Finding help… and friends… (who can relate to mild/moderate hearing loss)

I’ve been so busy lately, and AC has been doing so well, that it’s been easy to forget about updating this blog.  Yet, every once in a while… something, or some ONE, reminds me of why I started this blog a few years back.  This is what happened just recently when I received an email from a woman who had found this blog, and she could relate to much of it. 

Her son is now in third grade, has mild/moderate hearing loss, has not had an IEP or 504 – and didn’t seem to need one.. until now.  And, now the school is telling her he doesn’t qualify, because he isn’t failing anything…  and, that his “problems” are “behavioral” and not “hearing loss related”.   She found my website, read posts like “Mild Hearing Loss or ADD??“, “So… What’s YOUR Problem?!“, and “Acknowledging the needs of children with mild hearing loss…” – and she told me she instantly felt like I could understand what she was going through and she wanted to talk to me.   We spoke on the phone, and emailed a few times..   and, she was right. 

We have a bond.  Within a mater of minutes we had a bond.  Perhaps, it was there even before we talked…  just from her reading this blog?  The internet is amazing sometimes when you think about it…  ?? And, likewise, so is the power of  being a mother who wants to help their child, and finding another mother who can relate.   I mean, here we are..  she and I live across the country from each other, and are from completely different cultures and backgrounds…    however, the fact that our sons both have mild/moderate hearing loss sort of trumped any other differences, and we are now connected. 

Talking to her, was like traveling back in time for me almost.  Because her son is in 3rd grade now – which is where my son was 4 years ago and when he first started having problems in school.  We had to jump through all kinds of hoops before we finally were able to get him on a 504 plan, and set up with an FM system at school.  This is all she is trying to do now… and, she is hitting all the same walls I did back then. 

We spoke on the phone for a long time, and I felt like I was in a time machine – transported back to when I was dealing with AC’s third grade teacher, who insisted he heard her just fine…  and the school system, telling me that AC didn’t qualify for any school assistance or even basic considerations for his hearing loss.  

I remembered how desperate I was to find AC help, and to just understand what was happening myself.  I looked for other parents going through a similar situation and initially couldn’t find ANY.  Not one.  AC was the only kid in his school with hearing aids.  I felt like the only Mom in the world who had a kid that had mild/moderate hearing loss and wore hearing aids.  It was a terrible feeling. 

At one point, my husband took AC to a movie, and he happened to notice a woman standing in line with a little girl who was a few years younger than AC – but, she was wearing hearing aids.  My husband approached the woman, introduced himself, said he noticed her daughter wore hearing aids, and asked the woman if she would PLEASE talk to his wife (me).   She gave him her card… and we did talk… and it did help.  She pointed me in the right directions.  I also was able to talk to another man who had a daughter with hearing loss, and he was another huge help.  I think, just talking to someone who can relate was a huge relief in itself. 

I still don’t really know any other parents  in “real life” that I can get together with and have a child the same age/place as AC.  I’ve always wished AC could meet other kids that wear hearing aids and he could be friends with in real life, but this is still just a wish.  Still,  I feel fortunate to have found the resources and discussion boards online. 

Even all the information I found online  initially seemed to pertain to Deaf children, or kids who had IEP’s already…  or were somehow in completely different situations.  Hearing loss is like that..  it can be so different for each person and situation.   So many factors come in to play: level of hearing loss; type of hearing loss; progressive or not; ages; etc.   Eventually, things started coming together for AC and us, but only after countless tests, phone calls, meetings, and emails. 

When I thought about it, it all came back to me and I remembered it well.  It wasn’t a fun position to be in.  And the mother who contacted me… ??  She is still in that spot where I was four years ago.  She still jumping through the hoops and feeling the frustration. 

I’m frustrated along with her.  It’s ridiculous what schools and systems put us and our children through.  Really sad, actually.  So much boils down to money and budgets… and people who want to act (or worse yet seriously believe) that they know what your child needs are when they don’t understand at all.   

I want to be of more help to this mother.  Yet, even with my personal experiences – I’m certainly no expert.  Especially when it comes to systems in other states, etc.  So, I tried to tell her what worked for me…  I pointed her in the direction of certain resources and articles. and will continue to offer advice (for what it’s worth)..   And, I hope I am helping in some small way.  

If anyone out there knows of resources in California, or anywhere – websites, articles, forums – that would help people who find this site who are dealing with mild/moderate hearing loss  – please let me know so I can add them to my blogroll. 

So yes…  I need to keep posting here…  with the hope that this blog helps in some small way.  Maybe even four years from now, some other parent who has a child in third grade and is going through a similar situation – might stumble across this site… and know that they aren’t alone…  and that there are resources and people out there that can and will help. 

~ Deb

 PS – Happy (1 day early) Mother’s Day to all you Mothers out there who do their best to make sure your children get what they need.   You are not alone!

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4 Responses

  1. Such a relevant topic! I just attended a parent forum on Friday for parents of deaf/hoh kids where we talked about setting up a support group for parents that would be statewide here in PA. The need to connect is great but the programs aren’t out there yet.

    My daughter is 5 and I blog every Sunday about her hearing loss.

  2. Hi Joey… thanks for the comment. I checked out your website a little too and look forward to reading more there.

    I’ve tried to find a support group for parents in my area (Rochester NY) for a long time, without much luck. Rochester has a really big Deaf population… but, finding kids with mild/moderate hearing loss that are mainstreamed – is a whole different thing… It really would be great for both my son, and my family to be able to connect with other families in person, and
    regularly…

    Maybe someday…

  3. Afternoon Emma,

    I have been given your contact details to get in touch with you as I would love Caitlin to be involved in your kids clubs. But I am unaware of when or where these take place.

    A Little bit about Caitlin.

    My daughter was diagnosed with mild to moderate hearing loss at the late age of 5.
    She is now 6. She failed her newborn screening however passes one month later.

    The doctors will not admit any failure on their part, however I know in my heart Caitlin had hearing loss from birth. She could never settle as a baby and now I know why. We simply thought she was just hard to manage.
    Caitlin’s nursery school (at the end) made my fear a reality when they thought Caitlin seemed withdrawn.

    And so our journey began. After up to 6 hearing tests a final one confirmed her loss.
    We have no family history of hearing loss and so this was a big shock to me and my husband.

    She soon was finishing primary one behind her peers and got her hearing aids and fm system fitted in primary 2.
    We have now fought our way to get extra help for Caitlin. And ed psycologist report found Caitlin one year behind her peers.(school years)
    However they say it’s not due to late diagnosis.

    I now have another battle on my hands. I believe Caitlin is behind due to the fact she missed this first 5 most important years of development. Caitlin has had her aids and fm system fitted for 5 months school time. She is slowly progressing but again has no extra help in class and her teacher said progress is too slow just for a hearing loss.

    I fight for my daughter every day . She in my eyes has come on brilliantly this year, socially and academically. However not enough for the teachers. Caitlin needs one on one for proper progress to take place and I have been told this won’t happen until primary 3.
    Is there any parents out there in the same boat as us? We feel so alone and bullied by our school. How do you stay strong when they won’t give her a chance to catch up?
    Or am I mad? Should there be immediate progress after such a late diagnosis with no extra help?
    I am so scared of her falling even more behind but it’s all to do with funding.
    I would love to hear from anyone similar as I’m at witts end, should I just give up and let them take control or go with my heart?

    Caitlin often asks why no else has hearing aids except her – obviously I tell her she is so special that god made her unique and there is other children just like her. – I just want to know I am doing the right thing by not letting the teachers take control that in my heart she will progress and I just have to stay strong.

    We would love more than anything to speak to parents just like us – and for Caitlin to get to know the deaf community and feel totally a part of something.

    Sorry for the long email – I have just waited so long to have the courage to reach out for help as I am so in badly need of some advice.

    Ciar

    • Ciar –
      I’m sorry. You must have the wrong place/name? My name is Deb, and I’m not familiar with the Kids Club – maybe another person who posted here? I’m sorry this blog does not get much traffic anymore – but, you could try some of the groups mentioned in the links, on Facebook – there are several very active ones. I do get what you are saying… it is difficult for them to feel so different. As far as what the teacher is telling you…?? Is that teacher certified as a special teacher of the deaf and hard of hearing? And really trained and knowledgeable about kids with hearing loss? If not – her opinion on what is and isn’t “normal” for your child who DOES have a hearing loss – doesn’t matter much. You need to get the right people involved, and stick to your guns.

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