Posts Tagged ‘deaf kids’

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.

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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

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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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What I Learned from Raising Three Deaf and Hard of Hearing Kids

December 10, 2013

david graduation

I’m nearing the end of my parenting season.  My kids are on the cusp of adulthood (or so, they think.)  At 20, 18, and 16, they’re at the point where they are deep into their own lives.  I’ve heard it said you never end your journey as a parent, so I’ve segmented this into seasons instead.  I would say the school years were one long winter season! Fortunately, I like snow skiing, so there were lots of times when we just skied through it. Other times, the school years felt like being stuck on a chairlift for hours with the wind and snow blowing through my bones. Yeah, parenting is like that!

Here are some random things that popped into my mind this morning as I reflected back:

Finding Support is a Blessing

In the early years of raising three deaf and hard of hearing kids, the most crucial piece for me was the support of other families with deaf and hard of hearing children.  They say it takes a village to raise a child and you’ll have to create that village for your kid.  I stayed open to meeting as many different families as possible. I didn’t care about the communication modes or methods, that wasn’t important to me. I wanted to connect over the common bond of raising our deaf and hard of hearing kids and getting through the occasional challenges.  I found families everywhere– in my town, state, across the U.S. and thanks to the Internet, literally everywhere.  I set up play groups in my home, at the mall, in the parks, and at the pool.  We’ve lost touch with some of the families who we connected with during the early years and have formed second families with others.  Each one of them had an impact on my kids while they were growing up. There’s that human need for connection and I just wanted to fill it on every level.  We sometimes drove for hours to attend an event with other families. There were some days I questioned the purpose of stuffing three screaming, cranky kids into the car for a short event, but in every case it was always worth it.

 

Kids Need Kids

Which leads me to the next random thought: the important of peers.  When I was growing up, I was the only kid with a hearing aid in my school–until I met my first hard of hearing friend, Shawn, in high school.  Just seeing the hearing aids perched on Shawn’s ears wasn’t enough to get me to connect with her.  If anything, I didn’t want to be reminded of my hearing status. Shawn and I were as different as night and day. Without the common bond of hearing aids, we likely would have never connected but a stubborn itinerant teacher insisted we spend time together.  Shawn was a rebel, a “rough around the edges” gal. I was a Goody Two Shoes.  She introduced me to brass knuckles and numchucks. I taught her the value of paying attention in class. We are still friends today.

At the time, I didn’t realize how important it was for me to connect with another person who also struggled to understand day-to-day conversation and understood the loneliness of being left out.  So when my deaf and hard of hearing kids were growing up, I connected them with as many other deaf and hard of hearing kids as I could.  And again, I didn’t care about how much or how little hearing they had, whether they had hearing aids, implants, or none, or how they communicated.  My kids grew up with kids who cued, signed, spoke, or combined–you name it.

 

Deaf and Hard of Hearing Adults are Essential

I can’t stress this part enough. Connect your kids with deaf and hard of hearing adults while they’re growing up.  If your kid wants to be a fireman, doctor, lawyer, pilot, pharmacist, engineer, janitor, entrepreneur, nurse, counselor, teacher, author, professional athlete, or Nobel Prize winner–go find a deaf/hard of hearing adult living that dream and connect your child to them.  Deaf and hard of hearing adults are out there in all walks of life just like everyone else, but it’s essential for deaf and hard of hearing kids to know them, see them, and connect with them in some way.  If you can’t find someone on the path your child wants to take, then perhaps your deaf/hard of hearing kid is going to be the one to blaze a new path.  Someone has to be the first down a path that hasn’t been taken before–perhaps it’s going to be your child.

 

Last, but Not Least

For years, I tried hard to blend in, fit in, and fly under the radar while growing up hard of hearing.  After I became deaf as a teen, I changed my attitude and embraced the journey.  There’s a line from the movie, “What a Girl Wants” and this line is something I’ve been telling my kids for a long time:

“Why are you trying so hard to fit in when you were born to stand out?”

Our kids were born to stand out. Let ’em shine!

 

Karen Putz

Director of Deaf and Hard of Hearing Infusion

Hands & Voices Board Member

 

 

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