Halloween Family Play Day 2019

Posted on September 8, 2019 by BC H&V

UPDATE 9.30.2019: Our Halloween Family Play Day Event is now full, if your family has RSVPed and cannot attend please let us know as we will take a few more RSVPs onto a waitlist. Please email ckalchbrenner@cw.bc.ca


Sunday, October 27th, 2019
Thunderbird Community Centre
2311 Cassiar St, Vancouver, BC V5M 3X3

10am-11am (Play Gym & Bouncy Castle)
11am- 12pm (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.

Space is limited so please RSVP by Sunday, October 20th to ckalchbrenner@cw.bc.ca. Please include the number of people attending and age of child/ren.

This is a FREE event, but donations are gratefully accepted.

Please download the flyer here: Halloween Family Play Day 10.2019

Posted in Babies, Events | Comments Off on Halloween Family Play Day 2019

Parenting Workshop Learning, Harmony & Fun: Parenting our Deaf/Hard of Hearing Children

Posted on October 8, 2019 by BC H&V

  • Saturday, November 16, 2019
    9:45 am to 3:00 pm

    BC School for the Deaf – Burnaby South Secondary
    5455 Rumble Street Burnaby, BC

    Download Flyer here: ParentWorkshop2019Flyer

    Register here: https://www.fndc.ca/parentworkshop

    Barbara Desmarais, “The Parenting Coach,” has many years of experience leading parenting courses and workshops, as well as providing one on one parent coaching. Barb’s training in the area of early child education, as well as her personal experience as a parent, fed her passion for the quality of care we provide for our children. Barb and her partner have raised four children, including twin step-sons who are both Deaf, so she can personally relate to our experience raising children who are deaf or hard of hearing.

    Let’s learn together to live in harmony with our kids, to find the fun and reduce our parenting struggles!

    Specific topics will include:

    · Having effective communication with our children

    · Supporting our children’s social needs

    · Being mindful of the needs of our other children

    · Discipline & setting boundaries

    · Thinking about what messages we want to give our children

    · Maintaining life balance when raising a child who is DHH

    Parent Focused: This event is specifically for parents who have deaf/hard of hearing children or youth. Our organizations believe in the value of parent connections – the workshop will include opportunities to share your stories, ask questions, and network with other parents.

    ASL Interpreters & CART captioning will be provided.

    For your Kids

    Childcare and Deaf Youth Today (DYT) Fun Day have limited space & will be provided on a first come, first served basis. Registration is required.

    Babies to Age 5: Onsite childcare for deaf/hard of hearing children and their hearing siblings.

    Ages 5 to 13: DYT FUN DAY! A day of fun activities for deaf hard of hearing child organized by our experienced DYT staff. We hope to have most of the day’s events onsite. DYT values the importance and benefit of sign language. Our staff use ASL in our program*

    *Based on response to DYT programming during past joint workshops, DYT emphasizes that staff may or may not use listening/speaking as a communication tool. This is an individual and personal choice which DYT understands and respects. DYT will provide interpreters so that children new to sign language feel welcomed and encouraged to join the program. This is a great peer/mentoring opportunity for deaf and hard of hearing children in an ASL-rich environment.

  • HOSTED BY PARENT SUPPORT ORGANIZATIONS:

      

    WITH SUPPORT FROM:

     

Posted in Events | Comments Off on Parenting Workshop Learning, Harmony & Fun: Parenting our Deaf/Hard of Hearing Children

Turning Five – A Look Back As Our Daughter Graduates from Early Intervention Services

Posted on September 20, 2019 by BC H&V

By: Rabab Albaharia

My lovely daughter has turned five this year. At this age she has graduated from early intervention services, and after all the graduation excitement and the thrill of starting a new chapter of her life, I thought it would be a good time to stop and look back on our family journey so far.

Looking back, I feel we were lucky and well supported. The fact that she was identified at birth was a blessing. While at that time it was maybe more of a worry and a confusion, I truly wish that I could have seen then what I am seeing today – a happy blooming child that is full of potential. Salma was the first person with a hearing difference whom I had a direct relationship with in my life. I remember holding her for the first time and immediately noticing her smaller, different left ear (she has left microtia). As a mom, I had millions of questions and thoughts racing through my head and heart. Having the phone call with our guide was another tremendous blessing (Guide by your Side is a program where you are matched with another parent of a child of a similar hearing difference to your child). Knowing that there is another parent out there that went through what you are going through and that can say it’s going to be okay was such a comfort.

Out of all the blessings, our enrollment at one of the early intervention service providers was a game changer. Nothing shed the light on assuring the future of our child like getting to meet Deaf and hard of hearing role models. Add to it the warm, kind smiles we were always welcomed with from the centre’s employees, the amazing and varied age appropriate programs, and the opportunity to involve all the family members. Salma’s siblings and extended family were always welcome which played a major role for everyone finding peace with her diagnosis. 

During our family journey, many of Salma’s care providers were truly shining stars. As a mom I owe a big part of any success my daughter achieves in the future to our speech language pathologist (SLP). What a miracle she has created! She started working with Salma when she had so few words that they could be counted on one hand and now Salma is graduating a chatterbox. Our SLP has constantly gone above and beyond our expectations. For example, she visited Salma’s community daycare to observe her and suggest strategies to the teacher to give her the best opportunities, and, she travelled to the children’s hospital to attend our ENT appointment when needed. The time she spent advocating for Salma to ensure that she received what she thought was essential to her progress amazed me. Not to mention her dedication to Salma’s sessions. She is truly passionate about her job and has filled our journey with knowledge and joy. Another shining star is our audiologist who always came up with tailored innovative solutions to accommodate Salma’s small ear.

The thing that helped our family the most was getting involved with the Deaf and hard of hearing community and building relationships with other families of Deaf and hard of hearing children. This gave Salma the chance to grow up seeing many others with a whole spectrum of hearing differences, using different kinds of equipment and adapting using various modes of communication. That allowed her to grow fierce and confident and gave her the invaluable sense of belonging.

Salma is the only child in our neighbourhood, at her preschool, and in our circle of friends and relatives who is using a hearing aid. I cannot imagine how emotionally vulnerable she would be if not for her involvement with the Deaf and hard of hearing community. 

The support we received did not stop there but extended to include many workshops offered to prepare us for the kindergarten transition. The workshops offered by different agencies were very helpful to let us know what to expect and how to support our child and advocate for her.

Again, our SLP was dedicated to help us explore all of Salma’s options from attending a mainstream school to a specialized school and she supported our family decision, one which we could not have made without her help. And as usual, she extended her help to even attend our first IEP (Individualized Education Plan) meeting.

Things have been challenging on occasion, and sometimes juggling between attending our other kids’ events, work, and the commitment to regularly appear for Salma’s appointments and events seemed impossible. However, seeing her progress helped us prioritize her services, and today, I can say that every effort made was really worth it.

They always say what works for your child makes the choice right and reflecting back I would recommend to each family of a child with hearing difference to explore what supports are available in the community and to try to make use of what works for them.

Our professionals said it was hard for them to say goodbye to our family as Salma graduates. Our reply was:  we will definitely keep returning and participating at the different events you hold; our relationship with you is a lifetime partnership.

Posted in Articles, Families to Families, Microtia/ Atresia, Unilateral Hearing Loss | Comments Off on Turning Five – A Look Back As Our Daughter Graduates from Early Intervention Services

Sevak’s Journey

Posted on August 23, 2019 by BC H&V

By: Simrit Judge

My name is Simrit Judge and my son Sevak is 10 years old.  Sevak was born hard of hearing with additional needs. Throughout my pregnancy in Edmonton, we were unaware of any complications.  Doctors did tell us that he was on the smaller side but within the 10th percentile so he just needed to be monitored.  Later, when I was 34 weeks pregnant, we moved to Surrey, British Columbia. I moved here one month ahead of my husband in order for us live with my parents and settle into our new home.  We knew we would have wonderful grandparent support since my mom was a stay at home mom. 

After my first routine ultrasound here I was immediately referred to BC Women’s Hospital (BCWH), where they gave me a more detailed ultrasound and then recommended an amniocentesis.  I was confused because this whole time I thought everything was fine, and now I was dealing with this while my husband was still in Alberta. He was able to travel here and join me right away, and we met with a team of doctors who told us that Sevak was not getting enough oxygen and we should look into inducing his birth.  I even remember a doctor mentioning something like “you’re too far along for an abortion but there are places down south where you can go.” I was so scared, and I didn’t know what we were dealing with! My husband and I chose to induce labour at 37 weeks, and 2 days later Sevak was born at 4 pounds and 9 ounces.

When Sevak was born we discovered he had a rare condition called Congenital Diaphragmatic Hernia (CDH), which means his liver was pushed into his diaphragm causing his right lung to collapse.  I was told 80% of babies born with this have some level of hearing loss. Sevak did not pass the newborn screening test (which, I believe, had just started that year) and we booked another hearing test right away. To be honest though, that was the last thing on my mind.  I just wanted my son to survive through the surgery he needed! After spending 8 weeks in the Neonatal Intensive Care Unit, we finally took our baby home. 

When his audiology appointment confirmed Sevak’s hearing loss, I didn’t know what to do or where to start.  I found it hard to believe; I was the parent who went home and banged pots and pans to see for myself if this was real. Could it be a mistake?  After a few days, the news settled and I realised that this was not something that was going to go away, and I couldn’t ignore it. I knew we needed to start looking into ways to help him.  For us the hearing loss was one more thing we had to manage. Sevak also had kidney disease and feeding issues so we constantly had appointments to support and monitor him in those areas too. It was a lot to manage but we decided as a family that we were going to focus on Sevak and handle each of his needs one at a time.  

Sevak received his hearing aids when he was 4 months old.  I clearly remember when the audiologist put them in Sevak let out a giggle, which I had never heard before! I loved hearing my son laugh at my singing!  We went home that day with the goal that Sevak would wear his hearing aids as much as possible during the day. This was easier said than done since Sevak’s head control was weak, and the hearing aids would fall out when he turned his head while laying down.  When my husband returned from work, I would tell him I put Sevak’s hearing aids back in his ears a thousand times. I truly felt this was not an exaggeration!

Now that he was wearing his hearing aids, we had to face questions about his hearing from our family.  I am really lucky that my parents are very supportive but it wasn’t like that from day one. In the beginning, my mom and dad told me not to worry, that they would pray for Sevak, his hearing would improve as he grows and he would start talking when he was 2 or 3. It would all be fine!  I mean, that would be amazing, but I wanted to face the facts and make sure we got the support we needed for Sevak through early intervention services. 

We really benefitted from attending the baby group at our early intervention centre.  I met so many families, and it was wonderful to hear everyone’s stories and to be able to talk openly with other parents who were going through similar situations.  To this day, I’m still in touch with some of those families. After months went by, I finally sat my parents down and gave them a translated copy of the book My Turn to Learn.  I told them I needed them to read this book to better understand hearing loss rather than assume Sevak’s hearing would improve over time. The next day my parents both were so different; it was like a switch suddenly went on in their heads. They started to put his hearing aids back in after they would fall out.  At family functions, my parents would explain to everyone about Sevak’s hearing. It was such a help, and I was so relieved to have them onboard rather than feel like my husband and I were in this alone. By the time Sevak was 9 months old he was no longer pulling his hearing aids out, and as he grew he would even put his hands on his ears if they came out.  

During this time, Sevak’s feeding was getting worse. He wouldn’t tolerate any textures, he had severe reflux, and he was not gaining weight.  I was making Sevak crème brulee at 9 months old just to get the calories in him! We made the decision to have a g-tube (gastrostomy tube) put in, and within a couple months Sevak was gaining weight like a typical baby boy. 

Fast forward to 2 years old, and Sevak was crawling around and bearing weight to stand against the sofa.  He started to walk along the furniture, he was imitating sounds and was constantly giggling; he was such a happy boy and rarely cried.  Around that time, we all of a sudden noticed him gazing towards light and not making eye contact. After getting his eyes checked, the pediatric ophthalmologist determined that Sevak had an eye condition which showed retinal damage in both eyes. This added another layer to his care as it could not be corrected with glasses, and he had eye surgery on his left side to put in a buckle to prevent his retina from detaching.  Sevak started to receive support through the The Canadian Deafblind Association, (CDBA) which has been very supportive.

When Sevak turned 3 years old, he started attending preschool at our local Child Development Centre. Sevak wasn’t talking but he could understand some simple signs and spoken words.  We were told he would not walk and that we needed a wheel chair accessible van. Despite this, we never gave up and continued to focus on Sevak’s mobility and communication. 

By the time Sevak was 4 years old, we decided to have another child.  We were scared and wondered if our next baby would face similar challenges.  It was a stressful time but we knew the odds were rare to have another child with complex needs.  It felt magical when our baby girl was born. Around that time, Sevak started Kindergarten. It was difficult adjusting to that but we worked with the school and our transition team to make sure we had a good plan in place that included our goals for Sevak. These continued to focus on mobility and communication, and that December Sevak took his first steps at school. I couldn’t believe this!  I quickly packed up my 5 month old and headed to school to see this with my own eyes. It was so exciting to hear him laughing and see him roaming the halls of the school.  Once he learned that he can go where he wants, there was no stopping him. Slowly, he started climbing stairs and using some signs. Things were coming along!  

Sevak is now in grade 5 and has a full time Education Assistant at school.  We still have our challenges but we approach them one component at a time. At age 6, Sevak was diagnosed with autism but there’s nothing we can’t handle. We also found out through genetic testing that Sevak has a gene mutation that causes severe development delay.  This is on top of the CDH and hearing loss that we knew about when he was born. Still, with all of this he is thriving and enjoying life to its fullest. Most importantly, Sevak is a happy boy who loves to go for walks and go swimming. His two sisters love to play with him, and he loves to chase them and try to get his hands on their dress fabric for sensory input. His hearing aids are a part of him now, and he lets us know if the batteries have died and will push the ear moulds in if they come loose.  Writing it down, it’s hard to believe the journey we’ve had but this path has made us the family we are today.

Posted in Articles, Autism, Deaf Plus | Comments Off on Sevak’s Journey

Developing Resiliency Through Community Involvement

Posted on July 27, 2019 by BC H&V

By Nicole Eich

Our daughter Kathleen is 5. She’s a bright spark of a child – funny and engaging and curious. It’s been a joy to watch her grow, discover the world and see her interests develop. When we learned through the newborn hearing screening process that Kathleen was hard of hearing, we worried about what that would mean going forward. How might this change things for her? How would we, as her parents, gain tools and knowledge to be able to support her in whatever ways needed? And, importantly, how would this impact her ability to engage with people and the community?

Our Family

Fortunately, we were connected early on with one of the fantastic service providers in BC for families with deaf and hard of hearing children, and over the past five years we’ve participated in a wide range of programs and events. From early on, we took Kathleen to baby and toddler programs at our early intervention centre. These not only provided a wonderful, safe environment for parents, the programs taught us ways to best support our child’s development, access various resources, handle hearing equipment and learn communication strategies. This early interaction with the centre was vital to us; it made us feel more confident about supporting Kathleen, and we feel very lucky to have had access to programming so specifically geared towards our child’s needs. Plus it was a fun and friendly place to be, and Kathleen always enjoyed our visits.

Since the baby/toddler days, we’ve continued to attend many events for families with children who are deaf and hard of hearing (family picnics, skating, visits to the pumpkin patch, science world and more!). Some of these are run through our early intervention agency but we also make the most of events offered through the other agencies, as well as the parent volunteer organisations. We’ve also joined group swimming lessons that have been available to young deaf/hard of hearing kids in Surrey, and Kathleen has enjoyed her weekly swimming lessons with other deaf/hard of hearing kids. Each year, we look forward to the Family Deaf Camp on Hornby Island run by Family Network for Deaf Children and Deaf Youth Today. All of these have given us the opportunity to connect with other kids and families, and become part of the deaf/hard of hearing ‘world’. 

Hornby Island Deaf Camp

Early on, we learned about the importance of peer connections for the well being of deaf and hard-of-hearing people, even the very young. That’s why it’s very important to us that Kathleen has exposure to and creates relationships with other deaf/hard of hearing kids, that she sees other kids with hearing equipment and that she understands the diverse ways in which we can all communicate with each other. It’s also important to us that we feel connected as parents to other parents of deaf/hard of hearing kids. For these reasons, we’ll continue to build networks and friendships in this community and attend as many programs/events as possible. 

All of this being said, we realized through engaging with these programs and events in the deaf/hard of hearing community, and through many conversations with parents and professionals that there was no reason we should hold Kathleen back from new experiences in our broader community. We want our daughter to feel confident in trying new things so from early on, we took Kathleen to a parent/tot class at a local music school, and then enrolled her in several other music and dance classes at the same school. She’s also played soccer with a local soccer club and she might try another sport this coming summer. We’ve taken her to a range of arts workshops and performances, she’s loved seeing the orchestra and the ballet, and she was recently thrilled to see her first movie at a theatre.

Kathleen at soccer

Before any of these experiences (and before going anywhere new), we do our best to think about the sound environment we’ll be going into, and the challenges that might be involved for our daughter’s communication. Places like pools, theatres or birthday parties can be very noisy, and her access to clear information can drop significantly as a result. The same challenge occurs with distance, as the further away from someone she is, the less she can make out what’s being said. Running around on the soccer field, for example, we could see that she was feeling challenged to hear/follow instructions from the coach. 

We’re still learning how to best navigate these challenges – in advance of a class or team activity, we speak with the instructors if possible. We let them know about our daughter’s situation and ask if they’re okay with helping to make some adaptations. We describe what will be useful for her, such as making sure they’re facing her when giving instructions, speaking clearly, repeating what other kids have said, or being willing to speak to her individually to repeat instructions if she seems to miss something. We also have access to a personal DM system. We’re beginning to use it more frequently in challenging environments, as we notice how it increases her access to what’s being said. As well, we’re in the process of incorporating more American Sign Language into our family so that we have an additional communication option available to us.

Kathleen is at a great age to start advocating for herself. She’s really started to be aware of the fact that her hearing difference means that she doesn’t always have good access, and that it decreases in certain environments/situations. We’re teaching her to notice the times where she could benefit from positioning herself closer or asking someone to repeat what’s been said, or to try and find solutions if something’s not working for her. I’ll never forget the first time I saw her take charge of a situation in this way – we were at a birthday party at a karate school and the instructor had loud music playing in the background. Without prompting, Kathleen went to the teacher and told him the music was too loud for her and asked him to turn it down. It was a wonderful moment to see her self-advocate and a good reminder that kids can start to navigate their own world from an early age with the right support.

Going forward, it will be fascinating to see what sorts of interests and environments and communities Kathleen is drawn towards. Her hearing access has changed and so this might pose new challenges (or not), and as she gets older she’ll be better able to let us know what she finds enjoyable. We know this will be an ongoing journey but hopefully we’ve set her up to be resilient, to not hesitate about trying new things, and to be confident in her abilities no matter what the challenge.

 

Posted in Articles, Families to Families | Comments Off on Developing Resiliency Through Community Involvement

2019 – Summer Play Days in BC Parks!

Posted on July 1, 2019 by BC H&V

Summer Play Days in BC Parks!

KAMLOOPS – KELOWNA – 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!

Friday August 16th KAMLOOPS
10:30am- 12:30pm
Riverside Park 100 Lorne Street, Kamloops, BC (find us near the spray park)

Saturday August 17th KELOWNA
10:30am- 12:30pm
City Park 1600 Abbott Street, Kelowna, BC (find us near the spray park)

Tuesday August 20th NEW WESTMINSTER
11:00am- 2:00pm
Grimston Park 1900 Seventh Ave, New West, BC (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: 2019 Summer Get Together Flyer

Posted in Events | Comments Off on 2019 – Summer Play Days in BC Parks!

A Helpful Tool for People Supporting Your DHH Child

Posted on June 24, 2019 by BC H&V

A note about this article- I’m writing this as a parent, this is just my experience and what’s helped us. It’s not an official Hands & Voices tool. It’s just a template I created because I thought it might be helpful to others.  

Our child is 9 now and we’re deep into elementary school. He attends several extra curricular activities including karate, piano and scouts. Additional to the people who work with him in these activities are, his classroom teacher, Teacher of the Deaf & Hard of Hearing, Speech Language Pathologist and educational tutors. Phew! That’s a lot of people! 

Perhaps your child is younger, so your team may also include Early Interventionists, Audiologists, Occupational Therapists and other medical doctors. Now matter how many people you have on your team, they all share the same goal- helping your child. And all of these people can benefit from knowing how best serve them, how to best help them learn, or even how to best get them to participate in a hearing test. And you are the best voice for your child! You know them best! 🙂 

Sharing important information about our children is, of course, necessary. I have a binder full of important assessments, audiograms and relevant medical reports that I share with new support workers or teachers but sometimes, handing out ALL the information is just too much and doesn’t work in our favour. Sometimes simple is best. 

I made up a single page hand-out about our son that really highlights the important information for those new to working him. I included a picture of him, my partner and I’s contact information, and four main subheadings. 

The feedback I’ve received has been very positive! People appreciate the conciseness of the document and that relevant information is easy to pull out and use. I try to keep copies on hand for any meetings/ beginning of the activity sessions as well as emailing it as a PDF when I am able/ have the person’s email address. 

Link to viewable google doc: https://docs.google.com/document/d/1ch1JJeLIHCuA5a-_4kkQ1EnmyHEZImlupm1lOdt-D8Q/edit?usp=sharing

To edit, be sure to save a copy to your own google drive first. 

Here are the four subheadings explained:

PERSONALITY 

 

  • Bullet points about your child’s personality
  • What motivates & excites him/ her
  • What makes them anxious and how to help in these moments. 
  • Brief suggestions on how to encourage the best in your child

 

EQUIPMENT (if applicable)

  • What and how to help with your child’s hearing & communication equipment 
  • Include details about FM system here

INSIDE THE CLASSROOM

  • Brief comments about to best support your child inside the classroom. (seating placement for example)
  • Any information about ASL interpreters and what they need to be able to give your child the best possible access.

OUTSIDE THE CLASSROOM

  • Comment here about what an outside environment might be like for your child. FM limitations, background noise, etc. 
  • Information about outside time and interpreters
  • What specifically does the caregiver/ educator need to be aware of? 

Important Notes

-Be sure to include a picture! Both for attention (they’re beautiful) and also to help the support person remember who your child is. Some people have many DHH kids on their caseloads.
-try your very best to keep it to one side, one page. Play with the font sizing if you need more room. I feel it’s the best chance to have anyone read it all. 

I hope this template helps! I created it with google docs and the columns work best in google docs, though I’m sure you could edit with any version of MS Office or equivalent. Please feel free to share it too.

Posted in Advocacy, Articles, Families to Families | Comments Off on A Helpful Tool for People Supporting Your DHH Child

Fun Family Picnic 2019

Posted on May 14, 2019 by BC H&V

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 8th, 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

See PDF flyer here>> Fun Family Picnic 2019
Click here to see our Picnic Flyer in Traditional Chinese: 2019 Family Picnic TC
or in Simplified Chinese: 2019 Family Picnic SC

Posted in Uncategorized | Comments Off on Fun Family Picnic 2019

Hearing Loss, ADHD, Autism……Oh My!

Posted on April 25, 2019 by BC H&V

By Lisa Bayko

2008 was an eventful year. Mike and I got engaged, and while planning our wedding we found out that we were expecting our first child, due August 1, 2009. Priorities shifted and marriage preparations were postponed as we started getting ready for our bundle of joy!

We were so excited to have our first baby, and apparently so was the baby, as he couldn’t wait!  Our little boy Travis made his way into the world five weeks early. After a fast delivery with a few complications, Travis was taken straight to the NICU to be cared for, as he needed to be watched and put on some weight before he could come home with us.  Most importantly he needed to be a SUPER HERO under the jaundice lights. (I still have the mask it was just too cute!) Travis was also a very poor eater at first, mainly because he was a preemie.

Travis spent the first three weeks of his life in the NICU. At about 10 days old Travis had his hearing screening done, and we found out that Travis had not passed.  Ok, I thought, maybe it’s just because he is a preemie – he will grow and he will pass, or maybe it’s just fluid in his ears. I didn’t put too much thought into it at that point, as I was more worried about him eating and keeping it down so he could come home.  

After three very long weeks, we were finally able to bring Travis home.  Then at 2 ½ months he had his first ABR and it was confirmed that Travis was hard of hearing. After getting the news from the audiologist, I was alone with with my little monkey in my arms crying. It was a long ride home, looking at my adorable little man, trying to wrap my brain around what was just confirmed. It was a very hard thing to have to tell Mike, as he couldn’t make it to the appointment due to work. There was crying and blame; it was the beginning to our grieving process. It was really unexpected for us, but in retrospect I guess it really shouldn’t have been, considering my older brother has similar hearing levels.  Trying to process the news and still in shock, I got a call from my older brother. I was in tears and expressed my fears that Travis would be teased or have a difficult life, but my brother just kept reassuring me that my son was going to be ok. He reminded me that he has a pretty normal life, even though he had lots of struggles in school. He became a tow truck driver, got married and divorced and now has 2 grown kids. He asked why I was worrying when I know that his life turned out normal just like mine, the only difference being that he needed help to hear. We didn’t treat him any differently, and he was still a big pain-in-my-side older brother, who I wouldn’t change for the world!

We decided to get a second opinion and the results were the same, so Travis was fitted for his first pair of hearing aids at about four months old.  The look on his face when he wore them for the first time was amazing! He could definitely hear my voice! I really wish I would have taken video or photos of the day, as it was a wonderful milestone in Travis’s life that I really wish I captured.  

We went home with our new life tools for Travis, still nervous and still feeling denial because I felt like he could hear me without his hearing aids. I told myself that maybe he would grow out of it or maybe the second opinion was wrong too.  I didn’t yet fully understand that while Travis could hear me with his hearing aids off, he was not getting all the information he needed and he was not hearing certain sounds. It took me a while to really come to terms with his hearing and the feeling that it was my fault, especially since there was hearing loss on my side of the family.

We enrolled at one of the amazing intervention centres. I got to see other babies, toddlers and preschoolers with all kinds of hearing levels and devices, and it really helped to see how all of them where thriving and full of life, just like my little man! We started learning and understanding his hearing loss and also received some new information from a CT scan and genetic testing. The CT scan confirmed enlarged vestibular aqueduct syndrome (EVA or LVA) a structural malformation of the inner ear. Enlargement of this duct is one of the most common inner ear causes associated with hearing loss.

Genetic testing confirmed Pendred syndrome, a genetic disorder that causes early hearing loss in children. It can also affect the thyroid gland. We were advised to have his thyroid monitored and avoid letting Travis hit his head on anything. How do you keep a toddler from falling? We talked about getting him a helmet, but we didn’t want to make him live in a bubble.

Then one morning Travis decided to have a tantrum and throw himself on the floor backwards. He hit his head on the base of a cement column hard and needed stitches. After that we expected a hearing drop but there wasn’t one, so at that point we decided to let him be a regular child. And any fears we had about him hitting his head in sports have been relieved by the fact that Travis is not sporty and doesn’t like the thought of winning and losing. I guess we got lucky on that one!

As a toddler, Travis really loved his early intervention appointments, baby group and being around people. He was very social, meeting most milestones, and was just a very lovable little man, but he could throw a tantrum like you wouldn’t believe! I kept waiting for him to grow out of it, calm down, listen, and follow instructions, but he didn’t. When Travis was four years old, his early interventionist suggested getting our doctor to send a referral to the Sunny Hill Hearing Team. We met with the team and everything seemed to be going well with Travis. At the follow up appointment, though, the doctor noticed Travis smelling everything, and he asked if this was something he did regularly. Well, yes it was, but I hadn’t thought anything of it.

This was my introduction to Autism Spectrum Disorder. We were very lucky to have had the same Doctor from the hearing team perform the autism assessment, as he was trained in both hearing loss and autism. I knew nothing about autism and decided not to “google it” until I really had to. I figured Travis was just a young, stubborn boy and saw nothing wrong with him.

Travis was first diagnosed with ADHD, and prescribed medication and then later got the diagnosis of Autism Spectrum Disorder. A spectrum it is!  Every time we really feel like we are figuring him out he will do a complete 180 on us. He definitely keeps us on our toes and we’re always learning with him. Many people actually don’t believe he is on the spectrum because he has good eye contact and good speech, thanks to many years of early intervention for his hearing.

Travis is now 9 years old he is a very creative young man. He loves to work on stop-motion videos and is very good with technology. He loves swimming and gymnastics. Travis has always been very proud of his hearing aids, and he knows he needs them and relies on them. He is very independent with his hearing aids and can really advocate for himself when it comes to hearing.  He is also a big brother as we’ve had 2 more sons.

We have found the learning curve with ADHD and Autism is on-going, more so now that he is older and getting more aware that his brain is wired differently (autism doesn’t come with a manual!).  We have not had any problems with him being teased, as kids just want to know “what’s that in your ears?” Travis simply replies “they are my hearing aids and they help me to hear!”

 It’s been a crazy journey, with lots of challenges along the way, but Travis is a great kid who adds so much to our family!

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2018 President’s Report

Posted on April 7, 2019 by BC H&V

President’s Report – reflecting on 2018

The Board

  • Lee Johnston (President), Jen Gow (Vice-president), Teresa Kazemir (Past-president; Secretary), and Amy Ho (Treasurer) formed the executive for this past year. Kim Shauer continued to serve as our GBYS Coordinator, and Dan Braun, Rabab Elbaharia, and Joy Santos rounded out our board. I would like to take this opportunity to thank all of our board members for the donation of their time over the past year.
  • The board would also like to extend our thanks to Catherine Kalchbrenner for her administrative support.
  • Jenny Hatton stepped down from the board this year although she will continue to volunteer at some of our events. We thank her for her years of service to BC Hands & Voices (BC H&V).

Past Year’s Accomplishments
Board Meetings:

March 5, 2018 – AGM
Monthly board meetings: April, May, June (exec only), September, October, November, December (exec only) & January

Committees:

  • Council of Service Providers (meet 3 X per year)
  • Coalition of Parent Organizations (BC H&V, CHHA, and FNDC)
  • BCEHP’s DHH Advisory Committee

Presentations:

  • In Oct 2018, BC H&V GBYS Coordinator Kim presented on BC Hands & Voices events and the GBYS program to Early Interventionists who provide direct services to deaf/hard of hearing babies around the province identified through BCEHP newborn screening program. Her talk focused on parents’ feedback received through a Needs Assessment conducted by H&V Headquarters that parents of d/hh children 0-6 years old want parent-to-parent support and DHH role model support to be offered at various points in their journey, not only at the beginning as they are ready at different times. Service providers can re-offer GBYS support & encourage benefits of connecting with BC H&V.   She also spoke about our events happening in different areas of the province and parent evenings offered via remote conferencing services to parents living in outreach areas or those who are unable to attend in person for other reasons.

Participation with Hands & Voices HQ:

  • Kim and Amy travelled to Wyoming for the Leadership conference in Sept 2018.
  • Teresa attended three board meetings and served as secretary for the HQ board. She stepped down from the HQ board at the end of 2018, after serving for 8 years.
  • Lee participated in three chapter network calls
  • Lee and Kim participated in three Canadian regional calls (Kim continues to be the Regional Coordinator for Canada).

Events:

Event Date Topic # of attendees TOTAL
2018
Coffee Night Jan 29 Use of Technology for DHH individuals 18
AGM/ Parent Evening March 5 Open Topic 12
Family Play Day (bouncy castle) May 5 Family Play Day (bouncy castle) 49
Fun Family Picnic June 16 Family Picnic 245
Summer Get-Together- Victoria Aug 13 5
Summer Get-Together- New Westminster Aug 20 21
Summer Get-Together- Prince George Aug 21 8
Halloween Play Day Oct 28 66
424

Notes:

  • We continued in our tradition of partnering with Family Community Services, Family Network for Deaf Children and Canadian Hard of Hearing Parents’ Branch to host our sixth annual family picnic in June, which attracted nearly 250 people. We look forward to co-hosting this year’s picnic!  
  • We were turned down for our gaming grant application but have placed an appeal. The application was a tremendous amount of work and we hope the groundwork will help us be successful in future applications. Thank you to Jen for taking the lead on that project.
  • The book committee continues to work on our collection of local stories. They have been working with Deaf consultants to identify articles for inclusion and gaps that will need to be addressed. Thank you to the committee for the many hours put into this project.
  • We updated our bylaws and registered according to the Province’s New Society Act.

Newsletters and Communication:

  • Monthly electronic newsletters sent (with one original article most months (10/12), as well as an article from our archives, a helpful link, a featured board member or parent guide, and news about local events).
  • E-newsletter subscribers went up by 15.24% (223 up to 257)
  • Facebook likes to our page increased by 13.55% (273 up to 310)
  • Quarterly submissions to the H&V Communicator.
  • Our BC “insert” mailed out to paid members with Communicators 4 times per year.

Membership

  • Our number of eligible voting members remains strong (257).
  • Premier memberships (those who pay a nominal fee to receive the quarterly Hands & Voices newspaper) went up by 9.52% (21 up to 23).

Families served:

  • BC H&V parents/board members provided consultation and feedback to new materials being developed for parents by the BC Early Hearing Program, including GBYS info sheet, video about GBYS in ASL with captioning,  and Parent Information Guide (replacing the large parent binder previously provided).  – these will all go onto the new BCEHP website currently under revision.
  • Approx. 80 families were referred to the GBYS program in 2018   

We would not have been able to accomplish all that we have over the past year without donations and grants. We want to recognize and thank the following organizations for their funding and in-kind support:

  • The BC Early Hearing Program for the use of the conference line, and support for our events & activities, as well as housing & funding our GBYS program.
  • Children’s Hearing & Speech Centre of BC, BC Family Hearing Resource Centre, the Well-Being Program, BC School for the Deaf, Deaf Children’s Society and PDHHS for the use of their facilities for our meetings and coffee nights and/or assistance in promoting our events to their staff and clients.
  • Thank you to all of those who have made individual donations to BC Hands & Voices.
  • A special thank you to our parent volunteers: Leigh Chan took on role of organizing volunteers at the big picnic; Katherine Foo assisted with registration & food at picnic; Nicole Eich for her help with editing and newsletter assistance.
Posted in Administration | Comments Off on 2018 President’s Report