Family Gatherings – “It is what it is…”

By Cecelia Klassen

*This article was first published in Family Network for Deaf Children newsletter in March 2016. It has been updated and republished in BC Hands & Voices with the permission of the author.*

Barbeques, birthday parties, Thanksgiving dinner, graduations, family reunions or any  occasion when families and friends gather together….these busy, fun events bring to the forefront the challenge of achieving fair communication access.  How do we include everyone when large groups gather together, including deaf, hard of hearing and hearing members. It should be simple, right?! 

As the parent of a young deaf adult, I want to share some of my thoughts (and hopefully wisdom!) as you raise your deaf and hard of hearing children.   I have pretty much read it all, listened to stories from deaf and hard of hearing adults feeling left out at family gatherings, and yet I still don’t have any grand solution as to how to navigate family or other group gatherings and have my young adult deaf daughter, Mari, feel fully included all the time.  

Over the years, we’ve experienced lots of awesome family gatherings, but also have had ones that were not so inclusive, where I experienced the “mom pain” – watching my deaf child miss out on conversation, relationship building and ultimately deep family connections.  I can’t always control it and I can’t always fix it but I do try my best, and so does Mari. We have come to embrace the saying: “it is what it is.”   

Family gatherings were so much easier when Mari was young; or, perhaps because she was a child, I was oblivious to the reality.  During her younger years, the cousins all played together, and life was pretty simple. The kids played hide n’ seek, dress-up, capture the flag, board games or just ran around until it was time to eat; eating was just that – eat and run!   Then came the teen years and the inevitable “mom pain” sunk in – talk, talk, talk and MORE talk, coupled with lots of laughter. Mealtimes became the epicenter of conversation. Nothing breaks a mom’s heart more than seeing your child not feeling included.   I tried my very best to make a tough situation better. 

I really believe it’s so important to keep trying. Ultimately, at the core of each of our souls is the need to be valued and included.  Family, friends and community are the foundation for this love and acceptance! Here are some of the tips and tricks that our family have used throughout the years, and still do today.  Nothing is perfect, but I do hope some of these ideas can lead to successful family connections with your deaf or hard of hearing child. Some of these tips will also help model to your family and friends how to bridge communication gaps, as well as how to include a deaf or hard of hearing member in your family or group. 

Here it goes:  My “mom tips” to improving family communication and feeling included at gatherings:

  • If you child uses American Sign Language (ASL), find an interpreter but remember this isn’t a perfect solution, especially if your child or your extended family doesn’t know how to use an interpreter.  If you don’t educate your family, they may think the interpreter is there to be your child’s friend or the single solution to communication access.  Do some homework and educate your family on how to best use the interpreter. Having an interpreter means more access to conversation, but your child still needs everyone to be involved so they feel included.  Being included and feeling included can be two very different things.
  • Invite deaf or hard of hearing friends to join the gathering.  In addition to your child’s deaf or hard of hearing friends, deaf and hard of hearing adults also act as role models to your whole family. They can demonstrate that deaf and hard of hearing children grow up to become adults, and that the communication needs of adults may be different to those of children.  
  • Plan your menu so that you aren’t in the kitchen the whole time; if you are in the kitchen, make sure that another family member is on top of ensuring that your deaf or hard of hearing child is included in the conversation.
  • Place “topic” cards on the table so that you can ask a question that everyone can answer or share their memories:  e.g., “if you could change your name, what new name would you choose?” Or “describe a situation where you were really scared”.  Have individuals take turns sharing their responses. This is great because it encourages turn-taking, and it means that your deaf or hard of hearing family member has the ability to zero in on individuals rather than watching five different conversations happening at the same time.   Hot tip: you get to control the conversation topics a bit.  Sneaky, but it works!
  • Place big posters and pens around the room with a question for everyone to answer: For example, “Name 50 things we are thankful for” or “Name something that happened this year that impacted your life.”   This helps to bring communication to a more equal playing field – by visually sharing memories or thoughts in printed word. Hot tip: this helps with literacy development too, and again a sneaky way to control the conversation topics!
  • Write notes. Have a white “dry erase” board in your kitchen or family room for fast communication.  Make sure you also have paper and pens in several areas around the house, or typing on a computer or iPad can be faster than writing notes back and forth.  There is a great app called “BIG” and it’s perfect for communicating in larger text – especially for grandparents. Kids might feel more comfortable using technology rather than paper and pen. 
  • Use name cards and pre-set the table so that your deaf or hard of hearing child is physically positioned in a good place for optimal communication access.  Hot tip:  This is also good if Uncle Frank never makes any communication effort and has a mustache, making lipreading a nightmare.  Perhaps move him further down the table. Shhhh… don’t let Uncle Frank read this!
  • Ask everyone to bring a funny or interesting photo from years ago.   This is a great visual tool to assist with communication and helps for laughter and sharing of family history too. 
  • Plan a costume theme.  This makes the event fun and creates memories.  When people are in costume they tend to loosen up and seem to gesture more.  Honestly, this really does work! 
  • Plan a funny gift exchange:  e.g., everyone brings something from their home that they no longer want (wrapped up), and put numbers on each item.   Everyone pulls a number and has to open the present – which inevitably leads to lots of laughter. Hot tip:  this doesn’t require a lot of explaining, kills time with a game that is more visually accessible and is perfect to do while you are in the kitchen preparing food.
  • Acquaint you child with family connections.  Prepare in advance by drawing out your family tree so your child knows who will be in attendance and how everyone is connected.  Show photos of who is coming to dinner (find photos on Facebook if necessary). Write out names so your child knows the spelling. Share family background so your child is up to date on what is happening in the family.  Background knowledge is the most important thing that will help your child navigate the communication topics at family gatherings. If there have been family/friend relationship changes (e.g., a divorce, illness or death), and your child is old enough to understand, let them know.  This will avoid any awkward questions at the event. 
  • If someone is planning a speech, dinner prayer or a birthday toast, ask if they can send you the text so you can prepare to interpret or let your child read the text.  This gives you the opportunity to fill in the back story or background information to your child. You may want to prepare them with photos. Hot tip:  also gives you time to learn the sign vocabulary of the words you don’t know.
  • If the TV is on – remember to always have the captioning on.  If your child uses hearing aids, make sure the background music or TV is turned down so that you have an optimum environment for clear person-to-person communication.  
  • Play games that include everyone.  This is super important – especially if the event isn’t in your home.  Volunteer to bring the games. Find games that include your deaf or hard of hearing child.  If you don’t, it’s almost guaranteed that Cousin Jordan will come up with a fast-paced, blindfolded, rhyming game that totally leaves out your child! 
  • Skip the fabric table cloth.  Buy a big roll of brown or white paper.  Put out crayons or felt pens. Everyone will doodle, write notes, play hangman.   The next day you can laugh over what was written! Hot tip:  This is a great fun, easy, rustic decorating idea! 
  • Make your table deaf or hard of hearing friendly for communication.  Rather than a long table where it is impossible to see communication (signing or lipreading), set your table up in a big square or horseshoe shape.  Maybe buffet style is better? Figure out what works for your deaf or hard of hearing child and your family. Think about communication access during the eating together time. 
  • And last but not least, when all else fails … pour yourself a glass of wine and figure out how to improve the next family event! 

It is vitally important to keep communication open with your deaf or hard of hearing child by following up on their feelings, and asking their opinion on what worked for them and what didn’t.  This will create an opportunity for relationship building between yourself and your child, and they will know that you are their ally throughout this journey. Family communication and inclusion won’t always be perfect, so don’t beat yourself up about it but you might find that by trying some creative ideas, your extended family and friends may learn something new and grow from the experience.  For you and your family, embrace and celebrate a deaf and hard of hearing friendly version of “It is what it is” and be proud of it! 

Cecelia

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Finding the Right Fit

By Nicki Horton

JC and wife

Our journey began over 26 years ago when we were blessed with our first child; our beautiful baby boy, JC. At this time, the Early Hearing Screening Program was not in place. Despite multiple visits to the family doctor with concerns about his hearing, JC’s deafness was not diagnosed until he was 11 months old.  At this point he was diagnosed with profound bilateral sensorineural deafness (over 90db in each ear) and bilateral common cavity cochleae. Reeling and emotional from this news, we were handed three pamphlets representing our “choices” as to how to help our little guy develop language. The choices were: auditory-oral, signed English or American Sign Language. Needless to say, we walked out of BC Children’s Hospital overwhelmed, stunned, and confused. We weren’t sure which path to take and, at that time, we were unaware of just how important it would be for JC to have access to a full language.

What we learned quite quickly was that our initial choice was not set in stone. We were new to deafness and had a lot to learn through experience, meeting with professionals, taking classes, networking with other parents of deaf children and getting involved in the deaf community. JC began in an auditory-oral program, (from age 11 months – 2 ½ yrs.) He underwent two “unsuccessful” cochlear implant surgeries at the age of 2. He gained little to no hearing from the implant and the electrode array shifted and eventually caused a chronic ear infection. Having major concerns about his limited language, we enrolled him in a total communication program for preschool, where he began to pick up some sign language. From Kindergarten – grade 6, he attended the BC School for the Deaf, where he was immersed in American Sign Language and his language began to take off and he began to blossom. JC was then mainstreamed with an interpreter in the public system for two years and finally attended a private school with an interpreter for his high school years. We tried it all! In retrospect, what guided our decisions for JC was the need for complete access to language/communication and services so that he could make sense of his world, his feelings and develop his ability to build healthy relationships. This meant that we had to keep an open mind, remain flexible and accept when our choices for JC were not benefiting him. It also meant that we, as a family had to make sure that we were providing a healthy language environment at home. We are so grateful for the ASL training we received. JC’s little sister, Haley, got the best training of all just by being JC’s best buddy growing up. She is still the most ASL fluent of all of the hearing members of our family.

JC played AAAA Basketball throughout high school at Vancouver College, won many awards, including the Principal’s Award in grade 12. All of this was great, but in his eyes, his greatest rewards have been the friendships that he has developed over the years by being involved in Deaf Youth Today. These friendships have sustained him throughout his educational career. In fact, he met his two best friends when he was only three years old at a DYT event. They all graduated from Gallaudet University in Washington, DC together and continue to be great friends to this day. 

Looking back, I vividly remember the anxiety, fear and sadness I felt when I learned that my little boy couldn’t hear. If only I could travel back in time with knowledge I have now and tell my younger self, “let the anxiety, fear and sadness go, there is great joy that lies ahead for your family … embrace the journey!” JC has introduced us to a community that we never would have known, a new language, and enduring friendships that have enriched our lives deeply. Thank you, JC!

 

 

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Growing Up in a Hearing and Deaf Family; Reflections of a Young Deaf Adult

An Interview with Levi Traxler

Levi and his wife in Banff, AB

So tell us a little about yourself. 

I was born in a small town in Ohio, USA. I have hearing parents, and I’m the second of five children. My older sister is hearing, so I was the first Deaf person in my family. Then my next sister and brother were born, also Deaf, and my youngest brother is hearing. My wife is Deaf and uses American Sign Language (ASL), the same as me. We live in British Columbia, and are both Early Childhood Educators.

What types of communication are used in your family?

My siblings and I grew up using total communication/signed English, but we’ve all been changing to ASL over the past few years. For me, the change happened when I went to Gallaudet University to study Early Childhood Education. As adults, my Deaf siblings and I sometimes use our voices when communicating with our mom and dad and extended family, but other than that we prefer “voice off.”   

My oldest sister now tries to use more ASL. My youngest brother doesn’t sign as much, probably because there’s an age gap, and we all moved out while he was still young, but he’s really good at fingerspelling and is signed up to take ASL at high school this year. My parents continue to use voice and signed English – it’s challenging for them to learn ASL as they get older, but we still communicate well. 

Has your self-identity changed or evolved over the years?

When I was growing up, it was always a challenge for me to communicate with other people. I worked hard at speaking and using English, but I never seemed to catch up, and it was frustrating. Even though I wore my hearing aids every day, my hearing and listening skills never improved. It was always the same – I couldn’t hear well, I couldn’t speak well, and it was hard. But when I went to Gallaudet, I went to ASL classes. At first, it was hard for me because I didn’t understand the language.  Signed English is very different from ASL – the former uses ASL signs to follow English word order, but ASL is a unique language with its own grammar that is completely unrelated to English. My eyes got so tired from focusing and watching all day long! But after a little while, I noticed I could learn ASL fast! Every day I could understand people better, express myself better. I felt I learned more ASL in four years than I had learned English my whole life, and by the end my eyes didn’t get tired at all. I had a lot of fun, and got involved in classroom discussions. Before I had been embarrassed to ask questions, because I was the only deaf person in the classroom. But at Gallaudet I felt safe. My confidence really improved. I found my identity. As a child, I didn’t really know what my identity was – I grew up thinking of myself as “hearing impaired.” At Gallaudet I learned I was a Deaf person. 

Are there things your parents did that were particularly helpful?

My parents were always involved, and I think that was so important. Also, they always asked me how I felt about things – about school, friends, if I was happy with my hearing aids. We always had good open communication. They also made our environment very visual. I remember my mom taped pictures with both the English word and the sign on everything around the house. There were pictures on the tables, the chairs, the toilet – I mean everything! I think it helped my hearing family members as well as me, so they could remember the signs. My parents also read with us a lot when we were young. They would sign the books to us, every night. The other thing I really appreciate is that my parents have followed my lead. For example, I noticed recently that my Mom has started to refer to me as Deaf instead of hard of hearing.  

Are you comfortable explaining to people about your access needs?  How did you learn those skills?

When I was younger, my mom always encouraged me to ask for help, but I was shy, and embarrassed. When I went to Gallaudet, I learned that I like to communicate with people and I wanted more access; I realized what I was missing, and I wanted to be included in that. Now I   will ask for captioning at movies and for an interpreter at big family gatherings. These days, I’m very comfortable explaining I’m Deaf when I meet new people. I will write, gesture, or use my phone to communicate if they don’t sign. It really helps that in today’s world everyone has a phone – at a restaurant, for example, I can just pull out my phone and type what I want to say. 

How was it moving from Ohio, USA to British Columbia, Canada?

When my Canadian wife and I decided to get married, I applied for immigration, and discovered that it’s a long process. But, lucky for us, it was all done by email and on paper (no phone calls required!) so it was an easy, smooth process. 

I think there are a lot more Deaf people in the USA than in Canada, which makes sense, given that the population of Canada is so much smaller. There are lots of organizations and support in the USA, whereas I feel it is still growing in Canada. It’s been a bit challenging for me to join into the Deaf community here – Deaf people in BC have grown up together and it’s a very close community, so it’s harder to be fully accepted as a new person. It’s helped a lot that my wife is from BC, though.

What do you enjoy doing in your spare time?  Has your deafness impacted your choices?

When I was young, I loved to play video games because I could easily understand what was going on. There was captioning, and I could control what was happening, so I felt involved. I didn’t like going out to family gatherings, but I enjoyed watching movies, reading books, and drawing. Now I like to socialize more, as I understand and follow conversation more easily. I socialize mostly with Deaf people, but sometimes with hearing people, and that’s fine too. I played football both in my mainstream high school and at Gallaudet. I had a better experience at Gallaudet, as communication was so much easier, but I also realized I’m not really a team sports person. I prefer to watch team sports rather than play. I do enjoy being active and spending time outdoors, though. My wife and I spend a lot of time camping, hiking, and exploring BC.

What are some of the advantages of being Deaf that you experience?

If I wasn’t Deaf, I would never have met my wife! I also feel like it’s strengthened my connection with some of my siblings. I love being a visual person, it’s so cool. Being Deaf has also has taught me to be more open minded about communication and languages – each person is different, and I understand that. 

Do you have advice for parents who are just starting out on the journey of raising a child who is deaf or hard of hearing?

I would say be involved, and always continue to communicate with your child. I have many Deaf friends whose parents don’t sign, or can’t communicate with them, and it’s sad. Stay open to what works best for your particular child or children, and stay involved.

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

  • 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:

     

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

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.

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Halloween Family Play Day 2019

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

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Sevak’s Journey

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.

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Developing Resiliency Through Community Involvement

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.

 

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2019 – Summer Play Days in BC Parks!

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

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A Helpful Tool for People Supporting Your DHH Child

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