Thank you to our champion, Susan Lane

By Tereza Kazemir

BC Hands & Voices was thrilled to award our first “Lifetime Honorary Membership” to Susan Lane at a celebration of her recent retirement in March 2015.  Many of you may know of Susan, and even those of you who haven’t had the opportunity to meet her have likely been positively affected by her hard work. She has left a wonderful legacy for families of children who are deaf and hard of hearing in British Columbia.

Susan Lane

Susan Lane

In 1983, Susan started the Elks Auditory Rehabilitation Centre (now the BC Family Hearing Resource Society), a program that continues to provide education, support, and resources to families with young deaf and hard of hearing children.  She was ahead of her time – from the beginning, her program was family-centred and offered a range of communication options.  Susan recognized that there was no single communication approach that would work successfully for all children and their families.

Susan served as the executive director of BC Family Hearing Resource Society for 25 years.  During that time, the program grew to serve children and families all around our province, and established advanced professional development workshops for speech-language pathologists and audiologists. Susan also co-authored the book “My Turn To Learn: A Guide for Parents of Babies and Young Children with Hearing Loss.” This book has been translated into five languages, and is given to the family of every new baby identified with a hearing loss in BC.

In 2008, Susan left BC Family Hearing Resource Society to take up the new challenge of helping to establish a newborn hearing screening and intervention program in BC.  Given her extensive experience and knowledge in working with families of young children with hearing loss, she was the ideal person to become the first Provincial Intervention Coordinator with the BC Early Hearing Program.  She was keenly aware of the importance of both early intervention and parent-to-parent support for families of newly identified babies, and worked tirelessly to implement these parts of the new program.

Susan considered it vitally important to gather input from stakeholders – and this included parents. As part of her role in developing the BC Early Hearing Program, she formed a Parent Advisory Group.  She asked for parents’ thoughts, ideas, suggestions, and feedback on all parts of the program – and valued that input.  When the Parent Advisory Group recommended starting a Guide By Your Side program (which also meant starting a chapter of Hands & Voices), Susan supported us every step of the way.  She believed in us, and paved the way for us to become parent leaders, empowering us to help other families and to have a voice within the system.

Susan also recognized the importance of deaf and hard of hearing role models for families of young children with hearing loss. Most recently, she was instrumental in creating the DVD “Nice to Meet You”, to introduce parents to Deaf and Hard of Hearing individuals.

In 2013, Susan was awarded the BC Community Achievement Award recognizing her lifetime of work which has made “an extraordinary difference in the lives of infants and youth with hearing loss”. Here at BC Hands & Voices, we wholeheartedly agree that she has made an extraordinary difference, but we think that difference extends to parents as well.

So on behalf of all of us parents, we want to say thank you, Susan, for being our champion.  You have given so much more than you realize. We celebrate your legacy that will live on in the countless parents and professionals you have touched over the years.

“Susan is remarkable for her compassion towards families in need, and her willingness to take immediate action to help them. Susan is a very caring and supportive person. She is also very inclusive, always making sure that no family in need is ever left behind.”
~ Amy Ho

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Family Fun Picnic

2015 Fun Family Picnic-page-001

WHO: BC Hands & Voices, Guide By Your SideBC Early Hearing Program, CHHA BC Parents’ Branch, Family & Community Services, Family Network for Deaf Children – Deaf Youth Today (DYT)

WHAT: An event for deaf/hard of hearing children, their siblings and parents and children with their Deaf/hard of hearing parents (CODA). Join us for a fun day! We will provide:
• Hot dog lunch
• Entertainment and games for the kids
• An opportunity to mix and mingle with other families and with youth/young adults who are deaf or hard of hearing.
Please bring with you:
• a salad, fruit or vegetable plate or dessert to share (note: no freezer/fridge/oven)
• lawn chairs or blanket to sit on
Rain or Shine!  Free admission! Donations gratefully accepted at the event.

WHEN: Saturday June 20th, 11:00 am to 3:00 pm

WHERE: Victory Hill/ Provincial Deaf & Hard of Hearing Services 4334 Victory St., Burnaby BC

CONTACT/ RSVP: info@CHHAparents.com  Pre-registration is required so we know how many people to expect. 
PLEASE REGISTER ONLINE by June 13 at www.CHHAparents.com
Special Note- Families of children with Atresia and Microtia – let’s meet up at the picnic!
If you are interested in meeting up with other families of children with Atresia and Microtia, please contact Teresa Kazemir at tkazemir@gmail.com who will collect names, and make a point of introducing families to one another during the picnic.

Traditional Chinese Poster

Simplified Chinese Poster

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Our Journey with Auditory Neuropathy Spectrum Disorder (ANSD): One Family’s Journey

IMG_0037(1)

When our daughter Skyla was born, we became the proud parents of a healthy baby girl! During her first months, she had a series of “inconclusive” hearing tests. After a referral for follow-up tests, she was identified some weeks later with a profound sensorineural hearing loss in both ears. A lot of the information just flew over us at that point – it didn’t really matter to me, I just knew that Skyla was profoundly deaf.

Over time, we learnt that Skyla had Auditory Neuropathy Spectrum Disorder (ANSD), a less common form of hearing loss. This was 2008, and ANSD was a relatively new term in the world of hearing loss. Even now, it is still understudied. We learnt there was a broad spectrum to the diagnosis, and that every child with ANSD may be different. I interpreted the term ANSD as being a fancy term for something difficult to explain.

She got her hearing aids quickly and we met with the early intervention providers to select a program that would fit with our family. We provided input at every opportunity; reading, talking and narrating through our day-to-day activities. Our priority for our daughter quickly became getting her access to sound and giving her hearing.

Skyla’s CT / MRI scans were unclear and seemed to indicate that she did not have an auditory nerve. We were therefore advised that a cochlear implant may not work. We didn’t want to give up this opportunity just yet though. Skyla had another set of scans and this time they produced clearer images of auditory nerves. (Bundled or compromised nerves was the term offered as the cause of her hearing loss). Given the profound level of hearing loss, Skyla was implanted with two cochlear implants at the same time when she was 16 months old.

Afte 2 years of really committing to communication and spoken language development with insufficient progress, it was suggested to us by many people involved in our services to consider a change in communication modes. We felt bonded with our daughter, but the lack of language and communication was causing frustrations and difficulty with attachment. I was reaching out to various organizations by this time, and we began to provide Skyla with a combination of auditory and visual cues, and sign language to give her as much information as we could. This not only helped Skyla immensely at that time, but continues to be a communication-saver when she doesn’t wear her implants (for example, in the afternoons when she has “listening breaks”, in the bath, while swimming or at bedtime).

It felt like many professionals seemed to want to put a deadline on progress, but we’ve learned it is better for us not to do this. Our daughter will progress on her own schedule, and we will provide her with what she needs along the way, re­evaluating as we go. For example, when the time came that we wanted to learn American Sign Language, our intervention service coordinator was able to help put the services we needed in place. I would encourage other families to keep giving your child with ANSD as much access to auditory input and language as possible. Enjoy the time with your child, sing together, dance and laugh a lot! Your unconditional love for each other will carry you through this tough journey in the early days.

Today, Skyla is an active 6 year old in a mainstream school involved in sports, dance and swimming. She is learning to play the violin after showing interest in it. I would encourage other parents to give your child every opportunity possible, with no limits on what they can do. We as parents have many more decisions and work to do in modeling and supporting our children in self-advocacy – let your child take the lead in whatever they enjoy doing.

Update- Families looking for more information about ANSD can find it here:  http://www.phsa.ca/bc-early-hearing/Documents/ANSD%20Information%20for%20BC%20Families.pdf

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Focusing on the Commonalities of Auditory Neuropathy Spectrum Disorder (ANSD)

By: Jen Gow

In keeping with our trend of ‘specialized coffee nights’, we brought together parents of children with Auditory Neuropathy Spectrum Disorder (ANSD) last fall. The reason that ANSD is called a ‘spectrum’ disorder is because the effects of ANSD are variable and unique for each child.

Jenny Hatton, audiologist with the BC Early Hearing Program (BCEHP), was on-hand to answer the many technical questions that come with this specific type of hearing loss.  In a new ANSD information handbook Jenny is creating for the BCEHP, ANSD is described as a type of hearing loss where sounds travel as they typically would through all parts of the ear (the outer, middle and inner ear) but there is a problem with sound transferring from the cochlea in the inner ear to the auditory (hearing) nerve.  About 10% of children with sensorineural hearing loss have ANSD. What distinguishes ANSD from more common types of sensorineural hearing loss is that sound information reaching the brain isn’t organized in a way that the brain can readily understand. This causes speech sounds to be distorted. The degree of this distortion can vary greatly from child to child. Some children with ANSD will hear and understand speech in a way that is similar to those with the more common form of sensorineural hearing loss. Other children will experience greater distortion, with speech sounding like a radio that is out of tune. For a simulation of what it might sound like to have ANSD, click on the following link (simulation at the bottom of the page):  http://hesp.ent.uci.edu/drupal/node/13

As unique as this type of hearing loss is for each child, the parents at our coffee night connected with one another more on the commonalities of their children rather than the differences in their stories. Parents shared a range of their children’s hearing levels from close to typical hearing to severe or profound levels.  Some agreed that their children’s hearing seemed sporadic at times – where sometimes words were clear and other times they appeared to be all jumbled. Many found using sign language helpful, and some also connected with each other about additional medical needs their children have.

When your child has ANSD, it can feel like some of the resources you find about deaf/hard of hearing children don’t apply to your situation.  This is one of the reasons a new ANSD information booklet is being created, with input from parents raising kids with ANSD, and other experts in the field.   Until this booklet is ready…here are a few tips and some other resources:

  • Become an advocate for your child.
  • Have your child assessed and monitored regularly. Ask how to develop your own observation skills and how to document those observations. Show your child’s learning in creative ways such as videotaping.
  • Look at your “whole child” to see what other strengths and challenges they have.
  • Create a one-page handout about your child’s hearing that explains their ANSD in simplified terms, to give to their doctors or other professionals.
  • If possible find an Audiologist that is experienced with ANSD.
  • Connect with other parents and share your stories, rather than letting yourself feel isolated.  This ANSD Yahoo Group can be a great resource for this: http://groups.yahoo.com/group/AuditoryNeuropathy/

Other Information Sources:

  • The BCEHP is creating a series of animations that describe the process of hearing and different types of hearing loss, including ANSD. Within these animations will be auditory simulations to give parents an idea of what speech may sound like with different types of hearing loss. Once available, these animations will be located here:

http://www.phsa.ca/our-services/programs-services/bc-early-hearing-program/understanding-hearing-loss/about-hearing-loss

Update: The ANSD booklet is now available at the following link:  http://www.phsa.ca/bc-early-hearing/Documents/ANSD%20Information%20for%20BC%20Families.pdf

  • Communication Considerations A to Z™ AUDITORY NEUROPATHY

http://www.handsandvoices.org/comcon/articles/aud_neuropathy.htm

  • Hearing Moments: Life with Auditory Neuropathy

http://www.handsandvoices.org/articles/fam_perspectives/aud_neuropathy.html

  • BOYS TOWN National Research Hospital

http://www.babyhearing.org/hearingamplification/causes/neuropathy.asp

  • FamilyDoctor.org

http://kidshealth.org/PageManager.jsp?dn=familydoctor&lic=44&cat_id=192&article_set=61053#

 

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Parent Coffee Night- April 27th

Please join us for our next coffee night on Monday, April 27th, 2015!

parent coffee

We hope you can join us to:

  • Get to know other parents of kids with hearing loss
  • Share ideas that support your deaf or hard of hearing child…or just come to listen
  • Have a night off with warm drinks, yummy treats and good conversation

WHEN: 7:30 – 9:00pm

WHERE: #27-7488 Southwynde Ave., Burnaby
(Look for the blue & orange balloons)

CONTACT: Kim Shauer at kshauer@cw.bc.ca to RSVP or with any questions.

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My Message to Parents

by Rosalind Ho 

I was born prematurely, in the middle of a prairie snowstorm. When I was 8 months old, I was identified with a severe to profound bilateral hearing loss as well as a delay in my motor skill development. I was fitted with hearing aids shortly after my diagnosis, and my parents enrolled me in a family-centered intervention program right away. My parents also learned how to communicate with me using both sign language and spoken English.

Our family received a lot of support from the intervention program, as well as from the parent group and other resources that the program provided, such as books and videos. An Infant Development Program worker visited our home once a month to help me develop my fine motor skills. I also attended regular physiotherapy sessions for the first few years of my life. My parents were very grateful for all the help we received from so many professionals. As an adult, I also really appreciate how much my parents did to get so much support for me so that I could have the best possible start to life.

When I was 3 years old, I lost the rest of my hearing. After much thought and discussions with professionals and other parents who had children with cochlear implants, my parents opted for a cochlear implant for me, which I received just before I turned 4. At that time, children would be given only one cochlear implant (CI). When I was almost 18 years old, I was re-implanted with a new CI device on the same ear, and then received another CI on the other ear a few months later. Now my cochlear implants are a part of me that my family doesn’t even notice.

I was enrolled in the BC School for the Deaf (BCSD) for elementary and high school, where all classes are taught in American Sign Language (ASL). The BCSD is housed in the same buildings as South Slope Elementary and Burnaby South Secondary. From Grade 3 onwards, I was mainstreamed into classes at South Slope and Burnaby South with an ASL interpreter provided by BCSD. During my high school years, I took some classes with Burnaby South Secondary and some with BCSD.

From the time I was a little girl, I have loved to read and to learn more about the world. I was fast-tracked through Grades 10 and 11 English, and I studied English Literature 12 in Grade 11, receiving 92% on the Provincial Exam. I also took several Advanced Placement (AP) courses in Grade 12, including AP English (courses offered to high school students that teach material equivalent to first-year university).

I went on to study English Literature at the University of British Columbia (UBC). My family immigrated to Canada from Hong Kong, which used to be a British colony that China ceded to Britain after they lost the Opium Wars in the 1800s. As I have always been fascinated by the language and complex history of Hong Kong, I spent nearly a year there as a university exchange student from UBC to the University of Hong Kong, and then as a co-op intern at an international law firm. 

While still studying at UBC, I first worked at the Burnaby Association for Community Inclusion (BACI) as a co‐op student in the Human Resources department and then as a part-time Human Resources staff member. Since graduating from UBC, I have been working full-time in the BACI Finance department. I am also considering further studies in accounting.

I am passionate about advocacy for young people with hearing loss. I served as the President of the Canadian Hard of Hearing Association’s Young Adults Network (CHHA YAN) for four years. CHHA YAN is a network of young adults with hearing loss across Canada whose mission is to empower young hard of hearing adults to foster active leadership, provide peer support, advocate, and promote awareness of hearing loss in their communities. I then served for two years as the Young Adult Representative, a liaison between CHHA YAN and CHHA National. I am currently the President of the CHHA Vancouver Branch.

When asked what I think are the most important things for new parents to focus upon, my advice is:

  1. The Number One, numero uno, issue is communication. Find a way to communicate with your child as early as possible so that they can develop language. My personal opinion is that it does not matter what communication method(s) your family chooses as long as your child has a solid foundation for language development. It does not matter if you use sign language, spoken English, your native language, or some combination of all of these. Just communicate and connect with your child, in whatever way works best for your family:
  • Involve your child in daily living and communication. When I was small, my mother would talk/sign to me while having me help her with chores such as laundry, food preparation, etc. This helped me to learn basic routines and simple conversations.
  • Take your child out into the community. When I was a toddler, my mother took me to a weekly half‐hour story time at the local library. I would sit on her lap to watch and listen to a librarian read short children’s stories aloud and sing nursery rhymes. She also took me to gym classes for young children at the local recreation centre.
  • Read to your child. Despite my enjoyment of the librarian’s visual storytelling with puppets and expansive gestures, hearing was still a challenge for me. My mother wanted me to learn English while my developing brain was still young enough to readily absorb it, so she arranged to borrow the books or songs to take home so that she could read them aloud and sign to me again every day.
  1. Form a strong support network of family, friends, and professionals. Find people who will listen to you when you need to talk, give you a hand when you need help, and support your choices for your child.
  • Get siblings involved. My older brother often joined in the language games that my interventionists used to encourage me to practice my listening and speaking skills. I also credit much of my interest in reading to him, as he encouraged and bribed me into reading many novels and poems over the years. Nowadays my literary tastes range from Jane Austen to Harry Potter.
  1. Keep an open mind! Keep researching! A mind that is open to alternate communication or learning methods will allow for many more possibilities for your child. Don’t think that you have to do things a certain way just because your child has a hearing loss or because your family did things a certain way in the past. Also, don’t stop once you have made a choice, but keep researching to find out more information about it. Above all, be open and flexible to all possibilities — making one choice now does not mean that you or your child cannot choose to do things a different way as they grow older.
  1. Advocate! Make sure that your child has access to the resources (e.g. interpreters, FM systems, preferential seating, notetakers, etc.) they need to succeed at home, at school, and in the workforce. Also, teach them to have confidence in themselves and to be aware of their own accessibility needs so that they can advocate for themselves as they grow up.

The involvement of parents is essential to the development of a child, and their support and good wishes are deeply felt. One of the proudest moments of my life was the day I walked across the stage to receive my UBC diploma with my parents and brother beaming at me from the audience.

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Greater Than the Sum of Our Parts

By Jen Gow, British Columbia Hands & Voices

Our most recent Annual Parent Workshop on Educational Excellence marked a first for us. Instead of flying solo, British Columbia (BC) Hands & Voices teamed up with partners to co-host the event (Canadian Hard of Hearing Association BC Chapter and Family Network for Deaf Children). The benefits of this were twofold. First, it was a wonderful chance to bring many families together under one roof. Second, it was an opportunity to strengthen relationships with our fellow parent organizations, and further identify our common purpose of supporting and educating families of deaf/hard of hearing children. And, excitingly, it also meant we were able to host not one but two international speakers!

Having just read his most recent book ‘Madness in the Mainstream’, I was excited to learn more from Mark Drolsbaugh. He didn’t disappoint, discussing the idea of finding the least restrictive environment in educational settings for our deaf/hard of hearing children. He spoke about how this will vary not only between people, but also throughout an individual’s education. A fluid perspective on education can accommodate adaptations as a child’s communication strategies change, and/or their social and cultural identity associated with their hearing status develops. I took home the importance of considering my whole child’s needs, not just what her report card might tell me.

Greater Than the Sum of Our Parts

Greater Than the Sum of Our Parts

We were also thrilled to host our very own Janet DesGeorges, co-founder and Executive Director of Hands & Voices. She encouraged us to strive for the best education for our children. Janet’s presentation stressed the importance of supporting our kids’ growth, development and education at school and at home.

We need to think about optimizing accessibility throughout their entire day, not just in the classroom. For example, are our children readily able to communicate on the school bus, when they are lining up for school, during library story time, at recess, at soccer practice? What really stuck with me though was the need to also instill confidence in our children. We need to teach them to be empowered self-advocates so that they can burst through those glass ceilings when they’re reaching for the sky.

An overarching theme of the workshop was to recognize that while the educational needs of children who are deaf/hard of hearing vary greatly, there is also much that unites them. It was this commonality that brought us together with our co- hosts, despite the different age groups that we primarily serve. We along with Guide By Your Side serve children aged five and under, and their families; the other two organizations focus on school-aged children and youth, and their families.

The main speaker presentations addressed our entire audience, but two afternoon breakout sessions honored our diversity to focus on particular groups. This gave a balance between presentations on broad themes that connect us and discussion time on topics applicable to specific groups. Another great source of discussion and information came from our deaf/hard of hearing youth and adult role models, who were on hand during our café style buffet lunch to meet with families.

Very few of us from BC Hands & Voices get the opportunity to attend the annual Hands & Voices Leadership Conference so this was an inspiring way for our members to learn first hand from some highly respected speakers from the US. It was also a great way for us to connect with HQ through Janet, and many of us left feeling better connected.

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Victoria Area Get-Together March

 

VICTORIA Area Get-Together – Thursday March 5th
An opportunity to talk with other families and share information, suggestions, tips…
Toys and games will be set up for the kids to play and give parents the opportunity to chat! Light snacks will be provided.
WHEN: 10am- 12pm

WHERE: Pearkes Building – Playroom
3970 Haro Road, Victoria 
(Corner of Haro & Arbutus at Queen Alexandra Centre) – Look for the orange and blue balloons!

CONTACT: Kim Shauer at kshauer@cw.bc.ca to RSVP by March 2nd or with any questions.

Please feel free to download the original PDF here: Victoria HV GBYS 2015 Event

 

 

Victoria HV GBYS 2015 Event.jpg-page-001

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What’s in a Name?

What’s in a Name?

By Lisa Cable

My daughter is Deaf. Or deaf. Or hard-of-hearing. Or functionally hearing?  Or any other fancy label that I can come up with to call her. She was born with a bilateral mild to moderate loss, and wore two small hearing aids starting at four-months-old. Her hearing loss has progressed due to enlarged vestibular aqueducts (EVA), and she is now in the severe to profound range. Presently, at age four, she wears one (bigger) hearing aid and a cochlear implant. She listens, she speaks and she signs. She also ignores me when she sees fit. She identifies with hearing peers and loves to be around other deaf and hard-of-hearing children. Her many preschool teachers range from hearing to profoundly deaf and unaided to everything in between. She loves them all.

What's in a Name?

What’s in a Name?

 

In the midst of all of this, my struggle has been what to “call” my daughter. How do I introduce her to people so that they understand her abilities? How do I describe her in a way that accurately reflects who she is? The challenge is a moving target most of the time.

In a Deaf culture environment, I often introduce Lily as hard of hearing. At this point in her life, I don’t think she fully identifies with Deaf culture. However, in the “hearing world”, I say that she is deaf. I learned that if I said she was hard of hearing, some people would just yell at her, thinking that was the solution.

My dream world would be to have everyone she meets go through an interactive training session that introduces hearing loss, Deaf culture and my daughter’s unique audiological and communication needs. I suppose people would just think I was weird if I whipped out the PowerPoint as soon as I met them.

Beyond the “labels” specific to hearing loss, there are broader ones. Is Lily disabled? Is she a special needs student? Even though these may be accurate in some sense, I feel that in today’s society there are certain negative connotations attached to these words that I don’t like. I know there are many that don’t even like the term “hearing loss” as the word “loss” implies something positive that is now gone. Some adults point out that they never had a loss; they were born Deaf.

Maybe you’re saying to yourself: why are you worrying about this? Shouldn’t it be your daughter’s decision how she talks about herself?  Absolutely!  However, as a precocious four-year-old, Lily’s identity is wrapped up in whether she wears her Spiderman shoes or her fuzzy pink boots to preschool; she is not concerned with her greater personal identity now.

Maybe that’s the crux of the matter. Maybe I need to take a step back and just let her discover who she is, without labels. I want her to see and hear me talking about her in positive terms so that she can use that as an example for future advocacy. Maybe I need to take away the labels, the titles and whatever else I call her. Because to me, to her dad, to her brother and to everyone that loves her….she is simply Lily.

….she is simply Lily.

….she is simply Lily.

 

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Parent Coffee Night- February

Please join us for our next coffee night on Monday, February 23rd 2015!

parent coffee

We hope you can join us to:

  • Get to know other parents of kids with hearing loss
  • Share ideas that support your deaf or hard of hearing child…or just come to listen
  • Have a night off with warm drinks, yummy treats and good conversation

WHEN: 7:30 – 9:00pm

WHERE: #27-7488 Southwynde Ave., Burnaby
(Look for the blue & orange balloons)

CONTACT: Kim Shauer at kshauer@cw.bc.ca to RSVP or with any questions.

Posted in Events, Families to Families | Comments Off on Parent Coffee Night- February
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