Well, today I received my copy of Olivia's IEP (individual education plan). Let me breathe here.....OK, We called the meeting early because she was/is having behavioral issues at school. Not listening, not paying attention, & meltdowns. Luckily, her special Ed teacher and myself are on the same page when it comes to Olivia and how she ought to behave at school. So we called the IEP meeting early to see if we could figure out what was causing these disturbances. She is not on any medications.
We tried that route last fall....Let's just say shell shock both of us! It was horrible. ups and downs and trying to find ways for her to take her pills, the patches didn't have much affect, and the liquid made her physically aggressive.
Needless to say that was all for naught we figured out that we'll never know what is going to set her off. She has no triggers. What sets her off is what sets her off no way for the rest of us to know.
Ok the real reason I started this post today was one little itty bitty thing (if your a parent of a special needs child you know there's nothing that itty bitty)
It was this paragraph:
"6. Description of points made by parent including the parent's description of their child's progress.Parent ask about extended year service. At this time there is no plan to have extended year services in the district. If the district decides to have extended year services Olivia will be able to participate. The parent also has concerns of Olivia's transition to the fourth grade. Olivia will have anew teacher as well as a new special education teacher. The special education teacher will work on transition over the year".
Does anyone see what's wrong?
According to the FEDERAL GOVERNMENT and IDEA 2004:
Extended Year Services
(a) general
1.Each school shall ensure that extended years services are available as necessary to provide free appropriate public education.(FAPE)
2.extended school year services must be provided if a student's IEP team determines on an individual basis, that services are necessary for the provision of FAPE to the student.
3. in implementing the requirements a school may not--
i. limit extended school year services to participate categories of disability; or
ii. unilaterally limit the type, amount, or duration of those services.
(b)definition. As used this section, the term extended year services means special education and related services that:
1. Are provided to a student with a disability:
i. Beyond the normal school year of the school;
ii. In accordance with the students IEP; and
iii. At no cost to the parents of the student;and
2. Meet the standards of the state.
So this means as of this moment my school district is breaking the law. I will get ESY services for my daughter. I do not doubt this. If they have to bus her to another school district to do it they will. In about 2 months I will request another meeting to see what's going on and where she will be going for ESY.
Ahh the joys of parenting a child with special needs!!
Thanks for hangin on thru my rant. I appreciate it!!
Tuesday, December 9, 2008
Friday, December 5, 2008
December,5 2008
Yikes! I have really neglected this mission of mine! I don't want people thinking Olivia's been a dream these last 6 months or a nightmare either. Although..these past few days it seems like there is an exploding volcano in my house and if you don't watch what you say you're going to get hot lava all over you.
Her biggest lava inducer lately is spelling homework. We (Olivia's helper and I) have just implemented a new reward chart. There's lots of fun stuff happening this month and don't forget Christmas. We are hoping the chart will help it's to be used with her behavior chart which I came up with this past November when she began escalating her meltdowns. (Alright, I used the behavior chart that Olivia's teacher has set up in her regular education room.)
Hopefully this will help. She's already lost being able to march in our towns Christmas light parade with her Girl Scout troop. Because of the yelling and screaming she's had the past 2 days over her spelling homework. which turns into yelling at us for any little thing because she just shut her mind off and refuses to listen anymore.
Anyone would of thought that she'd already learnt that this behavior was unacceptable. My other daughter is well aware that meltdowns are not an acceptable way to express ones emotions.
And so it goes on with Olivia.
We also are trying to get her playing more grown up all she wants to do is play that she is a baby.
At nine she should be finding other ways to play.
I can't help but wonder if all this crying and fighting has anything to do with her seeing differences between herself and other kids her age. Also maybe she's pretending she's a baby so much is because it is a lot easier to be a baby then a big kid. And she's really looking for ways to avoid all the work she has to do to succeed.
Her biggest lava inducer lately is spelling homework. We (Olivia's helper and I) have just implemented a new reward chart. There's lots of fun stuff happening this month and don't forget Christmas. We are hoping the chart will help it's to be used with her behavior chart which I came up with this past November when she began escalating her meltdowns. (Alright, I used the behavior chart that Olivia's teacher has set up in her regular education room.)
Hopefully this will help. She's already lost being able to march in our towns Christmas light parade with her Girl Scout troop. Because of the yelling and screaming she's had the past 2 days over her spelling homework. which turns into yelling at us for any little thing because she just shut her mind off and refuses to listen anymore.
Anyone would of thought that she'd already learnt that this behavior was unacceptable. My other daughter is well aware that meltdowns are not an acceptable way to express ones emotions.
And so it goes on with Olivia.
We also are trying to get her playing more grown up all she wants to do is play that she is a baby.
At nine she should be finding other ways to play.
I can't help but wonder if all this crying and fighting has anything to do with her seeing differences between herself and other kids her age. Also maybe she's pretending she's a baby so much is because it is a lot easier to be a baby then a big kid. And she's really looking for ways to avoid all the work she has to do to succeed.
It's hard to tell. I'm sure the up coming holiday has something to do with it too.
I'm always open to new ideas on how to teach Olivia the right way to behave.
Friday, June 27, 2008
June 27,2008
It's been some time since I managed to last sit in front of the computer to add to this blog.It's summer so its hard to get in here to write anything in fact right now is not a very good time either. I have both children today because I cannot get more than 25 hours a week with sec. 24 and we've already used them.
Olivia needs to be kept busy and in some sort of routine. Or else all hell breaks loose like right now. Olivia is currently in a time out her third this morning it's not even 9:30 am. I am not a stringent mother I do not demand perfection from my children if I did Olivia would be in her 6Th time out. I consider myself rather easy going. With exception to the house rules. They are fixed and unchangeable. Screaming and yelling to get what you want is not acceptable. Sticking out your tongue and spitting are not acceptable. These are the behaviors I am dealing with this morning. For just seeming little things such as "Olivia, please wait one minute I am on the phone" or "Olivia it's your sister's turn on the computer please wait for your turn"
It doesn't help she's been up probably hours before the rest of us. Deep in the fog of sleep around 3 or 4 am I recall hearing her talking to herself. Also her birthday party is tomorrow and she's missing out on a day of the town rec. that she's started this week. I can't just send her alone they are not equipped to keep and eye on her. {That's where her hours went.} We lose any unused hours every 90 days now. I need to save time for August when there are no activities available. The extra time I'll hopefully be able to save from when she starts summer school.
So, I understand she's going to have a hard day today. Her 5 year old sister is struggling today too. Most of Olivia's aggression is towards her sister not playing her way. Its hard to hear a 5 year old saying" Now, Olivia that's not nice. Please ask me nicer." In a very calm adult-like voice.
I was going to discuss our "new Sec.24 plan" and how every minute needs to be accounted for. I don't have a problem with that. I know there are people out there not helping there clients properly. I've had one or two of those. Olivia walks all over them. She has an innate gift of knowing who she can use and who she can't. I believe most kids do.
My issue {I say lightly} is the objectives.{ For those of you who don't know about these things I strongly recommend you find out this is what we deal with on a daily basis.} Objectives are the things I'd like for the staff to work on with Olivia. Such as "I will request a break to calm down by august 2008." that is short term goal. I can almost guarantee she will not meet this goal. This is something we've been working on for at least a year now.
The company I work with acknowledges that this plan doesn't work so great right now. They are trying to tweak it as much as they can. It keeps getting sent back from the state rejected and needing revisions.
If you ask me and since your reading this you have I see that State is still spending the same amount of money and aren't saving anything with the new Sec.24 revisions. Instead of in-home support the money is going to office workers who now have to read and revue plans every 90 days. Is that right? Morally or otherwise? I get accountability but at what cost? I Suppose you have to really live it to get it. Don't you guys understand about ethics should a course in ethics should be requirement to take office?
OK I'll get off my soap box now. Wish me luck with the rest of my day. It's going to be a doozy
Olivia needs to be kept busy and in some sort of routine. Or else all hell breaks loose like right now. Olivia is currently in a time out her third this morning it's not even 9:30 am. I am not a stringent mother I do not demand perfection from my children if I did Olivia would be in her 6Th time out. I consider myself rather easy going. With exception to the house rules. They are fixed and unchangeable. Screaming and yelling to get what you want is not acceptable. Sticking out your tongue and spitting are not acceptable. These are the behaviors I am dealing with this morning. For just seeming little things such as "Olivia, please wait one minute I am on the phone" or "Olivia it's your sister's turn on the computer please wait for your turn"
It doesn't help she's been up probably hours before the rest of us. Deep in the fog of sleep around 3 or 4 am I recall hearing her talking to herself. Also her birthday party is tomorrow and she's missing out on a day of the town rec. that she's started this week. I can't just send her alone they are not equipped to keep and eye on her. {That's where her hours went.} We lose any unused hours every 90 days now. I need to save time for August when there are no activities available. The extra time I'll hopefully be able to save from when she starts summer school.
So, I understand she's going to have a hard day today. Her 5 year old sister is struggling today too. Most of Olivia's aggression is towards her sister not playing her way. Its hard to hear a 5 year old saying" Now, Olivia that's not nice. Please ask me nicer." In a very calm adult-like voice.
I was going to discuss our "new Sec.24 plan" and how every minute needs to be accounted for. I don't have a problem with that. I know there are people out there not helping there clients properly. I've had one or two of those. Olivia walks all over them. She has an innate gift of knowing who she can use and who she can't. I believe most kids do.
My issue {I say lightly} is the objectives.{ For those of you who don't know about these things I strongly recommend you find out this is what we deal with on a daily basis.} Objectives are the things I'd like for the staff to work on with Olivia. Such as "I will request a break to calm down by august 2008." that is short term goal. I can almost guarantee she will not meet this goal. This is something we've been working on for at least a year now.
The company I work with acknowledges that this plan doesn't work so great right now. They are trying to tweak it as much as they can. It keeps getting sent back from the state rejected and needing revisions.
If you ask me and since your reading this you have I see that State is still spending the same amount of money and aren't saving anything with the new Sec.24 revisions. Instead of in-home support the money is going to office workers who now have to read and revue plans every 90 days. Is that right? Morally or otherwise? I get accountability but at what cost? I Suppose you have to really live it to get it. Don't you guys understand about ethics should a course in ethics should be requirement to take office?
OK I'll get off my soap box now. Wish me luck with the rest of my day. It's going to be a doozy
Friday, June 13, 2008
June 13, 2008
It's been a long week. Summer vacation is right around the corner. I'm still in the process of trying to fill up Olivia's days before and after EYS (Extended Year Services). Olivia does best with a well scheduled routine with other kids.
She's been unable to concentrate at home lately. She's sad that she's leaving the second grade. Times of transition are always rocky in this house. I guess there is stress when any one's schedule change so traumatically.
Our town has a Summer Rec program Mon-Thurs 8-2 & Fri 8-11. So the first half of summer is going to be pretty busy. Although Olivia will not be able to attend all week at Rec. because her hours for Sec. 24 are only 25 which will leave off Fridays in order for her to have 4 full days at Rec. She can not be left alone there because it's not a structured enough of a program for the counselors to focus exclusively on Olivia. She can be very impulsive and has serious "stranger danger" issues.( I would go but for Abigail. I have nobody to watch her. She's to young to go and I have nobody to watch her. I can't afford a babysitter.)
I'm hoping in July we can arrange for her to go to EYS and have Fridays at Rec. until the Rec. program is over. Having sec. 24 come in about 4 hours a day. Which isn't much help for Olivia.
Then comes August....ugh, I have yet been able to find something she could do until school starts again which I hear is the last full week of August. 2 or 3 weeks with nothing to do will drive everyone crazy.
I have workbooks and papers from the teachers to help keep her busy, but It won't be enough to keep her occupied for long. Also It helps to keep her on track before the school year starts again where it takes her longer to catch up then average kids. I highly advocate for school all year long.
Our area youth sport programs don't have anything she's interested in until until Sept. I'm not very religious but I am hoping to locate a summer school program for August. I think she would benefit from learning the stories: The good Samaritan and the like.
I am also trying to find something for Abigail. She would like to participate in activities like her sister but our funds have depleted miserably. We are lucky to government funding for Olivia so she can go to Rec. and possibly anything else I can find for her to do up to a certain amount which we apply for yearly.
So, wish me luck finding something for her to do so I won't need services from the government. :)
She's been unable to concentrate at home lately. She's sad that she's leaving the second grade. Times of transition are always rocky in this house. I guess there is stress when any one's schedule change so traumatically.
Our town has a Summer Rec program Mon-Thurs 8-2 & Fri 8-11. So the first half of summer is going to be pretty busy. Although Olivia will not be able to attend all week at Rec. because her hours for Sec. 24 are only 25 which will leave off Fridays in order for her to have 4 full days at Rec. She can not be left alone there because it's not a structured enough of a program for the counselors to focus exclusively on Olivia. She can be very impulsive and has serious "stranger danger" issues.( I would go but for Abigail. I have nobody to watch her. She's to young to go and I have nobody to watch her. I can't afford a babysitter.)
I'm hoping in July we can arrange for her to go to EYS and have Fridays at Rec. until the Rec. program is over. Having sec. 24 come in about 4 hours a day. Which isn't much help for Olivia.
Then comes August....ugh, I have yet been able to find something she could do until school starts again which I hear is the last full week of August. 2 or 3 weeks with nothing to do will drive everyone crazy.
I have workbooks and papers from the teachers to help keep her busy, but It won't be enough to keep her occupied for long. Also It helps to keep her on track before the school year starts again where it takes her longer to catch up then average kids. I highly advocate for school all year long.
Our area youth sport programs don't have anything she's interested in until until Sept. I'm not very religious but I am hoping to locate a summer school program for August. I think she would benefit from learning the stories: The good Samaritan and the like.
I am also trying to find something for Abigail. She would like to participate in activities like her sister but our funds have depleted miserably. We are lucky to government funding for Olivia so she can go to Rec. and possibly anything else I can find for her to do up to a certain amount which we apply for yearly.
So, wish me luck finding something for her to do so I won't need services from the government. :)
Monday, June 9, 2008
June 9, 2008
Olivia spent the weekend (sat-sun) with the girl scouts (she's a brownie) in Boston at the museum of science. She had a great time.
Her troop leaders informed me she had several "accidents" during the trip one right before she got inside the rest stop they taken . She was unable to hold it any longer, and then once during the night in her PJ's and there as another close call. They decided to keep asking her every hour or so after these incidents.
The accidents were my fault to a greater extent than Olivia's. I know she forgets to go until she can't hold it any a longer and its twice as bad if she's doing something fun. It'd been a while since she'd been in situation like that and I should of told the troop leaders about the possibility. She still has "accidents" at school too.
She was exhausted by time she got home and I tried to get her straight to bed. To the extent of unintentionally upsetting her younger sister by reversing our evening routine. Olivia made some fuss about a scratch on her leg needing a band aid. I didn't think it did, but I got her the band aid anyway before a real argument started. After 3 trips down stairs for various things water, the band aid, and baby powder I got her to sleep. Then I went to apologize to her sister for the long wait for her story and song.
Around 1 am Olivia climb into my bed. (After I'd asked her to stay her bed all night while putting her to bed.) I let her stay for a while because the house was hot and our room has the only A/C in it. So, around three I roused myself to put her all 65 lbs of her to her own bed. 65 lbs of dead weight. And then I tried to get some more sleep myself.
This morning Olivia popped back into my bed around 5:30 am. And began to tell me more of her trip**
She listened well when I got up and helped her get in the shower. I reminded her twice to make sure she got her hair wet for the shampoo. Then I gave her a little bit of shampoo and let her lather up after making sure her whole head was wet. I gave her several seconds before checking and running my hands thru her hair to make sure she got the shampoo everywhere otherwise she'll miss large sections. I left her to rinse it out and checked back and told her she only had 5 min until I turned off the water. She plugged the tub as she does nearly every time she showers so she can have a bath tub full of water to play in before I turn the water off. She didn't fuss when I turned off the water and just sat down to play. I asked her to let me know when she was ready to get out. I went off to take care of Abigail. I heard her getting out of the tub and went to see if she needed any help. She told me she'd dried herself off and asked if I thought her underwear was on the right way. It was and I helped her finish her dressing.
While I got her sister bathed and ready Olivia declined breakfast saying she'd eat a school and sat to watch TV. Her Nana called and she talked to her about her trip. I had to help translate.
The girls a had couple arguments over toys and not sharing with each other.
Their arguments consist of screaming and yelling and sometimes pushing and/or hitting. And Olivia does not like to listen.
They then argued over who gets on the bus first. We flipped a coin after I insisted that they had to agree to not get upset over the outcome. And to remember who ever didn't get to be the leader today would be tomorrow.
I was glad when the bus finally came.
**Just a note 5:30am is fine. We all generally get up at that time; which is why they go to sleep at 6:30- 7 pm .
Her troop leaders informed me she had several "accidents" during the trip one right before she got inside the rest stop they taken . She was unable to hold it any longer, and then once during the night in her PJ's and there as another close call. They decided to keep asking her every hour or so after these incidents.
The accidents were my fault to a greater extent than Olivia's. I know she forgets to go until she can't hold it any a longer and its twice as bad if she's doing something fun. It'd been a while since she'd been in situation like that and I should of told the troop leaders about the possibility. She still has "accidents" at school too.
She was exhausted by time she got home and I tried to get her straight to bed. To the extent of unintentionally upsetting her younger sister by reversing our evening routine. Olivia made some fuss about a scratch on her leg needing a band aid. I didn't think it did, but I got her the band aid anyway before a real argument started. After 3 trips down stairs for various things water, the band aid, and baby powder I got her to sleep. Then I went to apologize to her sister for the long wait for her story and song.
Around 1 am Olivia climb into my bed. (After I'd asked her to stay her bed all night while putting her to bed.) I let her stay for a while because the house was hot and our room has the only A/C in it. So, around three I roused myself to put her all 65 lbs of her to her own bed. 65 lbs of dead weight. And then I tried to get some more sleep myself.
This morning Olivia popped back into my bed around 5:30 am. And began to tell me more of her trip**
She listened well when I got up and helped her get in the shower. I reminded her twice to make sure she got her hair wet for the shampoo. Then I gave her a little bit of shampoo and let her lather up after making sure her whole head was wet. I gave her several seconds before checking and running my hands thru her hair to make sure she got the shampoo everywhere otherwise she'll miss large sections. I left her to rinse it out and checked back and told her she only had 5 min until I turned off the water. She plugged the tub as she does nearly every time she showers so she can have a bath tub full of water to play in before I turn the water off. She didn't fuss when I turned off the water and just sat down to play. I asked her to let me know when she was ready to get out. I went off to take care of Abigail. I heard her getting out of the tub and went to see if she needed any help. She told me she'd dried herself off and asked if I thought her underwear was on the right way. It was and I helped her finish her dressing.
While I got her sister bathed and ready Olivia declined breakfast saying she'd eat a school and sat to watch TV. Her Nana called and she talked to her about her trip. I had to help translate.
The girls a had couple arguments over toys and not sharing with each other.
Their arguments consist of screaming and yelling and sometimes pushing and/or hitting. And Olivia does not like to listen.
They then argued over who gets on the bus first. We flipped a coin after I insisted that they had to agree to not get upset over the outcome. And to remember who ever didn't get to be the leader today would be tomorrow.
I was glad when the bus finally came.
**Just a note 5:30am is fine. We all generally get up at that time; which is why they go to sleep at 6:30- 7 pm .
Thursday, June 5, 2008
Olivia part2
I left off yesterday stating or implying that I found CDS and we proceeded on with our course of trying to figure out what was "wrong with her" We knew she had massive delays.
I confess this period is not engraved strongly in my mind. I was distracted by the arrival of Abigail. Olivia attended CDS three or four days a week for about 4 hours daily. They told us she had Sensory Integration Dysfunction. Which my husband and I took as a complete diagnosis.--HA!! SI is when your body is unable to or has problems with how to process all the sensory things we all take for granted. It is very common. It's the degree to which people have it that causes issues.
CDS had a quick day seminar on this which my husband and I attended with other parents. What I remember most about it was how the other parents complained there kids wouldn't eat certain things do to texture and temperature and how a lot of information and time was spent sharing ways to get there kids to eat healthy. We didn't have this problem. Thank goodness.
She fit into some of the categorises but not all.
She didn't process pain quite the same as other people. This sounds awful but once when she was less then 2 I'd left her in the living room to play while I did something in the kitchen. She discovered the electric socket. I found her unaware that she had electrocuted herself as she was apparently trying to stick the object back into the outlet before I got to her. Another time one brisk November day she stripped herself naked and went outside by herself and went to play in the sand box. Now I am sure you all must think I am a terrible mother but she could move fast when she wanted.
Then, several year ago I worked in a video store we got a shipment of gag gifts(it was odd but I didn't do the ordering) A pen that gave you a shock. It was enough to keep your arm humming for a moment or 2. My husband gave it to Olivia just to see her reaction (she was around 6 years old) She shocked all of us watching as she proceed to click the pen several times in a row without a reaction. My husband took it and tried it thinking it no longer worked and dropped the pen in surprise as he was shocked by it.
CDS also introduced to us an very novel concept of potty training her at age 4. An egg timer. We set it every 5 to 10 minutes or so then take her to the bathroom. Yeah that was annoying but it got the job done. Finally -- even she got annoyed by it after a day or so. We all still talk fondly of the "pee-pee timer"
We moved during the summer before kindergarten, A very bad move although we were only a town away we ended up going backwards with Olivia's education. We met monthly to discuss Olivia apparently they didn't have anyone else like Olivia in this school and were unsure how to proceed with her. She did well the 1st part of the year. Her teacher loved her. She was pulled out of class for OT, PT and Speech. Then things started getting rough. The school year was half way thru There was more expected out of Olivia. She was stressing and back to biting her classmates. The teacher needed help in her class with Olivia usually only in the last part of the day. Instead of getting help the Principal decide that she needed to go back to preschool she wasn't he felt mature enough to be in the class with kindergartners. That he'd rather have his school pay for head start than to pay to have an Ed tech in the class.
If I had realized that this was going to be bad for Olivia I would of fought with him to sent her to the Bath public school with his school paying for transportation. Olivia needed appropriately aged role models Pre school kids were not her age they were 2 and 3 years younger than her. They took naps she did not she'd make herself pee in order to avoid taking a nap. She still received speech, and OT from the school with the same teachers.
This school also tested Olivia . She tested as mildly to moderately retarded. The psychologist who tested her came to my house to discuss the finding of the testing. She said and I quote"I don't believe Olivia is retarded she's just delayed."
Uh yeah your think so? Could she be delayed because of the MR?
At the time I accepted what she said I mean who wants a kid with MR? Just the label alone conjures up horrible images. I think she didn't want to have to be the one to say it. Who wants to kill a parent who loves their child as much as I did I mean she observed us for over an hour playing by telling them the truth. (Abigail was taking the world's longest nap on this day)
Our landlord wanted to sell the house we were renting so we moved again.
To Lewiston. It was closer to my husbands then job. It definitely had more money in the schools and they were use to kids like Olivia. We kept the same doctor. Who still thought Olivia was still to young for any testing. Lewiston was great for Olivia. the first part of the year was in the special ed room by midyear she transitioned into the regular kindergarten classroom with an ED Tech. She kept on with speech and OT.
We decided the best way to help Olivia further was to buy a house = no more moving. One school for a long time. Unfortunately we could not afford anything in the Lewiston/Auburn area and had to move north to our current small town. Luckily, we live near the center of town so everything is an easy walk for us. Now there are plenty of good things about small towns. You get to know your neighbors and your close to your friends. There are just as many negative things too. In order to get to a doctor or large stores you must drive 30 minutes most times. Not easy when your a one vehicle household. And many of the exciting things to do are in other towns swimming lessons, karate lessons etc... And section 24 won't let Olivia travel more than 100 miles a month which equals 2 swimming lessons a month instead of the 2 per week for the 2 months.
Any how shortly after moving we decided to find the girls a pediatrician instead of a family doctor which is what we had before. He referred us to Edmund N. Ervin in Waterville the first day we met him. It was there we were told in uncertain terms that she did indeed have MR.
The doctor who spoke with us and tested Olivia gave me a pamphlet, if you can call - it that it was a photocopy on folded purple paper about DHS services for MR. I called. They sent me a list of case management services. I went with the company who's Representative left her office came to my house to speak to me and explain what case management was. Instead of just mailing me more pamphlets which didn't really explain anything. I did find out one bright ray of help I could get someone to come in my house and help me with Olivia. I have yet to get into explaining her behaviors Let's just say explosive and unpredictable are very good descriptions. Hopefully my next post will directly deal with just that.
I confess this period is not engraved strongly in my mind. I was distracted by the arrival of Abigail. Olivia attended CDS three or four days a week for about 4 hours daily. They told us she had Sensory Integration Dysfunction. Which my husband and I took as a complete diagnosis.--HA!! SI is when your body is unable to or has problems with how to process all the sensory things we all take for granted. It is very common. It's the degree to which people have it that causes issues.
CDS had a quick day seminar on this which my husband and I attended with other parents. What I remember most about it was how the other parents complained there kids wouldn't eat certain things do to texture and temperature and how a lot of information and time was spent sharing ways to get there kids to eat healthy. We didn't have this problem. Thank goodness.
She fit into some of the categorises but not all.
She didn't process pain quite the same as other people. This sounds awful but once when she was less then 2 I'd left her in the living room to play while I did something in the kitchen. She discovered the electric socket. I found her unaware that she had electrocuted herself as she was apparently trying to stick the object back into the outlet before I got to her. Another time one brisk November day she stripped herself naked and went outside by herself and went to play in the sand box. Now I am sure you all must think I am a terrible mother but she could move fast when she wanted.
Then, several year ago I worked in a video store we got a shipment of gag gifts(it was odd but I didn't do the ordering) A pen that gave you a shock. It was enough to keep your arm humming for a moment or 2. My husband gave it to Olivia just to see her reaction (she was around 6 years old) She shocked all of us watching as she proceed to click the pen several times in a row without a reaction. My husband took it and tried it thinking it no longer worked and dropped the pen in surprise as he was shocked by it.
CDS also introduced to us an very novel concept of potty training her at age 4. An egg timer. We set it every 5 to 10 minutes or so then take her to the bathroom. Yeah that was annoying but it got the job done. Finally -- even she got annoyed by it after a day or so. We all still talk fondly of the "pee-pee timer"
We moved during the summer before kindergarten, A very bad move although we were only a town away we ended up going backwards with Olivia's education. We met monthly to discuss Olivia apparently they didn't have anyone else like Olivia in this school and were unsure how to proceed with her. She did well the 1st part of the year. Her teacher loved her. She was pulled out of class for OT, PT and Speech. Then things started getting rough. The school year was half way thru There was more expected out of Olivia. She was stressing and back to biting her classmates. The teacher needed help in her class with Olivia usually only in the last part of the day. Instead of getting help the Principal decide that she needed to go back to preschool she wasn't he felt mature enough to be in the class with kindergartners. That he'd rather have his school pay for head start than to pay to have an Ed tech in the class.
If I had realized that this was going to be bad for Olivia I would of fought with him to sent her to the Bath public school with his school paying for transportation. Olivia needed appropriately aged role models Pre school kids were not her age they were 2 and 3 years younger than her. They took naps she did not she'd make herself pee in order to avoid taking a nap. She still received speech, and OT from the school with the same teachers.
This school also tested Olivia . She tested as mildly to moderately retarded. The psychologist who tested her came to my house to discuss the finding of the testing. She said and I quote"I don't believe Olivia is retarded she's just delayed."
Uh yeah your think so? Could she be delayed because of the MR?
At the time I accepted what she said I mean who wants a kid with MR? Just the label alone conjures up horrible images. I think she didn't want to have to be the one to say it. Who wants to kill a parent who loves their child as much as I did I mean she observed us for over an hour playing by telling them the truth. (Abigail was taking the world's longest nap on this day)
Our landlord wanted to sell the house we were renting so we moved again.
To Lewiston. It was closer to my husbands then job. It definitely had more money in the schools and they were use to kids like Olivia. We kept the same doctor. Who still thought Olivia was still to young for any testing. Lewiston was great for Olivia. the first part of the year was in the special ed room by midyear she transitioned into the regular kindergarten classroom with an ED Tech. She kept on with speech and OT.
We decided the best way to help Olivia further was to buy a house = no more moving. One school for a long time. Unfortunately we could not afford anything in the Lewiston/Auburn area and had to move north to our current small town. Luckily, we live near the center of town so everything is an easy walk for us. Now there are plenty of good things about small towns. You get to know your neighbors and your close to your friends. There are just as many negative things too. In order to get to a doctor or large stores you must drive 30 minutes most times. Not easy when your a one vehicle household. And many of the exciting things to do are in other towns swimming lessons, karate lessons etc... And section 24 won't let Olivia travel more than 100 miles a month which equals 2 swimming lessons a month instead of the 2 per week for the 2 months.
Any how shortly after moving we decided to find the girls a pediatrician instead of a family doctor which is what we had before. He referred us to Edmund N. Ervin in Waterville the first day we met him. It was there we were told in uncertain terms that she did indeed have MR.
The doctor who spoke with us and tested Olivia gave me a pamphlet, if you can call - it that it was a photocopy on folded purple paper about DHS services for MR. I called. They sent me a list of case management services. I went with the company who's Representative left her office came to my house to speak to me and explain what case management was. Instead of just mailing me more pamphlets which didn't really explain anything. I did find out one bright ray of help I could get someone to come in my house and help me with Olivia. I have yet to get into explaining her behaviors Let's just say explosive and unpredictable are very good descriptions. Hopefully my next post will directly deal with just that.
Wednesday, June 4, 2008
Olivia
I thought I'd give more of a background on Olivia today. I guess I should start at the beginning. I was living in Massachusetts. I'd rather not get into much detail about her natural father and myself because I wasn't very smart and was extremely naive. Sufficed to say it was a very rocky relationship when I got pregnant. He wasn't very supportive and involved unless it suited him. And as I told my daughter He lied to me very very badly. In the end he decided not to be involved.
I developed pre-eclampsia. I was working in retail 40 hours a week on my feet with no chance to sit like the doctors told me to. 9 nine days till my due date I was whisked out of my doctors office into the hospital and induced because my blood pressure was high and they'd found elevated levels of protein in my urine. Pre-eclampsia can be very dangerous for both mother and child.
I was mostly bored waiting for my baby to come. It was nearly sixteen hours of doing nothing but sitting there with a fetal monitor around my belly and an automatic blood pressure cuff that went and tried to squeeze my arm off every 20 minutes or so. I did have a TV in my room and spent the time watching horror movies. It was the only thing on I was even partially interested in. The nurses and I made lots of jokes about what this meant to my baby would she be a zombie?? You really had to be there. No, really then maybe the time would of gone faster. Anyway at 3:06 am Olivia was born. Oh my god it was so incredibly easy. I wasn't in much pain at all. (Don't worry I more than made up for it with Abigail!!) I think now it was so easy because someone knew how tough it was going to be on me later on.
She was born weighing only 5 lbs 8 and half ounces . I still don't know the other 45 lbs I had gained came from. She was so tiny. I was worried I wouldn't be able to take her home because she was so small. We did have to stay an extra day at the hospital however for me my blood pressure took its time coming down.
So I was a new mom!! I never knew how intense it would be to hold my own baby in my arms. I felt as though I'd had a hole in my heart my all my life that I'd never even knew of until the minute no second she was put in my arms. I was complete. It was me and Olivia against the world.
She came home a little jaundiced. Had her first doctors appointment a few days earlier than most newborns because of her size and jaundice appearance. I breast fed her. I knew that would help her jaundice and it did slowly we almost put her under the lights to get rid of it. As it was for the first 2 years of her life when every she ate orange or yellow veggies her little nose would turn yellow. It took 3 months to double her birth size and become 10 lbs. Which is surprising cause she was a very good eater. very good.
I didn't think much of her passing her milestones a little late. I was a first time mother blind to any faults making little excuses for this and that. I had no close friends with children. My mother was 200 hundred miles away and 20-odd years out of practice with babies. Olivia was so happy, friendly, and outgoing even as a baby she'd give strangers big smiles.
Before she learned to crawl she rolled where she wanted to go. She like to roll to the stairs and then pull herself up them. She rolled for a long time before she crawled. I figured she knew the rolling worked so why bother trying to find another way of getting around? Besides she could climb up the stairs. I thought that made it ok.
She only started walking at 18 months because I realized that she needed help. 18 months and still crawling I knew that was not right. So every free chance I worked with her on standing walking and balancing. By the way her doctor didn't seemed that least bit concerned about her walking so late. I was starting to finally hear the bells that something might be off but was still trying to ignore them.
Finally, when I woke up was when my daughter went to daycare. All the other kids were starting to talk at age 1 and 2. Olivia had a few words but mostly grunts and pointing. She was unable to communicate with the kids at daycare so she bit them. A couple of them till they bled.
I had several meetings with the director there and signed so many slips of paper about her biting they finally recommend a service called Early Invention. It's similar to CDS here in Maine however it's only until the age of three. Olivia was 2 and a half when she got in. And after letting the biting go on for way to long the daycare informed me that she had to leave.
I was now in this world I knew nothing about.
Early invention promised the moon but never got us to the launch pad. They just didn't have the capacity. Olivia had to leave before she's gotten any real help. She had preschool one day a week for 2 hours and once month she would get one on one OT for an hour. No speech some sign language. very little sign language taught in the preschool. Then they shipped me to the public school system. Where they could take her but not until spring and for 4 hours day. It was July. I didn't know had rights. I didn't know what I could do.
This is a very sad point in Olivia's story for me. Just the horrible waste of time.
Around this time I met my husband. We decided to move to Maine where I had spent most of my childhood. And I wanted both my children to grow up without all the extra crime and drugs that the children there were blatantly exposed to. Not to be afraid to walk down the street. Especially with Olivia's outgoing and trusting nature. A child predators dream. This is still an issue we have.
2 months after settling into the town of Bath in a housing complex that we affectionately called "the ghetto".(No comparison to a real ghetto at all). We got Olivia set up with CDS.
Tomorrow, I'll Let you know what happened next. I didn't realize how long I'd been going on here. I'll try to keep it shorter on my next post.
I developed pre-eclampsia. I was working in retail 40 hours a week on my feet with no chance to sit like the doctors told me to. 9 nine days till my due date I was whisked out of my doctors office into the hospital and induced because my blood pressure was high and they'd found elevated levels of protein in my urine. Pre-eclampsia can be very dangerous for both mother and child.
I was mostly bored waiting for my baby to come. It was nearly sixteen hours of doing nothing but sitting there with a fetal monitor around my belly and an automatic blood pressure cuff that went and tried to squeeze my arm off every 20 minutes or so. I did have a TV in my room and spent the time watching horror movies. It was the only thing on I was even partially interested in. The nurses and I made lots of jokes about what this meant to my baby would she be a zombie?? You really had to be there. No, really then maybe the time would of gone faster. Anyway at 3:06 am Olivia was born. Oh my god it was so incredibly easy. I wasn't in much pain at all. (Don't worry I more than made up for it with Abigail!!) I think now it was so easy because someone knew how tough it was going to be on me later on.
She was born weighing only 5 lbs 8 and half ounces . I still don't know the other 45 lbs I had gained came from. She was so tiny. I was worried I wouldn't be able to take her home because she was so small. We did have to stay an extra day at the hospital however for me my blood pressure took its time coming down.
So I was a new mom!! I never knew how intense it would be to hold my own baby in my arms. I felt as though I'd had a hole in my heart my all my life that I'd never even knew of until the minute no second she was put in my arms. I was complete. It was me and Olivia against the world.
She came home a little jaundiced. Had her first doctors appointment a few days earlier than most newborns because of her size and jaundice appearance. I breast fed her. I knew that would help her jaundice and it did slowly we almost put her under the lights to get rid of it. As it was for the first 2 years of her life when every she ate orange or yellow veggies her little nose would turn yellow. It took 3 months to double her birth size and become 10 lbs. Which is surprising cause she was a very good eater. very good.
I didn't think much of her passing her milestones a little late. I was a first time mother blind to any faults making little excuses for this and that. I had no close friends with children. My mother was 200 hundred miles away and 20-odd years out of practice with babies. Olivia was so happy, friendly, and outgoing even as a baby she'd give strangers big smiles.
Before she learned to crawl she rolled where she wanted to go. She like to roll to the stairs and then pull herself up them. She rolled for a long time before she crawled. I figured she knew the rolling worked so why bother trying to find another way of getting around? Besides she could climb up the stairs. I thought that made it ok.
She only started walking at 18 months because I realized that she needed help. 18 months and still crawling I knew that was not right. So every free chance I worked with her on standing walking and balancing. By the way her doctor didn't seemed that least bit concerned about her walking so late. I was starting to finally hear the bells that something might be off but was still trying to ignore them.
Finally, when I woke up was when my daughter went to daycare. All the other kids were starting to talk at age 1 and 2. Olivia had a few words but mostly grunts and pointing. She was unable to communicate with the kids at daycare so she bit them. A couple of them till they bled.
I had several meetings with the director there and signed so many slips of paper about her biting they finally recommend a service called Early Invention. It's similar to CDS here in Maine however it's only until the age of three. Olivia was 2 and a half when she got in. And after letting the biting go on for way to long the daycare informed me that she had to leave.
I was now in this world I knew nothing about.
Early invention promised the moon but never got us to the launch pad. They just didn't have the capacity. Olivia had to leave before she's gotten any real help. She had preschool one day a week for 2 hours and once month she would get one on one OT for an hour. No speech some sign language. very little sign language taught in the preschool. Then they shipped me to the public school system. Where they could take her but not until spring and for 4 hours day. It was July. I didn't know had rights. I didn't know what I could do.
This is a very sad point in Olivia's story for me. Just the horrible waste of time.
Around this time I met my husband. We decided to move to Maine where I had spent most of my childhood. And I wanted both my children to grow up without all the extra crime and drugs that the children there were blatantly exposed to. Not to be afraid to walk down the street. Especially with Olivia's outgoing and trusting nature. A child predators dream. This is still an issue we have.
2 months after settling into the town of Bath in a housing complex that we affectionately called "the ghetto".(No comparison to a real ghetto at all). We got Olivia set up with CDS.
Tomorrow, I'll Let you know what happened next. I didn't realize how long I'd been going on here. I'll try to keep it shorter on my next post.
Tuesday, June 3, 2008
Mission Statement/Introductions
I am making this blog for the State of Maine legistors to get an idea of what a family with a special needs child or children go through on a daily basis in the State of Maine. I do not claim that I am the end all be all of families with special needs among them. In fact I consider myself to be lucky compared to other families I know. Some of whom can't get the help I have and desperately need it due to what I call " The stupid regulations which constitute who can get help/assistance and for exactly how long -- which is seldom long enough". I am doing this for us all of us the rich and the poor and the struggling middle(who can't ever get a break).
So introductions/background about my family and self:
I am a 36 year old stay at home mom. I chose to stay at home because of the lack of adequate childcare and cost. I have been working up until 3 years ago. I am capable of working and intend to start again when the new school year starts.
My husband is 38 years old and works full time. He commutes an hour and half both ways. He is also a volunteer fireman in our very small town and is planning on coaching AYS (area youth sports) t-ball this summer.
I have 2 beautiful girls. Olivia is 8 soon to be 9 in July. Abigail is our baby turns 5 this month.
They go to public school. They both love school.
When Olivia was 7 we finally received a diagnosis that she was mild to moderately mentally retarded.
It took Seven years to get this diagnosis because our family doctor kept telling us she was to young for testing. We still kept asking. My husband and I thought she had ADHD. She had all the symptom's. We knew she was delayed we knew there was more wrong then anyone -- CDS, schools or doctors would tell us. It wasn't until we moved into this small town and found a pediatrician did we get a referral to go to Edmund N. Ervin pediatric Center in Waterville.
From that diagnosis we were able to get the help that we needed. And for those of you keeping score at that time we had full health insurance through my husband's job.
My husband had to switch jobs for health and sanity reasons. And we are unable to afford the health plan his company offers. It would cost over $200 every other week. Which means we'd have no water/sewer and electrity. (no need to add the ever increasing oil and gas prices) Sorry if I like having well fed and clean children. Hey, call me crazy. Which means yes, we all receive Mainecare.
On the insurance front I must add Olivia has insurance thru her natural father. So, she is not just sucking up Mainecare funds.
Believe me if we could afford we would have it. I took me years to try to apply for food stamps back when my husband was bringing home only $140 a week. and I was bringing home that every other week (this was before the Abigail was born and we still made to much money!!!).
ahhh, good times.
Yes, I am sarcastic. I was born that way. Much like Olivia was born with MR.
So, this is the start, I hope it helps this cause which means so much to me. I haven't felt the urge to speak up about anything till recently after speaking in front of the house in Augusta this past March where I felt inadequate and so much less eloquent then others and unable to get everything I felt and feared across in a way that would affect anyone.
So introductions/background about my family and self:
I am a 36 year old stay at home mom. I chose to stay at home because of the lack of adequate childcare and cost. I have been working up until 3 years ago. I am capable of working and intend to start again when the new school year starts.
My husband is 38 years old and works full time. He commutes an hour and half both ways. He is also a volunteer fireman in our very small town and is planning on coaching AYS (area youth sports) t-ball this summer.
I have 2 beautiful girls. Olivia is 8 soon to be 9 in July. Abigail is our baby turns 5 this month.
They go to public school. They both love school.
When Olivia was 7 we finally received a diagnosis that she was mild to moderately mentally retarded.
It took Seven years to get this diagnosis because our family doctor kept telling us she was to young for testing. We still kept asking. My husband and I thought she had ADHD. She had all the symptom's. We knew she was delayed we knew there was more wrong then anyone -- CDS, schools or doctors would tell us. It wasn't until we moved into this small town and found a pediatrician did we get a referral to go to Edmund N. Ervin pediatric Center in Waterville.
From that diagnosis we were able to get the help that we needed. And for those of you keeping score at that time we had full health insurance through my husband's job.
My husband had to switch jobs for health and sanity reasons. And we are unable to afford the health plan his company offers. It would cost over $200 every other week. Which means we'd have no water/sewer and electrity. (no need to add the ever increasing oil and gas prices) Sorry if I like having well fed and clean children. Hey, call me crazy. Which means yes, we all receive Mainecare.
On the insurance front I must add Olivia has insurance thru her natural father. So, she is not just sucking up Mainecare funds.
Believe me if we could afford we would have it. I took me years to try to apply for food stamps back when my husband was bringing home only $140 a week. and I was bringing home that every other week (this was before the Abigail was born and we still made to much money!!!).
ahhh, good times.
Yes, I am sarcastic. I was born that way. Much like Olivia was born with MR.
So, this is the start, I hope it helps this cause which means so much to me. I haven't felt the urge to speak up about anything till recently after speaking in front of the house in Augusta this past March where I felt inadequate and so much less eloquent then others and unable to get everything I felt and feared across in a way that would affect anyone.
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