Hearing Loss, ADHD, Autism……Oh My!

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!

Posted in Uncategorized | Comments Off on Hearing Loss, ADHD, Autism……Oh My!

2018 President’s Report

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

Parent Coffee Night “Microtia/Atresia”

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 ckalchbrenner@cw.bc.ca
Please RSVP by May 10th and please indicate if you will be joining us online or in person.

Download the PDF Flyer: Microtia 5.2019

Posted in Coffee Night, Events, Families to Families, Microtia/ Atresia | Tagged , , | Comments Off on Parent Coffee Night “Microtia/Atresia”

A Quick Reference Guide for Families with Young Deaf and Hard of Hearing Children in BC

Editor’s note: This article was written in 2019 and specific services may vary from year to year, so please contact each organization regarding their current programming.

by Brianne Braun

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!

Click here to access the PDF>> Quick Reference Guide
Posted in Articles, Families to Families | Tagged | Comments Off on A Quick Reference Guide for Families with Young Deaf and Hard of Hearing Children in BC

Parent Coffee Night- Learning from DHH Adults

 


Monday April 8th 2019 7:00 – 9:00pm

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 ckalchbrenner@cw.bc.ca
Please RSVP by April 1st and please indicate if you will be joining us online or in person.

Tea and yummy treats provided!

Download the Flyer Here: Learning from DHHAdults

Posted in Coffee Night, DHH Guides, Events | Tagged , , , | Comments Off on Parent Coffee Night- Learning from DHH Adults

2019 AGM & Parent Evening

BC Hands & Voices Parent Evening & AGM

Monday March 4, 2019
7:00 pm – 9:00 pm
Free to attend

Location: BC Family Hearing Resource Society, Vancouver Satellite Office, #262 – 3665 Kingsway

Join us for a casual, social evening! Tea and treats provided

 

(AGM portion of the evening will be available by teleconference)

A “meet up” for parents of deaf/hard of hearing children newborn to 5 years old!

Join some veteran H&V parents, board members, and local Guide By Your Side Guides as they share some ways life has changed and how they’ve adapted as parents of deaf/ hard of hearing children.

 

BC Hands & Voices Annual General Meeting 7:00-7:30pm

We’ll begin with a brief 15 minute AGM, where we will share what BC Hands & Voices has accomplished over the past year.

ASL interpreters will be provided

Parking Information
Free parking in the underground of the building is available in the evenings.

For more information or if you live outside the Lower Mainland and need the teleconference information please email ckalchbrenner@cw.bc.ca

Download Flyer Here:

Loader Loading...
EAD Logo Taking too long?

Reload Reload document
| Open Open in new tab

Download

Posted in Coffee Night, Events | Tagged , , | Comments Off on 2019 AGM & Parent Evening

Revisiting the Birds and the Bees: The Importance of Speaking Frankly to Our Young Deaf and Hard of Hearing Children About Their Sexual Health

By: Jennifer Gow


Revisiting the Birds and the Bees-ਪੰਜਾਬੀ

In the early days of motherhood, my days were often focused on the here and now, putting one foot in front of the other to keep up with my children, and with the whirlwind of family life. I certainly didn’t expect to find myself sitting in a room listening to a sexual health educator tell me how important it was for me to start speaking to my preschool child about their sexual health. The parent education night at my elder daughter’s preschool, with a presentation by Saleema Noon, was a breath of fresh air.

As I remember my childhood, my education in this area came as much from gossip in the playground as it did from adults in the classroom or at home. It certainly wasn’t a topic of conversation for the dinner table. Not only was rather little said on the topic, but when it was brought up, slang words would often replace proper terms. Other than in biology classes or in a medical context, I have no memory as a child of an adult using scientific terms for private body parts. As a result, I know a litany of slang terms verging from innocuous and funny to rude and downright unrepeatable. But as a mother, I realised words like ‘penis’ and ‘vagina’ didn’t easily slip off my tongue when speaking to my children. To some this may sound ridiculous, and to others all too familiar! We all come from different backgrounds but many of us have been raised in a society where sexual health is not openly talked about.

But what is the big deal? Why is it so important to use proper names for our body parts? Why do we need to talk to our children about their sexual health when they are so young? And how does this apply to our deaf and hard of hearing children?

I’ve seen “Saleema Noon Sexual Health Educators” present several times now, as my children have moved from preschool into school, and I have come to appreciate that there are three important reasons to talk to young children about their sexual health. All of them centre around protection and prevention.

Normalize the conversation. Young children haven’t yet been conditioned to know that sexual health can be a taboo subject in our society, and will name the penis as readily as the knee! They love to be scientists, exploring the world around them, so they tend to be very receptive to being taught ‘body science’. By making the conversation matter-of-fact and normal at an early age, we can lessen the extent and length of the “grossed-out” phase. This is a stage that many kids go through in their middle elementary years due largely to societal and peer pressure.

Become our children’s number one information source. If we don’t teach them, someone else will, and that person may not be a reliable source. Today’s media-soaked world is very different to the environment we grew up in, and our children are exposed to pressures that we were not. Media content is more sexualised and far easier for children to access with computers, smartphones, and tablets. We shouldn’t rely on schools or others to teach our kids how to discern fact from fiction. Instead, we should be their reliable go-to source.

Protect our children. Studies around the world show that children who are educated about healthy bodies and healthy sexuality are better protected from child sexual abuse. Sexual offenders seek out vulnerable individuals. They recognise that a child who uses scientific vocabulary for body parts and has ownership of their own body has been taught these things. From this, they also know that the child will have been taught to report any exploitative situation. By introducing the concept of sexual consent, we empower our children and help to protect them. It’s especially important for parents of children with additional needs to understand this. Since these children tend to spend more time with other adults in positions of trust, and may not have the same education around sexual health as their peers, they can be at increased risk from sexual abuse. 

With this in mind, Saleema Noon recommends that preschoolers know the following important aspects of sexual health *:

  • Scientific words related to sexual health. This means using the same anatomical language a doctor would use with your child so they won’t be intimidated in a medical setting (e.g., penis, testicles, vulva, vagina, stool). We can help our deaf and hard of hearing children to identify parts of the body at their language level. For those who have not yet developed signed or spoken language, we can model this language through their language abilities (e.g., head shaking, Picture Exchange Communication System/picture symbols, iPad/Alternative Communication Devices). 
  • They have ownership of their own bodies. Children should be aware that they have three private body parts (mouth, breast and genitals, which covers the area from the belly button down and around to the bottom of the back, including the buttocks). It is against the law for anyone to touch their body without permission. They need to report any violation of this to an adult they trust, and know that they will not get in trouble when they do. If the first person doesn’t believe them, or doesn’t do anything about it, then they need to know to report again to someone else, as many times as needed until someone listens. While parents may worry about talking to their children about such a serious topic, kids tend to learn this in a matter-of-fact way in much the same way they learn a fire drill. Again, for our deaf and hard of hearing children, this dialogue can start at the language level of the child; for example, developing language to describe how they are feeling (e.g., scared, hurt). For deaf and hard of hearing children who have additional needs and work with care teams, goals around safety should be discussed with the team, and safety goals included in Individual Family Service Plans or Individual Education Plans (e.g., explaining appropriate & inappropriate touch; public versus private).

*The full guidelines around what to teach our children and when can be found on Saleema Noon’s website

While preschool and kindergarten programs may adopt an approach to sexual health education that is similar to Saleema Noon’s recommendations, it remains important that we, as parents, are confident in talking to our children about this topic right from day one. Honest information from their own family empowers them to handle information from peers, schools, or other sources like the media. It gives them the tools to interpret the information and know they have a trustworthy source in you to explore topics as they see fit. If we start today with our young deaf and heard of hearing children, we’ll be ready to help them fill in any gaps that might appear from missed incidental learning as they grow.

As for me, I’ve got over my prudishness and it has become almost easy for me to use the proper terms for all body parts. I’m not quite the societal rebel but I am raising children who are educated about their bodies and have strong personal boundaries.

Editor’s Note:

Hands & Voices has developed the O.U.R. Children’s Safety Project dedicated to the safety and security of our deaf/hard of hearing children. One of the accomplishments of this project is partnering with ChildHelp.org and the creation of a toll-free number specifically offering support to children who are deaf/hard of hearing: 1-800-222-4453 hotline number (USA & Canada) can be called anonymously by anyone who needs information/support from counsellors about a particular situation (e.g., a parent feeling overwhelmed/frustrated, help with your child’s behaviours, developmental stages/tantrums, fair discipline, questions about needing to report abuse but unsure of ramifications).

Posted in Advocacy, Articles, Events | Comments Off on Revisiting the Birds and the Bees: The Importance of Speaking Frankly to Our Young Deaf and Hard of Hearing Children About Their Sexual Health

Supporting Deaf Children with Multiple Challenges: A Parent Perspective

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

By Cecelia Klassen

 

The Issue

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

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

What We Know

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

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

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

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

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

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

What We Don’t Know

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

Implications

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

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

Posted in Advocacy, Articles, Deaf Plus | Tagged | Comments Off on Supporting Deaf Children with Multiple Challenges: A Parent Perspective

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

By Kim Sanderson

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

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

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

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

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


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

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

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

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

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

Don’t project your crap onto your kids!

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

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

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

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

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

Reject pity

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

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

Forgive yourself for your mistakes

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

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

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

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

Posted in Articles, Deaf Culture, Families to Families | Comments Off on Lessons Learned – A Look Back from 30+ Years of Parenting

Deaf Gain – Another Perspective

Author: Rabab Elbaharia

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

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

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

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

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

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

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

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

Posted in Articles, Deaf Culture, Families to Families, Microtia/ Atresia | Comments Off on Deaf Gain – Another Perspective
    Sign Up for Our eNewsletter!
  • H&V Mission (ASL)

  • Guide By Your Side Program (ASL)

  • Diversity, Equity & Inclusion

    We at H&V are looking within ourselves and within the organization to do better in supporting Black lives Matter. Learn more HERE.

  • Upcoming Events

  • Recent Posts

  • Categories