AC is 15 years old now and has mild-moderate hearing loss (bilateral sensorineural 45db). He wears hearing aids, and uses an FM system in school. He’s doing really well and we are quite proud of him. He knows about this blog, and agreed to share his story with the hopes that it might help others.
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.
How We Found Out
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.
- AC – 1st day of Kindergarten – 2002
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?
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 to “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 was so mad, when she said,
“I know… as a parent… you hate to see your baby cry.”I said,“You think I’m upset because he’s crying??? I don’t care if he cries! I make him cry all the time!”
What I was upset about was WHAT he was crying about and how he was being misunderstood.
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 couldn’t give me ANY information on mild-moderate hearing loss – and what he might need… let alone where to GET it!
There seemed to be a lot of info 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 that had a child that had 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 and 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. 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.
He wore hearing aids and I turned in his report to the nurse each year – but, since he wasn’t failing anything – nobody notified the district audiologist about him, or mentioned her to us. No IEP or 504 was ever mentioned, etc. Once we DID get in touch with the right people – things started to happen. Still, 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 Audiologist, The School District Teacher of the Deaf, Other Parents, and numerous websites and support groups I found on-line), and better understand the laws, and have found so many good resources (see far right column!) – things are much better – but, every day is still an adventure. New things to learn. So MUCH to learn! About the deaf culture, about hearing loss in general, about advocacy, technology…. the list goes on.
Hearing loss is just a part of our lives… and I’m not complaining about that because all things considered, our family is pretty damn lucky. I have too much to be thankful for – but, I do want to be able to understand what AC is going through with his hearing loss, and make sure he gets whatever he needs, learns to self-advocate, and ultimately that he is successful and happy. So, we will just keep trying to tap into the resources and opportunities that we are fortunate enough to have, and hopefully this blog might be able to help someone else along the way as well.
Deb
- Me & AC – Nov 2008
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Hi–I just found your web site. I’m struggling with just having a 5 year old diagnosed with unilateral hearing loss and all the repercussions of what this means. I hadn’t even finished reading this page when I started to cry. Thank you for your blog. I will continue to read this. Right now, I feel really overwhelmed with what I don’t know, and trying to do the best for my son. Thank you for sharing your story
Lynn: I’m struggling too – I have a 3 year old diagnosed with Bilateral Mild-Moderate loss, and I have gotten a lot out of this blog too. His diagnosis was one month ago, and I’m overwhelmed with the amt of stuff to learn. It is a slow process getting through the grief, the denial, the doctors, and the special education system. I think “change” is the new “normal.” I’m signed up for a “guide by your side” program through the state of Michigan, and found a support group over an hour away we will try. But this kind of loss is so misunderstood I keep wondering if we’ll ever find a place where we get the educational and emotional support we need. Hang in there! We aren’t alone!
Deb: Speech therapy questions -
How much speech therapy did A get when he was 4? You said it went on for six months – how many times a week? Was the therapist educated in HI issues? It sounds like he’s done great! Of course every kid is different, but A’s loss and speech sounds so similar to my son’s, I’m trying to get an idea on what amount makes sense. Every therapist you talk to has a different opinion. Thanks!
Lynn –
Thanks for visiting and the nice comments. I know, it can be so overwhelming. I think, we tend to forget as time passes just how strong the emotions are initially after diagnosis, etc. I’m glad I have some of my old emails and letters to help remind me how it was – and help others know they aren’t alone. I can say, it gets easier and better – so hang in there!
Also – you may be interested in the comments that were posted on http://hearmehearmenot.wordpress.com/2008/11/14/mild-hearing-loss-or-add/, from another mom who has a child with unilateral hearing loss. Her situation seems to be going harder than usual, but there were articles and links posted that pertain to UHL that might be helpful to you.
Karen,
My son only had about 6 months of speech therapy bfore he was thought to be “up to par”. We had a speech therapist come in from our (then) “Hearing and Speech” group – so, yes she was educated on hearing loss. She was wonderful. She met with him 2-3 times/week.
I’m not so sure that he shouldn’t have received more speech therapy… or that it shouldn’t have been more ongoing. It seems most people I’ve talked to with a child who has mild-mod hearing loss – DO get speech. I did question this again when he was in 3rd grade… even had our own private evaluation done – but, they didn’t show that he really needed it.
Now, he’s in 6th grade… his pronounciation is a TAD off… but, not so much that it’s super noticable. I’ve discussed with his audiologist if he should be getting speech services now – but, they didn’t really think it was necessary, but could be an option. So, I asked AC if he had any issues with the way he talked, and if he wanted to try speech therapy again, either through the school or privately – but, he’s not interested. Since his speech pronounciation being off is so minimal with him, I’m letting him have the option on this one.
I should mention that AC was always an avid reader… like, he REALLY likes to read. He’s always been a grade level ahead of everyone with his reading level – and I’m certain that this has really helped him in all areas academically, and in his speech. When he couldn’t HEAR the way something was suppose to be pronounced – or hear the directions clearly – he could read it. Ya know?
Deb
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Hi,
I’m so glad I found your blog. I’m in the middle of a possible diagnosis of sensorineural hearing loss for my five-year-old daughter. She failed her 5-year-old screening at her pediatrician’s office, and then presented a week later with mild SNHL at her ENT’s office. However, the audi said the part of the test (tympanogram) that determined the type of hearing loss could be wrong because my daughter kept pulling the ear plugs out. While the audi’s impression was that it is SNHL, the report said that part of the test was unreliable. So I’m hoping it’s a conductive loss. She had 35 db in one hear and 40 db in the other ear. We are scheduled for a sedated ABR in 2 weeks.
We have a long history of hearing scares with my daughter. She failed two newborn hearing screenings, then passed an ABR at two months (although she had fluid in one ear). Then at nine months we took her in for a follow-up behavioral/OAE test, which she failed. The audiologist at that appointment also said she was presenting with SNHL, but that the test results were equivocal/unreliable because she was pulling the ear tubes out. So we took her in for a second ABR, and she was found to have a moderate-to-severe conductive loss in both ears because of fluid. We met with the ENT, we waited a few months, then eventually got tubes at 15 months. She passed another ABR across all speech frequencies a month after she got tubes. At that point, I thought the scary worry over her hearing was over. Little did I know.
She has done great in all aspects of development- her speech is clear and seems right on track – no teacher has ever said anything about her hearing or her speech, and she’s been in daycare since she was four months old. And she just mastered the first phonics lesson in kindergarten according to her teacher. She also passed her pre-k hearing screening at age 4. So, I was really shocked to get this potential diagnosis a week ago. The ENT said her ears looked clear but that they had wax in them, which she wouldn’t let him extract. The audi who evaluated her when she was nine months old also said her ears looked clear at the time and was presenting with SNHL, but that ended up having a conductive loss then. So I’m trying to remain hopeful that this could also be conductive – she has had a cold for a few weeks now. And in fact this morning said that when she swallowed her ear made funny noises. However, I’m also trying to prepare myself for a diagnosis of SNHL I can tell her hearing is off right now – she seems to hear whispers only sometimes and is saying “what” a lot more, likes the TV loud.
My daughter was born with a two-vessel umbilical cord and has minor renal abnormalities, which increases her risk for a sensorineural hearing loss. The ENT just really scared me when he said she would have to get an EKG, a genetics test, and a vision test should she prove to have a sensorineural hearing loss. All of this makes my stomach turn. I spoke with him last week and he said that I shouldn’t be fatalistic or feed off of false hope, which makes sense, but I keep going from one extreme to the other. He said that there is a chance it could be conductive but also a chance it could be SN. I’m a mess right now – I keep having anxiety attacks about it. I guess my biggest fear is that it is SNHL that recently developed (very rare according to the ENT) and is going to get worse over time. He did say last week that most SNHL does not progress in kids though, but who knows, right?
I also worry about how I will explain to my five-year-old that she has to wear hearing aids, go to speech therapy if necessary, explain that she’s different. It’s just all so overwhelming, yet familiar since I felt much the same five years ago when she failed two newborn screenings. I’m just a wreck. I know I need to wait and see the results of the ABR, but I can’t help but jump several steps ahead of where I am. Any advice would be so appreciated.
Rebecca
Rebecca –
I’m sorry for the delay in getting back to you. I’ve been neglecting this blog… and, really need to get back with it. So much of what you wrote, and expressed, souds familiar. I hope you find some information and articles here that will help… I found, the more I understood, the better… and each hearing loss and situation is so different – only you know your daughter better than anyone. In my case, I found that my son took wearing hearing aids and all in stride (he was 4 then). I think, I worried more and had a harder time than he did…
One day at a time… is all you can do.
I need to go – but, will be back .. and would love to talk to you some more.
Thanks,
Deb
Deb,
Thanks for your response. I am trying to take it one day at a time, but it is difficult. At times I’m convinced it’s just conductive loss given her history of having fluid in her ears and that fact that she’s been struggling with a cold and cough for a few weeks, but then at other times I’m convinced it’s sensorineural. I know some mothers say that they “just know,” but I’m not one of them. Her hearing really seems to fluctuate to me, which I know could be her compensating at times, but other times she seems to and says she hears things that she shouldn’t be able to hear with a mild loss. I just know know. Just praying it’s conductive, and if it’s not, just praying I will be able to handle it and be a good mom to her and my other child.
But yes, I would love to talk with you more. And thank you for sharing your son’s story – it does make a difference knowing that there are others out there.
Rebecca
Rebecca –
Been a while… how ARE you? I’ve been out of the loop… but, hope things are going wtll for you and yours. Feel free to email me, or write here anytime. I plan to start keeping up with this more now.
Thanks,
Deb
Hi. I wanted to let you know that I’ve written a book that may be of interest to you. It is called If A Tree Falls: A Family’s Quest to Hear and Be Heard. There’s a lot of information about it at the website: http://www.ifatreefalls.com. Thanks so much. Your blog is a great resource.
My best wishes,
Jennifer
Jennifer,
Thanks for the heads up about your book. i checked out the website, and it really looks great. thanks for sharing.
Deb
Thank you for your story. Your story seems similar to my Haelee who is 5 yrs old. Haelee was born premature (29weeks) weighing in at 2lbs 2 oz). Haelee passed her hearing test when she was released from the NICU though her one ear at birth seemed to be smaller than the other.Since then Haelee failed her 4yr,5yr hearing test at the pediatrician and failed the hearing test with the ent as well. At this point they decided to put in tubes and remove adnoids.Haelee never had ear infections but was showing fluid in her ears over a long period of time. After the surgery at her one month checkup she failed the hearing test again.she was diagnosed with mild/moderate bilateral Sensorinueral hearing loss, as well as unilateral mixed loss in left ear (the one e that was smaller at birth). The recommendation is hearing aides in both ears.I am so upset that insurance does not cover this. I think ist absolutely insane to think this hearing loss will not play a part in a child’s learing process. It should 100% be covered. I have spoken with her school and have had her evaluated by the hearing impairment team and have not yet met with them to go over what they observed. When we get back to school after the holiday I want to meet with her teacher and the hearing impairment teacher to come up with a plan for her. One question do they consider this type of hearing loss a disability so she can qualify for a IEP? I thank you for sharing your story because we have felt very alone in this process. I am nervous that I won’t make the right choices to help Haelee. I truly think our system is broke that these children who are our future are not given the assistance from these insurance companies to pay for the lifeline to their hearing, so wrong.
thank you ,Deidre
Deidre – I am so sorry that I haven’t been keeping up with this blog. Thank you for sharing your story. I would love to get an update.
I am with you on the insurance issue. It’s insane. AC is due for new hearing aids soon – and I don’t know how we are suppose to pay for them. I usually use whatever money I can from my FSA account through work.. but, that still comes out of my paycheck… and currently is being used for braces. UGH.
Regarding the IEP plan – she can definitely qualify for an IEP, and/or a 504 plan. Please see, if you haven’t already, information on this here:
http://hearmehearmenot.wordpress.com/what-is-a-504-plan/
I hope to be on here more.. so, please, let me know how your meetings went if you get this.
Thanks,
Deb