AC is 18 years old now and has come a long way since I started this blog many years ago. He’s grown about 4 feet for starters – and is now gearing up for college. But, he still has mild-moderate hearing loss (bilateral sensorineural 45db), and he still wears hearing aids. He’s doing really well and we are very proud of him. He knows about this blog, and agreed to share his story with the hopes that it might help others. I do not post in this blog very much anymore, but I leave it up with the hopes that it may still help others who are looking for information.
How We Found Out
We didn’t find out about AC’s hearing loss until he was 4 years old. He began wearing hearing aids then. They say he was probably born with it (hearing loss) – and once we were looking for it – it was pretty clear he was. However, for almost four years we were completely unaware.
We only found out because his PreK teacher mentioned that his speech was a bit off when he was almost 4 yrs old. She didn’t mention his hearing. At first, I thought, “well, of COURSE his speech is off. He’s THREE!”… but, then, I thought she was probably looking out for our best interest and not trying to offend or annoy (which I admit, I actually was a little at first – and I talk more about this in another post).
So I told her I’d mention her concerns to his pediatrician at his upcoming 4 year check up. I really expected it would not result in anything. His speech was a bit off, but he was ahead on every other milestone, and his vocabulary was really quite impressive for an almost 4 year old (said the proud unbiased mother ).
At the end of his 4 yr check up, his Pediatrician told me how healthy AC was and asked if I had any questions. I then said, “actually… yes…”… and casually told her how his PreK teacher had mentioned to me that his speech was a bit off and he might need a speech evaluation. AC was fairly shy and very healthy – so, his Pediatrician wasn’t even sure she noticed his speech. So we had to coax him to talk a bit in front of her… and then said, “well, his speech IS a little off… and then promptly asked, “but, his hearing checked out okay, right?”.
I told her how the nurse and I couldn’t get him to cooperate when she tried to do the hearing check that day, and how the nurse told me that it was “normal for kids to act like that” and they didn’t always like to cooperate. No flags had been raised. So, the Pediatrician said we should try it again… right then. So, we tried again… and AC again wouldn’t do it (because, he couldn’t). Slowly, it dawned on me that perhaps he did have a hearing problem…
We had to wait 2 weeks before we could get him in for a thorough exam. By the time we went in, I knew he had a hearing loss – but, was hoping it was something temporary. People kept telling me maybe he had a blockage.. or water in his ears. Deep down, I knew better now. He had never had one ear infection. Not one. And, the more I thought about it, the more I realized there were signs all along – we just plain missed them – but, it was now painfully clear.
The Diagnosis & First Hearing Aids
So, it wasn’t a huge surprise when they told us he did indeed have a mild-moderate hearing loss in both ears (bilateral sensorineural 45db). They said he was probably born with it, and was a good example of how/why ALL babies should be screened at birth since we had no family history of hearing loss, etc.
So, at four years old AC got his first pair of hearing aids – and for about 6 months he received speech therapy (while in Pre-K). It was an adjustment, but he seemed to take it all in stride. I think I had a harder time dealing with it all than he did.
He’s All Set!
After the 6 months of speech therapy- there was no special services… no IEP. We never even heard about those options. We were told he was “up to par” and doing great – and so the IEP and 504 just never came up. We naively thought he was “all set” with his hearing aids – and I believe I went into ““positive coping” mode.
I was mistakenly under the impression that his teachers and doctors would tell us what we needed to do – if anything. Yes… you could say I was blissfully clueless.
Or, is He “All Set”?
Flash forward to third grade. After 4 years of glowing reviews in elementary school (PreK-2nd) his third grade teacher began making comments to the effect that he was
“not following directions”, “not following classroom rules”, “not paying attention”, “being impulsive and interrupting”…etc.
He was still getting great grades on his tests and all, but, kept getting these little negative “behavioral” comments. He started getting in trouble for the first time ever in school.
I kept asking her if his hearing wasn’t the issue – she kept saying “NO”. She was so sure, that truthfully at first I wasn’t sure it was his hearing either. My husband and I even told him things like “pay attention”, etc. But, it didn’t take long before I knew something wasn’t right and this wasn’t just “behavioral” or something he was doing on purpose. I mean, we KNEW he was hard of hearing… shouldn’t that be our first thing to rule out as the issue??
Trying to get help
When I expressed my concerns to the teacher she explained that the negative comments she’s been making “aren’t THAT bad”… that this is “typical active little boy behavior”. I got the impression she thought he might be “ADD“. She certainly didn’t believe that he was having any “real problems” from his hearing loss.
I kept trying to explain that his behavior was NOT normal for him, and told her of some of our conversations… why I felt this was more than “typical little boy behavior”. Instead of taking my comments into consideration, she instead made it sound like I was making excuses for his behavior, and like I was being an over-coddling parent.
“I know… as a parent… you hate to see your baby cry”, his teacher said to me when I explained how he had cried when I asked him about problems in school.
“You think I’m upset because he’s crying??? I don’t care if he cries! I make him cry all the time!”, I said. “What I’m upset about is WHY he’s crying and that I think he’s being misunderstood and not treated fairly because of it!”.
I even found an article that talkes about how 3rd grade is a common time for kids with a mild-to-moderate hearing loss to start having more problems in school – due to “more complex verbal instructions, and less visual clues”. Makes sense – but, this also didn’t get a response from his teacher.
As I became more frustrated with the teacher’s responses (or lack of) – I began looking elsewhere for answers. I was surprised with the run around I felt like I was getting, and the general lack of available information on mild-moderate hearing loss. Even the place I took him regularly for hearing exams/HA fittings at that time couldn’t give me ANY information on mild-moderate hearing loss – and what he might need for school.
There was a lot of information for the Deaf community that used ASL – but, nothing specifically that pertained to my son’s mild-moderate type hearing loss in mainstream education. I remember feeling very alone. I had so many questions and wasn’t finding answers. I didn’t know any other kids or families with mild/moderate hearing loss. I really struggled to find support and information.
My husband and I actually resorted to approaching strangers if we saw they had a child with a hearing aid… and thank goodness… THEY were a huge help. One person was an ex-teacher that I just happened to remember had a daughter with a hearing aid. I tracked him down and called him. Another person was a COMPLETE stranger my husband approached on my behalf in line for a movie.
Even with advice, there was much up in the air. Every child’s situation is so different. It took many days of phone calls, hours of emailing and surfing the net just to figure out who to contact or get responses.
Eventually, I discovered that there was an audiologist that worked for the school district we attended. Who knew!? Not me! Turned out, she didn’t know of us either. She was as amazed as we were that she had never known about AC. She WAS one of the key people we needed involved, though.. and was a huge help once we found her.
Part of our problem, was that AC was doing so well, that it didn’t appear on the surface that his hearing loss WAS a real problem.
It wasn’t like we were hiding it from the school. He wore hearing aids since pre-K and I turned in his audiology report to the nurse each year. However, since he wasn’t failing anything and wasn’t a “problem”, nobody notified the district audiologist about him, or mentioned her to us. There was no IEP or 504 ever mentioned.
Once we DID get in touch with the right people – things started to happen and we were able to get Aaron the consideration and help he deserved. I learned, though, that you need to be proactive. If we had not sought out help on our own, who knows what would have happened. As it was, it took most of 3rd grade to figure out AC’s needs, and set up the 504 plan and use of the FM system that we now have in place.
Living and Learning…
Now that we have some really good people to contact (the School District Audiologist, and our own wonderful new Audiologist, The School District Teacher of the Deaf, Other Parents, and numerous websites and support groups I found on-line) and we better understand the laws, and have found so many good resources (see far right column!) – things are much better. Initially, it was all very overwhelming. So MUCH to learn! – There’s Deaf culture, hearing loss in general, advocacy, technology – and trying to determine what will work best for AC’s needs. Especially at first, this was a LOT to take in, and take on. It was overwhelming at times to say the least. I will say, it does gets easier. It does. So hang in there.
Hearing loss is just one part of our lives now… and I’m not complaining about that. All things considered, our family is pretty damn lucky and AC’s hearing loss is not really such a big deal. It’s just one small part of our family, and of what makes AC – AC! He is also just a good kid, a great big brother, doing very well in high school with plans for college, still playing cello, guitar, and he also has been in Cross Country and Track the last few years. We couldn’t be happier with the young man he is.
I do want to try my best to understand what AC is going through with his hearing loss, and make sure he gets whatever he needs to succeed in school and life.
Ultimately, the goal is that he learns to self-advocate, and that he is successful and happy. We hope that this blog might be able to help someone else along the way as well.