About this blog…

My son, AC, is now 18 years old.  He’s wonderful.  Bright.  Talented.  A great big-brother and young man.  He also has a mild-moderate hearing loss.  This blog will focus primarily on that one part of his life:  mild-moderate hearing loss.

AC was probably born with mild/moderate hearing loss, but we didn’t know about it until he was 4 years old. Lots more about this on the “background page“. I started this blog when he was 11 years old… and much of the content is pertaining to previous years when we first found out AC had a hearing loss, and also the challenges we went through with school and getting him set up with a 504 plan, etc.  I do not post in this blog very much anymore, and it does not get a lot of “action”.  However, I leave it up with the hopes that it may still help others who are looking for information.

Years ago, when I began looking for answers, I was surprised with the run around I felt like I was getting.  I really had trouble locating recent, and relevant information on mild-moderate hearing loss.  Specifically pertaining to a child, and regarding educational issues.  There seemed to be a lot of info for the Deaf community, that used ASL, etc.,  but, nothing specifically that pertained to my son’s mild-moderate type hearing loss – where he did not know/use ASL.

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.

Eventually, we found some really great resources, and really useful advice from some really wonderful people.  I don’t know how I would have managed if I hadn’t found those.  Even with the support I found, there were countless meetings, evaluations, phone calls, emails, and hours and hours of research  – trying to gather information and get questions answered.

So, I started this blog with the hopes that it might:

  1. serve as a resource to others in similar situations
  2. be a support group for myself and others
  3. provide a means for me to log things
  4. … and, possibly contribute in some way  – to help break down the stigma and labeling often attached with hearing loss. 

;)Deb

AC. ME, & KC with DC in front... =)

AC. ME, & KC with DC in front… Going back a few years.   =)

19 Responses

  1. Hi Deb, thanks for passing by my site and for the inspiring words. I know now how it feels to be so alone, and I value your suggestion about getting myself informed. I just hope that here in our part of the world, I will get the physical resources to successfully go through this journey. I thank God for people like you who share their stories to inspire others like me who is just starting on this road. Will keep in touch. God bless you and your family.

  2. Maia –
    Thank you, also, for stopping by – as you can see I’m just getting this blog going. I think you are my first real “commenter”. If I had a gold star and a cookie, I’d give them to you! ;)
    Take care,
    debcny

  3. Deb,
    Just found your blog through Growing Up Hard of Hearing in a Hearing World. You have a great site! I have a moderate-to-severe bi-lateral sensorineural hearing loss, am a mother to 2 boys, ages 16 and 20. I am also a certified Special Education teacher of students with mild/moderate disabilities. I am thinking of doing another blog with my hard of hearing experiences. I found many resources for the deaf, for those with cochlear implants, or the aging population, but not much for those who are hard of hearing. Thank you for sharing your journey!

  4. Hi Frieda =) thanks for the comment and visit.

    That’s great that you are a Special Education Teacher. I’m sure so many kids can benefit from your personal and professional experience.

    Yes – I had trouble finding info for hard of hearing also at first. I’m glad to share the good resources I finally found on here.

    Thanks agian,
    Deb

  5. Thank you for your blog! God Bless! I do feel alone. Our 8 yr. old son has genetic, mild to moderate bi-lateral sensorineural hearing loss. He has also had so many ear infections, it was not discovered that he had a genetic loss until he was age 7. That is when he got hearing aids. All his teachers from Pre-K to now describe him as “different” as he is academically strong but struggles socially in mainstream classrooms. He does make friends informally in the neighborhood. Some teachers expect the hearing aids to work magically (like eyeglasses) -all clear no more troubles! Last year his teacher thought he was autistic-it was ruled out (laughed at by all who KNoW him, including his pedaitrician) and this year (2nd grade) they think he has ADHD possibly-has many of the behavioral signs. I almost belived it, but I truly believe it is fatigue from the effort he puts forthe to listen all day! My son tells me he is tired, and he often looks tired. If the school can’t take him out of anoisy 20 student class, I may homeschool him next year to save his health and self esteem. He seems so down on himself since there are a lot of negative comments about his behavior, though, honest-he is a good, conscientious kid! The school sent him now for speech-his therapist says he has a remarkable work ethic in Speech, for sounds he can not pronounce or hear, but they say he hears fine with aids, well enough, as well as kids without hearing loss! I am really looking for support in the Buffalo NY area. My son has no other friends with hearing loss or aids, and he feels very alone and his teacher thinks he is misunderstood, but I think she even does not grasp how hard it is for him to stay focused in a regular classroom! Thank you, again, for this post! At least i know I am NOT alone, even if it feels that way now..hopefully, we can help his educators understand and find support from people, like him, caught between two worlds!

  6. Kris –
    Hello and welcome. I’m glad you found this blog. Hopefully, some of the links and articles, as well as my own experiences, will help serve you in some way. I can relate to how you are feeling and feel your frustration. Anyone who says your child hears “as well as kids without hearing loss” is so wrong and putting undue blame on your son.

    Is your son using an FM system? I highly reccomend one if not. Does your school have an audiologist or teacher for deaf/hoh kids? Our district has ONE – and I never knew they existed til I practically hunted them down, but once I knew about them, and vice versa, their help has been invaluable. The teachers would LISTEN to them, when they didn’t want to believe me about things.

    You might want to check out specifically the following links:
    https://hearmehearmenot.wordpress.com/2008/11/14/mild-hearing-loss-or-add/

    and

    https://hearmehearmenot.files.wordpress.com/2008/11/in-class-hard-of-hearing-children-face-misunderstanding.pdf

    It’s easy for people to misunderstand how significant mild-moderate hearing loss is for a child in school. Some things I didn’t know, but found extremely helpful to learn were info in the above links as well as some key facts like:

    – Hearing aids are NOT like glasses… in that they don’t “correct” or “fix” the childs hearing. They make some things louder… but, they never make it the same as a hearing child’s hearing is. The sounds will still be distorted and difficult to hear frequently.

    – Background noise makes a ton of difference. Hearing aids amplify ALL sounds.. and whatever is closest (like another kid talkin, or fan, or A/C) can easily drown out a voice that they are trying to hear.

    – Hearing Aids have a mic that only pics up about a 8-12 foot radius. They don’t amplify any sounds that are out of range. So, scream all you want.. if you’re in the next room or across the yard – they aren’t hearing you most likely.

    – Hearing loss also factors in how tired the child is, how distracted, etc. Just because they hear you well one time that you walk up behind them and talk, doesn’t mean they always will. Often, whatever they are focusing in on, is what they are hearing… and all else is tuned out. Thats why it’s important to have a child’s attention, or give visual clues to get their attention BEFORE talking.

    – Focusing so hard to hear IS tiring… draining on a kid. I don’t know about your kids, but my kids don’t function as well when they are tired.

    – They can easily miss parts of converations when people interact because it’s hard to switch from one focal point to the next.

    and my favorite thing I learned, was that you CAN’T ask a hard of hearing kid if they heard everything. They will most likely say YES – because if they didn’t hear it… they don’t KNOW that they missed it. It’s not just a “self-advocacy” thing, or speaking up… it’s often just plain they didn’t hear it.
    See: http://www.audiologycentre.com/child_faq_management.htm

    By the way… I’m not too far from Buffalo… I’m in Rochester.

    Deb

  7. As I sit here and read your blog, tears are streaming down my face. I have two boys, one is 3.5 and one is 11 months old. T, my baby was diagnosed with mild-moderate in both ears. I guess my husband and I are in the denial phase.

    I just don’t believe it and I’m not sure how to get my head around it, he is ahead of the milestone markers and seems to hear everything….I just don’t understand how he has a hearing loss.

    We are considering waiting to get him aids, I guess we figure why rush? But after reading your blog—I feel like dragging my feet is not the right thing to do. I would love a chance to talk to you or any moms you know in my same situation.

    I know you are busy, so I totally understand—thank you for the blog :-)
    Kelcie

  8. Kelcie –

    Hello… and welcome. I am glad you found my blog – sorry it made you cry – but, glad you are looking into what “hearing loss” entails. I wish I had known a lot more about it myself, a lot earlier on.

    I know how you feel… I do. …And while I know how you are worried and wanting the best for your child – I also know that a child can have hearing loss and still thrive. My son is 13 now, and doing excellent in all areas. He plays cello, guitar… baseball, track & field… gets good grades… scouts… and is a “typical” teenager in every way… he just does it all with hearing aids.

    If he wasn’t using his hearing aids, or the FM system at school – that probably wouldn’t be the case. He’d be struggling much more than he needs to. However, those adjustments, once implemented and accepted by the ones that really matter (himself, our family, his teachers), are really not that big of a deal to us anymore. His hearing loss is a small challenge in the grand scheme of things when you really think about it. However, it IS something that needs & deserves consideration – and the more you know about it, and deal with it – I think the better off your child (and you) will be.

    Now – we didn’t know he even had the hearing loss until he was almost 4. As you may have read – that certainly wasn’t ideal either. At least you will know from the beginning things I had no clue about….. When I think about the unheard “I love you’s”…. and the frustration involved that came with not understanding – it still hurts me (see: https://hearmehearmenot.wordpress.com/2008/11/08/silent-whispers). You won’t have to face that…. You can make sure your baby gets what he needs, whatever that might be (because all hearing loss is NOT the same) as soon as possible.

    So – please – keep reading and talking to people… My blog doesn’t get a whole lot ot traffic/interaction – but, I have a lot of resources listed to the right that you might find interesting and helpful. Of course, I would also be happy to talk more with you if you like…

    Take heart.. and take care…
    Your beautiful baby is fine – and will be even better because you will make sure of it.. right? right!

    =)
    Deb

  9. I am glad to have found this site as well. My babe must be about the same age as Kelcie’s above. He is now 12.5 months. We have been struggling to get him to keep his hearing aids on for a few months now. We are trying a headband unit on loaner currently (bone conduction) but it is so difficult to battle Josh each day to keep his hearing aid on–sometimes it is just easier to fall back into denial and tell myself that he really doesn’t need it. Thanks for giving me renewed energy for the “fight” tomorrow.

  10. hello motheri =) –
    How are you doing with your little guy? I would imagine it would be tough to get little hands to leave those alone! We didn’t have to deal with that, because we didn’t know about AC’s hearing loss til he was a little older – so, I can only imagine. I also imagine it’s well worth the efforts.. but, would love any advice you might have for any visitors on the subject. Thanks and take care.

  11. Deb,
    I switched my blog over to a more static site for hearing loss resources. Just thought I’d let you know!

    I’m magicearkids.org now.

    ~Joey

  12. Love your blog! Can’t believe I only just found it. I have 2ndaughters, (2.5 and 5 years) with bilateral sensorineural hearing loss. both mild to moderate. I am bound and determined to get them on an IEP. Both are doing “well”. I often feel people don’t take the disability seriously and feel people think I make a big deal out of nothing. But, i know it IS something!!!!

  13. DMS – I’m glad you did find the blog – but sorry I haven’t been keeping up with it as much lately. Still, there are a lot of good articles and information on the right tool bars. You are right to not let folks who don’t really know about hearing loss tell you what is a “big deal” or not. It’s easy for them to think this, when they don’t understand. You, as their mother, know better – and, you can help educate them as well. And, if they simply don’t believe you… well, it’s not really up to them… there are laws and systems in place that are on your side. Oh, they aren’t always easy to navigate – but, they are there.

    AC does not have an IEP… he has a 504 plan. This has worked well for us, once it was in place anyway – but, I do think I could have got an IEP if I really wanted to. This page explains more about that:
    https://hearmehearmenot.wordpress.com/what-is-a-504-plan/

    You might also find some of the articles on the right, and the following posts helpful:
    – Is Child with Passing Grades Eligible for Special Ed Under IDEA?
    (https://hearmehearmenot.wordpress.com/2010/05/11/is-child-with-passing-grades-eligible-for-special-ed-under-idea/)

    – Passing grades do not disqualify a child for special education services
    https://hearmehearmenot.wordpress.com/2008/12/16/does-your-child-meet-the-legal-definition-of-child-with-a-disability/

    – Mild Hearing Loss or ADD??
    https://hearmehearmenot.wordpress.com/2008/12/16/does-your-child-meet-the-legal-definition-of-child-with-a-disability/

  14. Finding this blog is absolutely perfect timing. My son, like yours, was diagnosed with bilateral SN mild/moderate hearing loss mid-high frequency (cookie bit pattern). The diagnosis was a shocker at age 5.5, he spoke early and pretty well. We got hearing aids, thought they would be the answer, only to find out that if he was in the back of the classroom, he was still missing things. Enter the suggestion FM system, we were able to get a loan one to try and seems to be helping. I should add that he and older son are at a parochial school. First time when I had found out that my son had a hearing loss, I had contacted the local school district only to find out that they would not help him. This last summer I pushed it again and was able to get him evaluated for IEP (services, use of FM system). They said he qualified but didn’t feel that pulling him out of school at this point would benefit him. So then we didn’t qualify and they wouldn’t provide an FM system. So we either have to push the envelope or purchase one out of pocket. They all had agreed he should have one. I am going to read through your blog, looks like lots of good info. I have no idea that this was as complex as it is and we are learning as we are going.

    I just do not want him falling behind or doing poorly in school. He is a pretty smart kid, especially once he hears things correctly and gets it.
    His teachers and the evaluation team observed that he looked around a lot…I just don’t want the ADD or ADHD reasoning brought in to this picture. His behavior does not fit itI think it is more of a coping skill he has developed when he wasn’t hearing everything.

  15. The looking around is definitely a coping skill. He’s checking to see what others are doing.. etc. Or, if he isn’t hearing well – it is easier to daydream and not pay attention too.. Lots of info on that here: http://www.healtharticles.org/adhd_add_hearing_loss_071304.html

  16. Hi John, What’s up? =) Deb

  17. Hi Deb,

    I am Anna. I also have a child who happens to be deaf. She is just 3 years old. I want to get connected with a lot of parents who are raising deaf or hard of hearing kids. I also have a blog and a website that my husband and I created so we can create a little community, helping each other and sharing tips, support and empowering one another. Decibels of Hope, is a new community and someone like you have experienced raising a teener will be really inspirational for most of us.Would you like to share your story to our small community? Please visit our site sometime or email me if you are interested to share some tips.

    Thank you so much,
    Anna

  18. Woh I love your posts, saved to bookmarks! .

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: