Posts Tagged ‘hard of hearing 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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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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