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!
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.
To edit, be sure to save a copy to your own google drive first.
Here are the four subheadings explained:
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?
-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.
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.
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!
Posted in Uncategorized | Comments Off on Hearing Loss, ADHD, Autism……Oh My!
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
Council of Service Providers (meet 3 X per year)
Coalition of Parent Organizations (BC H&V, CHHA, and FNDC)
BCEHP’s DHH Advisory Committee
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).
# of attendees TOTAL
Use of Technology for DHH individuals
AGM/ Parent Evening
Family Play Day (bouncy castle)
Family Play Day (bouncy castle)
Fun Family Picnic
Summer Get-Together- Victoria
Summer Get-Together- New Westminster
Summer Get-Together- Prince George
Halloween Play Day
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.
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).
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.
Thursday May 16th 7:00 – 9:00pm
Location: Children’s Hearing & Speech, 3575 Kaslo St, Vancouver – Free Parking
*Available for families living around the province via teleconference/ video-conference*
Join us at a special parent coffee night about Microtia/Atresia. We are pleased to have Jesse Kazemir and Catherine Kalchbrenner (a Parent Guide with the Guide By Your Side Program) join us this evening. Jesse is an SFU graduate with bilateral microtia/atresia who wears bilateral BAHS (Bone Anchored Hearing Systems, also known as BAHAs, Pontos & Soft-band Hearing Aids) and Catherine has an 8 year old with right-sided microtia/atresia. Do you have questions about how to talk to others about your child? Or perhaps you have questions about BAHS? Come and join us for an informal coffee night where you can ask questions or share experiences with other parents.
Please RSVP to Catherine at firstname.lastname@example.org
Please RSVP by May 10th and please indicate if you will be joining us online or in person.
We are fortunate to live in a province where there is a lot of support for families with young deaf and hard of hearing children. In fact, there is so much support, it can be a little overwhelming for parents when they first learn about all of the services that are available to them. With that in mind, I compiled some of that information and created the Quick Reference Guide.
The first page of the Quick Reference Guide shows the provincial service providers and parent-run organizations, with a flowchart of how the three Early Intervention Agencies fit into the big picture. *Please note: Some families may also have access to additional resources in their home community.
**Be sure to click on each thumbnail to enlarge the text or see the pdf link at the bottom of the article. **
Although families must select one Early Intervention Agency to be their home agency, the “shared services” listed on the second and third page of the Quick Reference Guide are open to all families with young deaf and hard of hearing children. Parents may choose to take advantage of as many programs as they like, accessing services through one, two, or even all three of the Early Intervention Agencies at the same time. To learn more about additional services that Early Intervention Agencies have to offer, please contact them directly.
I hope you will find the Quick Reference Guide useful as you set off on your amazing journey of raising a deaf or hard of hearing child!
Location: Sunny Hill Health Centre, 3644 Slocan Street, Vancouver – Free Parking *Available for families living around the province via teleconference/ video-conference*
Join us for a coffee night with special guests Tara Dyck & Bowen Tang, Deaf/Hard of Hearing (D/HH) Guides with the Hands & Voices Guide By Your Side Program.
Tara & Bowen will share some of their experiences growing up as well as: – tips on how to develop self-confidence in your child from an early age – what it is like using various technologies in everyday life – their experiences travelling and growing up learning a variety of signed & spoken languages – how they have developed meaningful friendships and family relationships
Please RSVP to Catherine at email@example.com Please RSVP by April 1stand please indicate if you will be joining us online or in person.
“What does a ladybug eat?” “Why can it fly?” “Why does it crawl like this?” “Will its parents cry when they can’t find it?”
These were some of the questions that came flying at me from my 6-year-old daughter Veronica after we found a ladybug crawling on a cob of corn and put it into a glass jar. It was getting close to her bedtime so I suggested that she get her older brother to help her search for answers on the internet the next day.
Three years ago, I would never have imagined Veronica being able to articulate and carry on such a conversation with me.
Veronica was born in May 2012. She passed the newborn hearing screening test for her right ear but not the left ear while she was in the hospital. Two weeks later, we went for a follow-up hearing test and were told that she had passed the test.
I put Veronica in an in-home daycare when I went back to work full-time after my maternity leave was over. Then, when Veronica was a little over two years old, the in-home daycare worker told me that Veronica did not respond when the worker called her from behind. She also noticed that although she played well with other children, she didn’t always respond to them and sometimes ignored them.
At the time, I did not associate such behaviour to her hearing. She was speaking only one to three words at the time, so I thought she was just a late speaker. In any case, I took her to see our family doctor, and asked for a hearing test.
At the appointment, the family doctor took out a pair of rubber gloves. He first blew into the gloves, then walked behind Veronica on her right, and squeezed the glove, which produced a screechy sound. Veronica turned to the right. He then moved to her left side and did the same action. Veronica then turned to the left. The doctor then told me that Veronica was fine; no hearing test would be needed.
Fine, I told myself. There was no history of hearing loss in our family. Why should I think that Veronica’s behaviour was related to her hearing? The doctor said she was fine, so there was no need to worry.
About three months later, the daycare worker again expressed her concern to me that Veronica was not responding or developing language in the same way as the the other children. And she encouraged me to ask for more testing. I took Veronica back to the family doctor. Once again, the doctor made a loud noise behind Veronica, and once again she responded. The doctor repeated the prognosis that her hearing was fine and no hearing test was needed.
A few months went by, and Veronica was nearly three. When I told the in-home daycare centre that I was planning to switch Veronica to a community daycare centre, the worker expressed her concern again, and suggested I take Veronica for a speech/language assessment at the local health clinic; she had learned from a radio interview that assessment and speech therapy would be free for a child under five years old.
I followed her suggestion and took Veronica to see a speech language pathologist (SLP) at our local health clinic. The SLP referred Veronica for a hearing test right away, and we got an appointment two months later. The audiologist, who also speaks my native language, showed me the hearing test results, and told me that Veronica needed to wear hearing aids to help her hear and to learn to speak.
The news was a great shock to me! I was crying as the audiologist was explaining the results to me. I did not absorb much of what she said except that Veronica needed to wear hearing aids.
No, this could not be true! I was determined to get a second opinion, perhaps unconsciously thinking that it might change the diagnosis. I immediately purchased air tickets for us to my home country so that we could see an Ear Nose and Throat (ENT) doctor there. Veronica had a sedated ABR at the hospital and her hearing loss was confirmed. She would indeed need hearing aids to help her hear.
Struggle with Hearing Aids
Veronica was already three years old when we put hearing aids on her. It was a struggle every day to keep them on. First, she had a skin allergy to the material of the ear molds. She would scratch her ear so badly that she would get an infection. The ENT doctor at BC Children’s Hospital then recommended switching to a different material for the ear mold, which solved the skin allergy problem.
Veronica still resisted wearing her hearing aids. She took them out, hid them, or threw them on the floor and stepped on them. One time when we were out, she threw such a temper tantrum that she pulled out the hearing aids and threw them into the street while a car was passing by. I was frantic! What if the car ran over the hearing aids and crushed them? After the car left, my son and I searched for the hearing aids and found them in the middle of the road. Thank god the hearing aids were not damaged!
I wasn’t able to control my emotions in that moment. I scolded Veronica and yelled at her that she almost damaged her hearing aids and then she would have had nothing to help her hear. Then we both burst into tears and hugged each other while we were crying, right there in the middle of the street.
I went to the audiologist to seek help. The audiologist was very helpful and patient. She suggested the following strategies to me:
Start by putting on the hearing aids in a quiet environment so that sounds will not be too loud all of a sudden.
The sound of flushing the toilet can be unpleasant to the aided ears. So avoid flushing the toilet or having the child nearby when she has just put her hearing aids on.
The sound of moving furniture such as chairs on a hard floor can also be unpleasant. So avoid moving furniture when the child is nearby.
The noise of cooking in the kitchen and the ventilation fan can also be unpleasant to the child. Try not to have the child in the kitchen when she has just put her aids on.
When the child is watching TV with hearing aids on, start with a low volume, and gradually turn it up to a level that is comfortable for the child.
Gradually, Veronica got used to wearing her hearing aids. Eventually, she even refused to take them off when she went to bed. Everything was going so well!
A year later, Veronica lost her hearing in one ear, and we decided to get a cochlear implant for her. It was a challenging few months as she got used to the implant. She cried for two months or so and refused to go to school because she said the teacher sounded too loud, and she did not like to hear the teacher’s voice.
Again, I got help from the audiologist. The BC Children’s Hospital audiologist fine-tuned the programs on the implant. She also suggested that when first putting on the sound processor, set the volume at a low level for two minutes, then gradually turn up the volume.
The teacher at the specialized preschool was also very patient and helpful in getting Veronica used to the cochlear implant. She told Veronica to raise her hand anytime she found the teacher’s voice too loud, and she would lower her voice so that it would be comfortable for Veronica.
Support for Parents
When Veronica‘s hearing loss was confirmed in mid-2015, I was very sad and confused. I didn’t know what to do. I felt like a small boat drifting on the ocean, a boat that might sink at any time. I was grateful that I was connected with a Guide By Your Side Parent Guide, who also speaks my native language. She is caring, supportive and knowledgeable. She listened to me, shared family stories and talked over different options with me. She also sent me relevant information to help me make an informed decision.
The Parent Guide also encouraged me to attend some BC Hands and Voices (BCH&V) events. I had never met an adult with hearing loss before but I was introduced to Deaf and hard of hearing adults at BCH&V workshops. To watch and listen to their presentations and panels, I learned that people with hearing loss can become successful professionals. I also learned valuable advice from other parents’ experiences raising their older D/deaf and hard of hearing children. These veteran parents’ stories gave me hope and encouragement and taught me that the most important element is how the parent nurtures the child.
BCH&V has helped our family in other ways. I find that Veronica is happier, more confident, more willing to express herself and communicate with others after joining in at BCH&V family events like the fun family picnic each June. BCH&V gave me travel assistance to attend a workshop at a time when I was not mobile and in need of help. They also provided a volunteer Chinese interpreter so that I could understand the presentations and discussions in my mother tongue. All of this combined boosted my confidence that I can help my child to have a bright future.
Balancing My Time Between My Children
Veronica’s brother is more than 10 years older than she is. For the last three years, I was so focused on Veronica’s hearing and language development that I must admit I feel I neglected my son for quite some time. I did explain to him that I cared about him but his younger sister needed me more during her early years. I thought my son would understand until one night last year he burst out that I loved Veronica and did not love him. I was in tears and so was he. I told him over and over that I love him as much as his sister.
Since then, I constantly remind myself to give more of my attention to him, as well as include him in Veronica’s events and appointments. I know he will help Google search for the answers to Veronica’s questions about the ladybug.
The Next Stage
Veronica has just started Grade 1 at a new school; our neighbourhood elementary school. She is excited and, while I still feel a little nervous about her being in a totally new learning environment, I am confident she will be able to do well. I also feel assured that she will not feel lonely there as her best friend, who is also hard of hearing, is going to the same school.
Looking back, I feel we have so many blessings. I have so much appreciation for all the professionals and other families we have met along our hearing journey, who have done so much to help Veronica and our family to reach where we are now.