Posts Tagged ‘deaf children’

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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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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