Friday, November 13, 2009

What my mom has done for me (This is for the parents...)

I received the following very sweet comment on my blog on Thursday.

"I've been reading your blog for a couple of months now. I must say that you are both a very good and a very entertaining writer. So if that medical career doesn't work out for you(which I'm sure it will), I think writing might be a good, albeit not very well paying, backup.


Anyway, I just want to thank you for your blog. It has really helped me cope during the past couple of months. While I am a long way from 15 (41 to be exact), I read your blog because one of my daughters (she's five) was just diagnosed with a mild unilateral hearing loss. Currently, she still has tons of usable hearing - her loss is at 35 db on the 2000 and 4000 Hz frequencies in her right ear, with the two lower speech frequencies still testing at 10 db. Her left ear tested at 10 db across all speech frequencies. So I feel fortunate that she still has so much hearing, and I hope and pray that her hearing remains stable.

But as you know, that's pretty hard to predict even with all of the anxiety-inducing testing that accompanies a SNHL diagnosis. So your blog has shown me that no matter what happens - even if she loses most of her hearing and will require CIs, she will still be able to succeed at school, have lots of friends, and have great aspirations like becoming a doctor! So thank you for that - it means a lot to a scared mom. I would also appreciate any advice you can give me on how your mom has helped you over the years cope with your hearing loss aside from just being a great mom and advocate for you. I'm new to this, and I appreciate any advice I can get.

I'm going to keep reading your blog - I learn a lot about hearing loss issues, and it's just wonderful to get a peak into the psyche of a 15-year-old girl who loves her life and looks forward to a great future while dealing with hearing loss, CIs, and the trials of being a teenager in general.


All the best.
Rebecca"

First of all, thanks Rebecca!
It's these kind of comments that I really appreciate, and they make me want to keep writing. So, Rebecca, (and all you other parents) this is what my parents have done for me that  believed has helped me immensely.
 
Teach by example
 A huge part of having a hearing loss is learning to be an advocate for yourself. When I was younger (toddler age to early elementary) I was painfully shy. I never felt comfortable explaining my hearing loss or my needs to people. My mom, on the other hand, was always fiercely determined to make sure I was given equal access to everything we did in school and elsewhere. She would always explain my needs and equipment to all of my teachers, from the very day I started wearing hearing aids. While I wouldn't say a word, my mom would always make sure I was there when she had this conversation. She'd tell me that she wouldn't always be there to advocate for me, and that if I didn't make my need important, no one else would either. I listened closely to what she would say and how she would explain things, and now, when I am explaining my hearing loss to people I use a very similar dialogue that I'd heard my mom give my teachers year after year.
 
Don't lower your expectations or place restrictions
My parents have always told me that as long as I did my best, they would be happy with me. However, they did not have any lower expectations for me than my older (hearing) sister, and never really let me use my hearing loss as a crutch or excuse to not do well on something. (Unless, of course, it was due to me not hearing the information, which would bring me back to #1.)  They also never told me I couldn't do anything because I couldn't hear. For example, when I started middle school, we had to choose whether to do band, choir, or orchestra. I changed my mind three times (I can't imagine how different things would be if I had chosen choir!), but my hearing loss played a minimal factor in this decision. I was never once told by my mom, "Maybe you shouldn't take the violin-what if you can't hear it?" The same was true when I had to decide when to take a foreign language (starting in 7th grade or 9th grade) and what language to take. I chose to take French, purely because I liked the way it sounded. I was never told it might be better if I waited two years so I could take ASL instead.
 
Open the lines of communication
One thing my mom always told me was not to be afraid to tell her anything. Whether it be a broken FM, a teacher who wasn't quite doing what she was supposed to, or a kid who just didn't "get it", I knew I could talk to my mom about it. Not only that, I knew she would help the situation. One important, I must say, is that if your child comes to you and says that her FM has been broken for the past two weeks, don't yell at her for waiting so long to tell someone. I had teachers who did this, and I would always think they'd be mad at me, so I just wouldn't tell them at all. Instead, thank your child for telling you, while nicely encouraging her to tell you sooner the next time it happens.
 
Follow your child's lead
When I was about five, my mom asked me if I wanted to go to some program and meet other kids who were "like me" and also had a hearing loss. I cried and cried, saying that I wasn't different than anyone else and did not want to go. My mom never pushed the issue, and I was perfectly content with not being with other who had hearing loss for years. As I got older and into my teen years, I became more aware frustrated with certain issues that I felt like my hearing peers couldn't relate to. I began asking to go to conventions, camps, and programs for other teens with hearing loss. While these weren't always the most fun or interesting things for my mom to attend, she understood that I needed to interact with others who could relate to me hearing- wise- but only when the time was right for me.
 
I hope this helps some of y'all out there. I will also ask my mom if she has any advice that she'd like to share.
 
Thanks Mom, for all you've done over the years!

11 comments:

  1. Very good post. It does reflect my past (i am now 32 and little more than a year post implant) while growing up My mum always made sure I get everything I needed, and never let me to have the "special treatment". Now days I keep reminding the bosses at work I can do this/that but they always made sure I have a buddy with me if I go somewhere solo for their "health and safety" not my benefit, they know that I am capable of working in certain areas solo but what will happen if the alarms goes off and often I laugh with them when they gave me the phone and forgot that I cannot use it but will relay for me! They treat me no different to other people. I also am in college and school to become Learning Support Assistant so I can help with teachers of the deaf at school and so far I love it, the kids adores me because they can look up to me... and think yeah she can do this so can I.

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  2. And also I did french at school!!! :-)

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  3. This is truly a fantastic post. You have some very good points there. Kudos to you and all the moms (and dads) out there who are trying to raise a deaf child the best they can.

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  4. Charlotte- It sounds like you work with a great group of people/bosses! What is your current job? I bet you will inspire so many of the kidsLearning Support Assistant.

    Kristi- Thanks :) I'm pretty sure I left a comment on your blog at the exact same time you left one on mine..creepy!

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  5. Hi PinkLAM,

    Thanks so much for this post! I've printed it, and it's become a part of "the file" on my daughter's hearing loss. I especially appreciate the advice about following her lead on social activities and not lowering my expectations for her. My mom instinct naturally wants to protect her even though I know she, just like any other child, needs to takes risks. I really appreciate your addressing my comment so thoroughly. So thank you again. And if your mom does have any words of wisdom to share, I would love to hear her perspective on how she did such a great job with you too.

    Hope you're having a good weekend!

    Rebecca

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  6. Rebecca-
    Anytime! I'm always happy to answer any questions that you have. As far as the instinct to protect- I (as well as my mom) can definitely relate! My mom still instinctively grabs for my hand when she's with me and I'm crossing the street. I quickly shoot her a look, and grab my hand away!
    I do understand where she's coming from, though. There was apparently a family tragedy many years ago involving the a car and the death of the only other deaf person in our extended family. I don't really know any details about that, except that I am now extremely careful when crossing the street.

    My mom said she would be more than happy to share some of her own advice. We've been actively preparing for an IEP meeting set for tomorrow morning that is not anticipated to go well (wish us luck!) but she will add a few pointers once we're done dealing with the whole school-district-not-cooperating thing. Hopefully, you will never have to deal with that! I'll probably do a nice, long post about that once the whole thing is over and done with.

    Hope you also had a good weekend ;)

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  7. Thanks again, and thanks in advance to your mom! I hope the IEP meeting went better than you anticipated and that you and your school are on the same page with everything.

    All the best,

    Rebecca

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  8. This is a great blog post for parents of deaf/hoh kids!! My mum didnt treat me differently to my brother and sister. In high school me and my siblings were expected to do well, my parent didn't say like "it's okay to get low grades because you're deaf"
    they said and believe I was just the same as my siblings but just deaf, yes it was hard being deaf, but that was not a reason to be treated differently. Even at school I was still getting A's and B's in classes like everybody else. They knew my true knowledge and did not treat me differently or give me "easier work".
    My mum has been great, she has in the past, made sure I got what I needed.

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  9. What encouraging words! And you're a great writer. Not "a great writer for a deaf person", a great writer.

    I have a HoH son, 11 years old, and am also glad to read about how you're doing. It's a fine balance as parents to know how much to do for your kids and what they need to do for themselves. It's interesting to read about you going through that transition, and taking up more of the responsibility as you mature.

    Keep up the good work :0)

    Julie, aka "Mama Grasshopper"

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  10. Melissa- Thanks! It's always interesting to hear about the experience of others growing up.

    Julie- Thank you for the compliments! It is very much appreciated! The transition is an interesting one- part of me wants to grow up and get out on my own, and other part of me feels like everything is moving too quickly! I'm sure any other teen-hearing loss or not-can relate. My parents have mixed emotions too, they want to give me independence, but it's hard since I'm the "baby" of the family!

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  11. I just started reading your blog a couple of days ago. When ever I start reading a new blog, I always start from the beginning. I don't have a hearing loss (other than very minor that I've just noticed recently) but I do have a disability.I started finding blogs when I was reading about different types of hearing loss. I also write my own blog and I really like the way you write and how you don't let your hearing loss stop you from doing anything. I love that you are not scared to advocate for yourself. I think you are a lot like me in how you handle that kind of stuff. I don't know if you like reading blogs about other disabilities but I would appreciate if you would check mine out. Either way I will continue to read yours.

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