Holland had two more hours of testing this morning and it went well. He got to work with the same guy as last Friday - lots of hands on, memory games, sequencing stuff. I used this time to make a bunch of phone calls to get Holland an appointment for new inserts for his shoes. He has very flat feet (almost no arch) and his ligaments are very weak. Not only is he pidgeon-toed, but with weak ankles, he rotates his foot inward. It's very painful and his legs hurt him every day.
I found out that our new insurance coverage for orthotics is just lousy. Our deductible is $500. The insurance we had last year covered almost all of the orthotic and they only cost about $90. If I was smart (and could predict the future) I would have bought another pair last year so I wouldn't have to pay $425 for these. I chose to go back to the place that did his first pair. (She's also the one that did Egypt's shoe lift for her arthritis - gee, I'm giving her a lot of business!). So I like her and don't feel like using up energy to get the pre-authorization to go somewhere else. My insurance requires a doctor's authorization and the clinic where I was planning to go requires the doctor to set up the appointment. It could take months to get in with these people. It wouldn't matter even if I went to the preferred provider because my deductible is so high. So, now I gotta come up with $425. This means that I won't be able to have any testing for dyslexia done.
I called several places last week to find out about testing. The first place said they do two tests and it will run $800 for both. That includes a report (how generous!) and recommendations for tutoring. So after all that testing is done, I will still have to pay for private tutoring. I heard back from another place today and she at least said they would want all of his testing scores. Then they could get a clearer picture of patterns in learning and then I wouldn't have to pay for duplicate testing. It's so frustrating that the school will not test for dyslexia. They don't consider it a learning disability. And insurance doesn't cover anything like this. How do people afford this? It's obvious I should have been a speech pathologist, a psychologist and learned the Orton-Gillingham method so I wouldn't have to pay anyone to do that.
Monday, April 26, 2010
Saturday, April 24, 2010
Four Hours Down, Four To Go
This past week Holland had 2 sessions of testing with two different people. During our initial meeting, the testers asked if there were any motivations that he would need. I said, oh yes. He's motivated by money - it's his 'love language'! I told them about the weekly "yes, mom" contest we'd been doing and said I'd bring in the poker chips and they could give him whatever they felt he earned for the work.
The first test was on Monday and after arriving and sitting down for about 2 minutes, I could tell it wasn't going to go smoothly. He already complained of being too tired and not wanting to be there. I had Egypt with me and just assumed I'd be able to drop him off and run errands with her. Well, he wouldn't even leave the office to walk over to the testing area. He was freaked that I was going to leave him and started to cry. The tester looked at me and mouthed "it's not worth it to continue if he does this." I told her it wouldn't matter if we came back - he'd still feel the same way later. I finally was able to convince him to at least go look at the room where he'd be so he could be familiar with it and ready for when we DID come back to test. He wasn't cooperative, but managed to show some interest in all the cool toys she had in her office. After about 10 minutes, he finally warmed up to the idea and Egypt and I sat at a table for two hours, right outside her office. Big window and all so he could see that I never left. I was totally unprepared to entertain Egypt for two hours. Luckily, she had these cool magnetic shapes that she played with and I let her play a few games on my iPhone.
He finished the testing and earned 5 poker chips. On Friday we went back for two more hours of cognitive testing (Monday was for reading and writing). I had to drop Egypt and Romania at my mom's house because Romania didn't have school that day. Holland was less thrilled about me leaving the testing area, but due to confidentiality reasons, I couldn't sit in the outer office because there were other kids being tested. Holland reluctantly agreed and I sat in the main hallway for almost 2 hours. This testing was more fun for him - matching, sorting, manipulatives, games. It didn't really feel like testing to him, so he had a good time. He earned 6 poker chips today and the tester even showed him how to play poker during their break.
This week he has one more session with each tester. Then we will schedule a meeting to discuss the results. I did talk to the language tester and voiced my concerns over the possible change in disability status. She said that if the paperwork would have crossed their desk without prior approval, they would have red-flagged it. She said they take those labelings very seriously. And the woman that wanted to change his status didn't even have the authority to change it on her own (how was I to know that?). But that's good. At least I know that more than one person involved has to know what's going on before a huge decision like that is made. She did tell me, based on her first session, that he didn't strike her as MR. He has obvious reading and writing deficits and the bipolar adds a huge variable to that ability to learn something. It was hard for her to know if he would have performed better if she had pushed him more. But he gets frustrated so easily when he's forced to do something he's not good at. (aren't we all??!)
I also called a Parent Advocate place this week to find someone to go with me to the IEP meetings. I'm not sure how helpful they're going to be. They aren't allowed to interject their opinion. They are there to take notes and help you voice your opinions and ask for services. I asked the helpline if they would be able to steer me in the right direction for services and she said no. Added to the befuddled mess is the fact that I homeschool and not all of their advocates know much about laws pertaining to homeschooling and IEP's. Great.
The first test was on Monday and after arriving and sitting down for about 2 minutes, I could tell it wasn't going to go smoothly. He already complained of being too tired and not wanting to be there. I had Egypt with me and just assumed I'd be able to drop him off and run errands with her. Well, he wouldn't even leave the office to walk over to the testing area. He was freaked that I was going to leave him and started to cry. The tester looked at me and mouthed "it's not worth it to continue if he does this." I told her it wouldn't matter if we came back - he'd still feel the same way later. I finally was able to convince him to at least go look at the room where he'd be so he could be familiar with it and ready for when we DID come back to test. He wasn't cooperative, but managed to show some interest in all the cool toys she had in her office. After about 10 minutes, he finally warmed up to the idea and Egypt and I sat at a table for two hours, right outside her office. Big window and all so he could see that I never left. I was totally unprepared to entertain Egypt for two hours. Luckily, she had these cool magnetic shapes that she played with and I let her play a few games on my iPhone.
He finished the testing and earned 5 poker chips. On Friday we went back for two more hours of cognitive testing (Monday was for reading and writing). I had to drop Egypt and Romania at my mom's house because Romania didn't have school that day. Holland was less thrilled about me leaving the testing area, but due to confidentiality reasons, I couldn't sit in the outer office because there were other kids being tested. Holland reluctantly agreed and I sat in the main hallway for almost 2 hours. This testing was more fun for him - matching, sorting, manipulatives, games. It didn't really feel like testing to him, so he had a good time. He earned 6 poker chips today and the tester even showed him how to play poker during their break.
This week he has one more session with each tester. Then we will schedule a meeting to discuss the results. I did talk to the language tester and voiced my concerns over the possible change in disability status. She said that if the paperwork would have crossed their desk without prior approval, they would have red-flagged it. She said they take those labelings very seriously. And the woman that wanted to change his status didn't even have the authority to change it on her own (how was I to know that?). But that's good. At least I know that more than one person involved has to know what's going on before a huge decision like that is made. She did tell me, based on her first session, that he didn't strike her as MR. He has obvious reading and writing deficits and the bipolar adds a huge variable to that ability to learn something. It was hard for her to know if he would have performed better if she had pushed him more. But he gets frustrated so easily when he's forced to do something he's not good at. (aren't we all??!)
I also called a Parent Advocate place this week to find someone to go with me to the IEP meetings. I'm not sure how helpful they're going to be. They aren't allowed to interject their opinion. They are there to take notes and help you voice your opinions and ask for services. I asked the helpline if they would be able to steer me in the right direction for services and she said no. Added to the befuddled mess is the fact that I homeschool and not all of their advocates know much about laws pertaining to homeschooling and IEP's. Great.
Tuesday, April 13, 2010
New Tests Scheduled
I had a really good meeting yesterday with the special ed people from the district. These are the same people that tested Holland 3 years ago when he was first put on his IEP. They are competent, thorough and mindful of his limitations regarding duration of testing. We have scheduled 4 sessions, each 2 hours. I've got it all figured out how I'm going to motivate him to make it through the hours of testing: poker chips.
My sister started this "yes, mom" contest at her house about a month ago. Every time a kid utters the words "yes, mom" and does what was asked, they get a token put in a jar. I've set up jam jars in my kitchen window and bought poker chips for tokens. Each kid has a different color, so there's no swappin' going on. The first week Romania won. Then Egypt won. The third week, Holland had it in the bag. But after a disastrous day and behavior that would have scared the socks off anyone watching, I removed half of his tokens. I didn't want to to it. I wanted the tokens to reflect the positive behavior and what good things he was doing. But I just couldn't let this go by. As it turned out, Romania and Egypt tied, so I took them out for a quick treat of ice cream at McDonald's. From his reaction, you would have thought that I'd
killed a pet or something. Ice cream made him physically distraught. I thought he was going to throw up and I prayed that he didn't destroy anything while I was gone.
So next week, I'm giving poker chips to the testers so they can reward Holland during the testing. Hopefully he'll rack up a huge number of chips and run away with the win. At some point this all has to get better. The tension in this house makes me want to crawl back in bed everyday. If I didn't have to take Romania to the bus, I probably wouldn't get out of bed every day.
My sister started this "yes, mom" contest at her house about a month ago. Every time a kid utters the words "yes, mom" and does what was asked, they get a token put in a jar. I've set up jam jars in my kitchen window and bought poker chips for tokens. Each kid has a different color, so there's no swappin' going on. The first week Romania won. Then Egypt won. The third week, Holland had it in the bag. But after a disastrous day and behavior that would have scared the socks off anyone watching, I removed half of his tokens. I didn't want to to it. I wanted the tokens to reflect the positive behavior and what good things he was doing. But I just couldn't let this go by. As it turned out, Romania and Egypt tied, so I took them out for a quick treat of ice cream at McDonald's. From his reaction, you would have thought that I'd
killed a pet or something. Ice cream made him physically distraught. I thought he was going to throw up and I prayed that he didn't destroy anything while I was gone.
So next week, I'm giving poker chips to the testers so they can reward Holland during the testing. Hopefully he'll rack up a huge number of chips and run away with the win. At some point this all has to get better. The tension in this house makes me want to crawl back in bed everyday. If I didn't have to take Romania to the bus, I probably wouldn't get out of bed every day.
Friday, April 2, 2010
Why Tests Are Bogus
A lot has happened in the past month. Holland finished all his OAKS testing, did all the testing for his IEP re-eval and we got all the results. This is probably why I haven't posted in almost a month. Hard to believe it's been that long since I've had something to say. I actually have lots to say, but just having a hard time saying it.
Someday when the kids are grown and I have no purpose, my purpose is going to be a parent advocate for parents at IEP meetings. I have 3 years of experience with IEP's on the other end: I wrote them for all my deaf students. I sat in on parent meetings and told of the student's progress. I answered questions about goals and test scores. But that didn't prepare me for what happened at my IEP meeting. After cramming what should have been 8 or 9 hour's worth of testing into 6, I went into this meeting hopeful about help I was going to get to help Holland learn to read. I was going to assert myself and straight out ask for what I needed. I'm kind of an oddity to them, I'm sure. I homeschool my kid and he's on an IEP. No one knows who legally is required to help me. The charter school he's enrolled in doesn't have the resources (no on-site resource teacher) and the district says he's not enrolled in one of their schools to help him. Makes you want to scream.
But the fact that I didn't have someone on "my side" sitting with me while the tester told me that my child is no longer considered "learning disabled" and they want to label him "mentally retarded" was something that I couldn't even comprehend. Who would ever think that this incredibly curious, hard-working, industrious kid would ever test as mentally disabled? She started out by telling me that "she believed the test scores to be accurate and valid". It didn't matter that Holland had never met her, she was 30 minutes late to our first meeting, he refused at first to even cooperate and wouldn't work if I wasn't sitting in the room. The second session was spent playing tag. We went to the tester's school and she came to ours. Fourty-five minutes of waiting for her to show up and then she did more testing. The last day we tested, I had all three kids with me. By the end of the session, he was so wiped out that he refused to go on. She had to bribe him with an ice cream gift card. Then she has the nerve to tell me she believed her results were "valid".
The only thing that saved me was hearing my ES remark that the test he was given for this was not the same IQ test he was given 3 years ago. I was so upset, I didn't even catch that. I immediately said I wanted the same test done. We weren't comparing apples to apples. They wanted me to sign something that said I agreed with their results and we would change the IEP accordingly. Guess what? I refused to sign it. I was bawling almost the entire rest of the meeting (which was almost 2 hours). They kept talking like it was a done deal and at one point I remember saying very loudly that he wasn't dumb and I was not going to let them label him as MR. I said that he's already in the system, why does the label need to change. The director said that it more "accurately describes him" to people that would be reading his IEP for services. I said no it didn't. That any IQ test they gave him would not consider any of the amazing science things he does, or what he builds after he takes something apart. He has working memory problems, probably dyslexia (which they don't even test for) and trouble organizing multiple things in his head. All things needed for reading, he struggles with. I do not believe for one second that this is a child who will never learn more than he knows now. He has auditory processing issues that need to be dealt with that they aren't dealing with.
They started talking about programs in the district that would help him. They want him to be in a life skills class. A life skills class would teach how to tie your shoes, or write your name and address. This would not be an environment that would foster his curiosity, let him explore and create, let him discover things. Here at home I push him. I make him write things that he doesn't want to write. These people probably think I am wasting my time teaching him any math beyond simple addition and subtraction, or reading about history or our science. How could I ever consider putting him in a class like this? It would destroy what learning ability he does have because they would have no expectations. Why would they care if he knew about our solar system, or Lewis and Clark or how to skip count by 9's?
I've researched online about parent advocates for IEP meetings. I still haven't figured out how to get one. But I know that no parent should ever feel what I did when I was blindsided in this meeting. I'm still waiting to hear from the special ed department about further testing. I said that I wanted several more tests done before I'd sign anything (and I still don't have to agree with their label). Everything happens at a snail's pace in the world of education. It's very frustrating that this hasn't been figured out and he's in 5th grade. I keep imagining him in 6 or 7 years and feel like time is running out (or it's already too late) to help him. Books I've been reading say 10 or 11 is pretty much the age that a child's brain connections are all made. We had time up until this point to grow those areas and make new connections, but they are wasting time.
By the time he gets the help he needs, he'll be 18. He'll be 18 and won't know how to read.
Someday when the kids are grown and I have no purpose, my purpose is going to be a parent advocate for parents at IEP meetings. I have 3 years of experience with IEP's on the other end: I wrote them for all my deaf students. I sat in on parent meetings and told of the student's progress. I answered questions about goals and test scores. But that didn't prepare me for what happened at my IEP meeting. After cramming what should have been 8 or 9 hour's worth of testing into 6, I went into this meeting hopeful about help I was going to get to help Holland learn to read. I was going to assert myself and straight out ask for what I needed. I'm kind of an oddity to them, I'm sure. I homeschool my kid and he's on an IEP. No one knows who legally is required to help me. The charter school he's enrolled in doesn't have the resources (no on-site resource teacher) and the district says he's not enrolled in one of their schools to help him. Makes you want to scream.
But the fact that I didn't have someone on "my side" sitting with me while the tester told me that my child is no longer considered "learning disabled" and they want to label him "mentally retarded" was something that I couldn't even comprehend. Who would ever think that this incredibly curious, hard-working, industrious kid would ever test as mentally disabled? She started out by telling me that "she believed the test scores to be accurate and valid". It didn't matter that Holland had never met her, she was 30 minutes late to our first meeting, he refused at first to even cooperate and wouldn't work if I wasn't sitting in the room. The second session was spent playing tag. We went to the tester's school and she came to ours. Fourty-five minutes of waiting for her to show up and then she did more testing. The last day we tested, I had all three kids with me. By the end of the session, he was so wiped out that he refused to go on. She had to bribe him with an ice cream gift card. Then she has the nerve to tell me she believed her results were "valid".
The only thing that saved me was hearing my ES remark that the test he was given for this was not the same IQ test he was given 3 years ago. I was so upset, I didn't even catch that. I immediately said I wanted the same test done. We weren't comparing apples to apples. They wanted me to sign something that said I agreed with their results and we would change the IEP accordingly. Guess what? I refused to sign it. I was bawling almost the entire rest of the meeting (which was almost 2 hours). They kept talking like it was a done deal and at one point I remember saying very loudly that he wasn't dumb and I was not going to let them label him as MR. I said that he's already in the system, why does the label need to change. The director said that it more "accurately describes him" to people that would be reading his IEP for services. I said no it didn't. That any IQ test they gave him would not consider any of the amazing science things he does, or what he builds after he takes something apart. He has working memory problems, probably dyslexia (which they don't even test for) and trouble organizing multiple things in his head. All things needed for reading, he struggles with. I do not believe for one second that this is a child who will never learn more than he knows now. He has auditory processing issues that need to be dealt with that they aren't dealing with.
They started talking about programs in the district that would help him. They want him to be in a life skills class. A life skills class would teach how to tie your shoes, or write your name and address. This would not be an environment that would foster his curiosity, let him explore and create, let him discover things. Here at home I push him. I make him write things that he doesn't want to write. These people probably think I am wasting my time teaching him any math beyond simple addition and subtraction, or reading about history or our science. How could I ever consider putting him in a class like this? It would destroy what learning ability he does have because they would have no expectations. Why would they care if he knew about our solar system, or Lewis and Clark or how to skip count by 9's?
I've researched online about parent advocates for IEP meetings. I still haven't figured out how to get one. But I know that no parent should ever feel what I did when I was blindsided in this meeting. I'm still waiting to hear from the special ed department about further testing. I said that I wanted several more tests done before I'd sign anything (and I still don't have to agree with their label). Everything happens at a snail's pace in the world of education. It's very frustrating that this hasn't been figured out and he's in 5th grade. I keep imagining him in 6 or 7 years and feel like time is running out (or it's already too late) to help him. Books I've been reading say 10 or 11 is pretty much the age that a child's brain connections are all made. We had time up until this point to grow those areas and make new connections, but they are wasting time.
By the time he gets the help he needs, he'll be 18. He'll be 18 and won't know how to read.
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