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.
There are three important reasons to talk to young children about their sexual health. All of them are centered around protection and prevention, with the idea being to keep our children safe, educated and informed. This was the take home message from Saleema Noon (www.saleemanoon.com) when she presented to BC Hands & Voices in March 2016. Many of you with school-aged children may be familiar with the sexual health education that Saleema does in school districts in the Lower Mainland. Or you may have come across her on the TV or radio. We were excited to have her present on this serious topic in her characteristic fun, light-hearted way. So back to those three reasons:
Normalize the conversation. Young children haven’t yet been conditioned to know that sexual health can be a taboo subject in our society. 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. The media world today is very different to the environment we grew up in, with our children exposed to different pressures than we were. Media content is more sexualized and ubiquitous, and easier to access – think computers, smartphones, tablets. We shouldn’t rely on schools or others to educate our kids to discern between fact and fiction. Instead, we should step in to be our children’s reliable go-to source.
Protect our children. Studies show that children who are educated in sexual health are better protected from child sexual abuse. Sex predators seek out vulnerable individuals. They recognize 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 they 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, here are aspects of sexual health that Saleema recommends preschoolers should know:
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).
They have ownership of their own bodies. They 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 go on their bodies 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.
The basics of reproduction, pregnancy and birth. Reproduction usually happens when a man’s sperm joins a woman’s ovum by sexual intercourse. Babies grow in the uterus, not the stomach, and are usually born through the vagina. Children may ask more probing questions, which should be answered honestly. They will only absorb the information they are able to process.
The uniqueness of our bodies and each of these processes. How a person looks doesn’t necessarily tell you how they feel on the inside (introducing the concept of transgender). Just as each person is unique, so is each family. There is a diversity of families, with different ways for families to form. Some babies get their first water slide during a vaginal birth when the uterus muscles contract and water breaks, others come out the sunroof during a caesarean section. Both are healthy ways for babies to be born.
Not to pick up condoms and needles, explaining that while these are clean and healthy items before use, they can have germs after being used, and we don’t want them to get sick.
With our community in mind, the evening was enriched by two other contributors, Astrid Evenson, Sign Language Instructor, and Kim Shauer, Hands & Voices Guide By Your Side Coordinator. Astrid taught us ASL vocabulary for the scientific words and processes discussed by Saleema during her presentation, and Kim spoke to additional considerations for families who have children who are deaf or hard of hearing and have additional needs. With this in mind, we can help our children develop language to tell how they are feeling (e.g., scared, hurt) and identify parts of the body. If they have not yet developed signs 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). Goals around safety should be discussed with our children’s team, and safety goals included in Individual Family Service Plans or Individual Education Plans (e.g., explaining appropriate & inappropriate touch; public versus private). On this topic, Saleema also noted that there will be a chapter on sexual education for children with special needs in her new book for parents.
While preschool and kindergarten programs may adopt an approach to sexual health education that is similar to Saleema’s recommendations, it remains important that we, as parents, are confident in talking straight to our children on this topic right from day one. Given a strong basis of honest information from their own family means that any extra details they glean from other responsible adults will be the icing on the cake. It also empowers them to handle information from peers 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. If we start today with our young deaf and hard of hearing children, we’ll be ready to help them fill in any gaps that might appear from missed incidental learning as they grow.
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
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
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?
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.