Supporting Deaf Children with Multiple Challenges: A Parent Perspective

This article first appeared in the Oxford University Press. Author’s note to readers: This was a difficult article to be asked to write as I have not personally lived the experience as a parent of a deaf child with additional special needs. This article couldn’t have been possible without my dear friends Kathy Caldicott and Sylvia Walterhouse for allowing me to walk alongside them for over 25 years and learn from each of these strong advocates in regard to the expectations of the school system in educating their deaf children. Thank you for being my mentors!

By Cecelia Klassen

 

The Issue

As a parent of a young deaf adult and working with deaf and hard of hearing (DHH) children for the past 20 years, I have seen a significant demographic shift in the children served both educationally and in ‘out of school’ programs. Approximately 40% of DHH children have multiple disabilities (DHHMD), yet this population is often treated as invisible, with very little research, support or understanding. Every parent hopes for and expects the best outcomes for their DHH or DHHMD child, but the journey into deafness and multiple disabilities is usually a foreign experience.

Language is essential to the well-being of every human. As Helen Keller said: “blindness separates people from things, but deafness separates people from people.” How can DHHMD children feel like they belong without language to engage with the people around them? A full thriving language is exponentially more vital for DHHMD children, yet sadly, due to a “trade off” philosophy, we sacrifice the DHHMD child’s language in lieu of multiple disabilities support. In some cases, we focus only on the language needs and ignore all the extra special needs of the DHHMD child. Shouldn’t we be supporting the whole child?

What We Know

All DHHMD children need a full growing language with rich exposure from many language role models. Unfortunately, often weaker language models with limited vocabulary/knowledge of DHH learning needs are assigned to DHHMD children. Without a growing language, DHHMD children are at a greater risk of not feeling a sense of belonging in their families and communities. Language is vital to self-worth and belonging.

DHHMD children often are stuck with a dilemma of insufficient support:

  • Educational interpreters who don’t perform specialized supports for multiple disabilities vs. an educational assistant who isn’t fluent in sign language or doesn’t have the skills to develop a DHHMD child’s spoken language.
  • A Teacher of the Deaf/HH trained for DHH students, but not fully trained to work with multiple disabilities of DHHMD students vs. a Special Education teacher that doesn’t know the language needs of DHHMD students.

The needs of the DHHMD child are complex, yet the system is designed so that the choice is “either/or,” rather than designing a comprehensive program that supports the needs of the whole child.

Language role models and language access shouldn’t be sacrificed in order to provide educational assistants for the DHHMD child’s additional needs. We cannot ignore that DHHMD children need skilled and highly trained individuals to support their additional needs, however, language is a human right and shouldn’t be an afterthought. While some DHHMD children benefit from Augmentative Communication, some are not given a chance to access and develop a full language before it is determined that their lifelong communication method will be an IPad or a Communication Board. Parents and educators should critically evaluate the best communication facilitation for each child.

Why does the system often create a language vs. multiple disability conundrum and not support the whole child? Shouldn’t language be fundamental and multiple disability support be a right for all DHHMD children?

What We Don’t Know

Are we giving DHHMD children the best shot at language or are we lowering the language bar? Will we ever know what potential the DHHMD child may have reached without appropriate interventions/supports for their additional needs? Do we know the long-term ramifications of “trade-off” decisions made for DHHMD children?

Implications

The outcomes for DHHMD children without a full growing language are serious and could lead to their feeling invisible, not belonging, not having enough language to develop quality relationships with friends and family and lacking in community. Professionals should share with the parents, at each step of the journey, the long-term ramifications of impoverished language and the additional support needed for the child’s multiple disabilities. In addition, teachers of the D/HH and special education teachers should collaborate to support the entire child instead of the child’s needs that match the professional’s credentials.

Every DHHMD child needs a parent who is their cheerleader that prepares them for a life filled with meaningful relationships and the ability to reach their full potential without sacrificing language over multiple disabilities. We cannot leave the work to professionals solely to do. This is our role because the relationships we build with our children will last a lifetime. Let language and belonging drive the conversation as we support the whole child.

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Lessons Learned – A Look Back from 30+ Years of Parenting

By Kim Sanderson

Paul and I raised two children.  Ashley, our oldest is hearing, in her 30’s, married to Kris and raising three step-children.  Ashley and Kris just welcomed their first son together, Logan, this year. Cole is profoundly deaf, also in his 30’s.  He’s married to Caitie, a Teacher of the Deaf, and they welcomed their first son, Beckett, who is hearing, last year. Beckett is now signing up a storm and bringing me back to the days we parented his dad. It seems like only yesterday we were at the beginning of our parenting journey – but now we are lucky enough to be enjoying grandparenthood.

I was asked to share some observations from my 30+ years of parenting both a hearing and Deaf child.  I am NO EXPERT and I’ve made my good share of mistakes, but if you’re heading down a similar road now, having had a good head start, I hope my experiences may smooth your path.

Help your child build strong peer relationships & develop a sense of belonging

I think this is one of the most critically important skills any person can master.  However, when your child is deaf it can take more effort to develop strong peer relationships and to gain a strong sense of belonging. In our case, achieving this meant a lot of driving!

We were lucky – Cole was born in 1988 –a year there were a number of deaf children of similar ages born in Metro Vancouver.  But this meant in order to get together we drove, and drove and drove all over the Lower Mainland. We drove him to school every day from South Surrey to Burnaby (K-9), we drove to sleepovers, sports, summer camps and birthday parties. We drove so much so Cole could attend and feel truly one of the gang when he was with his deaf friends. We weren’t alone in this department – other parents of those kids drove equally as much!  


Paul and I were both self employed so we organized and coached sports, we created deaf basketball and baseball teams, and our house welcomed endless sleepovers to ease the burden on other parents driving so much for practices.

In the end, Cole built friendships with a group of deaf peers that far exceeds anything I’ve ever accomplished with friends.  To this day, these kids are extremely tight. They truly understand each other’s challenges and successes, and they care deeply about each other.  Most importantly, they share a first language and an ease of familiarity and shared history.

It is equally important for siblings to find a place where they belong when they have a deaf member in their family. Our hearing daughter Ashley was introduced to a group of siblings of deaf children similar to herself.  Only that group can truly understand the complexities of having a brother or sister who is deaf. They can commiserate about the sacrifices a sibling makes, share a “secret language”, and offer one another a safe place to express frustrations without feeling judged.

Trust me, this isn’t just for your children.  It is so important for you as a parent as well.  No other mom can truly understand what it feels like to watch our child be excluded or misunderstood like another “deaf mom” can.  There is no need to interpret your child’s conversations (which can be exhausting!) when you are all together.  I penned the phrase “deaf mom” long ago to mean my group of mom friends, all of who are hearing and mothers of deaf children. For almost 30 years, we’ve gotten together for wine nights, and dinners, we’ve sat on school committees, attended Hornby Island Family Deaf Camp and other family camps and shared the joys of weddings and the grief of funerals.  These women are so important to me – both while my children were young, and now as well.

So my strongest advice to you is to go out of your way now to find and nurture these relationships at the beginning of your journey.  It will take work, sacrifices and compromises (and lots of driving!) but it truly will provide dividends for all of your life.

Don’t project your crap onto your kids!

This is something that pertains to all your children.  I have had the privilege of many years of therapy, with an amazing therapist. Sadly, a lot of my baggage seemed to manifest about the time I started parenting.  Luckily I recognized that if I was going to overcome the struggles I faced growing up and be the best parent I could be, I needed counseling.

I remember one example where something I learned at therapy greatly benefited my experience as a mom.  I had taken both children to a Christmas concert at a local theatre. Cole was about two – and a rambunctious, athletic boy!  Ashley was three and loved dress-up, singing and theatre. While waiting in line, someone in the theatre company noticed Cole was deaf.  They came up to talk and focused solely on Cole, which happened far too often. They exclaimed, “I know the signs for “We wish you a merry Christmas” and when we perform that song tonight, I’ll sign it on stage!”  Quite an honour I thought!

During the performance Ashley was mesmerized and delighted.  Cole, not so much so! He climbed over and under the seats, vocalized loudly, and was bored out of his mind.  Feeling humiliated, I removed them from the theatre and scrambled home before we could see them perform the song with sign language.  During the entire drive I sobbed. “Poor Cole.  He missed out on that performance and will miss out on so much in life.  How sad his life will be – as a deaf child – excluded and isolated.”  It was overwhelmingly devastating to me.  

During my next counseling session, I recapped the experience and my feelings.  My therapist asked, “Did Cole look sad during the performance’?  “Did he look like he was missing out”?  I replied, “No, he looked bored.”  She responded, “Do you think you could have possibly been projecting those feelings onto him and this situation?  It sounds like he a typical boy, that isn’t too keen on theatre and singing, and was bored.”  This was completely true!  He wasn’t sad and lonely and left out.  Right there and then I thought “Be careful Kim, be very, very careful not to project my feelings of sadness or loneliness growing up, or any other feelings that are mine, onto my children.”  This was a GREAT lesson, one I’ve used so often!

Our children will have enough of their own baggage to carry around without piling on our old stuff too!

Reject pity

One thing you may experience is other people’s pity for your deaf child.  It comes in many shapes and forms, and I would encourage you to annihilate it when it rears its head!  Pity isn’t going to be of any benefit to anyone on this journey. So often, people think they are being nice or helpful by pitying your child.  In my opinion, if you want to raise a successful person, communicate strongly there is no need for them to grow up believing they are deserving of pity.  They simply can’t hear – period!

Long ago, I took Ashley and Cole to the corner store/gas station.  I gave them each a loonie to get a treat while I put gas in the car.  They each came out with treats and Cole was proudly holding an extra loonie.  Ashley informed me that a man inside gave Cole a loonie – and didn’t give her any!!  My blood was boiling. Cole stubbornly turned over his money, and I marched over to the man’s car and signed and voiced, “Did you give my son $1?” He smiled and said, “Yes”, proud of his recognized “compassion”.  I handed it back to him and said, “How would you feel if I gave one of your children money? Don’t give my son money please.”  The man was now embarrassed.  I ensured that both my children could view this entire exchange.  What message does it give Cole to expect handouts? What message does it give his sister?  Neither of them require handouts – then or now in life.

Forgive yourself for your mistakes

You will make mistakes, possibly some big ones, some public ones perhaps.  Some will haunt you for years. Others will cause you embarrassment. This is true of all parenting, but it is magnified when you are entering an area that isn’t familiar such as deafness or hearing loss.

I made many mistakes. My biggest mistake is that our hearing daughter, to this day, feels as though she got “less than” our deaf son growing up.  She felt scarred. I knew it was an issue faced by the siblings of children with a difference – that the focus on one child could negatively impact the other.  I was aware and I thought I had it under control. I was trying my best. But when Ashley was in her late teens, she started to verbalize how angry she was. She felt second to Cole, she felt she didn’t fit in our family.  She angrily shared her painful experiences and expressed her negative feelings towards all of us, but in honesty, mostly towards me.

Parenting is the most important thing in my life. I really wanted to do a great job and it hurts deeply to know that I didn’t do as good a job as I should have or thought I was doing. It took me a long time to admit to myself and to her that I made mistakes and that I’m so very sorry she didn’t get what she needed from us – that her sense of self and belonging was impaired.  Through much listening and many discussions, things have improved – but I do believe Ashley will live with some scars. Today Ashley and I are extremely close – I can’t go back and change the past, but I can ensure that my grandbabies feel equally loved. In the words of Maya Angelou “When you know better, do better.” I believe I now know better.

Although it may not feel like it every day, you are entering a really special and memorable time of your life – having a deaf or hard of hearing child is truly going to enrich your experience. I hope there are slivers in this article that will help you on your journey. Parenting is something I consider the biggest privilege and honor of a person’s life and there is nothing I have enjoyed more. MOST IMPORTANTLY – Do take time to cherish your children, all your children.  Don’t panic and don’t worry too much. It honestly is going to turn out great. In fact, it just might be amazing!

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Deaf Gain – Another Perspective

Author: Rabab Elbaharia

The first time I heard the expression “Deaf Gain” I did not understand it. When I asked various people to help explain the phrase, I received answers such as “you can talk while your mouth is full by using your hands,” or “you can chat from a distance in a very loud room”.  Deaf gain is a term to counter the idea of being deaf as a ‘loss’. Instead, there can be many benefits to deafness such as improved visual abilities and also important contributions to society in different fields (science, sports, medicine, arts etc.)

Today, when I reflect on my family, I find the deaf gain expression very much resonates. We are a new family of immigrants and 2018 marks our third year in Canada. My daughter Salma was born with left microtia and moderate to severe deafness on the left side.

Our first deaf gain experience was probably our connection to the Guide By Your Side program (GBYS). As a mom exploring all the mixed feelings that came with the news of Salma’s hearing difference, I was very happy to learn about the program and that I would be connected to a parent of a child with a similar hearing difference. With the first call I received from our Parent Guide, I felt security in knowing we wouldn’t be navigating this new situation alone.

More blessings arrived as we started early intervention services. We loved going to the early intervention agency which was a home away from home to us. From early on, our family has been involved in many of the programs offered through the centre, and not only did our involvement help our hard of hearing daughter, it helped the whole family to feel connected to the new community we had chosen to live in.

Being new to Canada with very limited friends and no family members around, I can say that our involvement in the programs and activities has really protected us from experiencing the social isolation that can come with being immigrants. It gave us an invaluable chance to connect physically and emotionally with other parents who we consider today as true friends. With our involvement came the opportunity for us to get to know the deaf/hard of hearing community and to see how amazing a deaf person can be in every aspect. As a mother of a daughter with single side deafness or unilateral hearing, I had always asked myself “what if she loses her hearing on the other side?”. Now I am not particularly concerned after getting to know how capable a deaf person can be.

In regards to deaf gain, I also must mention the number of activities and positive experiences that we as a family now look forward to every year, such as the Hornby island family camp, three days of fun filled activities every August (Mingle and Play), and lots of gatherings, outings, and picnics throughout the year.  These mean a lot to us as a new family trying to build connections with our new community and create that very important feeling of belonging.

Although it may sound funny, I have to say attending the groups and activities with Salma were ice breaking opportunities. They allowed me to test my language, feel that I am safe, understand people around me and be understood.

The deaf gain is not only a blessing received by a person who is deaf; in our case it was an enormous benefit that extended to include my whole family.

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Halloween Family Play Day 2018

Come out and join us for our First Halloween Family Play Day!

 

Sunday October 28th, 2018

Thunderbird Community Centre
2311 Cassiar St, Vancouver BC, V5M 3X3

2pm-3pm (Play Gym & Bouncy Castle)
3pm-4pm (Costume Parade & Activities)

Come and get together with other families of deaf/hard of hearing children for a Halloween themed fun time! Bring your little one in costume & don’t forget socks for the bouncy castle, your own snack and a water bottle.

Parents are responsible for their own children at these events.

This is a FREE event, RSVP not required.
Donations gratefully accepted.

ASL Interpreter will be present.

 

Click below for the pdf flyer to share!

Halloween Family Play Day 10.2018

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From Swimming to Swan Lake – Language and Learning Go Hand in Hand

By Brianne Braun

Whether your child is deaf, hard of hearing, or hearing, chances are they will be involved in recreational programs at some point in their childhood. For our American Sign Language (ASL) using kids, we must ensure that they have access to those same opportunities by requesting, and sometimes insisting, that a Registered Sign Language Interpreter (RSLI) be provided.

Our oldest child, Argyle, is hearing. We started parent & tot swimming lessons with him when he was just a baby and he has been enrolled in various Recreation Surrey programs ever since. When our daughter Aurelia came along, our plan to sign her up for swimming lessons and other Recreation Surrey programs didn’t change just because she happened to be born deaf.

So in early 2016, I asked our local pool to provide a RSLI for Aurelia’s parent & tot swimming lessons, and also encouraged them to create a class specifically for Deaf and hard of hearing kids. I was connected with one of the City of Surrey’s Accessibility & Inclusion workers and was thrilled to learn that the City of Surrey was willing to provide interpreting services as part of a new pilot program. That was over two years ago now and our group has expanded as new families have joined and the kids in our original parent & tot class graduated to independent lessons. Although we called Aurelia “the barnacle” when she first started swimming lessons, because she often refused to let go of Dan or I, her Saturday morning swimming lesson with her Deaf and hard of hearing friends is now one of the highlights of her week.

Aurelia also loves to dance. Countless times I would grab my ear plugs then crank the music up for afternoon dance parties, so I signed the two of us up for Creative Dance Moves, a parent participation class offered by Recreation Surrey. We did this for two seasons, with me trying to juggle between the roles of both parent and interpreter. When the lesson was over, boys and girls would start arriving for the next class, Ballet Level 1, which was not parent participation. Aurelia always lingered to watch and when she started practicing ballet moves on her own at home, I knew what to register her for next.

As ASL is Aurelia’s first language, she became accustomed to using interpreters from a young age, but usually alongside her father, who is also Deaf, or, like the swimming lessons, as part of a larger group of Deaf and hard of hearing children. This would be her first time being the only Deaf participant, with no one except the interpreter knowing any ASL. I have to admit I was a little apprehensive, but I once again reached out to the Accessibility & Inclusion folks at the City of Surrey and requested a RSLI for Aurelia’s upcoming ballet class. It was as simple as sending an email and receiving a prompt reply stating that an interpreting agency had been contacted and that I would receive confirmation soon.

On the first day of ballet, Aurelia met the interpreter and then immediately told me to “go sit on the bench with the other moms” while she turned and joined her classmates. To see that level of confidence in my three year old, I can’t tell you how proud I was in that moment. Having access through the interpreter, I watched her learn, hone her dance skills, and develop friendships with the other children. Aurelia and I are both looking forward to this fall when she will resume ballet once again. I would like to take this opportunity to thank the City of Surrey and Recreation Surrey for their ongoing commitment to ensuring that their programs and services are accessible to even the very youngest members of the Deaf community.

Whether ASL is your child’s first language, or if they prefer to use ASL for some or all of their communication in group settings/challenging listening environments, please consider requesting a RSLI for your child. And if someone tells you that it can’t be done, don’t take no for an answer. For our Deaf and hard of hearing children, having full language access makes a world of difference.

To request a Registered Sign Language Interpreter (RSLI) for your child’s Recreation Surrey program, please contact Ross MacDonald – Community Services Assistant. Phone: 604.502.6321, Fax: 604.502.6315, Email: rmacdonald (at) surrey.ca

If you need help with advocating for services in your local community, please feel free to connect with Dan and I, we are happy to offer our support.

Email: bcdhhkids (at) gmail.com

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Parent & Child Groups Fall 2018-2019

BC Family Hearing Resource Society is hosting many groups next fall! These groups and events are open to all families receiving services from any of the three Early Intervention Agencies, (BCFHRS, CHSCBC & DCS). Check the PDF and be sure to register with your closest centre.

Or you can download the flyer here: ParentChildFallGroups2018-2019

http://www.bcfamilyhearing.com/families/groups/

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2018 Summer Get-Togethers Around the Province

Summer Play Days in BC Parks!

VICTORIA – PRINCE GEORGE – NEW WESTMINSTER

Come and get together with other families of deaf/hard of hearing children. Bring your own picnic/snacks, lawn chairs/blanket and water gear if you want to get wet! Parents are responsible for their own children at these events. Look for the orange & blue balloons!

Monday, August 13th, Victoria/Saanich area – 3pm-5pm Beckwith Park
857 Beckwith Ave (find us near the water park)

Monday, August 20th, Prince George – 10am-12 noon Lheidli T’enneh Memorial Park – 17th Avenue (find us near the water park)

Tuesday, August 21st , New Westminster – 11am-2pm Grimston Park
1900 Seventh Ave (find us near the wading pool)

RSVP is not required, but please watch our Facebook page
for notice of cancellation if it’s raining.

Visit our Facebook Page & Website:
https://www.facebook.com/handsandvoicesBC
Contact: info@bchandsandvoices.com

Download the flyer here: Summer Get Together Flyer 2018

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Never Mind, It’s Not Important = Never Mind, You’re Not Important

Author: Teresa Kazemir

I was chatting with our adult son recently, reflecting back on his childhood, and the “no never mind” rule came up. I don’t recall who first taught me the “no never mind” rule so unfortunately I can’t give them their due credit, but I have heard several people refer to it over the years, and I have always thought it’s worth passing on to families of young children who are deaf or hard of hearing.

Jesse- age 10

So what is the “no never mind” rule? It is a rule that our family followed very strictly over the years, and it was simply the idea that it was never OK to tell our hard of hearing son “never mind” if he missed something and asked what was said. And to keep things fair, the same rule applied to everyone else in the family. So whether the person said “what?” or “pardon?” or “huh?” or “I didn’t hear you,” the expectation was that the person speaking would repeat what they said. In our family, we used mostly spoken language with some sign support, but this rule is not specific to any particular language or communication approach – it is about having access to what is being communicated from one person to another.

There are several reasons why this rule is so important for children who are deaf or hard of hearing:

Self Esteem

When you tell someone “never mind,” you may think you’re sending the message “never mind, it’s not important.” However, the message that is heard and felt at the other end of that exchange is often “never mind, you’re not important.” We were very intentional about building and preserving our son’s self esteem – we wanted him to know that we thought he deserved to access what was being said just as much as everyone else in our family, and was no less valued. So even if we knew the information was not intended for him or would not be of interest to him, we would repeat what was said, and let him make that decision for himself.

Self-Advocacy

We also wanted our son to learn that he has the right to full access in any situation. When he and his siblings were young, we modelled and reinforced the rule at home. As he got older, that expectation was internalized, and he started telling other people that they couldn’t say “never mind” to him. He reflects back now that he wasn’t necessarily able to explain it well at that time, as to him it was just a rule, but it definitely made him fight for what he missed. “I kind of laugh in hindsight because none of the other kids at school would have known the rule, but I assumed it was a universal thing at that point.”

Incidental Learning/ World Knowledge

We were aware that kids who are deaf or hard of hearing often miss out on opportunities for incidental learning – they don’t have easy access to “overhear” conversations in the same way that most kids with typical hearing do in hearing families, or as signing kids do in families where the first language is ASL. By accessing comments or conversations that are not necessarily intended for them, children gradually acquire something called “world knowledge.” They learn that adults don’t always agree about things, that relatives get sick, that a repair person can be called when the washing machine breaks, that people pay income tax etc. There are so many things that we don’t explicitly teach our children, and they learn simply by being exposed to conversations. So any time our son asked what had been said, as long as it wasn’t private or confidential, we repeated it.

Now, as an adult looking back, Jesse says that rule made a big difference for him. “It really taught me that I was entitled to full access, and as a result made me fight for access when I didn’t have it.” He noted that to this day he gets really indignant when someone tells him “never mind” – which he thinks is a good thing.

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Fun Family Picnic 2018

WHO: BC Hands & Voices, Guide By Your Side, BC 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 16th, 10:30 am to 2:00 pm

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

CONTACT/ RSVP: Registration is required so we know how many people to expect. 
Please register online by June 11th at  www.fndc.ca/familypicnic

Special Note– Families of children with Atresia/ Microtia – let’s meet up at the picnic! Please contact Catherine: ckalchbrenner@cw.bc.ca  who will collect names, and introduce families to one another during the picnic.

 

Click here to see our Picnic Flyer in Traditional Chinese: TC Flyer
or in Simplified Chinese: SC Flyer

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Proposed Changes to BC H&V Bylaws

Notice of special resolution: The board of BC Hands & Voices will be forwarding a special resolution to rescind and replace our current bylaws with an updated version that reflects our new two-tier membership structure. The special resolution will be voted on at the May 7th (2018) board meeting, to be held 7pm – 9pm at Children’s Hearing & Speech Centre of BC (3575 Kaslo St., Vancouver). All eligible BC Hands & Voices voting members are invited to attend. The updated bylaws are available for review here: Proposed Changes to BC Hands & Voices Bylaws

Please RSVP to ckalchbrenner@cw.bc.ca by Saturday May 5th, 2018

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