LOVE & PEACE for USA
It's a Grand Old Flag
Cha-cha-cha-cha-chaaaaanges!
15 years ago
Sunday, September 11, 2011
Never Forget 9.11
Cried just as hard today, 10 years laters, as I did the day it happened. Watching all the news coverage was heart wrenching. Tried to explain it to MM. Our babies will never have the innocence we had before that day.
LOVE & PEACE for USA
It's a Grand Old Flag
LOVE & PEACE for USA
It's a Grand Old Flag
Saturday, September 10, 2011
PLEASE GO VOTE FOR ME!!!
I really could use this gift card! All my bloggie buddies... I am the bonus choice of number six. Here is the link to the site
http://mamapundit.com/2011/09/time-to-vote-best-schoolday-mornings-idea/
Thanks, thanks, thanks!
Meghatronsmom
http://mamapundit.com/2011/09/time-to-vote-best-schoolday-mornings-idea/
Thanks, thanks, thanks!
Meghatronsmom
Monday, September 5, 2011
My Heart's Labor Day
Today, September 5, 2011 is a day that will be etched in my heart forever.
MM has developed a new fixation/obsession of collecting business cards & pamphlets from wherever we go. She reads the pamphlets, memorizing every detail of them. She then parrots the facts out to you & quizzes you several times throughout the day.
She got the pamphlet from her therapy place last Thursday. She has been reading it over & over, but oddly not one inquiry has come from her about that flyer. Not one until this evening.
It started when she was in the shower. She starts saying "I do not have artism" (artism is how she says autism). She often says this whenever she happens to sneak a peak at a report or hears me in a discussion. Again, "I do not have artism, I go to **certain therapy center**". I say, "Yes, you do go to **certain therapy center** and you do have autism". Then the conversation goes from her usual scripts/quizzes or even an argument of not having artism to this:
MM: What is artism?
Me: It is a brain disorder that affects how you see the world, how you feel & sense the world, how you interact & how you socialize and talk with people.
MM: Was I born with artism?
Me: :::long pause cause I still am not totally sure how to navigate this:::: Yes you were
MM: It is a brain disorder that I was born with
Me: Yes
MM: Do you have artism?
Me: No
MM: Does Daddy have artism?
Me: No.
She then jumps to another topic.
MM: Do I have cerebral palsy?
Me: Yes
MM: What is cerebral palsy?
Me: It is a condition that affects your muscles caused by lack of oxygen to your brain either when you were born or when you were in mommy's tummy
MM: You were pregnant and gave birth to me
Me: Yes
MM: Why didn't my brain get enough oxygen?
Me: They don't know for sure. Mommy was very sick & you were born early.
MM: My brain has enough oxygen now. I got cerebral palsy cause you took Zoloft (thanks lawyer commercials)
Me: LOL, no I didn't take Zoloft and yes, your brain has enough oxygen now. You know your friend H? She has cerebral palsy too. She didn't get enough oxygen cause when she was in her mommy's tummy her mommy had a bad car accident. You have mild cerebral palsy, she has severe cerebral palsy.
MM: Mine is mild, H is severe.
Me: Yes. That is why you were DAFOs & why you go to therapy. You have all these wonderful people to help you get strong & do all the things you can do. But your cerebral palsy is what makes it hard for you to write, snap & unsnap, zip, put on clothes, walk long distances.
MM: I can run fast.
Me: Yes, honey you can, the fastest. You can do anything you want to do, just sometimes you need a little more help.
MM: You have asthma.
Me: Yes.
MM: Were you born with asthma?
Me: Yes.
MM: Will I always have artism & cerebral palsy?
Me: :::swallowing lump & keeping the tears from creeping up:::: Yes.
By this time, we are done getting her dressed. She jumps up off the bed and starts in her typical language stimming voice "I have artism & cerebral palsy. It is mild. I have mild cerebral palsy. My brain didn't get oxygen" and then she continues to repeat it for the next 10 minutes until Wheel of Fortune comes on.
God bless her. She some how had a real conversation about it. I don't know if she fully understands it, but I think she does. I was totally caught off guard & not ready. I tried to be matter of fact and honest. I somehow got through it & didn't cry. Till now. That break in my heart just tore right back open, just as fresh as the days I found out about each of her diagnoses.
It just feels wrong having to explain brain injury & brain disorder to your eight year old, especially when it's hers.
MM has developed a new fixation/obsession of collecting business cards & pamphlets from wherever we go. She reads the pamphlets, memorizing every detail of them. She then parrots the facts out to you & quizzes you several times throughout the day.
She got the pamphlet from her therapy place last Thursday. She has been reading it over & over, but oddly not one inquiry has come from her about that flyer. Not one until this evening.
It started when she was in the shower. She starts saying "I do not have artism" (artism is how she says autism). She often says this whenever she happens to sneak a peak at a report or hears me in a discussion. Again, "I do not have artism, I go to **certain therapy center**". I say, "Yes, you do go to **certain therapy center** and you do have autism". Then the conversation goes from her usual scripts/quizzes or even an argument of not having artism to this:
MM: What is artism?
Me: It is a brain disorder that affects how you see the world, how you feel & sense the world, how you interact & how you socialize and talk with people.
MM: Was I born with artism?
Me: :::long pause cause I still am not totally sure how to navigate this:::: Yes you were
MM: It is a brain disorder that I was born with
Me: Yes
MM: Do you have artism?
Me: No
MM: Does Daddy have artism?
Me: No.
She then jumps to another topic.
MM: Do I have cerebral palsy?
Me: Yes
MM: What is cerebral palsy?
Me: It is a condition that affects your muscles caused by lack of oxygen to your brain either when you were born or when you were in mommy's tummy
MM: You were pregnant and gave birth to me
Me: Yes
MM: Why didn't my brain get enough oxygen?
Me: They don't know for sure. Mommy was very sick & you were born early.
MM: My brain has enough oxygen now. I got cerebral palsy cause you took Zoloft (thanks lawyer commercials)
Me: LOL, no I didn't take Zoloft and yes, your brain has enough oxygen now. You know your friend H? She has cerebral palsy too. She didn't get enough oxygen cause when she was in her mommy's tummy her mommy had a bad car accident. You have mild cerebral palsy, she has severe cerebral palsy.
MM: Mine is mild, H is severe.
Me: Yes. That is why you were DAFOs & why you go to therapy. You have all these wonderful people to help you get strong & do all the things you can do. But your cerebral palsy is what makes it hard for you to write, snap & unsnap, zip, put on clothes, walk long distances.
MM: I can run fast.
Me: Yes, honey you can, the fastest. You can do anything you want to do, just sometimes you need a little more help.
MM: You have asthma.
Me: Yes.
MM: Were you born with asthma?
Me: Yes.
MM: Will I always have artism & cerebral palsy?
Me: :::swallowing lump & keeping the tears from creeping up:::: Yes.
By this time, we are done getting her dressed. She jumps up off the bed and starts in her typical language stimming voice "I have artism & cerebral palsy. It is mild. I have mild cerebral palsy. My brain didn't get oxygen" and then she continues to repeat it for the next 10 minutes until Wheel of Fortune comes on.
God bless her. She some how had a real conversation about it. I don't know if she fully understands it, but I think she does. I was totally caught off guard & not ready. I tried to be matter of fact and honest. I somehow got through it & didn't cry. Till now. That break in my heart just tore right back open, just as fresh as the days I found out about each of her diagnoses.
It just feels wrong having to explain brain injury & brain disorder to your eight year old, especially when it's hers.
Sunday, February 6, 2011
Those Dreaded 3 Letters
Yes.
I can't believe it. Time sure has flown by. It's been a year already.
I.
E.
P.
Trying my best not to stress. Haven't spent days & days preparing like I've done in the past. I'm hoping my reverse strategy works & that I come out with more since I went in with way less. Will let you know if my plan backfires.
To all those who are getting IPADS for their children for school use, I am sooooooo green with envy! I can only dream....
I can't believe it. Time sure has flown by. It's been a year already.
I.
E.
P.
Trying my best not to stress. Haven't spent days & days preparing like I've done in the past. I'm hoping my reverse strategy works & that I come out with more since I went in with way less. Will let you know if my plan backfires.
To all those who are getting IPADS for their children for school use, I am sooooooo green with envy! I can only dream....
Saturday, January 1, 2011
New Year New ?????
Well, I posted in September about all that I was going to do with the blog, etc.
I obviously haven't done it. I haven't done much of anything really. Head in the sand, trying to get by, day to day living.
We are here. We have good days & bad days. We go through patches that are much rougher than others.
We've had quite a bit of illness lately. The delicious clarity after illness often carries me through the sickness. I loathe when she gets sick, but enjoy the time after. I wish they could figure out what causes it & bottle it. I know my child is special & amazing. When she is "here" it is icing on the cake. I wish you could really see the difference. Those who have experienced it understand. A glimpse of my girl without autism.
We go see the specialist this week. We are very concerned about her CP. I know CP doesn't get worse. However, she has grown six inches this last year. She keeps falling lately. I am hoping its an inner ear infection, off balance & its been bitterly cold outside thing, but I am afraid. She has always been one to want to walk everywhere until exhaustion. She is now relying more on her wheelchair when we are out. I worry that her cords are getting tighter. I am glad we have the appointment coming up sooner than later. I hate worrying needlessly. I always feel like I am sitting waiting for the proverbial shoe to drop.
IEP time is coming. IEP time is coming. AND surpise!!! they didn't do several things listed. I am so disillusioned with the school & the state. I filed that complaint & they rushed to put a bandaid on the six inch gas. State felt the bandaid was good enough. We are still bleeding all around it, but hey, they DID put a bandage on it! ARGH!!! Will let you know what happens there.
Hope you all have a happy new year & that if you make resolutions, you are able to keep them.
I obviously haven't done it. I haven't done much of anything really. Head in the sand, trying to get by, day to day living.
We are here. We have good days & bad days. We go through patches that are much rougher than others.
We've had quite a bit of illness lately. The delicious clarity after illness often carries me through the sickness. I loathe when she gets sick, but enjoy the time after. I wish they could figure out what causes it & bottle it. I know my child is special & amazing. When she is "here" it is icing on the cake. I wish you could really see the difference. Those who have experienced it understand. A glimpse of my girl without autism.
We go see the specialist this week. We are very concerned about her CP. I know CP doesn't get worse. However, she has grown six inches this last year. She keeps falling lately. I am hoping its an inner ear infection, off balance & its been bitterly cold outside thing, but I am afraid. She has always been one to want to walk everywhere until exhaustion. She is now relying more on her wheelchair when we are out. I worry that her cords are getting tighter. I am glad we have the appointment coming up sooner than later. I hate worrying needlessly. I always feel like I am sitting waiting for the proverbial shoe to drop.
IEP time is coming. IEP time is coming. AND surpise!!! they didn't do several things listed. I am so disillusioned with the school & the state. I filed that complaint & they rushed to put a bandaid on the six inch gas. State felt the bandaid was good enough. We are still bleeding all around it, but hey, they DID put a bandage on it! ARGH!!! Will let you know what happens there.
Hope you all have a happy new year & that if you make resolutions, you are able to keep them.
Thursday, September 2, 2010
Blog Roll & Hop
Thanks to blogging, I have "met" some pretty incredible parents with some super awesome kiddos. I have also "met" some pretty incredible people.
I am in the process of sprucing up the ol' short bus here (since it is back to school time and all) and I have noticed lots of things that need fixed. I changed the background cause my other one was no longer good. I am not loving this new background. I need to figure out how to make my own. My pics & links that scroll are not all showing up. I need to redo those.
Now, my poor bloggy roll! So many of the blogs I have on there haven't posted in 8 months or more! I have several new bloggy buddies who I check out & would LOVE to add to my list. If you are one of them, please give me a shout out in the comments. I will add them. This also gives me a better way of keeping up and ability to drop by to show some bloggy love! I think I might divide up my bloggy roll into different categories. I have so many that are fellow parenting bloggers & not just all SN. What do you think?
Are any of you experienced at redesigning blogs? Do I need to get someone to do it for me? I am not super fancy, nor am I super popular. I do want it to look nice & improve it. THANKS!
And in the spirit of the sprucing up, I am trying a few new things to maybe get my blog moving even more. I joined this thing called a Blog Hop. I have never heard of this until I saw it on one of the blogs I frequent.
So, now I am a member of Autism Blog Hop.
I am in the process of sprucing up the ol' short bus here (since it is back to school time and all) and I have noticed lots of things that need fixed. I changed the background cause my other one was no longer good. I am not loving this new background. I need to figure out how to make my own. My pics & links that scroll are not all showing up. I need to redo those.
Now, my poor bloggy roll! So many of the blogs I have on there haven't posted in 8 months or more! I have several new bloggy buddies who I check out & would LOVE to add to my list. If you are one of them, please give me a shout out in the comments. I will add them. This also gives me a better way of keeping up and ability to drop by to show some bloggy love! I think I might divide up my bloggy roll into different categories. I have so many that are fellow parenting bloggers & not just all SN. What do you think?
Are any of you experienced at redesigning blogs? Do I need to get someone to do it for me? I am not super fancy, nor am I super popular. I do want it to look nice & improve it. THANKS!
And in the spirit of the sprucing up, I am trying a few new things to maybe get my blog moving even more. I joined this thing called a Blog Hop. I have never heard of this until I saw it on one of the blogs I frequent.
So, now I am a member of Autism Blog Hop.
Friday, August 27, 2010
Shaky Start, but Ooooo I Feel Lucky Today!!!
Well, per usual, our local school district (lsd--- just like a bad drug LOL) did not fail to disappoint.
Right out of the gate, no bus. The lsd got lucky cause the first day of school, I had to work. They dealt with the hubs. They tried to tell him "if it makes you feel any better, the sped** buses didn't come for about 12 of the kids here". Ummmm, NO!!!! That means that the parents who have enough to worry about sending their children with handicaps off to school had no busing! Sheesh.... so NOT okay. The hubs called & left a message with transportation. The next day, still no bus. They had to deal with me. Ut-oh!!! Mrs.I-know-our-rights-and-am-not-afraid-to-quote-them-or-go-over-your-head-and-won't-take-no-as-an-acceptable-answer-when-it's-on-the-IEP.
Yep, the b!tch is back.
Upon dropping her off at school, I met with the vice principal. She said it was a district thing, not at the school level. I went home and called the person in charge of transportation for special education. I called & called & called. I kept getting VM! Frustrating! I am going to make this long story short, for I spent hours chasing this down. I chewed out the lady who is in charge (but claims she is not), then talked to her supervisor and continued on up the chain. Upon all the calls & investigating, I found out the bus owner did ask why MM wasn't on the list! They claimed they had no paper work. WHATEV!!! The lady in charge was quite rude (hence the butt chewing from me. If you are rude to me, I push back---- HARD! If she hadn't been rude, I might have been content to wait it out for the week. I would have asked for transportation reimbursement, but I could have waited it out) and tried to claim it was a fluke. Not believing that for: 1.) She has been riding special transportation to this school for 3 years, this makes year 4. 2.) The bus owner asked why she wasn't on the list. 3.) This happened with kindergarten!!!! It was a large amount of finger pointing & blame shifting, just like our good bureaucratic system does at its finest.
Needless to say, the bus showed up on day three. Hee hee.... LSD 0 MM 1
As I have mentioned before, MM often has troubles with lunch at school. She doesn't always eat. She also doesn't drink sometimes. Not drinking is very bad as we all know, special needs or not. It is not good for a person to go 8 hours without drinking! We have it written on her IEP that she can drink when she wants. She is very prone to UTIs due to her CP issues & the autoimmune stuff. We are approaching the end of week two. I have been diligently documenting what she does or does not eat or drink from her lunch (long story on this cause the principal claims that they make sure all the children eat and drink when at school~ all except MY child). She has not been drinking ANYTHING from her lunch box. I have asked if she is drinking something else. I never get a clear answer, but I am guessing not because she is parched when she gets home & drinks like a fish. She came out of PT today & they asked if she was getting a UTI cause she kept holding herself. I didn't tell them about her not drinking, they know her & pick up on her cues quite well. After talking to my mom (who got her off the bus), she said she went to the bathroom 5 times in the 30minutes of being home from school. UGH!!! SO, after today, I will have almost two weeks of documentation to back up my concerns. I will meet with the teacher, the school nurse & the principal to get this resolved. WHY oh WHY does common sense elude these people????
Right out of the gate, no bus. The lsd got lucky cause the first day of school, I had to work. They dealt with the hubs. They tried to tell him "if it makes you feel any better, the sped** buses didn't come for about 12 of the kids here". Ummmm, NO!!!! That means that the parents who have enough to worry about sending their children with handicaps off to school had no busing! Sheesh.... so NOT okay. The hubs called & left a message with transportation. The next day, still no bus. They had to deal with me. Ut-oh!!! Mrs.I-know-our-rights-and-am-not-afraid-to-quote-them-or-go-over-your-head-and-won't-take-no-as-an-acceptable-answer-when-it's-on-the-IEP.
Yep, the b!tch is back.
Upon dropping her off at school, I met with the vice principal. She said it was a district thing, not at the school level. I went home and called the person in charge of transportation for special education. I called & called & called. I kept getting VM! Frustrating! I am going to make this long story short, for I spent hours chasing this down. I chewed out the lady who is in charge (but claims she is not), then talked to her supervisor and continued on up the chain. Upon all the calls & investigating, I found out the bus owner did ask why MM wasn't on the list! They claimed they had no paper work. WHATEV!!! The lady in charge was quite rude (hence the butt chewing from me. If you are rude to me, I push back---- HARD! If she hadn't been rude, I might have been content to wait it out for the week. I would have asked for transportation reimbursement, but I could have waited it out) and tried to claim it was a fluke. Not believing that for: 1.) She has been riding special transportation to this school for 3 years, this makes year 4. 2.) The bus owner asked why she wasn't on the list. 3.) This happened with kindergarten!!!! It was a large amount of finger pointing & blame shifting, just like our good bureaucratic system does at its finest.
Needless to say, the bus showed up on day three. Hee hee.... LSD 0 MM 1
As I have mentioned before, MM often has troubles with lunch at school. She doesn't always eat. She also doesn't drink sometimes. Not drinking is very bad as we all know, special needs or not. It is not good for a person to go 8 hours without drinking! We have it written on her IEP that she can drink when she wants. She is very prone to UTIs due to her CP issues & the autoimmune stuff. We are approaching the end of week two. I have been diligently documenting what she does or does not eat or drink from her lunch (long story on this cause the principal claims that they make sure all the children eat and drink when at school~ all except MY child). She has not been drinking ANYTHING from her lunch box. I have asked if she is drinking something else. I never get a clear answer, but I am guessing not because she is parched when she gets home & drinks like a fish. She came out of PT today & they asked if she was getting a UTI cause she kept holding herself. I didn't tell them about her not drinking, they know her & pick up on her cues quite well. After talking to my mom (who got her off the bus), she said she went to the bathroom 5 times in the 30minutes of being home from school. UGH!!! SO, after today, I will have almost two weeks of documentation to back up my concerns. I will meet with the teacher, the school nurse & the principal to get this resolved. WHY oh WHY does common sense elude these people????
MM does appear to be enjoying school so far. The work is quite easy for her so far. They do have her Neo & she is using it. The teacher has sent me quite a few notes as well as some emails. She says she loves having MM cause she is super smart & sweet! She is also behaving quite well.
I have had a week of ups & downs. One of the coolest ups, hence the lucky today, is that I actually won a really cool prize on Ellen's blog! I am super excited to get it! This was the first time I have one a major award and can't wait to receive my fragile package! (lol...Christmas Story reference). Go show Ellen, Sabrina & Super Purple Max some bloggy love! THANKS ELLEN! You are an amazing writer with some great kiddos & some cool give aways!
Saturday, August 14, 2010
Back to School
Every where we look, we are inundated with back to school stuff. Advertisements on TV. Advertisements in the paper & online. Displays as soon as you enter the store.
Most parents are excited about the words back to school. The children have been fighting all summer. The children are bored. The parents are ready to send them off so they can relax, get their house back in order and do all the things that are hard to do with children around.
Not me.
MM starts school on Tuesday. I have a huge knot in my stomach. It is keeping me up at night with anxiety. Will this year be better? Will I have to fight as much? Will they follow the IEP? Will she eat while at school? Will she use the bathroom so she doesn't get sick? Will her meltdowns be as bad as they usually are when she starts back to school? Will she make any gains after doing so well this summer? Will the bus driver work out? Will she be able to keep up with her peers? Is this the year the kids start making fun of her or are mean to her?
Don't get me wrong, I am looking forward to getting a break. It will be nice to have most of my days off to do the things I need to without her in tow. She has also had a great summer (up until the last few weeks which I am sure is HER anxiety about the change coming up) and I have enjoyed working with her, helping her make some real gains.
BUT, I am not looking forward to all the BS of school that goes along with having a SNK.
To end on a good note, we met her teacher the other day. I am excited cause I think we might have a great fit. She has been a teacher for a long time and has spent the majority of her time in special education. She has taught a typical classroom for the last 4 years, with a Sp. Ed. child in the room each year. XXXXfingers crossedXXXX that this is MM's year!
Most parents are excited about the words back to school. The children have been fighting all summer. The children are bored. The parents are ready to send them off so they can relax, get their house back in order and do all the things that are hard to do with children around.
Not me.
MM starts school on Tuesday. I have a huge knot in my stomach. It is keeping me up at night with anxiety. Will this year be better? Will I have to fight as much? Will they follow the IEP? Will she eat while at school? Will she use the bathroom so she doesn't get sick? Will her meltdowns be as bad as they usually are when she starts back to school? Will she make any gains after doing so well this summer? Will the bus driver work out? Will she be able to keep up with her peers? Is this the year the kids start making fun of her or are mean to her?
Don't get me wrong, I am looking forward to getting a break. It will be nice to have most of my days off to do the things I need to without her in tow. She has also had a great summer (up until the last few weeks which I am sure is HER anxiety about the change coming up) and I have enjoyed working with her, helping her make some real gains.
BUT, I am not looking forward to all the BS of school that goes along with having a SNK.
To end on a good note, we met her teacher the other day. I am excited cause I think we might have a great fit. She has been a teacher for a long time and has spent the majority of her time in special education. She has taught a typical classroom for the last 4 years, with a Sp. Ed. child in the room each year. XXXXfingers crossedXXXX that this is MM's year!
Tuesday, August 10, 2010
Cheer Up...
In the last year, my biological father has gotten in contact with me.
He was MIA for over 20 years. He then got in contact with my older sister. She clearly remembers him, she was three when my mother & he split up. They were already separated when I was born, got back together & then went their own way. I met him back then, about 15 years ago. It was very awkward for me. I already have a dad and this person appeared for a weekend & expected to be as such. I never spoke with him again after that. My sister has maintained contact with him and developed a relationship. The relationship between my sister & I is often tenuous. We didn't talk for a long time as adults. We have reconciled & I try my best with her. However, I feel she compartmentalized her relationship with our biological father from me.
When MM was born, she and I were not talking. (That is a whole other story to be hashed out some other time) MM was a secret from the biological father for a long time. I didn't have any relationship with him. I also didn't feel it was important. When my nephew was born, I guess he assumed it was his first grandchild. Things were fine by me. My sister continued to feel a need to keep her a secret. I could care less either way.
Then along came F.ace.B.ook.
Being friends with my sister, she friended his two daughters (yes, I know they are my half sisters, but I need baby steps with this...) & his current wife. They could see posts & pics (I wasn't savy on how to make things private like I am now). She asked if I cared if they friended me. I didn't mind. My biological father also friended me. Fine. He then found out about MM, that she existed, his FIRST grandchild. Still fine.
I have tried my best to foster a relationship with him. I don't really think it is a familial one, but it is semi cordial. I feel like the more people in MM's life that know her & love her, the better off she will be. He has sent her two packages, I sent a few pics. I occasionally chat online with him & sent a few texts. I have put forth the effort and feel I have done all I can. The ball is in his court if he wants more, but I am not reaching out any more. He was the one who pursued me. I don't feel like I have a void in my life.
All this history leads up to the following:
My sister told him about MM's disabilities when he first found out about her. Things have been said or done that really rub me the wrong way. I know people mean well, but the best of intentions...
I posted about having a bad day yesterday & feeling bad. He texted me to ask how I was doing (btw, I have not heard from him in over a month). I just said I was tired & life was kicking my butt right now (have had several trying ASD days in a row). He txtd back "cheer up, I have days and weeks like that".
OOOOkkkkkkkkkkkkaaaaaaaaaaaaaaaayyyyyyyyy.
That just pi$$ed me off to the hilt. YOU do NOT have days like this or weeks. YOU had four healthy daughters, two of whom you ignored for years. YOU don't know what it's like to be exhausted from ticks, meltdowns, the constant needs of self help, having a 7 year old functioning like a 3.5 year old,worrying about paying medical bills, going to therapy, making sure you are doing enough for her, fretting about IEPs, fighting the school, the constant stares in public, the mental & emotional beat down etc, etc. YOU don't know how hard it is to walk around with your heartbroken cause you can't fix or stop what is going on. It will not change. It will not go away. You have never seen her, spent 1 minute with her, let alone a day.
So, sorry if I don't cheer up immediately. I think I am entitled to a pity party every now & then. They don't come as often as they used to, but they do come, especially on super trying days like the last few have been. If you really knew about our life & really wanted to be involved in a true grandparent role, then you would know. I am sure you meant well, but no.
No.
NO.
You do NOT have days like this. You NEVER will.
He was MIA for over 20 years. He then got in contact with my older sister. She clearly remembers him, she was three when my mother & he split up. They were already separated when I was born, got back together & then went their own way. I met him back then, about 15 years ago. It was very awkward for me. I already have a dad and this person appeared for a weekend & expected to be as such. I never spoke with him again after that. My sister has maintained contact with him and developed a relationship. The relationship between my sister & I is often tenuous. We didn't talk for a long time as adults. We have reconciled & I try my best with her. However, I feel she compartmentalized her relationship with our biological father from me.
When MM was born, she and I were not talking. (That is a whole other story to be hashed out some other time) MM was a secret from the biological father for a long time. I didn't have any relationship with him. I also didn't feel it was important. When my nephew was born, I guess he assumed it was his first grandchild. Things were fine by me. My sister continued to feel a need to keep her a secret. I could care less either way.
Then along came F.ace.B.ook.
Being friends with my sister, she friended his two daughters (yes, I know they are my half sisters, but I need baby steps with this...) & his current wife. They could see posts & pics (I wasn't savy on how to make things private like I am now). She asked if I cared if they friended me. I didn't mind. My biological father also friended me. Fine. He then found out about MM, that she existed, his FIRST grandchild. Still fine.
I have tried my best to foster a relationship with him. I don't really think it is a familial one, but it is semi cordial. I feel like the more people in MM's life that know her & love her, the better off she will be. He has sent her two packages, I sent a few pics. I occasionally chat online with him & sent a few texts. I have put forth the effort and feel I have done all I can. The ball is in his court if he wants more, but I am not reaching out any more. He was the one who pursued me. I don't feel like I have a void in my life.
All this history leads up to the following:
My sister told him about MM's disabilities when he first found out about her. Things have been said or done that really rub me the wrong way. I know people mean well, but the best of intentions...
I posted about having a bad day yesterday & feeling bad. He texted me to ask how I was doing (btw, I have not heard from him in over a month). I just said I was tired & life was kicking my butt right now (have had several trying ASD days in a row). He txtd back "cheer up, I have days and weeks like that".
OOOOkkkkkkkkkkkkaaaaaaaaaaaaaaaayyyyyyyyy.
That just pi$$ed me off to the hilt. YOU do NOT have days like this or weeks. YOU had four healthy daughters, two of whom you ignored for years. YOU don't know what it's like to be exhausted from ticks, meltdowns, the constant needs of self help, having a 7 year old functioning like a 3.5 year old,worrying about paying medical bills, going to therapy, making sure you are doing enough for her, fretting about IEPs, fighting the school, the constant stares in public, the mental & emotional beat down etc, etc. YOU don't know how hard it is to walk around with your heartbroken cause you can't fix or stop what is going on. It will not change. It will not go away. You have never seen her, spent 1 minute with her, let alone a day.
So, sorry if I don't cheer up immediately. I think I am entitled to a pity party every now & then. They don't come as often as they used to, but they do come, especially on super trying days like the last few have been. If you really knew about our life & really wanted to be involved in a true grandparent role, then you would know. I am sure you meant well, but no.
No.
NO.
You do NOT have days like this. You NEVER will.
Thursday, July 15, 2010
Summer time and the livin's easy...
Well, not really. BUT it is being good to us.
MM is doing well at home. She has made a few subtle gains. I am very excited about this. Any gain is a good one. We have been stagnated for so long, that I am doing the happy dance about them.
She is only doing two days at a summer program, one day with therapy and one day with her baton lessons. Otherwise, mom & I are working with her. What. a. difference! Her behavior has been quite good, ticks/stims way less and just an overall sweetie. I see her little personality peeking out through the ASD and she has a wonderful sense of humor. She has even made some jokes.
After talking to my friend (who is a special ed teacher), she said maybe the school day is too long for her. I am wondering if she is right. I have the girls at therapy documenting her behaviors, gains, etc during summer break. Once school starts & we see how things go, I might consider decreasing her day. If she is not making any gains because the day is too long (too much going on, too many interactions, etc), then I might shorten it.
We haven't really done much else. Life has been kind of boring, but boring is good. I have been slack on the blogging/being a blog buddy front. I guess I have been on a blog break. I said it before, I have a bunch of posts started. I'm just not sure I want to finish or publish them. They came from when I was in a dark place. I am back in the light now. Depression is such a miserable thing. Hiding it is even harder & worse.
Love & light to all of you. I'll be back to commenting before you know it!
MM is doing well at home. She has made a few subtle gains. I am very excited about this. Any gain is a good one. We have been stagnated for so long, that I am doing the happy dance about them.
She is only doing two days at a summer program, one day with therapy and one day with her baton lessons. Otherwise, mom & I are working with her. What. a. difference! Her behavior has been quite good, ticks/stims way less and just an overall sweetie. I see her little personality peeking out through the ASD and she has a wonderful sense of humor. She has even made some jokes.
After talking to my friend (who is a special ed teacher), she said maybe the school day is too long for her. I am wondering if she is right. I have the girls at therapy documenting her behaviors, gains, etc during summer break. Once school starts & we see how things go, I might consider decreasing her day. If she is not making any gains because the day is too long (too much going on, too many interactions, etc), then I might shorten it.
We haven't really done much else. Life has been kind of boring, but boring is good. I have been slack on the blogging/being a blog buddy front. I guess I have been on a blog break. I said it before, I have a bunch of posts started. I'm just not sure I want to finish or publish them. They came from when I was in a dark place. I am back in the light now. Depression is such a miserable thing. Hiding it is even harder & worse.
Love & light to all of you. I'll be back to commenting before you know it!
Thursday, June 10, 2010
Life gets in the way
We are here, much to blog about, don't really feel like it.
Just know we are around. Will get to this eventually. I miss you all & need to catch up on your blogs for I am sorely behind.
Just know we are around. Will get to this eventually. I miss you all & need to catch up on your blogs for I am sorely behind.
Wednesday, April 28, 2010
Please Pray
One of my BLOGS I READ is in need of some serious prayers. Let's all storm heaven for her, okay? Thanks so much!
Monday, April 5, 2010
Scattered
Have lots of posts started, none completed.
Went on a mini road trip this weekend. Very stressful, but made it there & back.
Still fighting with the school.
Got the wheelchair last Wednesday. She is a pro at it already. I know DH hates it, but it is such huge help already. He will come around eventually.
We've all had colds again too.
Computer crashed, had to totally clear the thing & start fresh. Those viruses suck.
Work is HORRIBLE! I want to quit so bad, but can't afford it. I am on the look out for a new job.
Been a bad bloggy friend, but will get back on the horse.
It's Autism Awareness Month.
That is all.
Went on a mini road trip this weekend. Very stressful, but made it there & back.
Still fighting with the school.
Got the wheelchair last Wednesday. She is a pro at it already. I know DH hates it, but it is such huge help already. He will come around eventually.
We've all had colds again too.
Computer crashed, had to totally clear the thing & start fresh. Those viruses suck.
Work is HORRIBLE! I want to quit so bad, but can't afford it. I am on the look out for a new job.
Been a bad bloggy friend, but will get back on the horse.
It's Autism Awareness Month.
That is all.
Friday, March 12, 2010
The Exhaustion
I am so tired of fighting everything. It really gets old. I didn't realize that when you become a SNK mom you also have to turn into a prize fighter.
The whole school thing is really wearing on me. I talked to the lady at the state BOE yesterday. I am not too convinced that they will do the right thing. She was attempting to tell me that they didn't have to do certain things. That sent up huge red flags & set off alarm bells in my brain. It is CRAP! They are not above the federal law. I am just going to try to relax a bit & wait until I hear more from them. They were supposed to call today & so far, at 2:30PM no call. Again, not very convincing. I am mentally preparing myself to retain the attorney and go to due process. I am not sure mediation can help these yahoos. Ding-Ding Round 2
Insurance. What more is there to say? Can't live without it if you have medical issues, going broke paying for it. Now, my latest fight is with our dental insurance. Even worse, it is from almost a year ago that I am just finding out about this. Things they say they pay for they are denying. I was slightly embarrassed when we got to the dentist this morning & was told we had an outstanding balance. On the dentists behalf, they never sent me the bill. I would know if it did cause that is the only dental claim I made last year. WTH? (shame on me for not getting myself to the dentist) I am also still trying to get Ci.gna to pay for some stuff from my hospitalization too. Ding-Ding Round 3
Other things wearing me down:
My stupid job. Don't get me wrong, I love what I do. I am just sick of all the other BS. Just let me do my job & take care of the patients. Stop inundating me with all the extra junk you expect us to do. Also, don't tell me every little thing I do wrong & never tell me what I do right. I have taught MM to say Upper Managment Stinks. That makes me smile.
My rotten sinuses are requiring another surgery. Yep. Last one didn't take. This one is way more risky & kind of my last hope. Not too happy & haven't even scheduled it cause I don't want to deal right now. This also is not the ideal time of year for me since allergy season is about to kick in (hopefully, come on Spring).
MM needs to be sedated & intubated for a dental procedure. Her baby teeth aren't falling out & the permanent teeth are coming in like crazy. I believe he said 4 teeth will have to be pulled, possibly more. She will also get her xrays & teeth cleaned then too cause she wouldn't let them in her mouth AT ALL today. Well, she wouldn't let the yahoo hygienist clean her teeth. The girl was really a butt & it is a pediatric office! I just don't want to go into the way she acted, but I was actually glad my kid has a huge gag reflex & throws up at the drop of a dime. TWICE on her! LOL Serves her right for not listening & being inpatient with a child. Needing to go to the hospital for dental procedure = more insurance fights!
Like everyone else, all the doctor appointments come up at once. We have had 4 appointments this week alone. Bye-bye any extra cash we had!
Now, to end things on a good note:
I have started clipping coupons like mad. I have saved over $200 that last few weeks. There are some really cool websites out there to help you.
I have found a really nice community resource I wasn't aware of. It is an olympic sized indoor pool & the price for a membership is super, duper affordable! The guy was really nice & gave us a free pass to check it out tomorrow. Can't wait to take my little fishy.
I have time off in about 3 weeks!
Spring is on the way! We had a wonderful thunderstorm here today. The crocuses are blooming & the daffodils are starting to spring up.
The whole school thing is really wearing on me. I talked to the lady at the state BOE yesterday. I am not too convinced that they will do the right thing. She was attempting to tell me that they didn't have to do certain things. That sent up huge red flags & set off alarm bells in my brain. It is CRAP! They are not above the federal law. I am just going to try to relax a bit & wait until I hear more from them. They were supposed to call today & so far, at 2:30PM no call. Again, not very convincing. I am mentally preparing myself to retain the attorney and go to due process. I am not sure mediation can help these yahoos. Ding-Ding Round 2
Insurance. What more is there to say? Can't live without it if you have medical issues, going broke paying for it. Now, my latest fight is with our dental insurance. Even worse, it is from almost a year ago that I am just finding out about this. Things they say they pay for they are denying. I was slightly embarrassed when we got to the dentist this morning & was told we had an outstanding balance. On the dentists behalf, they never sent me the bill. I would know if it did cause that is the only dental claim I made last year. WTH? (shame on me for not getting myself to the dentist) I am also still trying to get Ci.gna to pay for some stuff from my hospitalization too. Ding-Ding Round 3
Other things wearing me down:
My stupid job. Don't get me wrong, I love what I do. I am just sick of all the other BS. Just let me do my job & take care of the patients. Stop inundating me with all the extra junk you expect us to do. Also, don't tell me every little thing I do wrong & never tell me what I do right. I have taught MM to say Upper Managment Stinks. That makes me smile.
My rotten sinuses are requiring another surgery. Yep. Last one didn't take. This one is way more risky & kind of my last hope. Not too happy & haven't even scheduled it cause I don't want to deal right now. This also is not the ideal time of year for me since allergy season is about to kick in (hopefully, come on Spring).
MM needs to be sedated & intubated for a dental procedure. Her baby teeth aren't falling out & the permanent teeth are coming in like crazy. I believe he said 4 teeth will have to be pulled, possibly more. She will also get her xrays & teeth cleaned then too cause she wouldn't let them in her mouth AT ALL today. Well, she wouldn't let the yahoo hygienist clean her teeth. The girl was really a butt & it is a pediatric office! I just don't want to go into the way she acted, but I was actually glad my kid has a huge gag reflex & throws up at the drop of a dime. TWICE on her! LOL Serves her right for not listening & being inpatient with a child. Needing to go to the hospital for dental procedure = more insurance fights!
Like everyone else, all the doctor appointments come up at once. We have had 4 appointments this week alone. Bye-bye any extra cash we had!
Now, to end things on a good note:
I have started clipping coupons like mad. I have saved over $200 that last few weeks. There are some really cool websites out there to help you.
I have found a really nice community resource I wasn't aware of. It is an olympic sized indoor pool & the price for a membership is super, duper affordable! The guy was really nice & gave us a free pass to check it out tomorrow. Can't wait to take my little fishy.
I have time off in about 3 weeks!
Spring is on the way! We had a wonderful thunderstorm here today. The crocuses are blooming & the daffodils are starting to spring up.
Tuesday, March 9, 2010
A Letter to Insurance PART 2
Dear Ci.gna,
I don't really want to say thank you. I just want to let you know IT IS ABOUT TIME! You finally decided to do the right thing. It only took me 3 months, 3 appeals, multiple letters & support notes from myself and the doctors, lots of trips to the doctor for letters, a large amount of hoop jumping, too much stress and too many tears to count. I am sure you were hoping I would go away and not do all the work it required to get my daughter a simple lightweight pediatric wheelchair. WRONG!
After you had a meeting of your Medical Necessity Committee (which I opted to not sit in via conference call cause I let go and let God), you sent a letter to ME (not MM) telling me you will cover her chair. I am assuming the persons on this committee understood Spastic Diplegic Cerebral Palsy. I am quite sure this cost a large amount of extra money and time on your company's behalf. So, the chair will be whatever the price it is PLUS the cost of the 2 RNs & 1 MD on the committe, the cost of the letters (which were overnighted) and the appeals associates time. Not a very good use of resources in my opinion. I now know why my premiums keep going up and yet, you are paying for less. Sounds like your customers need to have a utilization review of your company and deny salary of certain people for creating BS work.
F#$k you very much for all of the added stress in my life. I am quite sure you will be denying my future claims for hypertension and anxiety.
Sincerely,
I don't really want to say thank you. I just want to let you know IT IS ABOUT TIME! You finally decided to do the right thing. It only took me 3 months, 3 appeals, multiple letters & support notes from myself and the doctors, lots of trips to the doctor for letters, a large amount of hoop jumping, too much stress and too many tears to count. I am sure you were hoping I would go away and not do all the work it required to get my daughter a simple lightweight pediatric wheelchair. WRONG!
After you had a meeting of your Medical Necessity Committee (which I opted to not sit in via conference call cause I let go and let God), you sent a letter to ME (not MM) telling me you will cover her chair. I am assuming the persons on this committee understood Spastic Diplegic Cerebral Palsy. I am quite sure this cost a large amount of extra money and time on your company's behalf. So, the chair will be whatever the price it is PLUS the cost of the 2 RNs & 1 MD on the committe, the cost of the letters (which were overnighted) and the appeals associates time. Not a very good use of resources in my opinion. I now know why my premiums keep going up and yet, you are paying for less. Sounds like your customers need to have a utilization review of your company and deny salary of certain people for creating BS work.
F#$k you very much for all of the added stress in my life. I am quite sure you will be denying my future claims for hypertension and anxiety.
Sincerely,
Meghatrons Mom
I will be writing to Variety, The Children's Charity, to thank them for covering the chair & the chair place will be refunding them their money. (I might need them to pay for her next chair)
Sometimes, it is worth the fight.
Sunday, March 7, 2010
Brain Thaw
The sun has come out. I have my formal complaint filed, I am just waiting to here from the State BOE. If interested, here it is. Hope this helps if any of you ever have to do it, although I pray you never will. (all names have been replaced with *****) Let me know what you think, now that I feel I have a degree in special education law! LOL
Attachment to Formal Complaint
Note: Exhibits are attached with complaint. Recording is in minutes from the recording this parent made during the meeting.
#1 Failure to do Reevaluations in a timely manner.
--The District failed to not only provide but did not even begin the reevaluation process within the required time frame. The triennial reevaluations were due on March 8, 2009. (Exhibits A, B, C, D) The District did not even request for the reevaluations to be done until September 23, 2009 (Exhibit E). The District is out of compliance with IDEA part D Sec 300.303. Even being late, they were not done in a timely manner nor provided in a timely manner. The reports were still being done up until the IEP meeting on February 8, 2010. (Exhibit F.1) The District is out of compliance with IDEA part D Sec 300.301 (c) 1.i.
#2 Failure to comply with request to Review Records and Inspect Records in a timely manner
--The District failed to allow this parent to inspect and review any and all reports prior to the IEP meeting scheduled on January 26, 2010. An email was sent to *****, Resource & Case Manager, on January 20, 2010, requesting any of the reports, updates evaluations (which should have been triennial reevaluations) prior to the January 26, 2010, IEP meeting (Exhibit G) Only 2 reports were received, occupational therapy & physical therapy. The meeting had to be re-scheduled for February 9, 2010. Again, an email was sent on February 1, 2010 requesting the remaining reports (Exhibit H). An incomplete speech/language report was sent home with ***** on February 8, 2010 (Exhibit F.2). The District is out of compliance with IDEA 300.613 (a) comply with a request without unnecessary delay and before any meeting regarding an IEP
#3 Failure to comply with request to Review Records and Inspect Records in a timely manner
-- The District failed to allow this parent to review & inspect the psychology triennial reevaluation when requested. Emails were sent by this parent on January 20, 2010 & on February 1, 2010 (Exhibits G, H), requesting to review any reports prior to the IEP meeting. An email was sent on February 4, 2010, by *****, Resource & Case Manager. It stated that the school psychologist’s supervisor rather them go over the results with parents in person & she would be happy to do it 30 minutes prior to the meeting (Exhibit I). I then inquired during the IEP meeting on February 9, 2010 (which was recorded by this parent & The District), why I couldn't have had the report prior to since it is my right. *****, school psychologist, stated “it is our county policy to not” (Recording 1:46:52). The District is out of compliance with IDEA 300.613 (a). comply with a request without unnecessary delay and before any meeting regarding an IEP
--The District has failed to allow this parent to review any data collection or anecdotal made supporting the IEP goals. This parent asked multiple times during February 9, 2010, IEP meeting to see the data supporting goals from disciplines (SL/T Recording 1:40:12, 59:44; OT Recording 1:03:34; Resource Recording 21:05). As of this writing, no data has ever been provided to this parent. The District is out of compliance with IDEA 300.613 (a). comply with a request without unnecessary delay and before any meeting regarding an IEP
#4 Failure to do Re-evaluations in a timely manner.
---The District failed to do a formal physical therapy reevaluation for my daughter’s triennial reevaluation (Recording 1:12:45). The physical therapist, *****, submitted a report to us on January 27, 2010, for the February 9, 2010, IEP meeting (Exhibit J,). The report was almost the same report from January 2009 (Exhibit K). It had errors in it as well (Exhibit J.1, J.2). The District is out of compliance of IDEA part D Sec 300.303 (b) (2) must occur at least once every 3 years.
#5 Failure to make Assistive Technology Available in order to receive FAPE
---The District has failed to provide what is required for my daughter to access all of her learning materials through her Assistive Technology (a label maker for answering worksheets, a word processor for writing homework) (Exhibit L). Instead the District has continued to require me to fund the label maker & refills, printer ink for school, printer ink for home, paper etc. (Exhibits M & O, Recording 53:40, 53:32 52:19) The occupational therapy reevaluation (January 12, 2010) clearly shows a need for Assistive Technology, listing label maker & computer (Exhibit N). The OT also stated during February 9. 2010, meeting that “underlying skills to complete written expression in a traditional fashion are limited and delayed, so there has to be some type of strategies for written expression” (Recording 54:28). The District has also refused to include the exact needs within the IEP as requested, only placing AT- Adapted Writing Tools under Supplementary Aids on the IEP (Exhibit R). The District is out of compliance with IDEA 602 (2) (B) purchasing, leasing, or otherwise providing for the acquisition of assistive technology devices by such child; 300.6 (c) Selecting, designing, fitting, customizing, adapting, applying, maintaining, repairing, or replacing assistive technology devices & 300.105 (b) On a case-by-case basis, the use of school-purchased assistive technology devices in a child's home or in other settings is required if the child's IEP Team determines that the child needs access to those devices in order to receive FAPE.
#6 The District Failed to provide FAPE by addressing goals that were met, instead continued to just allow the skills to stagnate instead of proposing new objectives/goals for there to be consistent educational progress (Exhibits P & Q).
#7 The District has failed to appropriately include within the IEP what is necessary for my daughter to travel safely on the bus under supplementary aids/services. A letter of concern in regards to bus safety was submitted by Dr. ***** at IEP meeting held April 28, 2009 (Exhibit S). These parents also expressed concern in The District wanting to remove daughter from a five point harness on the bus at meeting on February 9, 2010 (Recording 1:07:39). The principal, ***** stated “Assistant said she is getting too big for car seat on the bus. The driver has suggested maybe looking at a seat belt.” (Recording 1:09:34, 1:08:00) Parent stated “Seems straps need to be readjusted every morning like a smaller child rides in the seat too” (Recording 1:06:25, 28:37). The District is out of compliance with **** State Board of Education Rule 0520-1-9-.05 (3) (d). There were also bussing recommendations made at April 28, 2009 meeting that were not added back to current IEP (Exhibit T, PT discussed this Recording 1:09:15). A letter with list of objections was sent on February 23, 2010, to **** (Exhibit U). As of writing of this complaint, no reply has been made by The District.
#8 The District has continually failed to appropriately include any of our parental concerns on the IEP (Exhibits U& V). The February 9, 2010 IEP Parent Concerns part is left blank, even though we had several concerns in the meeting (Exhibit V, Recording: 1:28:45, 57:03, 56:00, 30:42, 24:50, 14:42) We were never formally asked our concerns as meetings in the past. The IEP is left blank on the parents stated draft (Exhibit V).
Attachment to Formal Complaint
Note: Exhibits are attached with complaint. Recording is in minutes from the recording this parent made during the meeting.
#1 Failure to do Reevaluations in a timely manner.
--The District failed to not only provide but did not even begin the reevaluation process within the required time frame. The triennial reevaluations were due on March 8, 2009. (Exhibits A, B, C, D) The District did not even request for the reevaluations to be done until September 23, 2009 (Exhibit E). The District is out of compliance with IDEA part D Sec 300.303. Even being late, they were not done in a timely manner nor provided in a timely manner. The reports were still being done up until the IEP meeting on February 8, 2010. (Exhibit F.1) The District is out of compliance with IDEA part D Sec 300.301 (c) 1.i.
#2 Failure to comply with request to Review Records and Inspect Records in a timely manner
--The District failed to allow this parent to inspect and review any and all reports prior to the IEP meeting scheduled on January 26, 2010. An email was sent to *****, Resource & Case Manager, on January 20, 2010, requesting any of the reports, updates evaluations (which should have been triennial reevaluations) prior to the January 26, 2010, IEP meeting (Exhibit G) Only 2 reports were received, occupational therapy & physical therapy. The meeting had to be re-scheduled for February 9, 2010. Again, an email was sent on February 1, 2010 requesting the remaining reports (Exhibit H). An incomplete speech/language report was sent home with ***** on February 8, 2010 (Exhibit F.2). The District is out of compliance with IDEA 300.613 (a) comply with a request without unnecessary delay and before any meeting regarding an IEP
#3 Failure to comply with request to Review Records and Inspect Records in a timely manner
-- The District failed to allow this parent to review & inspect the psychology triennial reevaluation when requested. Emails were sent by this parent on January 20, 2010 & on February 1, 2010 (Exhibits G, H), requesting to review any reports prior to the IEP meeting. An email was sent on February 4, 2010, by *****, Resource & Case Manager. It stated that the school psychologist’s supervisor rather them go over the results with parents in person & she would be happy to do it 30 minutes prior to the meeting (Exhibit I). I then inquired during the IEP meeting on February 9, 2010 (which was recorded by this parent & The District), why I couldn't have had the report prior to since it is my right. *****, school psychologist, stated “it is our county policy to not” (Recording 1:46:52). The District is out of compliance with IDEA 300.613 (a). comply with a request without unnecessary delay and before any meeting regarding an IEP
--The District has failed to allow this parent to review any data collection or anecdotal made supporting the IEP goals. This parent asked multiple times during February 9, 2010, IEP meeting to see the data supporting goals from disciplines (SL/T Recording 1:40:12, 59:44; OT Recording 1:03:34; Resource Recording 21:05). As of this writing, no data has ever been provided to this parent. The District is out of compliance with IDEA 300.613 (a). comply with a request without unnecessary delay and before any meeting regarding an IEP
#4 Failure to do Re-evaluations in a timely manner.
---The District failed to do a formal physical therapy reevaluation for my daughter’s triennial reevaluation (Recording 1:12:45). The physical therapist, *****, submitted a report to us on January 27, 2010, for the February 9, 2010, IEP meeting (Exhibit J,). The report was almost the same report from January 2009 (Exhibit K). It had errors in it as well (Exhibit J.1, J.2). The District is out of compliance of IDEA part D Sec 300.303 (b) (2) must occur at least once every 3 years.
#5 Failure to make Assistive Technology Available in order to receive FAPE
---The District has failed to provide what is required for my daughter to access all of her learning materials through her Assistive Technology (a label maker for answering worksheets, a word processor for writing homework) (Exhibit L). Instead the District has continued to require me to fund the label maker & refills, printer ink for school, printer ink for home, paper etc. (Exhibits M & O, Recording 53:40, 53:32 52:19) The occupational therapy reevaluation (January 12, 2010) clearly shows a need for Assistive Technology, listing label maker & computer (Exhibit N). The OT also stated during February 9. 2010, meeting that “underlying skills to complete written expression in a traditional fashion are limited and delayed, so there has to be some type of strategies for written expression” (Recording 54:28). The District has also refused to include the exact needs within the IEP as requested, only placing AT- Adapted Writing Tools under Supplementary Aids on the IEP (Exhibit R). The District is out of compliance with IDEA 602 (2) (B) purchasing, leasing, or otherwise providing for the acquisition of assistive technology devices by such child; 300.6 (c) Selecting, designing, fitting, customizing, adapting, applying, maintaining, repairing, or replacing assistive technology devices & 300.105 (b) On a case-by-case basis, the use of school-purchased assistive technology devices in a child's home or in other settings is required if the child's IEP Team determines that the child needs access to those devices in order to receive FAPE.
#6 The District Failed to provide FAPE by addressing goals that were met, instead continued to just allow the skills to stagnate instead of proposing new objectives/goals for there to be consistent educational progress (Exhibits P & Q).
#7 The District has failed to appropriately include within the IEP what is necessary for my daughter to travel safely on the bus under supplementary aids/services. A letter of concern in regards to bus safety was submitted by Dr. ***** at IEP meeting held April 28, 2009 (Exhibit S). These parents also expressed concern in The District wanting to remove daughter from a five point harness on the bus at meeting on February 9, 2010 (Recording 1:07:39). The principal, ***** stated “Assistant said she is getting too big for car seat on the bus. The driver has suggested maybe looking at a seat belt.” (Recording 1:09:34, 1:08:00) Parent stated “Seems straps need to be readjusted every morning like a smaller child rides in the seat too” (Recording 1:06:25, 28:37). The District is out of compliance with **** State Board of Education Rule 0520-1-9-.05 (3) (d). There were also bussing recommendations made at April 28, 2009 meeting that were not added back to current IEP (Exhibit T, PT discussed this Recording 1:09:15). A letter with list of objections was sent on February 23, 2010, to **** (Exhibit U). As of writing of this complaint, no reply has been made by The District.
#8 The District has continually failed to appropriately include any of our parental concerns on the IEP (Exhibits U& V). The February 9, 2010 IEP Parent Concerns part is left blank, even though we had several concerns in the meeting (Exhibit V, Recording: 1:28:45, 57:03, 56:00, 30:42, 24:50, 14:42) We were never formally asked our concerns as meetings in the past. The IEP is left blank on the parents stated draft (Exhibit V).
Friday, February 26, 2010
Brain Freeze
And it's not from this ridiculously cold winter either.
I am spending every day off & each spare minute I have putting together my administrative complaint for the state board of education. Each complaint I have has to be backed up by the correct part of the law as well as show data (or lack of) supporting my complaint. It is a large amount of research & tricky wording to get the complaint "just right". I have worked on it for several hours each day off until my head hurts & my eyes can't focus. I feel like I am back in school again too with as much work & research I am doing here.
Sadly, the list of complaints I have is at 8 items. This means that MM's rights under IDEA and to receive FAPE have been violated that many times. It is ridiculous! This school district is so lacking & they have a culture of poor service for special education. I can't figure out if it is the entire county or just this school. I think it is a mixture of both.
It makes me even sadder to think that I will be putting up with this for at least the next 11 years. I hope that we will be able to eventually sell our house & move to the next county over. I am not naive to think moving will magically make all of our problems disappear, but I do think a large majority of them will be alleviated.
After I file this administrative complaint & receive notice they got it, I will be filing the papers for mediation. Waiting to file for mediation is in hopes that it will give me some leverage when they realize they are being investigated. This was on advice from a wonderful parental advocate. She is so super helpful! I need to get her & my bestie a gift card once this is all done. I am hoping I do not have to go to Due Process, but will if needed.
Have you ever had to file a complaint, go to mediation or due process? If so, I would love to hear from you!
On a different note: Some of these feelings I keep posting about may be medically related. I had a dr appt the other day. I have had some problems with my heart since this last illness. The dr checked my thryoid. It appears I have a major hypothyroidism! (googl.e some of the symptoms and you will find many things I have complained of: severe fatigue, loss of energy, weight gain, difficulty losing weight, depression, headaches, allergies that get worse, hypertension, increased heart rate, lack of libido, memory loss, irritability, fuzzy thinking, difficulty following conversation or train of thought). I am curious to see if some of my elevated BP comes down with treating this, as well as my depression. Fingers crossed that it is a simple little pill that will give me the boost I need & help get me off of some of the crazy high doses of BP meds & anti depressants!
And MM has ANOTHER cold/upper airway infection. I hate auto immune issues.
I am spending every day off & each spare minute I have putting together my administrative complaint for the state board of education. Each complaint I have has to be backed up by the correct part of the law as well as show data (or lack of) supporting my complaint. It is a large amount of research & tricky wording to get the complaint "just right". I have worked on it for several hours each day off until my head hurts & my eyes can't focus. I feel like I am back in school again too with as much work & research I am doing here.
Sadly, the list of complaints I have is at 8 items. This means that MM's rights under IDEA and to receive FAPE have been violated that many times. It is ridiculous! This school district is so lacking & they have a culture of poor service for special education. I can't figure out if it is the entire county or just this school. I think it is a mixture of both.
It makes me even sadder to think that I will be putting up with this for at least the next 11 years. I hope that we will be able to eventually sell our house & move to the next county over. I am not naive to think moving will magically make all of our problems disappear, but I do think a large majority of them will be alleviated.
After I file this administrative complaint & receive notice they got it, I will be filing the papers for mediation. Waiting to file for mediation is in hopes that it will give me some leverage when they realize they are being investigated. This was on advice from a wonderful parental advocate. She is so super helpful! I need to get her & my bestie a gift card once this is all done. I am hoping I do not have to go to Due Process, but will if needed.
Have you ever had to file a complaint, go to mediation or due process? If so, I would love to hear from you!
On a different note: Some of these feelings I keep posting about may be medically related. I had a dr appt the other day. I have had some problems with my heart since this last illness. The dr checked my thryoid. It appears I have a major hypothyroidism! (googl.e some of the symptoms and you will find many things I have complained of: severe fatigue, loss of energy, weight gain, difficulty losing weight, depression, headaches, allergies that get worse, hypertension, increased heart rate, lack of libido, memory loss, irritability, fuzzy thinking, difficulty following conversation or train of thought). I am curious to see if some of my elevated BP comes down with treating this, as well as my depression. Fingers crossed that it is a simple little pill that will give me the boost I need & help get me off of some of the crazy high doses of BP meds & anti depressants!
And MM has ANOTHER cold/upper airway infection. I hate auto immune issues.
Sunday, February 21, 2010
Where are you?
I miss the old me.
How I used to describe myself:
Love to laugh, joke & just have fun. A perfectionist who likes to succeed & do everything as the best. Not a jealous type. Not quick to anger. Peacemaker, fixer, go-getter. Not a yeller or a fighter. Assertive. Naive. Independent & self-reliant. Dreamer but a serious planner, who can be spontaneous (especially when it comes to road trips) Never skinny, but fit & curvy. Organized & a good housekeeper.
After my bout of M.RS.A infection that could have cost me my life, I changed. That was a good thing. It made me appreciate life a little more. It made me not take things for granted. It scared me too, facing my own mortality. And I packed on weight.
I finally got pregnant with MM. I never complained at all during the pregnancy. It had a rocky start and horrific all-day sickness through out the entire pregnancy. I made it farther than anyone thought I would. I just kept plugging along, one day at a time. It wasn't the perfect pregnancy. Nothing went as I planned. It was okay though. We were having a baby. Then I developed preeclampsia & all things changed. It certainly was different being on the other side of the incubator. I had to rely on others to take care of me AND my child. I learned at times I was helpless. I realized I was, once again, a failure at something. I again learned anger. Anger at all the easy pregnancies; anger at babies being born on time; anger at ladies who got to have their babies in the room with them & leave the hospital with their babies. I learned I could be passive-aggressive with NICU nurses. I lost my ability to speak up when it came to MM & what was best because I was so sick myself. I also got intimidated by others cause they could care for my child better than me.
We brought her home & I thought we would live happily ever after. Wrong- there went my naivity. She was a lot of work, high maintenance. Slowly clutter over came the house. Then one diagnosis after another came. I was constantly on the road, going from one doctor or therapy to the next or people were coming to the house for treatment. Life became a whirlwind of this stuff along with working nearly full time. Something had to give, so the house became kind of clean and cluttered, not neat & spotless. Once more, anger boiled up cause my life wasn't kinder.mus.ic, mommy playdates & on time milestones. Helplessness came on cause of all the therapists knowing how to help fix what is wrong with my daughter. I lost all my spontaneity cause of all the incessant appointments, the autism, the sensory issues. I lost alot of my dreams. I learned I can't fix everything. More anxiety & depression set in, once I woke up from the first year fog, but it settled in and has stayed. I learned how quickly I could get angry at everyone when stressed. And I packed on weight.
Moving to the public school system was a real eye opener. I have learned I can fly off the handle and go from zero to pi$$ed off in 0.2 seconds. I have learned I can yell (at whoever is nearby) and FIGHT. OMG, can I fight, but mostly out of necessity. None of this is fun. I do have fun sometimes, but most of my life is stress & work.
So, like I said, I miss the old me. I am working hard trying to find parts of the old me as the new me moves through this life. I am trying to lose weight. So far, I have lost 11 lbs since the beginning of the year. Pretty good considering I have been on large amounts of ster.oids for the last 3 weeks. I have started keeping up with the house again. It has never been dirty, but it is now decluttered & super clean the way I like it. I am being more assertive when it comes to matters of MM and not just taking for granted what they tell me. I am working on not being so quick to anger & trying to be the happy-go-lucky once more. I am learning I don't have to be perfect all the time and its okay. I don't know if I can ever have back the spontaneity I used to enjoy with all of MM's issues. We ALL are affected by autism in that way. I am only feeling moderately depressed at times, not the severe gripping kind I have felt in the past. (That's not to say it won't creep up on me and grab me again. I take my meds & I will run to counseling when I feel it starting if I can recognize it) Most of all, I want to have lots of fun again. I don't know how I will get there, but I will, slowly but surely.
How I used to describe myself:
Love to laugh, joke & just have fun. A perfectionist who likes to succeed & do everything as the best. Not a jealous type. Not quick to anger. Peacemaker, fixer, go-getter. Not a yeller or a fighter. Assertive. Naive. Independent & self-reliant. Dreamer but a serious planner, who can be spontaneous (especially when it comes to road trips) Never skinny, but fit & curvy. Organized & a good housekeeper.
I haven't been me since May 2000. Almost a decade since I lost myself. Time flies. I realize we all grow & change. This isn't just that.
After my bout of M.RS.A infection that could have cost me my life, I changed. That was a good thing. It made me appreciate life a little more. It made me not take things for granted. It scared me too, facing my own mortality. And I packed on weight.
A couple years later, we started trying to have a baby. It was hard and we lost a pregnancy. I fell apart. Trying to conceive took a toll on us, as it does everyone. Again, I changed. That brought on my first bout with anxiety/depression. I fought through it, with a little bit of meds. It made me angry, sad, jealous. I found out I wasn't good at everything I tried. I found out I can fail. I found out I do have a jealous bone or two in my body. Things that aren't all bad, but certainly different feelings for me. And I packed on weight.
I finally got pregnant with MM. I never complained at all during the pregnancy. It had a rocky start and horrific all-day sickness through out the entire pregnancy. I made it farther than anyone thought I would. I just kept plugging along, one day at a time. It wasn't the perfect pregnancy. Nothing went as I planned. It was okay though. We were having a baby. Then I developed preeclampsia & all things changed. It certainly was different being on the other side of the incubator. I had to rely on others to take care of me AND my child. I learned at times I was helpless. I realized I was, once again, a failure at something. I again learned anger. Anger at all the easy pregnancies; anger at babies being born on time; anger at ladies who got to have their babies in the room with them & leave the hospital with their babies. I learned I could be passive-aggressive with NICU nurses. I lost my ability to speak up when it came to MM & what was best because I was so sick myself. I also got intimidated by others cause they could care for my child better than me.
We brought her home & I thought we would live happily ever after. Wrong- there went my naivity. She was a lot of work, high maintenance. Slowly clutter over came the house. Then one diagnosis after another came. I was constantly on the road, going from one doctor or therapy to the next or people were coming to the house for treatment. Life became a whirlwind of this stuff along with working nearly full time. Something had to give, so the house became kind of clean and cluttered, not neat & spotless. Once more, anger boiled up cause my life wasn't kinder.mus.ic, mommy playdates & on time milestones. Helplessness came on cause of all the therapists knowing how to help fix what is wrong with my daughter. I lost all my spontaneity cause of all the incessant appointments, the autism, the sensory issues. I lost alot of my dreams. I learned I can't fix everything. More anxiety & depression set in, once I woke up from the first year fog, but it settled in and has stayed. I learned how quickly I could get angry at everyone when stressed. And I packed on weight.
Moving to the public school system was a real eye opener. I have learned I can fly off the handle and go from zero to pi$$ed off in 0.2 seconds. I have learned I can yell (at whoever is nearby) and FIGHT. OMG, can I fight, but mostly out of necessity. None of this is fun. I do have fun sometimes, but most of my life is stress & work.
So, like I said, I miss the old me. I am working hard trying to find parts of the old me as the new me moves through this life. I am trying to lose weight. So far, I have lost 11 lbs since the beginning of the year. Pretty good considering I have been on large amounts of ster.oids for the last 3 weeks. I have started keeping up with the house again. It has never been dirty, but it is now decluttered & super clean the way I like it. I am being more assertive when it comes to matters of MM and not just taking for granted what they tell me. I am working on not being so quick to anger & trying to be the happy-go-lucky once more. I am learning I don't have to be perfect all the time and its okay. I don't know if I can ever have back the spontaneity I used to enjoy with all of MM's issues. We ALL are affected by autism in that way. I am only feeling moderately depressed at times, not the severe gripping kind I have felt in the past. (That's not to say it won't creep up on me and grab me again. I take my meds & I will run to counseling when I feel it starting if I can recognize it) Most of all, I want to have lots of fun again. I don't know how I will get there, but I will, slowly but surely.
Saturday, February 20, 2010
The Give Me a Break Line
Hey! Thanks for all the prayers, thoughts, etc cause it worked! His heart is clear this time (he's had stents in the past)!!! It is probably a gi thing like reflux or a hernia. I am so thankful!
We actually got a pass to the Give Me a Break Line for now! Woohoo!
We actually got a pass to the Give Me a Break Line for now! Woohoo!
Thursday, February 18, 2010
Enough Already, 2010!-- UPDATE
We are having one bang up of a year so far.
I told you of my illness hat landed me in the hospital for several days. While I was there, my FIL had to have some stents put in his carotid artery cause he suffered a stroke Christmas eve. My BIL needs another surgery on his legs after having a heart bypass & bypasses for both his legs last year. My sister had a seizure out of no where a few weeks ago. The EEG showed seizure activity, so she is being place on meds & needs a 48 hour EEG. This whole school things is out of control. All of MMs appointments are getting to come around again. I have been avoiding scheduling some of them just so I dont have to deal. I have had horrible insmonia & crazy emotions from the steroids. DH & I are going through another rocky patch, not seeing eye to eye on the school stuff, money, etc.
Now, my mom just called me. My dad is in the ER with chest pains & EKG changes. Possible heart attack.
I am so spent. I am really losing my faith here. I know that God doesn't cause this, but how much more can I handle? Could really use some prayers/vibes or whatever you do. Where is the give me a break line? I REALLY need it.
***He will be having a heart cath tomorrow to see what is going on. Thanks for the prayers!***
I told you of my illness hat landed me in the hospital for several days. While I was there, my FIL had to have some stents put in his carotid artery cause he suffered a stroke Christmas eve. My BIL needs another surgery on his legs after having a heart bypass & bypasses for both his legs last year. My sister had a seizure out of no where a few weeks ago. The EEG showed seizure activity, so she is being place on meds & needs a 48 hour EEG. This whole school things is out of control. All of MMs appointments are getting to come around again. I have been avoiding scheduling some of them just so I dont have to deal. I have had horrible insmonia & crazy emotions from the steroids. DH & I are going through another rocky patch, not seeing eye to eye on the school stuff, money, etc.
Now, my mom just called me. My dad is in the ER with chest pains & EKG changes. Possible heart attack.
I am so spent. I am really losing my faith here. I know that God doesn't cause this, but how much more can I handle? Could really use some prayers/vibes or whatever you do. Where is the give me a break line? I REALLY need it.
***He will be having a heart cath tomorrow to see what is going on. Thanks for the prayers!***
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