BC Hands & Voices

Our son Scott was born unexpectedly at 24 weeks gestation one rainy night in early 2004.  He was just over one pound and we were told immediately to expect the worst.  The first few days were critical for survival, but Scott had what it took to fight.  In his first few months he battled a life threatening blood infection, a massive chemical burn caused by a skin sterilizing agent, jaundice, bleeding in his brain requiring surgery, heart surgery, and constant breathing difficulty.  Any of these alone can be overwhelming for first time parents, but all at once, it is indescribable.

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.

For the first $500 you contribute to your child’s RDSP, the government will contribute $1,500 to the plan. For the next $1,000 you contribute, the government will match it by another $2,000. Sounds too good to be true? Well, it’s true! Read on.

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.)

First presented at “Sharing Our Stories” workshop at A Cochlear Implant Conference for Parents And Interested Professionals run by BC Family Hearing Resource Centre in June 2002. Rosalind had been using the cochlear implant for almost 10 years back in 2002. She is now third year at the University of British Columbia, majoring in English Literature.

My name is Rosalind Ho. Today I’m going to talk about how the cochlear implant helps me, its limitations, and the best way to communicate with a cochlear implant user.

Without the cochlear implant, I wouldn’t be able to hear at all. With the implant, as well as years of practice, I can now distinguish human speech. I can hear people as separate voices and not just sounds. Also, I can usually tell one person’s voice from another. Unless the background is very noisy, I can usually carry a conversation with a hearing person.

However, the implant does have some limitations. I can hear music and the radio, and sometimes it sounds all right, and sometimes it’s just noisy. On the radio or TV, I can tell the difference between music and human speech, but I usually cannot understand all the words. Without background music, I can understand songs. Background noise can interfere with my hearing, and when it’s too noisy, it’s hard to follow a conversation. On the phone, voices aren’t always clear. When I listen to an ESL dialogue program on the internet, I can usually understand most of it. The fact that there is always a brief introduction before the dialogue is also quite helpful.

Perhaps you might want to know how I manage in the classroom. If the class is quiet and I’m sitting at the front, I can usually understand the teacher without looking at the interpreter. Of course, it requires a lot of concentration, and more so if the teacher walks around or turns his back to me.

I am now in Grade 8 in high school. The classes aren’t always quiet, so I’m glad that the school provides me with an interpreter so that I don’t miss anything important in class. Otherwise, I’d have a lot of problems.

When you speak face to face with a cochlear implant user, it is best to face him or her and speak naturally and clearly, but not too slowly. Gestures or sign language, if the cochlear implant user does sign, can help too. It is best to begin with something simple and not content-loaded. It’s basically the same thing when you speak to a cochlear implant user over the phone. Speak slowly, but not too slowly, and speak in a clear voice.

The cochlear implant offers many benefits. Without it, I would be completely deaf. With it, I can understand people’s voices and participate in a conversation. But the implant does have its limitations, such as when there is too much background noise or the sound is not clear. When you speak with a cochlear implant user, you should speak slowly and clearly.

With the implant, I am able to hear when I otherwise wouldn’t be able to. I also had to practice a lot and work hard at learning how to hear and then how to speak. My ability to hear as well as I do today is due to a lot of hard work as well as the support of all the doctors, audiologists, speech therapists, and teachers that have worked with me over the years. If you have a friend or a relative of yours who has a cochlear implant, there are many challenges and obstacles to overcome. However, if you persevere, keep an open mind, and work hard, the rewards that you reap will be great.

Thank you for listening to me.

One of our favourite hearing aid stories is when we discovered that our son Connor had a knack for taking things apart. As Connor was diagnosed at birth he’s been wearing his little blue aids since he was 3 months. He’s generally pretty good about keeping them in! However one day I came into our living room to discover that not only had he taken them out, but he had completely dismantled both of his hearing aids. He had removed the ear moulds from the aids as well as the batteries and removed the tubes from the moulds. Needless to say that I could not put them back together again and we had to make an appointment to get them fixed. So we figure Connor will likely be an engineer or something because he was only 13 months at this time!