The day came, and we were armed and ready. Both of my parents went to the meeting, which is a pretty big deal since usually it's jut me and my mom. My dad went around asking each person their name and job description, and there was a strong feeling of tension in the room. My dad, a lawyer, was being quite successful at being intimidating. That is, until he asked what an IEP is... Then everyone in the room started revealing their true selves, as they no longer saw him as much of a threat.
My parents began talking about the unfairness of the evaluation and handing out my audiologist's letter. My dad requested an independent evaluation.
"No. That's not necessary," said the lady who was mostly in charge of the evaluation So, apparently they can say no.. Guess we weren't expecting that to happen..
She then went on to say that in Special Education, in order to show a need for further services, you cannot be making any progress with the assistance/IEP currently in place. With the A's/high B's I currently have, that doesn't demonstrate that I'm failing to make progress.
"I have no doubt that you have to work much harder than everyone else, but that's just the way the law works."
My parents urged me to tell my story, from my point of view. (I'd already done it at every past meeting, but they wanted the people who performed the evaluation to get a better understanding of what I go through)
I told my story about how frustrated I was at the school. How I felt as if sometimes, I didn't even need to go to school because I missed so much of the discussion, it's worthless. That I didn't understand why they were fighting tooth and nail to prevent me from having something that could actually help me. I told them how tired I was. Tired of trying to keep up, tired of fighting- just tired. Sometime during those sentences, tears started streaming down my face. Ugh, I hate crying, especially in front of people I don't like. Yet, that's what happened at every single meeting ( I would then swear I'd never attend another one, only for the whole thing to start all over when there was another meeting.)
"Oh! I wish I'd known you were this frustrated when we'd done the evaluation. This changes everything." Everyone looked up at her...was she kidding?
"I had no idea this was taking such a toll on you and that you felt you needed it so much." Yeah. Because I just asked for CART because I thought it would be fun to fiddle around with...? (note sarcasm)
The lady then said that while I don't have an educational need, that she could put down that I have an emotional need and get me CART that way.
As, I'm sure you can imagine, that was the most bizarre 5 minutes of the meeting. Heck, that was the most bizarre 5 minutes of my life! Pretty sure this song started playing through my head..
(pause music at the bottom of the page)
Not so fast..
"But," she continued, "you'd still have to change schools."
Change schools? You see, they don't offer CART at my school, and aren't planning on it, no matter how much I beg/plead/cry. But, they do at another school that is about as far away as my current school from my house. This other school is a mainstream school, but it's smaller and has a fairly large deaf ed program. They send all the kids in need of CART or interpreting services there. Apparently it's cheaper/more efficient to have it all on one campus.
This meeting was halfway through the school year. I'd finally been adjusting to my new school. Now they wanted to toss me somewhere else? As much as I struggled at my current school, I have a great group of friends, and nice teachers. They just want me to walk away from all of that?
So, that leaves you where I am now. The decision making process. A little bit has happened since then (technology-wise), and I will post more on the pros and cons of each school.
But, for now, my wonderful reader, I leave you with that. I would really appreciate any more input you have, with regards to the current situation. What do you think...What would you do?
*I'm experimenting with my blog banner at the top. Still haven't been able to make anything I like, since I don't have any tools like Photoshop or InDesign at home. If anyone is generous, gifted in the design department, and would like to design something (for free) then it would be completely awesome!*
Showing posts with label growing up. Show all posts
Showing posts with label growing up. Show all posts
Monday, February 15, 2010
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!
"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!
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