of-the-art amplification, early intervention services, and later educated by qualified teachers of the deaf in a special Total Communication preschool & elementary program just for children with hearing loss.  By age seven, she only had the communication and language skills of a three and a half year old, according to independent evaluation.  Her parents were suing the school.

A culturally Deaf family whose young deaf daughter wanted to speak, which they initially resisted but eventually supported.  From a foundation in ASL, with the help of a cochlear implant, she learned fluent spoken English, and is an intelligible, articulate, successful mainstreamed high school kid today.

The very successful cochlear implanted, mainstreamed oral teenager whose loneliness made him suicidal until he found his niche at the state school for the deaf where he is thriving with new found friends and American Sign Language.

A hearing mom and bilingual deaf dad who assumed their children (all with hearing loss) would be visual communicators—NOT.  Being offered good models of both spoken English and fluent sign, the kids emerged with oral inclinations.  They came, this mom will tell you, wired to listen and speak.

A family who wanted to use Cued Speech, only to be told there was no one trained in the entire state to provide support; this family learned how to Cue anyway, and convinced their school to take it on.  Now others (parents & professionals alike) have moved to this rural area that became a Cueing haven.

 A teenage girl with mild/moderate hearing loss whose parents struggle for services and support has been as challenging as anything those of us with a profoundly deaf kid have experienced. She has felt adrift between the hearing and deaf worlds without a sense of really belonging in either one.

 Deaf kids who bonded strongest to other deaf kids, and others who bonded to their soccer team, their Brownie troop or their hearing cousins.

More than one child whose cochlear implant just didn’t work for him, even though the family and service providers did everything right.

 I’ve seen kids who were identified early, received good intervention services, used cochlear implant technology, and relate comfortably in the “hearing world”; other kids who were identified early, received good intervention services, learned American Sign Language and relate comfortably in Deaf Culture.  Both groups enjoy their lives and feel like they’re a part of a community without a sense of loss that they aren’t part of the other group’s world.

 Conversely, I’ve known kids who exclusively talked or signed but wished they had the others’ ability. They feel ashamed to admit these feelings to their parents and members of their “mode” community.

The message written on the back of each one of these mental postcards is, “This may be true for your child, too, or it may not be true for your child.”  Only your child can show you which kind of kid s/he will turn out to be. You will learn to resist those who make predictions for an outcome they cannot control.

Risking a Rant

If you’re tallying up whether I listed equally supportive vs non-supportive oral/sign scenarios, then you’re missing the point entirely.  I’m simply trying to demonstrate that for every “truism” there is an equal and opposite “falsism” plus an a lot of weighty, highly variable subtext to these issues. There are too many living examples all around us that debunk all the hard line generalizations, “sacred” dogma, and subjectively interpreted evidence about what’s best for children who are deaf or hard of hearing. Personally, I’ve learned to be skeptical of some of the research cited in support of each ideological school of thought.  You will discover that it’s often produced and presented by the respective “camps” that selectively ignore broader contexts, heterogeneous control groups, and, well, any study that contradicts them.  Further, if it’s not looking at communication in changing environments and over a long enough span of time, (i.e., longitudinally…most of them aren’t), it’s going to miss the child’s feedback. This “end-user” perspective is probably the most important indicator of the effectiveness of all our efforts. You’ll find that this cannot be ignored.

The Lexicon

The Rosetta Stone would probably still remain a mystery if it weren’t for the Greek and demotic lexicon, and fortunately, I think we have some similar advantages.  While there may not be one communication approach that works for all DHH kids, there are certainly basic needs common to every human being that must be addressed.  The process of meeting them provides a lot of illumination about which mode or method of communication is right for your child, and how that question and its answer can change as s/he grows.

Keep a close watch on these fronts and strive to understand and address each in the context of your child’s abilities, inclinations and personality:

 Is my child’s language level appropriate and comparable to that of typical hearing peers?

Does his vocabulary and communication mode/method enable him to express what’s on his mind and in his heart?

Does she have access to and understand all of the communication that’s happening around her?

Does s/he have good language models (parents and caregivers had better be able to say yes here) whether the language is signed or spoken?

Are all the components of your plan in place, i.e., is the sound and/or sight technology and communication strategy fully, functionally and effectively intact?

Do your professionals and service providers ask questions about what your child seems most comfortable with, and teach you how to recognize important cues from your son or daughter?

Are her educational setting and teachers right? Is he making the grade at his age/grade level?

Does your child have friends, and as s/he grows, do his/her friendships provide a genuine experience of trust, mutual support and in-depth communication exchange?

Do you hover and rescue, or let her make her own decisions…her own mistakes…and learn all the wisdom that comes with experiencing cause & effect relationships?

Are you sending a clear message to your child that he has your love and acceptance just as he is, no matter what?

Obviously, this list could keep growing and it should. It might even take 20 years to complete it and understand its full meaning.   ~

© Leeanne Seaver 2008

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