Marathon Training and Non-Hearing Terms

It's 4am and I can't sleep because I feel like crap.  I have a cold.  I like to consider myself more strong than weak, but colds kick my butt.  I'm thinking it's worse when I'm training for a marathon.  I'm tired from that already, so I don't have much left over to fight a sickness.

I felt a tinge of something Friday night.  On Saturday morning I woke up, met the group, and ran 18 miles.  Overall, I felt pretty good.  The course was hillier than I would have liked (but aren't they all?).  Then we went and got some breakfast.  Then I came home and weeded and planted the flower bed around the mailbox.  And that hurt.  My legs were screaming by then.

That night we went for a walk around the neighborhood with the kids.  I don't know why we don't do that more often.  The kids love it and it wears them out.  A win/win!  Harlie even wanted to walk more than usual.  We are trying to work on her walking endurance (we just started physical therapy again finally!).  And when we got the kids to bed and I sat down, it (the cold) hit me.

I have no energy to do anything.  And all I can think about is how much I'm not getting done or doing that I need to do.  How in the world am I going to get miles in this week?  Luckily, it's a recovery week, so we'll run only 12 miles on Saturday.  So, really, of all times to get sick, this is the best time.  This coming Saturday is 12 miles, the following is our longest before the marathon - 20 miles.  Then two weeks of tapering miles.  Then on November 12th, the marathon - all 26.2 miles of it.  Kinda hard to think about, really.

So, I think this will be my last marathon for a while.  I've already decided I'm not going to do it again next year.  This week alone is a perfect example of why running a marathon is too much for me.  For one, I'm sick.  Two, we have an appointment in Norfolk today to see Harlie's plastic surgeon.  Funny story... I told my night nurse that we were going to see Harlie's plastic surgeon tomorrow and she asked me what for, eye, ear?  Ha!  It's pretty comical that I have to be more specific when I say plastic surgeon.    And no, not eye or ear... jaw.  I hope Harlie has my sense of humor...

Anyway, so we'll be gone the whole day to go to Norfolk (and she'll miss school, of course).  And I can't do my long mid-week runs on Wednesdays because I'll be gone too long and will be too far from the gym to leave Cooper there while I run.  I think I have to run 9 this week.  Which means I'll have to do them on Thursday, rest Friday, run Saturday.  According to our training schedule, we're supposed to run four days a week.  I've already cut that back to three days.  And this week, I'll only run twice, and that includes my long run.  And that's if I can, considering this cold.

I'm over the pressure of having to get these runs in.  Five months of that is too much for me now.  And it would be different if I thought that running like this gave me more energy.  But the fact of the matter is that once you get up into this kind of mileage, the training drains my energy and I have very little left for Tom and the kids.  So, I just need to hang on for five more weeks.  And then it will be over.

Another reason I couldn't sleep is because I saw something on a signing website that's bothering me.  The website said that the term "hearing impaired" is considered offensive to the deaf and hard of hearing community.  And that they prefer those terms - deaf and/or hard of hearing - instead.

Personally, I've always used the term hearing impaired.  And it sounds like that's what our county uses because they call it the hearing impaired program and Harlie has a hearing impaired teacher.  And I feel like it accurately describes her hearing loss.  Here is the definition for impaired:

1. Diminished, damaged, or weakened: an impaired sense of smell.

2. Functioning poorly or incompetently: a driver so tired as to be impaired.

3. Having a physical or mental disability: an impaired child in need of special assistance.

n. (used with a pl. verb)

People who have a physical or mental disability considered as a group: a swimming class for the physically impaired.

So, what's the problem?  I see nothing offensive in that definition.  Maybe I'm desensitized because Harlie has so many issues with so many different body parts and functions.  I don't know.  But, I don't get it.

I was so bothered by it, that after I initially tried to go to sleep, I got back up to google why the term hearing impaired was offensive.  And here is what I found:

Hearing-impaired – This term was at one time preferred, largely because it was viewed as politically correct.  To declare oneself or another person as deaf or blind, for example, was considered somewhat bold, rude, or impolite.  At that time, it was thought better to use the word “impaired” along with “visually,” “hearing,” “mobility,” and so on.  “Hearing-impaired” was a well-meaning term that is not accepted or used by many deaf and hard of hearing people.

For many people, the words “deaf” and “hard of hearing” are not negative.  Instead, the term “hearing-impaired” is viewed as negative.  The term focuses on what people can’t do.  It establishes the standard as “hearing” and anything different as “impaired,” or substandard, hindered, or damaged.  It implies that something is not as it should be and ought to be fixed if possible.  To be fair, this is probably not what people intended to convey by the term “hearing impaired.” 

Every individual is unique, but there is one thing we all have in common:  we all want to be treated with respect.  To the best of our own unique abilities, we have families, friends, communities, and lives that are just as fulfilling as anyone else.  We may be different, but we are not less. 

I just don't get it.  This is the part that stands out most for me.

It establishes the standard as “hearing” and anything different as “impaired,” or substandard, hindered, or damaged.  It implies that something is not as it should be and ought to be fixed if possible.  

Who put the "standard" part in there?  Who says hearing is standard, and not hearing means substandard?  That's negative.  Not the use of the word impaired.  And her heart doesn't function like it should.  Should we not have fixed that?  And no, her hearing isn't as it should be because your ears are made for hearing.  And she's missing an entire ear and the other one is damaged, diminished or weakened.  There.  I said it.  And to try to fix that, we got her a hearing aid.  And we're going to get her a BAHA if that helps her hear better, too!

In another paragraph, it read that the term "hearing loss" isn't liked either because for people born deaf, they never had hearing, so they didn't lose it.

Look, let's face it.  Harlie was born with many birth defects.  I suppose the word defect is probably offensive, too.  The list of offensive terms is getting ridiculous.  Other words that offend some people are special (when referring to children and their needs), and normal (what's normal, after all?).  I'm not bothered by any of them.

Harlie is special.  Her body functions differently than the norm, differently than it is supposed to.  And she has special needs - a nurse and a tube in her throat in order to breathe.

I'm getting off subject.  Before Harlie, I had never met a person who was deaf, or hard of hearing.  Which, by the way, I don't like "hard of hearing".  To me, that sounds like a volume issue.  Anyway, since Harlie, of course, I've met some signing people (all hearing) and I had the pleasure of meeting a deaf couple this summer.  I signed a little - an interpreter was there and she introduced us.  I was so proud of the signs that I knew.  And I was so proud that out of all the people that were there, I was one who knew some signs.  Then I heard that there is a sign for "stupid hearing people".  Now that's offensive.  But, okay, fine.  I felt pretty darn stupid when I was trying to sign with that couple.  But I would have felt the same kind of stupid if I were trying to talk to someone who speaks spanish.  I don't know that language, either.  Doesn't mean I'm not capable of learning, though.  But, whatever.

I think what bothers me most is that I've been using a term for years - one that I am completely comfortable with - that's considered offensive by a whole community.  I don't want to offend anyone.  But I feel this need to help other people understand Harlie's issues.  And I feel that hearing impaired accurately describes her hearing loss.  And it is a loss.  I don't care if she was born that way or not.  And her life is more difficult because of that loss.  Trust me.  I have seen her struggle in class.  The loss of normal hearing is having a profound impact on what and how she learns and how she acts.

And what kind of mother would I be if I didn't try to do everything in my power to help her???  I keep going back to that sentence -  It implies that something is not as it should be and ought to be fixed if possible.

Her heart.
Her jaw.
Her right lung.
Her butt.
Her spine.
Her inability to eat.
And her hearing.

All things that are not as they should be and ought to be fixed if possible.

She is not substandard.  And she is not less of a person because of her losses.  I don't see how anyone could think those things - about anyone.  And I don't see how the term hearing impaired implies any of those things at all.

So, now I'm left wondering what I do from here?  Do I continue to use a term that's known as offensive to people that I don't even know?  Or do I start using Hard of Hearing (which I don't like)?  And frankly, I'm pissed that I even have to think about this.  Like I don't have enough of my mind!  Sadly, it seems that a website that is meant to offer support, only added to my stress and worries.  I'm sticking with what I'm comfortable with for now.  Harlie is hearing impaired and I think she is an extraordinary little girl.

Thanks,
Christy

It's Official.

Harlie has moderate hearing loss.

There. I said it.

I am definitely bummed. Disappointed. Frustrated. Ugh.

I see the good things. We know. Therefore we can address it appropriately. And it certainly explains our difficulties with her behavior. And they do make hearing aids. And it's moderate loss - not complete loss. I am thankful for all those things. Trust me.

But c'mon! When am I going to stop learning about stuff that doesn't work right? And now I have to learn a whole new body part and all the details that go into how it is supposed to work, and why it doesn't work with Harlie. And there will be more appointments, more specialists, and more equipment. Super.

Yes, I'm whining.

For some reason, I really believed that she would get the tube, and that her ABR test would say she was perfectly fine. I really did.

But I guess that was more hope than belief.

So, here were/are my questions...

How could she pass the newborn hearing test with moderate loss? The newborn screening test is supposed to catch that.

Did they do the test - or was that incorrect information? Those first weeks were very busy and very crazy. Maybe it just got lost in all the flurry of tests and surgeries?

If they did it, was it done correctly? If so, did she have good hearing then, and it progressively got worse? Why? Could it continue to get worse leading to complete hearing loss?

Is this loss conductive or sensorineural? Or a little of both?

Most of my questions will never be answered. Nothing new, really. That seems to be the case with so many things about Harlie.

The audiologist that performed the test will get me a full report soon. Then I can read more about the specifics of her hearing loss. I think she said that she showed some sensorineural loss (which is damage to the nerves and is a permanent loss). But, I can't remember exactly what she said. We covered a lot of information in a short period of time. The report will really help me process all of this.

The good thing is that she said a regular hearing aid worn on her right ear should help her a lot. We'll have to get her a BAHA on her left - and we have to wait till she gets bigger for that. They anchor it into the skull, so the skull has to be a certain thickness.

So, I read this and wow, is it easy to get depressed over this!

But I won't. I can't. I need some time to process it, of course. Learning that your child has a disability is never easy. No matter how many things I've gotten over, I don't think it gets any easier. But, she's been receiving speech therapy since she was 14 months old. And we started using sign language at 16 months old. So, it's not like we haven't been addressing her language and communication challenges.

I will say that my faith in her intelligence is restored. With all of the issues we've had with her not cooperating, following instructions, etc. I was starting to doubt her capabilities! But, the fact that she's had three wonderful speech therapists in her three years and we didn't realize that she had hearing loss, speaks for her intelligence. She's been able to figure things out using other means, keeping the fact that she couldn't hear under the radar.

I think part of my struggle with this news is that I thought all along that she had one good ear. I can't tell you how many times I have thanked God that she could hear. Even after her ABR test last summer (which also showed moderate hearing loss - but the audiologist said that if she had an ear infection, that could affect the results and she did have an infection and a granuloma had grown in her ear canal - so OF COURSE that was the reason for her poor hearing results). If I had gotten her another ABR test after her ear healed and a new tube was placed, we would have known sooner. She could have gotten a hearing aid MONTHS ago and who knows where we'd be now.

I don't know what she hears when we speak. And that bothers me. What do we sound like to her? Do we sound like the teacher in Charlie Brown? What does the world sound like? What does music sound like? Does she even hear the narrator in Curious George (her absolute favorite tv show)? So, now I don't know what she sounds like, and she probably doesn't know what I sound like. That makes me so sad!!!!

Hopefully a hearing aid will help all of this. Maybe that will make me stop being a big baby about this. I just hate that I didn't know. And when given a clue - I didn't believe it. Granted, I think I had good reason not to believe it. But, still.

Here's my post from a few weeks back when she had the regular old hearing test that showed moderate hearing loss (that I still didn't really believe) with a video to show what it might be like for her.

Oh my. I just looked up my old post from when she had the ABR done last summer. It said she had MILD hearing loss. And that was WITH a blockage in her ear canal! What does that mean???? Does that mean that her hearing loss has been progressive?

Oh no. I gotta stop thinking about this for a while.