Emma's Hearing Journey - Part Two

Last week, Emma’s Hearing Journey – Part1 was released. Today’s article follows up with Lisa’s struggle with the Canadian health system, getting hearing aids, facing a new reality and optimistic advice for parents with hard of hearing children.

 

That smiles says it all

Photo Credit: Shayna Kerrie Photography (shaynakerriephotography.com)

Overall, my experience with the Canadian health system has been wonderful, but it was frustrating to learn that the ENT we had been referred to at BC Children’s Hospital had a 12 month wait list!   Emma was in Kindergarten and I felt it was pivotal that we sort this out immediately so she would not miss out on important learning or be at a disadvantage in any way.   I asked around and, much to my relief, found a wonderful paediatric ENT who had only a 6 week wait.   Sometimes parents need to be strong advocates for their children, and I am not one to wait quietly in the background where my child is concerned.  We could have still been waiting for another 8 months, had I not done some of my own research and asked for referrals in mom groups on Facebook.

We saw the ENT shortly before Christmas and he confirmed, to my dismay, that there was nothing that could be done surgically.  Emma didn’t have any fluid and there were no obvious physical abnormalities to explain her hearing loss.  He sent her for a blood test to see if her hearing loss was genetic (which both my husband and I would have to have in order to pass it down to her) - those tests came back negative.  It wouldn’t change the situation, but at least we would have an explanation as to why Emma has lost so much of her hearing.  The ENT also referred us back to the Public Health Audiology Department for a more detailed test, and said that if she did require hearing aids, they would be the ones facilitating it. 

Thankfully, we were able to see them within a month of her appointment with the ENT.  The paediatric audiologist repeated all of the tests and confirmed that Emma had significant hearing issues.  We had her ear moulds done before we even left the appointment that day.  Emma chose the colour she wanted and thought it was neat that she would get to wear hearing aids like Gramma.  I felt relieved that we were finally moving ahead with a plan to help her, and relief that Emma wasn’t instantly opposed to wearing them.   We are mercifully still at an age where she is, for the most part, oblivious to social pressures. 

She is classified as having a “moderate to severe bilateral hearing loss,” which makes her eligible for government funding at school.   She may use an FM system in class to help her distinguish the teacher’s voice from all of the background noise.  This consists of a small microphone that the teacher clips on to her shirt, and a small piece that clips into the bottom of Emma’s hearing aid.  For the moment, we are holding off on that as we are still in the adjustment phase and I don’t want to overwhelm her.  

A proud day!

Emma’s school has been amazingly supportive.  They have arranged for a special hearing teacher to come speak with them to help them understand what accommodations Emma may or may not need.  A speech therapist is seeing her weekly at the school to correct some of the small issues while she is still young.  Her teachers have been very hands-on about learning how to handle the hearing aids and how to help Emma put them back on, if necessary.  For the most part, Emma’s classmates have seen them, thought they were neat and continued on with their day as if nothing has changed.   Young children are so accepting and non-judgmental.  We could learn a thing or two from them!

Emma with her parents, Lisa and Greg

Photo Credit: Shayna Kerrie Photography (shaynakerriephotography.com)

I still have days when I feel a bit of sadness for Emma because we don’t know how much more of her hearing she will lose, or because I know that she is bound to be teased and ostracized at some point.  But, most of the time, I am just grateful that we were able to identify the problem and have so many people working with us to support our beautiful daughter. We are also blessed to have many friends with varying degrees of hearing loss, so Emma will have some very real examples of how hearing loss does not need to stop her from achieving anything she sets out to accomplish.

Life is so good when you choose to embrace the positives and find solutions for everything else.  Hearing loss is not the end of the world!   Reach out for support, both online and in real life.  Advocate for your child, but let them find their own way as well.  Keep the school informed of what’s happening so they can provide support in the classroom and monitor any social issues that may arise.   The more people your child has on his/her team, the better.   Above all, treat your child just as you would have if hearing loss wasn’t an issue, because it is really only a small piece of what makes up that wonderful little person.