it has been a while...

...since I've last posted! I'm sorry! (to the few ppl who actually read this).

It has been BUSY here. The day to day life with 3 kids and getting ready for Christmas is enough to keep anyone busy. But, we've also been busy with other things that most people don't deal with.

Our FABULOUS homeschool teacher comes once a week. She's been teaching me about deaf culture. She works with the kids...she even brings toys for James :)

On Thursdays we have Audio-Verbal Therapy. We've just started. We have  a LONG way to go. We need to get Audrey "listening" again. She can hear some things with her hearing aids but her brain isn't responding to the sounds normally. Basically, she's checked out. She has become so used to NOT listening that it is an unnatural thing for her brain to do.  I've noticed this. That is why when someone says "HI AUDREY! How are you?" Audrey will just stand there and stare at me or look around and not respond. She's not being rude. Her brain isn't responding to the sounds. Anyway, apparently there is a way to teach her brain or train her brain to become better at "listening".

I've accepted that she'll never be "normal" or "average" but I HATE when other ppl expect her to be so. For example: We were at a store. Cashing out. The cashier says to Audrey "Hi. How are you today?" Audrey just stands there. the cashier proceeds to say "What? Cat's got your tongue??!?"

I said "no. Actually, she's hearing impaired" (I should've said deaf cause I now know that "hearing impaired" is highly offensive to deaf ppl...who knew?!)

Anyway, I just can't stand how people look at my daughter when she doesn't act "normally".

OK, back to updating.

On Monday we met with Audrey's Hearing Resource Teacher. We reviewed Audrey's audiogram from Sick Kids. Her hearing loss has progressed to profound in some frequencies.  Soooo shocking and not at the same time. I've noticed that her hearing is worse. She can no longer hear me speak without her aids.

In leiu of a Christmas Concert, her school had an advent mass. That in itself was a disappointment. I've been looking forward to her JK Xmas concert since her original birth day ;) Anyway, Audrey looked pretty but her disability was on display. I'm sure we and maybe a few others were the only ones who noticed since every other parent was only looking at their OWN kid. Nonetheless, it was a first for me. Seeing my kid on "stage" side by side by side by side hearing kids.

This post actually seems like a downer post. But I'm not feeling really down. I guess the facts are depressing but my girl is still freakin' awesome. And SO smart. I swear, the reason that she is deaf is because she'd be too smart if she had all of her senses ;)

OMG someone is reading this!?!

WOW! surprisingly I rec'd a fb msg from someone who has been reading my recent posts. I can't believe that I have an audience (albeit, small).

When I write my posts, I tend to write as if I'm talking to myself or writing in a journal.

I write things that I will want to read in a year (or more) from now. I NEVER imagined that anyone would continue to follow this blog. Somewhat flattering. It makes me feel happy to know that someone *might* learn something about the deaf culture/community by reading my ramblings. I truly wish for the general population to become more educated on this.

Anyway, here's a shoutout to my 1 follower :)

acoustics

Whenever I hear the word "acoustics" I always think of concerts or live performances. I have never even considered acoustics in the home.

Our home is THE worst in terms of acoustic for a deaf/hard or hearing person. It is TOTALLY open (concept) and has hardwood & tile throughout. A BIG problem for hearing aid wearers. Yet another reason for me wanting to move. (the other reasons aren't really valid).

I'm not sure how we're going to be able to deal with this challenge. We can't afford to move and we can't really put walls up and carpet throughout this house. Hmmmm...I guess I should buy a lottery ticket. I think that we're due for some good luck ;)

PALS

Today the kids and I headed up north to attend a PALS (play & learn seminar) where the kids get to play... supervised by teachers (of the deaf) and the parents go to a workshop on some aspect of parenting a hard of hearing child. Today's topic was "transitioning to school". Even though Audrey is already IN school, I found this workshop to be extremely eye-opening. I had no idea of how little I knew! (I swear I've said that before). I really need to start being Audrey's advocate in the schools. Yes, Audrey has a hearing resource teacher. But I have NO idea what they are teaching her or how they are helping her to "access" the curriculum. She cannot access the curriculum in an auditory way so concessions need to be made. It is great that she has one-on-one time with a special needs teacher, but now I need to think about what she is missing in the classroom. The leader of this seminar informally suggested that we exclude french from her curriculum. If she cannot keep up with the english language, it might not be smart to introduce a third language, since ASL will be her 2nd language. ASL=American Sign Language

I was concerned that Audrey wouldn't be able to achieve her OSSD without french credits, but I was assure that she would be able to earn other credits that would allow to earn her diploma and attend post-secondary school if she chooses to.

Hmmmm...so much to think about. So much I had NOT thought about.

First thing I did when I got home from this workshop: called the school.

We have a lot of work to do.

Audrey & I have casually been learning some simple signs (Mommy, Daddy, Eat, Please, Thank-You) and today we worked a little harder on it. It is HARD! My hands don't seem to want to move the way that they are supposed to! And not fast enough either! lol. I wonder if I will read this post in a few years and laugh because I will become an expert signer :)  I would actually love to be an interpreter. Those people are SO special. It is such a gift to offer a deaf person. I just have no idea how they do it!

Ok. Back to this PALS thing that we went to...one of the teachers asked me if my children could sign. I felt kind of dumb (bad joke) because I had to say "uh, no...we don't know anything about signing". ALL of the other kids were able to sign. Even the 11 month old baby could sign!  Clearly we are newbies at all of this!

Side note (not related to today): It bothered me when I was told that Audrey was a "late diagnosis" child. It made me feel like I should've brought her to the doc sooner :(

Myth

This is from the book I'm reading: Starting Point - A resource for Parents of Deaf or Hard of Hearing Children from the Canadian Hearing Society

"Myth - Hearing aids completely correct hearing loss.

Hearing aids are assistive devices which improve hearing for some individuals. Unlike glasses that can restore 20/20 vision, hearing aids do not restore or correct hearing. Hearing aids amplify sound. A hearing aid may enable a person to hear someone's voice, even though she may not be able to understand distinct words. Just because someone wears a hearing aid does not mean the person hears normally."


Alleluia!!!! I wish that I could tattoo this on my forehead! I'm so sick of trying to explain this to everyone who learns that Audrey wears an aid. I know that I can't blame ppl since they are simply not educated about hearing aids, but still, this is definitely the biggest pet peeve for me!

Deaf community politics?!

I had NO idea that there were politics involved in the deaf community.

It turns out that the way that a deaf person chooses to communicate is just as controversial as attachment parenting vs. cry-it-out.

I've learned that there are 2 ways that a deaf person can communicate. With their hands or with their voices. I honestly never thought about judging someone based on the style that they wish to communicate with their child. Who cares!? Ugh. It just goes to show, no matter WHAT decision you need to make, there will be someone around the corner criticizing your choice.

I understand why someone might not want to aid their child. Fine. I also understand why someone would choose aids. I just don't understand why people feel so strongly about other people's decisions.


Ok. I actually have something positive to write about :)

As sad as this whole journey is and has been, I have met some pretty incredible people that I would not have met if Audrey had remained a hearing person.

The lady who fitted Audrey for her aids was absolutely incredible. Her daughter had Audrey's type of hearing loss and is now profoundly deaf. I think that this lady could really relate to us and so she treated us extra special ;) probably not. She's probably just an amazing person and treats everyone with such empathy and compassion.

There is a lady who has 2 hearing impaired children. Without even meeting me she helped me get through those first few days/weeks post-diagnosis. She also pointed me in the right direction to resources that will help Audrey tremendously. Her daughter is Audrey's new bff. Imagine how great it is for Audrey to have a friend that has matching hearing aids :)

Audrey's hearing resource teacher gave me her home phone number. nuff said.

The ENT at Sick Kids was amazing. But, I kinda expected her to be ;)

We are involved with the Home Visiting Outreach Program. The co-ordinator and our teacher aren't only really nice people but they are also really good at what they do!

I just can't believe how many people (strangers even!) are helping us. I used to feel so alone. Now I feel like it isn't just me who is working to help Audrey.

wah wah wah

So, we had ANOTHER appointment today, and the doctor actually complained to me about the amount of paperwork that he had to fill out for me! "uh gee, doc, sorry 'bout that...i just have this burning desire to print off government documents and drive an hour to pick them up, oh and I love to inconvenience you. If you've got a problem with the amount of paperwork that people with disabilities and their healthcare providers are required to fill out, complain to someone who can make a change!"

I know that this is a useless post.

I wonder how much money that doctor earns. ?

I like this doc. He's a nice guy. I'm not complaining about him...just complaining about the non-faxable paperwork that the govt' requires. Come on people! Let's go paperless!

Maneuvering the system

It has been 1.5 months since Audrey's diagnosis. Since then, we've been to an ENT, found a hearing resource teacher, got hearing aids, went to Sick Kids, another hearing test and back to the ENT. UNFREAKINBELIEVEABLE! I deserve a pat on the back for this one. Audrey's FIRST ENT appointment was scheduled for Jan. 29th (2.5 months from now).  Imagine I had just accepted that date and decided to wait patiently?!

I listened to my gut and put up a fight. I fought with gatekeepers (aka medical receptionists). And insisted that my child be seen. I'm glad that I did. Learn from my experience; the squeaky wheel definitely gets the grease!

*GULP*

...and that's not me gulping down wine either! (ok, maybe it is)....I've decided to take the plunge and share this with some people.

Why not, right? What other people think of me is none of my business! (Words of wisdom from my Mother-in-Law)

signs

I've had many people ask me what prompted me to book a hearing test for Audrey. Afterall, having a child's vision checked it somewhat standard and a hearing test is not. Fair enough. Hearing loss is a gazillion times less common than vision loss but I still think that it is important to have both checked prior to starting Kindie.

Anyway, in hindsight there were many "red-flags" indicating potential hearing loss. But the things that I remember standing out to me were:

1) Her speech stopped progressing. She was always an early talker who spoke well and clearly. Then she fell average...then below average.

2) She wouldn't respond to direction (eg: "time for dinner!!!" bro would come, sis did not)

3) She always seemed to be in her own little world and it was hard to get her attention.

4) She would startle if I walked into her room (now I know it was because she couldn't hear me coming.)

5) She shares a room with her brother and he never wakes her at night but she wakes him often.

6) When strangers would speak to her she wouldn't respond and she'd just stare at me. I had assumed that she was being rude or shy. I now know that she was looking at me for encouragement and to repeat the question that she was asked.

Even though my sons do not show any signs of hearing loss, I am going to have their hearing tested anyway. It doesn't hurt to have a baseline to compare future tests to.

low day

We woke up bright and early and hit the highway at 6am to take Audrey to her first appointment at Sick Kids Hospital. And although the day wasn't terrible, it wasn't good either. Audrey had another audiogram done that showed that her hearing has worsened in the past 1.5 months...not significantly, but still...worse.

Not what I wanted to hear. Especially since this means that it will most likely continue to get worse throughout her life.

Still no idea on what caused this. Her doctor would like to do a CT scan but we have decided to wait until she is a little bit older so that she wont need to be anaesthetized. They are also doing some testing on the blood that was taken at her heal prick test when she was a newborn to see if she may have been exposed to a virus in utero (CMV). I never imagined that we'd be having tests done on her newborn blood over 4 years later! Audrey will continue to be monitored at this amazing hospital and for this I am grateful.

Good news: Audrey is adjusting VERY well to her hearing aids. She is such a bright little girl and it is amazing how she is adapting to these machines on her ears!

Last night I went to my first Hands and Voices support group meeting for parents of children who are deaf/hard of hearing. It was nice to be in the company of other Mamas who are going through or have gone through THIS. What I'm dealing with. It was comforting and upsetting at the same time. The thing that I took out of this was that it is okay for me to feel sad because it is sad. It might not seem like a positive thing to take out of a meeting, but it really is.
Anyway, back to Audrey...I just dropped her off at school for the first time with her hearing aids!!! SOOOO SCARY! (for me! haha) I lurked in the parking lot to see how she was doing at recess and it didn't look good. The kids surrounded her and were poking at her ears. I'm sure that they were just curious and this will pass. But man, my heart ached. WHY OH WHY didn't I think to take her hair out of her pony!?!

REWIND!

I really wish that I had started this blog on the day that we found out about Audrey's impairment. I would love to look back and read that post to see how far we've (I've) really come. Don't get me wrong, I still have days when sadness overwhelms me but for the most part, I've come to terms with this challenge.

The day of the first audiogram. A day that changed my life forever. I remember feeling frustrated with Audrey when she wouldn't clap at the beep or point to the correct picture. I thought that she was just being difficult, when really, she couldn't hear the beep or the audiologist say the word. And then the technician told me that Audrey has significant hearing loss that is uncurable and she will need to wear hearing aids for the rest of her life. I just sat there and smiled and said "ok". No biggie. At least I know why she's been behaving so strangely. In hindsight, I know that my mind was in shock and this was my way of coping with the devastating news.

Then I got home. Then it hit me. Like a truck.  My child was hearing impaired. Over the next few days the enormity of challenges that were to come became more visible. The medical system. The school. The finance. The paperwork. The appointments. It all became too much for me to wrap my head around...nevermind the fact that my child has a disability that will be with her for the rest of her life and we don't know what is causing it/has caused it/ if it is getting worse...

I cried. A LOT. More than a lot. I grieved for the loss of the dream that I had for my child. This might sound dramatic to some. But unless you've been told that your child has a severe disability (yes, it is a severe disability even though she is not in a wheelchair and I know it could be worse) you don't know what this feels like. After speaking with some Moms who have been through the same or a similar experience, I learned that what I  was feeling was normal and a very predictable stage. Once I knew that this was a normal stage, I passed on to the next one....

Denial. I thought, there has to be something wrong with the audiogram. Especially since her pattern of hearing loss was so unique (identical loss in both ears). I HAD to get her a second audiogram. Right away!!! The ENT explained to me that the test was, infact, very accurate and thorough.

So. great. now what? How am I supposed to deal with this? I have a 3 month old baby to take care of! I'm not sleeping at night! I want to enjoy my baby! But how can I with all of this crap to deal with?!? I became ANGRY. Why me? Why my kid? Why not the bratty or bully kid? This isn't fair!! Yep, u guessed it...I progressed onto the next stage.

So, I made it through grief, denial and anger, and here I am. I'm in the "do whatever the eff it takes for my girl to have every opportunity available to her so that she can lead a fullfilling life".

I still  find myself occassionally visiting the other stages but I don't fight it. I'm letting myself feel what it wants to feel.

First full day with her hearing aid

The morning started out well. The kids woke up, I put on Audrey's hearing aids. We went downstairs. I put Audrey's favourite movie on (Tangled).  She heard the phone ring and looked amazed and smiled :) "this is great!" I thought.


Then, after about 15 minutes she didn't want to wear the hearing aid. I took it off of her and let her have quiet time in her room. Then she wanted to come downstairs again. So I put the aids back in. Then she started crying and doesn't want to wear them anymore. AHHHH! This was what I was dreading.

I called my sister in law to take Ryan for the morning. It turns out that the typical bro/sis interaction was too much for her to handle with her aids. With bro gone, Audrey did MUCH better. She still complains that her hearing aids make too much noise (which I explain that she is just hearing normal noises) and she complains that the backs of her ears hurt. Valid complaint.

Tonight I'm meeting with a support group for Parents of deaf/hard of hearing children. I can't wait to be around people who truly know what I'm going through. I'm hoping they'll be able to offer me some tips on how to help Audrey adjust to her new life. Because, for the rest of her life she will be hearing impaired....ugh...still trying to swallow that pill.

So, it turns out that this is just going to be another rollercoaster ride. Like everything else is when it comes to parenting. Unfortunately, I ended up with an extra ride ticket that most parents don't have..For now, I'm holding on tight, but hopefully I'll end up riding with my hands in the air.