One Family’s Journey
How Bad Can
Aaron, now a 10th grader
We came late to this journey. Our son was identified with a mild to moderate hearing loss when he was almost four years old. My husband and I went through the stages many parents go through when their child is newly “labeled” or is struggling in school. We knew nothing of hearing loss, and were especially concerned about our son’s future educational needs.
It wasn't until third grade that he started showing any signs of struggling in school and was set up with a 504 plan. Deciphering how that plan could assist him, or even how to qualify for assistance was not very easy. I researched for countless hours and was disappointed with the lack of relevant information available. I easily found resources for parents regarding children who were deaf, but not much content for a child who had mild to moderate hearing loss. When I did eventually discover articles specific to hard of hearing (HOH) children, they were not very encouraging.
That Sinking Feeling
I found myself reading articles that matter-of-factly proclaimed common impacts of mild-moderate hearing loss on children. Many studies spat out alarmingly high statistics and percentages of hard of hearing children facing difficulties, socially as well as educationally. They described problems like delayed vocabulary, speech difficulties, poor self esteem, and greatly reduced academic achievement. This was not easy to swallow, especially not for someone with a newly identified HOH child.
I remember reading many of these articles with a sinking feeling in my stomach... Was my child going to have these problems? Just how bad is "mild to moderate" hearing loss?" How can "mild" or “moderate” be so bad, anyway? This was an issue that had gone unnoticed in our child for years. How big of a problem could it be? I think denial is often a knee-jerk reaction for parents. It definitely was for us. The news was hard to accept. Then, I started reading about how much of an impact even a little hearing loss can have. Of course I was very concerned, but there was also a part of me that just could not believe that all of these things would apply to my son. Turns out, I was actually right on both counts.
The Good News
Yes, finding out your child has a mild-moderate hearing loss is disconcerting, and good reason for concern. There are things your child will need and it can all feel very overwhelming at first. However, you should also know that a lot of the “scary” statistics regarding HOH children will not necessarily apply to your child. This is because many of the problems commonly associated with hearing loss apply to children whose hearing loss went undetected, undiagnosed and their needs were not met. They may have needed, but did not have access to, hearing aids, FM systems, speech therapy, or other supports, services and available technology.
This is actually very good news to any parent that has a newly diagnosed HOH child. It means that just by discovering your child has hearing loss, you are on your way to preventing and/or minimizing many of the real risks of hearing loss. You can make sure your child will get the support and assistance they may need. The earlier this diagnosis is made, the more prepared you can be.
While our son’s hearing loss will always be a part of our lives, it has become less of a concern over the last several years. He is now in tenth grade. He wears hearing aids, and has a 504 plan that ensures teachers know about his hearing loss and use the FM system when needed. He also plays cello, guitar, participates in cross country and track & field, has lots of friends, and he does very well in school. He has always been mainstreamed, is in accelerated classes and usually makes honor roll if not high honor roll. You could say he is a typical teenager. (We tend to think he’s a little better than typical, but we might be biased.) His hearing loss is just one small part of what makes him who he is. We couldn’t be more proud of him.
Early Identification and Support is Key
All this is not to downplay the concerns about access to education with a hearing loss, even a mild one. If anything, I hope parents will learn in detail how to support their child and take action. There is definitely a real need for people (especially parents, doctors, schools and teachers) to realize that mild-moderate hearing loss is a serious issue. For many years, hard of hearing children were called “forgotten” and were “overlooked.” That's why hearing loss is called an “invisible disability” (though not everyone prefers the term “disability!”) Even with more focus on early intervention these days, mild-moderate hearing loss is still often misdiagnosed, misunderstood, and dismissed. Hearing aids, FM systems, and speech therapy are just some of the real needs for most kids with mild-moderate hearing loss.
Most children with hearing loss, even mild, should get assistance to ensure their needs are met with a 504 or IEP plan. Yet sometimes parents are told, "Johnny isn't failing so he doesn’t qualify for assistance." I was once told that my child could hear “well enough”. Some might even accuse your child of having behavioral issues since mild hearing loss symptoms are similar to those of ADD/ADHD. It is during these times that you will really want to know the information in those articles, including the scary statistics that apply to children who didn’t have timely, quality supports. You will want to be able to explain and prove that even a mild hearing loss can pose real problems. You will want to understand the laws and eligibility in your region.
Determining Your Child’s Need
So, how DO you figure out just what your HOH child needs, let alone advocate for them? Well, it's not always easy. Every child and family’s needs are different. You can't possibly figure it all out overnight, and you don't have to. You also don’t have to do it alone. Thankfully, there are more resources now for parents of children with hearing loss. Websites like Hands & Voices, personal blogs, and groups where you can talk to seasoned parents can be invaluable. Seek out professionals who will help advocate for you.
In our case, there was an audiologist and teacher for the deaf/hh that we never even knew existed in our school district until we sought them out when our son was in third grade. Once we found them, things started falling into place much easier. They were on “our side” and the teachers and other school officials would listen to them whereas they may have been hesitant to listen to us.
In the end, the things our son needed most were his hearing aids, the FM system (although this has been hit and miss), and some basic considerations. Understanding little things can make a big difference. For example, the teacher being willing to repeat things, and to try to make sure they have his attention when talking to him. You would think these things would be a given, but I’m always amazed by how many teachers will make comments like, “he probably hears better than I do,” or “I have a loud voice, so it won’t be a problem.” What they don’t always understand is that if they are not using the FM, and their back is turned, or the lighting is bad, or there’s background noise, or they are out of the approximate ten foot radius that his hearing aids pick up from, then it won’t matter how loud they speak. “Preferential seating” is also always a topic, but contrary to what many teachers think it does not mean sitting front and center. Our son actually does better if he’s in the middle of the classroom, where his hearing aids have a better chance of picking up the other students talking as well as the teacher. I always mention at teacher meetings how I learned that asking a HOH child, “did you hear everything ok?” is not very effective. This is because nine times out of ten our son will say “yes”, and this is not because he is embarrassed or lying (which he’s also been accused of) but because if he didn’t hear something at all, he does not have a clue that he didn’t hear it. You can’t know you didn’t hear something, if you didn’t hear it at all. So, instead of saying, “did you hear that okay?” it’s better to be more specific with “you got the announcement about practice, right?” or ask him what step he is going to take next with an assignment.
It can feel like a battle at times, but once things are in place hopefully life will settle down. It did for us. Then, you can relax with the knowledge that your child will be just fine. Their hearing loss does not define who they are, or what they can accomplish. They do not need to become another negative statistic of children with hearing loss. Instead, they can be one of the many success stories.
Editor’s note: The author lives in New York and blogs at http://hearmehearmenot.wordpress.com.