• navigating social events with your child
• access to extra curricular events for your child
• finding support within your extended family
• any other ideas?.

This is an opportunity for parents to get out for the evening and socialize – no childcare is provided on site.

BC Hands & Voices events are for families of deaf/hard of hearing children aged 0-5.

Date:             Monday, November 28th, 2011 from 7:00 pm-9:00 pm.

Location:      House #3, Provincial Services for the Deaf & Hard of Hearing
4334 Victory St., Burnaby BC (click address for map)

Contact info: info@bchandsandvoices.com

Saturday Oct. 16th 10:00 am to 3:00 pm at the Children’s Hearing & Speech Centre of BC (3575 Kaslo St, Vancouver)

We’re thrilled to have Dr. Janet Jamieson as our guest speaker.  Dr. Jamieson is an Associate Professor & Director of the Program in Education for the Deaf and Hard of Hearing at the University of British Columbia.  She will introduce the topic of self-esteem in children with hearing loss, and then facilitate a panel of deaf and hard of hearing teenagers.  After lunch, she will facilitate a second panel of “veteran” parents of children with hearing loss.  There will also be times during the day when families can chat informally and share information with one another.

Registration Details

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Thursday, May 27th, 7:00
Starbucks, 104-12571 Bridgeport Road, Richmond (at Sweden Way, across the street from Ikea). Take the Bridgeport Road exit from the Knight Street Bridge.  It`s is also easily accessible from Hwy 99 and 91.

Come join us – this is a great, informal opportunity to get together and chat with other parents of young children with hearing loss.  For more info, call 604 552-2254.

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After using a Bone Anchored Hearing Aid (BAHA) for 6 years, our 14 year old son Jesse recently received his second BAHA – he “went bilateral.”  He was born with bilateral atresia (no ear canals or openings on either side) and has a bilateral severe to moderate conductive hearing loss.

In spite of having bilateral atresia and bilateral hearing loss, Jesse wore just one hearing aid for the first 14 years of his life, and for the most part it worked out well.  He had a bone conduction hearing aid until he was 8, when he was fitted with his first BAHA (after two surgeries to implant the titanium screw and “abutment”).  Jesse has always used an FM system in school, and has done very well.  Listening in noise was (and is) challenging, but Jesse has always seemed to hear better than we expected him to, given his hearing loss.  As long as we got his attention first, he seemed to be able to hear us over the background noise, and when that didn’t work, we used a little sign language as a back-up.

While Jesse did well, we always wondered if life would be easier for him if he had bilateral hearing aids.  For one thing, having a single hearing aid is a real pain when it breaks.  He would either have to use his old bone conduction aid, which he no longer liked after getting the BAHA, or we would have to fit in an urgent trip to the audiologist to get a loaner.  Secondly, Jesse had practically no ability to localize where a sound was coming from.  When he was little, we were always concerned for him around traffic and in parking lots.  And then he always had a “good side” and a “bad side,” and I have never been good about remembering to sit on the good side of him – and, to be honest, I always had to concentrate to remember which side his BAHA was even on!   Lastly, and perhaps most importantly to Jesse, were issues related to music.  Jesse is a great fiddler, and plays in a Celtic Ensemble with twenty other teens.  With one hearing aid, which is situated very close to his violin, he often has difficulty hearing the guitar or the other fiddlers over the sound of his own violin.  We wondered if having a hearing aid (and thus microphone) on the opposite side would allow him to hear his fellow musicians more easily.

So, we sat down with Jesse to see what he thought about the whole idea.  He was not too keen on the idea of another surgery (he has also had two other unrelated surgeries) and in general didn’t really want to get it.  However, we talked with a few people, including his audiologist, who pointed out that it was hard for Jesse to know what he was saying “no” to.  She used the analogy of pizza – if you had never tried pizza, you wouldn’t even know how much you love it.

At one point Jesse said to us that it didn’t really feel like we were giving him a choice.  We told him that if he strongly opposed it, he definitely did not have to get it.  But if he was just put off by the idea of the surgery (which is really not that major, but does mean going under anaesthetic and wearing a very itchy head bandage for a couple of days), then we would rather he not make his decision based solely on that.  We said we would push him in that direction because we thought it would be something that would be a benefit for him, but would never make him have the surgery against his will.  In the end, he decided that he would get the second BAHA.

The surgery went well, and he was able to have it done in one stage rather than two this time, since he was older and the bone was thicker.  While he was healing, we learned that the new BP100 was being released, which is the latest version of the BAHA from Cochlear.  There were some delays, so we had to wait awhile, but he finally got his hearing aid in November, five months after his surgery.

We encouraged Jesse to start a blog to document his experience, both with “going bilateral” and with the new BP100.   You can read about his early impressions (http://bahadude.wordpress.com/) – he makes some interesting observations.

At this point Jesse has been wearing his two BAHAs for 7 weeks (his old BAHA compact on one side and the new BP100 on the other).   Between school work and music, he is a busy kid, so I thought the best way to get his input for this article was to interview him.

TK:  “What do you think of having bilateral BAHAs so far?  Do you notice much difference from when you just wear the one BAHA?”

JK: I like having two BAHAs now.  At first it was a little bit weird, and I had to get used to it, but it’s normal now, and sometimes I don’t notice that I even have the new one on.   I find that most sounds seem louder now than when I only had one hearing aid.  Sometimes this helps, but sometimes in places where there’s a lot of background noise, it makes it harder to listen to the person speaking just because everything seems louder.  I am getting used to it, though.

One advantage I have found is when I am walking with my friends.   I don’t have to position myself so that the side with my hearing aid is towards them anymore.

Also my mom says that I don’t say “what” or “pardon” as much when I’m wearing both hearing aids.

TK: Did it take long to get used to wearing two hearing aids?

JK: It took me about a month and a half to fully get used to it.  At first I had to take breaks from the new hearing aid because it was really different and really weird sounding, sort of overwhelming.  Gradually I started using it more and more (over a period of about 2 weeks), and then I started using it full time.  Just about a week ago is when I noticed that it sounds normal now.

TK: How do you find the sound quality of your new BP100 compared to the older Compact BAHA?

JK: The BP100 is a lot clearer than the Compact.  Another thing I noticed is when I use the background noise setting (directional microphone) on my new hearing aid, I find it a lot easier to hear in noisy situations.

TK: You were hoping that having two hearing aids would help you when playing in the fiddle ensemble.  How has that been?

JK: I was hoping that having two hearing aids would help me hear other musicians when I am playing in my fiddle group.  Unfortunately, there was something wrong with my BP100, and I got feedback whenever there was a loud noise, like my violin, so I couldn’t wear it at rehearsal.  We went back to the audiologist today and got a new one, but it doesn’t seem to work any better than the first one.  Hopefully they will eventually come out with new software and be able to fix it.

TK: Have you noticed any difference when you are talking on the phone?

JK: Yes I have noticed one major difference; in noisy situations, it is way harder to hear because the background noise is twice as loud (coming through two hearing aids) but the person speaking on the other end of the phone is the same volume (only coming through one hearing aid).  I have decided that from now on whenever I find myself in this situation I will turn off the hearing aid I’m not using for the phone.

TK: Has your ability to localize sounds improved at all?

JK: I can localize a little bit now – not easily, but I can a little bit.  We’ve tried it a couple of times – I close my eyes and somebody talks to me and I try to localize the sound.  Mostly I can find the general direction of the source of the sound, but I have troubles localizing behind me.  My ability to localize sound has improved slightly since the first time we tried it – my audiologist recommended we practice localizing to see if I can improve my skills.

TK: If you had to decide all over again knowing what you know now, would you decide to get bilateral BAHAs?

JK: Yes.  The only part that discouraged me in the beginning was the possibility that the surgery could go wrong and the knowledge that I would have to wear that really, really itchy head bandage.  Since the bandage is only temporary, and the risk of something going wrong isn’t very high, I think the advantages outweigh the disadvantages.

TK: Do you have any advice for other BAHA users who are considering going bilateral?

JK: Personally I think it’s a good idea, even though the prospect of getting surgery may be daunting.  It’s a lot easier not having to always accommodate for only being able to hear on one side.

http://bahadude.wordpress.com.

My first challenge was my family — my husband and his parents in particular. They had this need to place “blame”, to find a reason for why Connor was inflicted with a hearing loss and that need of reason or blame fell onto me because I of course had a hearing loss myself. And I myself had already been down that road of placing fault onto myself but changed my tune quickly. My hearing loss was caused by a reaction to medication when I was a toddler and the testing showed no indication it is genetic. I feel that on the most part they have gotten over the “blame game”, but every now and then one remark or another will be made and I just cope by ignoring the comment and responding by pointing out something amazing about what Connor is doing or has done and what a great child he is.

My next personal challenge came after Connor was wearing his aids. I love his aids, which are cute baby blue ones that match just about everything that he wears. I was really good about having him wear them. I don’t wear aids myself, and I taught myself to cope without them. I really wanted to make an effort to make sure Connor would feel comfortable growing up with them and not feel embarrassed about wearing hearing aids the way I did when I was a kid. But it then became very evident to me by having the baby blue which stands out, that I would be asked questions about them or Connor. I was totally not prepared for these questions and found myself on the defensive at first. Some examples of these questions and responses are: “Oh what are those things?”, or “What wrong with him?” Or having people snap their fingers to see if he would respond. It really took a lot for me to react calmly so that Connor wouldn’t sense my tension or frustration when I responded, “They are hearing aids. My son has a hearing loss”, or “Nothing is wrong with him. Why do you ask?” or “Do you usually respond when people snap their fingers at you?” (That was not one of my finer moments.) Learning to react calmly has been a great challenge for me and on the whole I do manage to be calm.

My final personal challenges have been in the last year, which has been an amazing year of development. I have been constantly questioned about the fact that Connor even has a hearing loss at all. And sometimes I would even question it myself. So the struggle has been to remind myself that, yes, he has a hearing loss and learning how to explain it to others so that they will understand. “He hears things more quietly than you and will miss sounds and words when he’s in noisy situations” — these I find are the easiest to use.

However, even though I know and remind myself on a regular basis, I have been not so diligent about keeping his aids on. This is mainly due to the fact that he functions so well without them, and he likes to take lots of breaks with them, or take them out and take them apart. Sometimes it’s easier to just leave them out. As I write this, I have challenged myself to be more diligent about my role in making sure Connor wears his aids and I hope that the time off from them hasn’t hindered him in any way.

I first noticed my hearing loss in 1990, when I was 44 years old. I was staying the night at a friend’s house, and was irritated by the ticking of the alarm clock. However, when I rolled over in the bed, I couldn’t hear the clock at all. Around the same time, I attended a CNIB workshopand was blindfolded so I could get some idea of what it would be liketo be blind. Once the blindfold went on, I became not only blind, but extremely hard of hearing! I hadn’t realized how much I depended on visual clues to compensate for my hearing loss. Three years passed before I actually had my hearing checked.

Although the findings indicated I did indeed have a hearing loss in my right ear, I chose not to get a hearing aid. Over the years, I have learned some tricks to aid my hearing loss. I always try to walk and/ or sit so people are on my left side. Because my loss is mostly in the lower tones, I have the most difficulty hearing my husband. He also has a hearing loss, so we have some house rules. For example, don’t talk to me if you can’t see me, and call my name to get my attention before you talk to me. Also, because my hearing loss is only in one ear, and I have trouble locating where sound is coming from, tell me where you are! Crowds are difficult. When I am talking to a person in a noisy environment, I try to position myself so they talk into my good ear. Unfortunately, because people like to make eye contact, we end up turning in circles.

Because I don’t wear a hearing aid, I have to inform people of my hearing loss. I am always pleasantly surprised at how accommodating people are. Everyone always knows someone who is also hard of hearing. Actually, most people my age (63) seem to be hard of hearing!

As Scott grew stronger, and started breathing on his own, we were beginning to face long term issues.  We were told that it was almost certain Scott would not walk, due to damage caused by brain bleeds.  Preemies like Scott almost always have eye problems, and he was no different.  Scott had a 50% chance of losing his vision in each eye.  He also had an early hearing test that had inconclusive results, but indicated that he may have hearing issues.

With everything we were faced with at the time, the possibility of hearing loss seemed like something we could deal with, so it wasn’t our primary concern.  Vision loss scared us a great deal, and we were still trying to get Scott off his respirator.  This meant that the hearing issues, which were now confirmed, would have to take a back seat.

Five years later, with over 30 surgical procedures under his little belt, Scott is a happy little boy. His heart, brain, and lung issues have all cleared up.  The doctors were partially right about him not walking.  He prefers to run, jump, or climb.  He lost the vision in one eye, and is very near-sighted in the other.  Despite having very poor vision, he has learned to adapt well, and uses the vision he has with great efficiency.  He is completely deaf, and uses a cochlear implant to hear. With everything he has been through, his hearing, the issue that concerned us the least, is his biggest obstacle.  Scott still has difficultly communicating, but is getting help and is making good progress.

In hindsight, the fact that Scott was facing other medical issues made early intervention for hearing loss even more critical.  While early intervention is extremely important in all cases, an otherwise healthy child with hearing loss has the ability to adapt and integrate, either orally, or with ASL, to a hearing world with relative ease.  A child like Scott, whose vision loss can make it difficult to pick up sign language, and whose constant trips to the operating room can cause a great deal of stress, needs all the help he can get, and early intervention is a good start.

If your child is eligible for the Disability Tax Credit, you can set up an RDSP for him/her. Contributions to an RDSP may be supplemented by payments from the Canada Disability Savings Grant Program. Lower-income families may be eligible for assistance from the Canada Disability Savings Bond Program without having to make a contribution to an RDSP.

Both the Canada Disability Savings Grant (CDSG) Program and Canada Disability Savings Bond (CDSB) Program are administered by Human Resources and Social Development Canada.

Deadline for receiving the CDSG or CDSB for the year 2008: Set up an RDSP, and make the Grant or Bond application on or before March 2, 2009.

As of now, RDSPs seem to be available only at Bank of Montreal. You can call the BMO Investment Centre at 1-800-665-7700 to set up an RDSP.

For details, visit these sites:

www.hrsdc.gc.ca/eng/disability_issues/disability_savings/index.shtml

www.cra-arc.gc.ca/tx/rgstrd/rdsp/fq-eng.html

www.rdsp.com (A very helpful website set up by Planned Lifetime Advocacy Network, a non-profit enterprise that has led the advocacy work to make this disability savings plan happen.)