Soooo......................
I've requested, in writing, the remainder of the school records that I asked for. Anyone able to guess what they told me?
In short, the answer was, "No." What? No one is shocked?
Neither was I, but the more I think about it, the more perturbed I get. (Perturbed has a stronger connotation in this case than its intended definition.) I was told I cannot have my son's special education records or IEP notes or testing evals. Somehow, they do not have the letter stating my son has Asperger's, even though they have made copies twice. I do have copies of the letter and the testings, but that is not the point.
Everyone with whom I have consulted has, in some fashion, told me to get a lawyer. Lawyers in other states have told me to get a lawyer. Parents insist on it. Fine. No problem. I would be delighted to! One teensy, tiny, little problem with that advice: There are no special education lawyers around here!
So, we are still pursuing this avenue. I have twenty tabs open on three computers of sites dedicated to IEPs and mediation, and special ed law, and state and federal regulations. I've spent hours researching. I've typed bazillions of emails. (DO NOT tell me that bazillions is not a word!) My brain hurts.
I wish I could go back to the brief moment in time when I was studying for the LSAT. I would become a special ed lawyer. I'd be swamped with cases, I am sure. Trouble is, I would make a lousy lawyer and until last month, I didn't even think about special ed beyond my son's own IEP. Oops! A costly learning moment there. Now I think about my son's struggles, possible retaliation on his sisters (unlikely, I know, but my mind goes there), and the struggles of the future little gifted Aspies that come to this school wreaking havoc on the school with their "bad behavior." I still think there are good schools in the district, but the one rep at our IEP meeting did not do them any favors in my book.
So, we are back to square one: no lawyers inside of a three hour drive, the district and school are still circling our wagon and farting in our general direction. And, to top it all off...there is no chocolate in my house right now!
Tuesday, February 26, 2013
Friday, February 22, 2013
25 Things I've Learned About Asperger's and the IEP
What my adventures with our IEP have taught me:
1. The school is NOT always looking out for your child's best interests. That is YOUR job and responsibility.
2. You can NEVER be OVER-prepared for an IEP meeting.
3. You can NEVER do TOO MUCH research. Every little piece of info, no matter how small, can be useful.
4. According to FEDERAL guidelines, the IEP MUST BE MEASURABLE.
5. What DOESN'T go into the IEP is at least as important as what gets put into it. Know what you can request for your child.
6. Asking for ALL records, both cumulative and confidential, does not necessarily get you ALL of your child's records even though you are entitled to them.
7. The word AUTISM does not, in fact, tell all educators how to handle your INDIVIDUAL child.
8. INDIVIDUALIZED Educational Programs are not 'one size fits all.' They might actually have to hit the 'customize' button.
9. RECORD every meeting. At least, take thorough notes.
10. ALWAYS ask WHY? or WHY NOT?
11. Take people with you: advocates, friends, state department of education representatives: build an army. The school will.
12. SOCIAL problems are not the same as BEHAVIORAL problems and CAN be addressed in the IEP.
13. NEVER sign the IEP in the meeting, no matter how much they cajole you to do so. You have 14 calendar days to reread it and think about it before you sign or don't sign.
14. Keep your Procedural Safeguards Book handy and maybe even read it once in a while. It will all seem unnecessary until it isn't.
15. UTILIZE any and all RESOURCES available to you. As soon as you get an IEP for your child, go to an advocate and have them explain every page to you. You will appreciate it.
16. Be nice to your IEP team, even if it makes you twitch.
17. Get EVERYTHING in writing! No exceptions. Email is a great way to maintain correspondence.
18. CREATE a binder that has ALL records pertaining to your child's education and IEP. Become a hoarder with this information. We are on our 4th IEP in a year and I have every one, all of the testing, letter from his psychologist, sample IEP's, notes--I really mean everything.
19. DO NOT let the school talk you out of anything you need for your child, or into anything you don't.
20. Just because the district representative says you have to do everything their way doesn't mean they do not have to still comply with federal requirements.
21. You can call as many IEP meetings as you like, as many times as you like.
22. DON"T SETTLE for less. As long as you have reasonable requests, you have every right to them.
23. YOU are your child's BEST ADVOCATE! The principal may cower under a desk when you walk into the school, but it isn't your job to be their best friend. Your job is to make sure your child is in a safe environment and receiving an appropriate education.
24. If your child has a dual diagnosis, you are likely to have double the battle to meet their needs.
25. No matter how difficult the journey, the cause is worth it.
Note: These are my personal experiences with one school and do not reflect the experiences of everyone in every school. That being said, I also know this is not an isolated incident, either.
1. The school is NOT always looking out for your child's best interests. That is YOUR job and responsibility.
2. You can NEVER be OVER-prepared for an IEP meeting.
3. You can NEVER do TOO MUCH research. Every little piece of info, no matter how small, can be useful.
4. According to FEDERAL guidelines, the IEP MUST BE MEASURABLE.
5. What DOESN'T go into the IEP is at least as important as what gets put into it. Know what you can request for your child.
6. Asking for ALL records, both cumulative and confidential, does not necessarily get you ALL of your child's records even though you are entitled to them.
7. The word AUTISM does not, in fact, tell all educators how to handle your INDIVIDUAL child.
8. INDIVIDUALIZED Educational Programs are not 'one size fits all.' They might actually have to hit the 'customize' button.
9. RECORD every meeting. At least, take thorough notes.
10. ALWAYS ask WHY? or WHY NOT?
11. Take people with you: advocates, friends, state department of education representatives: build an army. The school will.
12. SOCIAL problems are not the same as BEHAVIORAL problems and CAN be addressed in the IEP.
13. NEVER sign the IEP in the meeting, no matter how much they cajole you to do so. You have 14 calendar days to reread it and think about it before you sign or don't sign.
14. Keep your Procedural Safeguards Book handy and maybe even read it once in a while. It will all seem unnecessary until it isn't.
15. UTILIZE any and all RESOURCES available to you. As soon as you get an IEP for your child, go to an advocate and have them explain every page to you. You will appreciate it.
16. Be nice to your IEP team, even if it makes you twitch.
17. Get EVERYTHING in writing! No exceptions. Email is a great way to maintain correspondence.
18. CREATE a binder that has ALL records pertaining to your child's education and IEP. Become a hoarder with this information. We are on our 4th IEP in a year and I have every one, all of the testing, letter from his psychologist, sample IEP's, notes--I really mean everything.
19. DO NOT let the school talk you out of anything you need for your child, or into anything you don't.
20. Just because the district representative says you have to do everything their way doesn't mean they do not have to still comply with federal requirements.
21. You can call as many IEP meetings as you like, as many times as you like.
22. DON"T SETTLE for less. As long as you have reasonable requests, you have every right to them.
23. YOU are your child's BEST ADVOCATE! The principal may cower under a desk when you walk into the school, but it isn't your job to be their best friend. Your job is to make sure your child is in a safe environment and receiving an appropriate education.
24. If your child has a dual diagnosis, you are likely to have double the battle to meet their needs.
25. No matter how difficult the journey, the cause is worth it.
Note: These are my personal experiences with one school and do not reflect the experiences of everyone in every school. That being said, I also know this is not an isolated incident, either.
Thursday, February 21, 2013
IEP Saga Continued
Well, today I turned in the request for Mediation, which is apparently the next step when the IEP meeting fails, as well as paperwork for a Functional Behavior Analysis. In addition, I picked up my son's records that I had requested. At 15 cents per page, I only paid $4.80 and that meant some things had to be missing.
Going through the paperwork, I found all of his academic records. I found his suspension information. What I didn't find-besides my correct maiden name-was anything having to do with his special education needs: no principal's behavior plan which has been implemented, no refute of the suspension that we requested go into the files, no IEP, no testing evaluations which were conducted to determine IEP eligibility, no letter from my son's psychiatrist stating that he has autism. I do, however, have extra copies of his social security card and birth certificate, so it wasn't a total loss.
All correspondences with the principal go unanswered. My son was moved out of his regular classroom to get him away from a classmate, yet they have PE together. He has been left to fend for himself while educators turn a blind eye. To give her credit, my son's new classroom teacher has been super supportive and when I told her of my concerns, she arranged for him to take PE with another class. Still not an ideal situation, but we only have a few months left in this school and I am picking my battles. God knows, I have enough to pick from.
And you know what really makes me twitch? I am not confrontational. I am not anti-school. But situations, especially when our kids are involved turn us into warriors. So here I am: Xena, Warrior Mom. I'm sure the school considers me a different kind of mother, but I've quit worrying about their opinion of me. I'd rather be on their good side, but being nice didn't work. I haven't even gone into these meetings confrontational, believe it or not.
I can't figure out if our school thinks we are stupid or if they truly believe in the way they are doing things. I cannot see any way they are in compliance with IDEA. My mother always said I could argue both sides of any situation, but I've got nothing here. I cannot see any reason not to comply with federal guidelines for an IEP or to punish a child for acting autistically without any form of correction before extreme punishment. While we have a lot of people, including educators on local, state, and federal levels, indignant on our behalf; most have said we won't win a fight with the school system. I'm not worried, and I'm not quitting. No one who ever accomplished change on a massive scale had it easy. I'm not that ambitious; I'm only trying to change one school system, not the world...yet.
Going through the paperwork, I found all of his academic records. I found his suspension information. What I didn't find-besides my correct maiden name-was anything having to do with his special education needs: no principal's behavior plan which has been implemented, no refute of the suspension that we requested go into the files, no IEP, no testing evaluations which were conducted to determine IEP eligibility, no letter from my son's psychiatrist stating that he has autism. I do, however, have extra copies of his social security card and birth certificate, so it wasn't a total loss.
All correspondences with the principal go unanswered. My son was moved out of his regular classroom to get him away from a classmate, yet they have PE together. He has been left to fend for himself while educators turn a blind eye. To give her credit, my son's new classroom teacher has been super supportive and when I told her of my concerns, she arranged for him to take PE with another class. Still not an ideal situation, but we only have a few months left in this school and I am picking my battles. God knows, I have enough to pick from.
And you know what really makes me twitch? I am not confrontational. I am not anti-school. But situations, especially when our kids are involved turn us into warriors. So here I am: Xena, Warrior Mom. I'm sure the school considers me a different kind of mother, but I've quit worrying about their opinion of me. I'd rather be on their good side, but being nice didn't work. I haven't even gone into these meetings confrontational, believe it or not.
I can't figure out if our school thinks we are stupid or if they truly believe in the way they are doing things. I cannot see any way they are in compliance with IDEA. My mother always said I could argue both sides of any situation, but I've got nothing here. I cannot see any reason not to comply with federal guidelines for an IEP or to punish a child for acting autistically without any form of correction before extreme punishment. While we have a lot of people, including educators on local, state, and federal levels, indignant on our behalf; most have said we won't win a fight with the school system. I'm not worried, and I'm not quitting. No one who ever accomplished change on a massive scale had it easy. I'm not that ambitious; I'm only trying to change one school system, not the world...yet.
Thursday, February 14, 2013
Fair, Honest, And Right
I hate that our troubles with the school have deteriorated so far as they have. To be honest, it isn't fair and it's not right.
To be honest, I used to think my son had behavior problems, too. My husband said I didn't discipline him enough, doctors said I didn't understand boys, and psychologists batted around diagnoses from ADHD to Bipolar Disorder. We still cannot find a therapist he meshes with and who treats what he needs them to. I've made apologies for his behavior and felt guilty when he'd have a meltdown in public that caused the condescending stares of passers-by. I've apologized and felt guilty, and tried to compensate for every time I've had to take care of my son instead of giving the girls equal or even adequate attention. My girls have had to be very understanding and helpful, despite being embarrassed when their friends witness their brother's fits or upset when Mommy and Daddy have to take care of their brother once again. When my son was little, before we knew, we would go out to dinner, only to have to walk out when he screamed throughout the restaurant. It hurts to watch him cry because his sisters have friends and he doesn't and that he (or we) cannot always participate in things that would be fun or good for him because they may also be too loud or busy for him to function.
To be fair, we have had great teachers (mostly)--a phenomenal school system--so far as you don't buck the system. Well, I've never been one to follow the crowd, but that does not mean I've gone looking for trouble either. My daughters have fabulous teachers who challenge them academically. The girls talk a lot, but talking is the only thing that has ever got them in trouble. My son as had some exceptional teachers, including his current one, so fortunately, he will leave elementary school with better memories than I send him off with. I am hoping middle school will be better for him. I tell him it will be without knowing if I am lying or not. I have to believe it, because I cannot imagine it getting worse.
To be right, however, is not necessarily to be fair or honest. And being right, means I take care of all of my kids and put them first, as does any mother. It means that I no longer care about the dirty looks or comments behind our backs. It means no apologies. My son has a neurological condition. Would you make apologies if your child had diabetes or a learning disability or glasses? The parent's of children at school with peanut allergies do not make excuses, and in fact entire classrooms monitor what they bring into classrooms to help them. A meltdown may not kill my son, but ignorance and apathy can. He has already been to the hospital once for trying to kill himself (he was 9) because his teacher was always angry with him and kids teased him constantly.
To be right means that if the school refuses to understand autism, then I must fight until they do--not just for my son, but for those that are coming after him. That may sound obnoxious as you read it, but it is the truth. I truly hope that the school is ignorant rather than vengeful. Education in as much about learning as it is about teaching. My goal is not vengeance despite my anger at the entire situation. I want the school and district personnel to understand how to help all of their students, instead of first assuming the worst of them.
For anyone who knows me, I don't like to rock the boat and I second-guess everything. While this mess with the school sucks, I don't second guess fighting this battle or putting it out there. I know if we are going through this, there are others sailing similar seas. Fortunately, I have a great support system backing me up and making sure my son is okay. I know that while this is tough and may not end the way I want it to, it won't be because I haven't made every effort possible and used every resource possible and at the very least, brought awareness.
To be honest, I used to think my son had behavior problems, too. My husband said I didn't discipline him enough, doctors said I didn't understand boys, and psychologists batted around diagnoses from ADHD to Bipolar Disorder. We still cannot find a therapist he meshes with and who treats what he needs them to. I've made apologies for his behavior and felt guilty when he'd have a meltdown in public that caused the condescending stares of passers-by. I've apologized and felt guilty, and tried to compensate for every time I've had to take care of my son instead of giving the girls equal or even adequate attention. My girls have had to be very understanding and helpful, despite being embarrassed when their friends witness their brother's fits or upset when Mommy and Daddy have to take care of their brother once again. When my son was little, before we knew, we would go out to dinner, only to have to walk out when he screamed throughout the restaurant. It hurts to watch him cry because his sisters have friends and he doesn't and that he (or we) cannot always participate in things that would be fun or good for him because they may also be too loud or busy for him to function.
To be fair, we have had great teachers (mostly)--a phenomenal school system--so far as you don't buck the system. Well, I've never been one to follow the crowd, but that does not mean I've gone looking for trouble either. My daughters have fabulous teachers who challenge them academically. The girls talk a lot, but talking is the only thing that has ever got them in trouble. My son as had some exceptional teachers, including his current one, so fortunately, he will leave elementary school with better memories than I send him off with. I am hoping middle school will be better for him. I tell him it will be without knowing if I am lying or not. I have to believe it, because I cannot imagine it getting worse.
To be right, however, is not necessarily to be fair or honest. And being right, means I take care of all of my kids and put them first, as does any mother. It means that I no longer care about the dirty looks or comments behind our backs. It means no apologies. My son has a neurological condition. Would you make apologies if your child had diabetes or a learning disability or glasses? The parent's of children at school with peanut allergies do not make excuses, and in fact entire classrooms monitor what they bring into classrooms to help them. A meltdown may not kill my son, but ignorance and apathy can. He has already been to the hospital once for trying to kill himself (he was 9) because his teacher was always angry with him and kids teased him constantly.
To be right means that if the school refuses to understand autism, then I must fight until they do--not just for my son, but for those that are coming after him. That may sound obnoxious as you read it, but it is the truth. I truly hope that the school is ignorant rather than vengeful. Education in as much about learning as it is about teaching. My goal is not vengeance despite my anger at the entire situation. I want the school and district personnel to understand how to help all of their students, instead of first assuming the worst of them.
For anyone who knows me, I don't like to rock the boat and I second-guess everything. While this mess with the school sucks, I don't second guess fighting this battle or putting it out there. I know if we are going through this, there are others sailing similar seas. Fortunately, I have a great support system backing me up and making sure my son is okay. I know that while this is tough and may not end the way I want it to, it won't be because I haven't made every effort possible and used every resource possible and at the very least, brought awareness.
Wednesday, February 13, 2013
All Kids With Autism Are Alike
At least, this is what they told us at our last IEP meeting. By "they" I mean the principal, the school psychologist, and the special education rep from the district office they brought in to strong-arm us.
I really, really want to be indignant, because I did well at the last IEP meeting. I caught them off guard and was prepared, and they were agreeing with what we wanted. We weren't asking for anything crazy. We just wanted specific ways they were going to work on our son's social skills. We wanted measurable goals. We wanted Present Levels of Functional Performance to address his Autism. We wanted them to address his communication needs and Autism in some form on his IEP. Our IEP before this meeting was fifteen pages. The "fixed" IEP was fifteen pages. How much do you think they added?
Communication: Denied because school psychologist says my boy can communicate very well. Yes, he knows big words. He speaks like an adult. However, he does not understand nuances of nonverbal communication like sarcasm, body language, facial expressions, etc. Everyone in the IEP meeting explained to us that the IEP question about "Does the student have communication needs?" only referred to children requiring technological devices to assist them. I asked how we were going to address his communication deficit then. Their plan, was to put everything he needs into a Functional Behavior Plan, their ruby slippers for the IEP. The FBP was going to give them the tools to help our son succeed. When they said this, I kept waiting for the orchestral music to begin, but I guess they forgot to add the soundtrack to the little show they were putting on for us.
Specificity: Denied on the grounds that if something doesn't work, then they can't try anything new. Guess what? You can call as many IEP meetings as you want as often as you want. I received a pat on the head. Does this mean I get a cookie? Central Office Guy said that he had seen IEPs that were specific and, well, many areas didn't know how to write an IEP so we should just listen to him. (Smarmy car salesman.) The IEP, he said, using small words for our benefit, was only to set goals for Connor, a roadmap. The FBP, was how they would accomplish it. Since not everyone with an IEP has to have a FBP, it struck us that they are still making our son out to be a behavior problem, rather than Autistic. Hmmm....
Measurability: Apparently the goals are already measurable because when my son does something wrong, they can correct it. Corrective is not instructional and if they are only measuring infractions, then they are not measuring successes. Good, the last thing my kid needs is positive reinforcement; its not like he has any friends at school to give it to him.
Present Levels of Functional Performance: I wanted to laugh and cry at the same time when they denied this one. School Psychologist explained that Present Level of Performance is solely for Academic needs. Reinforcement from Central Office Guy/Smarmy Car Salesman and smirky grin of acknowledgment from the Principal. But, I countered, the advocate endorsed by the state and in my IDEA handbook said that this was required. Another Pat on the head. Well, said Smarmy Central Office Salesman, the advocates are "good people" and he had been through their training and it was lacking. We were, he said, better off doing as he said instead.
Still not giving up, I asked, if we cannot be specific and we cannot put in communication requirements, how then are we addressing his Autism in the IEP? Here's the good part! Smarmy Central Office Carsalesman looked at us like we might also need an IEP. Because Autsim is listed as his disability on page 1 of his IEP, that tells all current and future educators how they should help our son. Apparently, everyone in the district has had extensive Autism training, so they know how to teach to Autistic children. Good thing Autistic kids all have the same meltdown triggers, communication needs, peer relationships, intellectual gifts, etc. Besides, I asked, since the current Autism provisions had been in place for a year already, why had they not already been doing the things they had been trained to do? In fact, why did we have to call yet another meeting to address his Autism, if the label on the IEP was all they needed with which to help him succeed? A lot of non-answers and regurgitation of previous statements followed. I see.
We did not approve nor sign the IEP. None of our concerns were addressed with anything less than disdain, so the Crazy Sped Mom costume is being donned once more. An IEP should be in place to protect children, not to give them unattainable and unmeasurable goals or to have a place to hide a behavioral plan, an agenda by the principal which she refuses to review.
If all Autistic children were alike, then there would not be a need for an Individualized Education Program. Just saying.
I really, really want to be indignant, because I did well at the last IEP meeting. I caught them off guard and was prepared, and they were agreeing with what we wanted. We weren't asking for anything crazy. We just wanted specific ways they were going to work on our son's social skills. We wanted measurable goals. We wanted Present Levels of Functional Performance to address his Autism. We wanted them to address his communication needs and Autism in some form on his IEP. Our IEP before this meeting was fifteen pages. The "fixed" IEP was fifteen pages. How much do you think they added?
Communication: Denied because school psychologist says my boy can communicate very well. Yes, he knows big words. He speaks like an adult. However, he does not understand nuances of nonverbal communication like sarcasm, body language, facial expressions, etc. Everyone in the IEP meeting explained to us that the IEP question about "Does the student have communication needs?" only referred to children requiring technological devices to assist them. I asked how we were going to address his communication deficit then. Their plan, was to put everything he needs into a Functional Behavior Plan, their ruby slippers for the IEP. The FBP was going to give them the tools to help our son succeed. When they said this, I kept waiting for the orchestral music to begin, but I guess they forgot to add the soundtrack to the little show they were putting on for us.
Specificity: Denied on the grounds that if something doesn't work, then they can't try anything new. Guess what? You can call as many IEP meetings as you want as often as you want. I received a pat on the head. Does this mean I get a cookie? Central Office Guy said that he had seen IEPs that were specific and, well, many areas didn't know how to write an IEP so we should just listen to him. (Smarmy car salesman.) The IEP, he said, using small words for our benefit, was only to set goals for Connor, a roadmap. The FBP, was how they would accomplish it. Since not everyone with an IEP has to have a FBP, it struck us that they are still making our son out to be a behavior problem, rather than Autistic. Hmmm....
Measurability: Apparently the goals are already measurable because when my son does something wrong, they can correct it. Corrective is not instructional and if they are only measuring infractions, then they are not measuring successes. Good, the last thing my kid needs is positive reinforcement; its not like he has any friends at school to give it to him.
Present Levels of Functional Performance: I wanted to laugh and cry at the same time when they denied this one. School Psychologist explained that Present Level of Performance is solely for Academic needs. Reinforcement from Central Office Guy/Smarmy Car Salesman and smirky grin of acknowledgment from the Principal. But, I countered, the advocate endorsed by the state and in my IDEA handbook said that this was required. Another Pat on the head. Well, said Smarmy Central Office Salesman, the advocates are "good people" and he had been through their training and it was lacking. We were, he said, better off doing as he said instead.
Still not giving up, I asked, if we cannot be specific and we cannot put in communication requirements, how then are we addressing his Autism in the IEP? Here's the good part! Smarmy Central Office Carsalesman looked at us like we might also need an IEP. Because Autsim is listed as his disability on page 1 of his IEP, that tells all current and future educators how they should help our son. Apparently, everyone in the district has had extensive Autism training, so they know how to teach to Autistic children. Good thing Autistic kids all have the same meltdown triggers, communication needs, peer relationships, intellectual gifts, etc. Besides, I asked, since the current Autism provisions had been in place for a year already, why had they not already been doing the things they had been trained to do? In fact, why did we have to call yet another meeting to address his Autism, if the label on the IEP was all they needed with which to help him succeed? A lot of non-answers and regurgitation of previous statements followed. I see.
We did not approve nor sign the IEP. None of our concerns were addressed with anything less than disdain, so the Crazy Sped Mom costume is being donned once more. An IEP should be in place to protect children, not to give them unattainable and unmeasurable goals or to have a place to hide a behavioral plan, an agenda by the principal which she refuses to review.
If all Autistic children were alike, then there would not be a need for an Individualized Education Program. Just saying.
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