I don't want to blog about bad stuff.
I don't want to blog about how Hailey fell on week 2 of school and broke her front teeth. I don't want to blog about the fact that when the school called they asked me to bring a new dress since she had bled "a little". I don't want to blog about how when I got there she was bleeding from her mouth, her nose, her head and her teeth were broken. I don't want to blog about how the teacher said, It's not that bad when I said I was taking her to the ER. I don't want to blog about how I've been calling Medi Cal and different dentists since it happened trying to find someone who can get her in (who accepts Medi Cal) before the end of September. I don't want to blog about how ridiculous it is that there is only one dentist in the entire Sacramento and surrounding areas who takes Medi Cal and who does hospital dentistry. I don't want to blog about how the dentist lady was rude and said, well (our dentist) is the only one who takes the "disabled people" because of the liability. I don't want to blog about how she also said, well what can you expect, you have Medi Cal! I don't want to blog about how the teacher told me that she was sorry but Hailey refused to walk near her so she couldn't promise that she would be safe at school. I don't want to blog about how every time I look at her teacher she looks like she is a deer in the headlights. I don't want to blog about how the program manager of Hailey's case for the school district told the advocate that Hailey was too cognitively impaired to get any additional services although I just received CAPA testing for her that says she is advanced. I don't want to blog about how her classroom is total chaos and I feel horrible that I have to leave her there every day. I don't want to blog about Hailey having a BM accident and the staff only changing her underwear but leaving her in her poop smelling clothes all day. I don't want to blog about the fact that I'm on the verge of deciding that I'm not taking her to school at all. I don't want to blog about any of that.
So I'm not blogging...So there. Because those are the only things that I am thinking about blogging lately.
Maybe now that I've decided I'm not blogging about that, I will have something good to blog tomorrow. Maybe now that it's all out there in the "that will not be my blog topic for the day" section of my brain, all of these things will magically resolve and I will be free from having to think about any of that anymore.
So goodnight, blogging friends...Wish me luck that the "solve all of your crazy problems overnight" fairy comes down and sprinkles me with magic fairy dust tonight!
Tuesday, August 30, 2011
Tuesday, August 16, 2011
An Advocate
So I've specifically avoided blogging about my crazy "IEP that still hasn't been presented to me or signed after 4 months experience" that I've had with the school district...Mostly because I know that Hailey's old teacher sometimes pops over to my blog and I didn't want to throw her under the bus or hurt her feelings...*so if you are reading this Mrs. Old Teacher please forgive me, this is not your fault...we love you*.
We had an IEP in early May and I felt like it was a good one. The district mostly gave in to everything that I asked for and those things that they didn't agree to, I asked for Independent Educational Evaluations for. Everything was great. But the School District has a habit of presenting the IEP to sign with the notes at least a month after the IEP actually takes place. This is the reason that we have only actually signed one IEP in the three years that we have been in this school district. It is really irritating and to tell you the truth I could never really understand the reasoning for waiting so long to present it for my signature.
So this time, we had a great IEP and mostly agreed on everything so I asked for it to sign but of course, it wasn't ready and I by the time it was presented to me, it was all wrong. The things that we discussed weren't even in the notes and the important things were all wrong. PISSED is only a mild word that I would use to describe my feelings for all of the preparation that I did for the IEP and all of the time that we spent in the IEP to have it come out wrong. GRRRRR!!
So then I worked with the teacher and got everything ironed out but before I got the IEP to sign...she left the district. She took a position closer to her family *which we solidly understand and support*. The problem is that when I emailed the program specialist, her response was something like "if you agree with the placement, just sign it"...WHAT???? I wanted to scream and yell and kick and have a fit. Actually I did scream and yell and kick and have a fit in my own bedroom...and I think I probably posted a few nasty things on face book (which I deleted).
An IEP is not just about placement. It is about services and details and what happens where and what is going to be worked on and how my child will learn and who is going to teach her what and who is going to pay for what and who will be called when and what information will be collected and on and on and on and on...It is all of the details that tell everyone who ever works with her and everyone who ever sees her or evaluates her or assesses her who she is, how she learns and where she is at. It is the document that forms her future years. It is everything with regards to her education!!
So I called an advocate that I have worked with in a limited capacity with an IEP last year and she agreed to help me!!
YAY!
I am really happy to be working with someone who can help me get everything ironed out. I am actually really excited to just have someone who is dealing with the district. I haven't had to speak with the district directly for 3 weeks and it has been a huge relief!!
In the meantime I am trying to just relax and get the advocate everything that she asks for when she asks for it. I am just trying to let go of some of the control and let someone else worry for a minute...
And that gives me a peaceful feeling that I haven't had in a very very long time. And for that I am grateful!
We had an IEP in early May and I felt like it was a good one. The district mostly gave in to everything that I asked for and those things that they didn't agree to, I asked for Independent Educational Evaluations for. Everything was great. But the School District has a habit of presenting the IEP to sign with the notes at least a month after the IEP actually takes place. This is the reason that we have only actually signed one IEP in the three years that we have been in this school district. It is really irritating and to tell you the truth I could never really understand the reasoning for waiting so long to present it for my signature.
So this time, we had a great IEP and mostly agreed on everything so I asked for it to sign but of course, it wasn't ready and I by the time it was presented to me, it was all wrong. The things that we discussed weren't even in the notes and the important things were all wrong. PISSED is only a mild word that I would use to describe my feelings for all of the preparation that I did for the IEP and all of the time that we spent in the IEP to have it come out wrong. GRRRRR!!
So then I worked with the teacher and got everything ironed out but before I got the IEP to sign...she left the district. She took a position closer to her family *which we solidly understand and support*. The problem is that when I emailed the program specialist, her response was something like "if you agree with the placement, just sign it"...WHAT???? I wanted to scream and yell and kick and have a fit. Actually I did scream and yell and kick and have a fit in my own bedroom...and I think I probably posted a few nasty things on face book (which I deleted).
An IEP is not just about placement. It is about services and details and what happens where and what is going to be worked on and how my child will learn and who is going to teach her what and who is going to pay for what and who will be called when and what information will be collected and on and on and on and on...It is all of the details that tell everyone who ever works with her and everyone who ever sees her or evaluates her or assesses her who she is, how she learns and where she is at. It is the document that forms her future years. It is everything with regards to her education!!
So I called an advocate that I have worked with in a limited capacity with an IEP last year and she agreed to help me!!
YAY!
I am really happy to be working with someone who can help me get everything ironed out. I am actually really excited to just have someone who is dealing with the district. I haven't had to speak with the district directly for 3 weeks and it has been a huge relief!!
In the meantime I am trying to just relax and get the advocate everything that she asks for when she asks for it. I am just trying to let go of some of the control and let someone else worry for a minute...
And that gives me a peaceful feeling that I haven't had in a very very long time. And for that I am grateful!
Monday, August 8, 2011
I blog a lot about negative things...about things that bug me and things that frustrate me in this life. I bitch and moan and complain more than more fair share on my blog...but Hey, It's my blog so I can do that! It is a place for me to air it all out. So that I can give my frustrations a voice and be the best I can be for my children and for my hubby and my family and my friends.
So today, you will be shocked to read a little positive information! A little token of love. I think that sometimes I forget to share with you all that Hailey has a fantabulastic life full of family and fun and friends and love. We are not pouring over IEP meetings and preparing for battle at all hours of the day. I do most of that at night or when the girls are napping or while they are playing. Most of the time, they don't even realize that I am not 100 percent focused on them. I don't mean to pat myself on the back too much here but I am a GREAT mother. I think that I pretty much rock in most aspects of mothering!
So I wanted to share with you a story about my sister's boyfriend's daughter. She is Hailey's age and she is wonderful! She has absolutely the most loving and wonderful soul of any child I've ever met. She just met Hailey back in May and immediately she was inviting and open with Hailey. She made Hailey feel comfortable and helped her play. It was really amazing. Most ten year olds wouldn't make the time or the effort to make sure that Hailey was following along in the game. They would be busy doing their thing, not really wanting the little girl who can't talk,who has fits and pulls other people's hair to join in. But not this ten year old. So when it was the girl's birthday, I told her that Aubrey and I would be there and she said "what about Hailey" and I told her that Hailey would be with her dad for that weekend and she said "ah man, I wanted her to meet all of my friends"...WHAT??? She actually wanted to introduce Hailey to her friend's from school...she is proud of Hailey and she is proud that they are friends. She protects her and I think that it is wonderful.
I mean there are other family members who are equally as wonderful to Hailey...and other friend's children who are wonderful to her but this is a child who just met her. A child who wasn't raised around Hailey. A child who hasn't been expected to love her. She just did love her on the spot and treated her with respect and admiration.
After that declaration that she wanted her to meet her friends, I got into the car that night and cried...bawled actually...Good happy tears. My daughter has a friend...a real friend and that is wonderful!
So today, you will be shocked to read a little positive information! A little token of love. I think that sometimes I forget to share with you all that Hailey has a fantabulastic life full of family and fun and friends and love. We are not pouring over IEP meetings and preparing for battle at all hours of the day. I do most of that at night or when the girls are napping or while they are playing. Most of the time, they don't even realize that I am not 100 percent focused on them. I don't mean to pat myself on the back too much here but I am a GREAT mother. I think that I pretty much rock in most aspects of mothering!
So I wanted to share with you a story about my sister's boyfriend's daughter. She is Hailey's age and she is wonderful! She has absolutely the most loving and wonderful soul of any child I've ever met. She just met Hailey back in May and immediately she was inviting and open with Hailey. She made Hailey feel comfortable and helped her play. It was really amazing. Most ten year olds wouldn't make the time or the effort to make sure that Hailey was following along in the game. They would be busy doing their thing, not really wanting the little girl who can't talk,who has fits and pulls other people's hair to join in. But not this ten year old. So when it was the girl's birthday, I told her that Aubrey and I would be there and she said "what about Hailey" and I told her that Hailey would be with her dad for that weekend and she said "ah man, I wanted her to meet all of my friends"...WHAT??? She actually wanted to introduce Hailey to her friend's from school...she is proud of Hailey and she is proud that they are friends. She protects her and I think that it is wonderful.
I mean there are other family members who are equally as wonderful to Hailey...and other friend's children who are wonderful to her but this is a child who just met her. A child who wasn't raised around Hailey. A child who hasn't been expected to love her. She just did love her on the spot and treated her with respect and admiration.
After that declaration that she wanted her to meet her friends, I got into the car that night and cried...bawled actually...Good happy tears. My daughter has a friend...a real friend and that is wonderful!
Friday, August 5, 2011
God only gives special children to special parents...
Really?? I HATE when people say that. I would rather be totally normal. I wasn't special to begin with and I don't really want to be special now. And with all of these special gifts that God is supposedly showering upon me because I'm such a special, patient and wonderful parent I would like to make some special requests...
Dear God...can you please remove the need to go to the bathroom? It is really difficult to have to go to the bathroom because I can't leave Hailey's side for even a moment without all hell breaking loose. So I figured, since I'm so special and all, that this would be a reasonable request.
Dear God...can you please relieve me of the need for sleep? I know that you give her the ability to sleep every once in a while and I realize that this seems selfish and all but between the stress and the anxiety and the advocating, when she sleeps, I have things to do...So you see, if I didn't have to sleep, I'd be much better at this very special job that you have graced me with.
Dear God...can you please give us the ability to make some money...I'm not asking for millions. My hubby is a hard worker and so am I so when we apply for jobs, I was wondering if you could just give us the opportunity to actually get one...You see, this special job requires us to have money. It is an expensive life and there are things that she needs that we can't get her because of this general lack of money...so just a little opportunity would be great.
Dear God...can you please shower down an extra dose of patience...just a little. As she is getting older, her temper is becoming shorter and shorter which is making my patience supply run low...just a little bit of patience...doesn't it come in a fairy dust bag or something? I promise I will save it for when absolutely necessary like when she won't stop pulling her sisters hair and laughing hysterically.
Dear God...can you please give me the ability to shower, shave my legs, do my make up, get dressed and do my hair in 1 minute flat? I mean come on, that is the time frame that I am expected to do it in so I'm sure that this is not a surprise that I'd be asking for this...I am special after all.
I think that is it...the list isn't too long. Although if you are feeling rather generous, I could use a pause button every once in a while or a mute button to mute all of the well meaning comments that come my way.
Thank you!
Dear God...can you please remove the need to go to the bathroom? It is really difficult to have to go to the bathroom because I can't leave Hailey's side for even a moment without all hell breaking loose. So I figured, since I'm so special and all, that this would be a reasonable request.
Dear God...can you please relieve me of the need for sleep? I know that you give her the ability to sleep every once in a while and I realize that this seems selfish and all but between the stress and the anxiety and the advocating, when she sleeps, I have things to do...So you see, if I didn't have to sleep, I'd be much better at this very special job that you have graced me with.
Dear God...can you please give us the ability to make some money...I'm not asking for millions. My hubby is a hard worker and so am I so when we apply for jobs, I was wondering if you could just give us the opportunity to actually get one...You see, this special job requires us to have money. It is an expensive life and there are things that she needs that we can't get her because of this general lack of money...so just a little opportunity would be great.
Dear God...can you please shower down an extra dose of patience...just a little. As she is getting older, her temper is becoming shorter and shorter which is making my patience supply run low...just a little bit of patience...doesn't it come in a fairy dust bag or something? I promise I will save it for when absolutely necessary like when she won't stop pulling her sisters hair and laughing hysterically.
Dear God...can you please give me the ability to shower, shave my legs, do my make up, get dressed and do my hair in 1 minute flat? I mean come on, that is the time frame that I am expected to do it in so I'm sure that this is not a surprise that I'd be asking for this...I am special after all.
I think that is it...the list isn't too long. Although if you are feeling rather generous, I could use a pause button every once in a while or a mute button to mute all of the well meaning comments that come my way.
Thank you!
Wednesday, August 3, 2011
Touring a New School
I don't know what I expected.
Maybe I wanted to see ten year old girls sitting in a classroom with little pig tails and curled hair and pretty dresses. Maybe I wanted to see children like Hailey speaking and spelling and reading. Maybe I was looking for a magical place. Maybe my expectations were too high. Maybe I was looking for the Disneyland of options for my little lady.
I don't know what I expected but it wasn't what I saw.
I want for her a place to learn where the teachers have staying power. Where they stay more than a year. Where she doesn't lose the people that she trusts...the people that I trust her with.
I want for her a place where she has friends. Where children laugh as much as she does and there is fun in the air and learning and fun. Where she learns how to write but also how to use the bathroom by herself.
I want for her a place where adults don't yell at her. Where she listens because they speak softly and she is interested in what they are teaching.
I want for her a place that I would want for any ten year old girl. A place where she is safe and taken care of. Where she doesn't get off the bus with dirty underwear. Where her teachers don't call children worthless...no matter what the context.
I want for her a place where people love her and teach her and take care of her.
It's not like I'm going to give up because I'm not but I'm giving myself this chance to be sad that I won't be fighting for this option...I would have had to "push a boulder uphill" which is what the advocate said...in order to get her into that school. So at least I don't have to fight for something that isn't even good for her.
I want for me to have my auntie be alive so that I can put my head in her lap and she can tell me that I am doing everything that I can and that if I need to yell and scream then to yell and scream at her.
I want for me to have an outlet or a hobby or a job...something else to do than to think about this.
I want for me to not have to advocate for her for a while.
I want for me to not have to fight for every hour of therapy, every minute of intervention, every moment of communication.
I want for me to find her the perfect place. I want for me to find her Disneyland of options...a magical spot that will help her to learn and be happy.
Maybe I wanted to see ten year old girls sitting in a classroom with little pig tails and curled hair and pretty dresses. Maybe I wanted to see children like Hailey speaking and spelling and reading. Maybe I was looking for a magical place. Maybe my expectations were too high. Maybe I was looking for the Disneyland of options for my little lady.
I don't know what I expected but it wasn't what I saw.
I want for her a place to learn where the teachers have staying power. Where they stay more than a year. Where she doesn't lose the people that she trusts...the people that I trust her with.
I want for her a place where she has friends. Where children laugh as much as she does and there is fun in the air and learning and fun. Where she learns how to write but also how to use the bathroom by herself.
I want for her a place where adults don't yell at her. Where she listens because they speak softly and she is interested in what they are teaching.
I want for her a place that I would want for any ten year old girl. A place where she is safe and taken care of. Where she doesn't get off the bus with dirty underwear. Where her teachers don't call children worthless...no matter what the context.
I want for her a place where people love her and teach her and take care of her.
It's not like I'm going to give up because I'm not but I'm giving myself this chance to be sad that I won't be fighting for this option...I would have had to "push a boulder uphill" which is what the advocate said...in order to get her into that school. So at least I don't have to fight for something that isn't even good for her.
I want for me to have my auntie be alive so that I can put my head in her lap and she can tell me that I am doing everything that I can and that if I need to yell and scream then to yell and scream at her.
I want for me to have an outlet or a hobby or a job...something else to do than to think about this.
I want for me to not have to advocate for her for a while.
I want for me to not have to fight for every hour of therapy, every minute of intervention, every moment of communication.
I want for me to find her the perfect place. I want for me to find her Disneyland of options...a magical spot that will help her to learn and be happy.
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