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I'm not sure who exactly is meant by "the county"

 

well -- I guess that is directed at me b/c i'm the one who said it -- it's just what I wrote -- asking for help and direction from the county director of 504 plans and the county director of special ed - b/c the original poster feels at an impasse with her individual school.

I have also suggested getting involved with the local SE-CAC - of which, the director of spec ed is usually a part and can give direction or other parents and/or school employees can give direction.

 

i'm not slamming spec ed in general -- except, yes, in our particular case and I usually write 'in our experience' -- which was disastrous -- that they were negligent and could have resulted in harm to many if I hadn't been in the school -- yes -- in the school - often -- at the request of the school admin. I was totally new to public ed and only now realize how ridiculous that was. our school told me the level V school he 'should' be attending -- with no eval, no IEP - their erroneous opinions.

 

this was our experience and I feel I have a right to share it - and yes, it is ripping our personal experience -- which I think deserves it. I am not ripping spec educators in general -- just urging others to be aware and advocate for themselves, and if they are feeling as if they are hitting a brick wall, to seek help elsewhere.

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I always feel so torn when I read posts that rip special education. I'm not sure who exactly is meant by "the county" but I can tell you there is local and federal pressure placed on districts if the

I see my comment about "the county" came off flip--- not my intention!   Depending on where you live the structure of the school system can look very different. Some are set up by counties and the

The connection is that if the typical pediatrician was as apt to diagnose and treat pandas as they are to say, push vaccines, my dd would have never skipped a beat! It is the medical community's fail

504 plans provide accommodations, which it sounds like joypop's teacher is unable or too rigid to implement (30 minutes to pack-up doesnt sound like she was doing anything but observing and nagging.) They can also provide medical nursing services. Home bound instruction has its own specific qualifiers not in play here.

 

It sounds like Chemar was satisfied because accommodations worked. Joybop's son is in between- what I mean by this is his executive functioning has (I'm guessing) recently fallen apart, and he cannot accomplish tasks. He is not yet two years below grade level. If he continues like this, eventually he will be and he will qualify for academic services. The psychoeducational testing is one on one; it's not done in a group setting obviously. So if he can perform one on one, he likely won't qualify. The psych may make note of how often she had to redirect him or how many breaks he needed. You can see where this is going, right? The psych then makes recommendations for frequent breaks, redirect student to task, ect. as part of the 504 service agreement. But if he comes out within the average range, which does not mean ON grade level because it's a range, he will have an OHI diagnosis and a 504 plan. Students are not given special education based on what's going to happen. They have to have a discrepancy....not just behaviors that are eventually going to lead to a discrepancy. This is why I chimed in with my specific experience because this was my dd: bright, got concepts and completed tasks with one on one help to stay on task, but couldn't complete work independently, follow group directions, sit still, ect. I remember when she was in the worst of it, she would get distracted within a math problem, forget about doing one problem after another! Like Joybop's ds, she was not an overt behavior problem like raging or panic attacks, but wasn't able to complete one task after another like her peers. And this does result in social difficulties too:(

 

Parents and teachers become very frustrated because a student actually has to BE years behind to qualify for special education services: an IEP with specially designed instruction and goals. 504 plans say yes there is a disability, but the student does not meet criteria for specially designed instruction. But everyone can see the writing on the wall.....if he doesn't get help NOW, he WILL be years behind! They will see if he qualifies for general education supports first, like the reading specialist or Title 1 Math support (don't need an IEP for those-they're general ed) Yep. I share your frustration which is why I did the work with my dd every night even after helping other people's children all day long. I'm just saying, I know the system inside out, know my child's rights, she does not attend school where I work, and I knew- either I help her nightly or hire someone to do that, or wait and watch her tank and then get her academic services through school.

 

Joybop, I'm not here to upset you. Your beginning post expressed frustration in not getting services WHILE the testing is occurring, the next 60 days, but that could just be the beginning of it. That's why I said I've seen families have more success with obtaining a TSS through Medicaid because it is behaviorally/medically related service.

 

Chemar, we have many, many parents that are very pleased with their children's education and services. Your son's circumstances and Joybop's are not the same though which is why comparing outcomes is problematic.

 

One piece of advice I would give parents of young children... It is MUCH easier to transition into school-age services with an IEP established through early intervention. Do not let those services expire or think I'll wait until K. I'm so upset, I have two cases now where the children received early intervention for 3 years and let the IEPs expire thinking they would just start hem up again in K. I was able to lobby for speech/Lang support, but no academic support because "we haven't given them enough time." Ugh! If your language is that of a 3yo after receiving 3 years of intervention, what do you think will happen academically? I know, more writing on the wall. Grrr.

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I see my comment about "the county" came off flip--- not my intention!

 

Depending on where you live the structure of the school system can look very different. Some are set up by counties and the special education administrators are housed there. Some states have many independent townships within a larger county. Each township has its own superintendent, spec ed administration ect., but the county has an overseeing unit that coordinates with the state level.

 

Everyone's situation and circumstances are obviously different. Some families do need and benefit from advocates. But with or without advocates, their are parameters to the special education system. If you have a child that is frequently fluctuating in executive functioning like our kids can do, and is an average to above average kid, you might be more likely to find yourself frustrated with the way the system operates. Every parent has to make their own decisions. I advocated when I thought it was necessary and when I thought it would yield meaningful change. The rest of my energy I put into working with my dd because I knew, bottom line, nobody cared about her education more than I did.

 

Ok, I'm not looking to fight. Raw nerves struck I'm sensing. Remember, I'm one of you. I've been there too. I've seen this from both sides and I'm just saying you will save yourself much wear and tear on your soul if you have a tempered barometer of when to fight, when to advocate and when pour that energy into your child. I respect all of you and your decisions. And I wish this was easier for each of us. Schools have an obligation to partner with us. So do our doctors; please don't let them off the hook!

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Jfaringa it was my understanding that the functional behavioral assessment is to try to determine what is motivating the behavior and then to find out the best possible positive behavioral plan. Example: collect the data from different places throughout the school, form hypothesis as to the reward the child is getting from the behavior and then test that hypothesis to see how a plan could be implemented. our dr said its not to diagnose the condition. So if the child is exhibiting what appears to be attention seeking behavior. They would note what happens when the teacher responds, then note what happens when it is ignored if its a safe option. If the child continues the consistent behavior when ignored it can be assumed that the child has other reasons for the behavior and not the immediate reward of attention. Given that scenario, I think its worth the eval. If nothing else perhaps we will learn more about his behavior in school. Do I understand this correctly?

 

Jag, I'm afraid you are not understanding our point. First I have to disagree with your idea that special Ed is reserved for those achieving two grade levels below. If that were true, shame in our country for waiting until it's too late!! I have an 11 year old with an iq over 140 and he was getting cs. He qualified as twice exceptional in our state and is on an IEP due to extreme executive function disability as his only issue. He is now getting all As in middle school as a result. What a horrible parent I would be if I let him lag two years below grade level.

 

I am also not looking for a one on one aide. That would be an awful thing to make the child dependent on another person. I am simply asking for a an aide to placed in the classroom to help the teacher. How can she be expect to teach my child or any other child if my child is on the floor 20 times in a 45 minute period.

 

I know many people who get services without a fight bc the people in charge of making these decisions have the right intent, not just preserving funds for those who are functioning two grade levels below. My child did not have any learning disabilities in the past but now has such severe executive function disability, psycho-motor agitation and hyperactivity that he is unable to do anything by himself. He is entitled to the same education as everyone else. If he needs to be put into smaller instruction classes or have an extra person on hand to help him stay with the class, then that is what our legal right is.

 

My son has diagnosis from at least 7 doctors stating clearly that he has conditions that qualify him under our states law as "other health impairment" if not severely emotionally disturbed. They have documentation well beyond what belongs in his student file, yet the school continually asks for more.

 

I refuse to give up in my child just to save the school a few fee bucks or hours of their precious time. I know their job is hard, and I do admire all of their that work with these kids. But I don't appreciate the gatekeeper mentality who would actually like to wait until my child is functioning at kindergarten level before offering him the help he is entitled to.

 

Jag, please understand in not angry with you. I'm just stating my feelings, and as many of you know, it's a hot issue when your child is being blown off in school. Granted, they have proceeded with the testing, we just wanted to see a proactive approach to support our child in the meantime. Instead, our principal was unprofessional, didn't even answer the question, and when she did she was totally uninformed. If she had answered our request with any kind if knowledge or understanding of the situation, I would not be so angry.

Edited by joybop
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Jag, I somehow missed your most recent response, not sure if we were typing at the sometime? Anyway, you do get where we are! I don't care wether they call it am IEP or 594 so long as they help him. His 504has items that are there in the event of a crisis in school, but so nothing to address his everyday needs to get through the day. Now we have lost almost half the school year. He has also missed tons if school which only compounds the situation. Many things were discussed at the 504 meeting but only those accommodation that were in a writing and suggested by our dr made the cut. I wasn't on my game enough to demand it got put in writing bc I wanted to give the teachers a chance to make it happened. It's not that is didn't trust them in the first place and I didn't want to be over demanding. It was hard enough just to get them to meet with me in the first place! Now that nothing has been done, I get emails on a daily basis from our teacher telling me what is going on in a class. She is making it quite clear that she can not handle this alone. I'm sure her hands are tied and she has obviously requested help but has been denied. Now she is giving me the information I need to go for the services myself.

 

In all honesty, this I the case of an unreasonable psychologist at the school. The teachers all want to best for him and to be able to get through their classes and give other students a peacefully environment to get their work done. I hate to see him flounder for another couple if months. The more they blow it off, the more help he is going to need to get him back on track. I just think that's a crummy way to support kids in need.

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I understand your frustration.

 

But let us all not forget this....education is being forced to deal with/fix the result of what our medical community is largely choosing to ignore. All my professional expertise, therapeutic strategies, commitment and determination on a daily basis to teach my daughter paled in comparison to the gains she exhibited with proper medical intervention. And I knew that from the very first steroid burst. I was doing what I could to keep her afloat while we got her healthy. And that took 3 years, traveling up and down the east coast, tens of thousands of dollars and a boatload of tenacity.

 

With ALL of that comes so much frustration and anger that can be yet another drain on us parents. Let us make sure that we keep all of this in perspective in terms of what the schools are capable of doing for our children. Doctors can ignore us or shuffle us along or refuse to treat, but the schools can't do that. I just wonder if sometimes, maybe not you Joybop, but sometimes parents direct anger and frustration in the school's direction because they are the only ones who can't turn us away and by law have to manage the results of medicine's failure to do THEIR job.

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Well I do see what you are saying, but we are all doing what we can medically for our kids. I don't really see the connection either. Our child does have diagnosis, and we are treating all of his symptoms and also undergoing huge immunological work ups to make certain we are doing all that we can medically. I'm very lucky to have a huge team of pandas specialists and am not being denied anything.

 

The schools are mandated by law to accommodate any disability in school. Doctors have far more restrictions on them as they are bound by malpractice and limitations in proven treatments, insurance companies, ect. Somehow we are fortunate enough to be well cared for by doctors despite these lacks in knowledge and accepted literature on PANDAS. The school however has failed to actively deal with specific behaviors and inabilities that are directly affecting his ability to function in class and is also infringing upon all other students rights who are being distracted and disturbed by my child's performance in school. So while I understand your reference and frustration, it doesn't get them off the hook for their responsibility to uphold IDEA or my child's civil rights. It's not like we don't have a long list of medical diagnosis. It's not just adhd or a straightforward behavior problem. Its a culmination if a list of medical diagnosis that are prohibiting my child from accessing his education and we have the right to take action.

 

I'm also not a hot head that goes in yelling and making accusations. I'm a very level headed and professional, yet firm parent. I am trying to support our teacher and am very careful not to accuse her of any shortfalls. It's not her fault she is left with this situation in addition to 20 other students to deal with without the help of another adult aside from one half hour block. It's not fair to anyone involved I'm only asking for an additional set of hands to be added to the classroom and I don't think its that unreasonable. I pay a hefty amount if tax dollars and feel no guilt in demanding that they accommodate my child

 

The reason in so horrified is that we live in an affluent community and have always been so proud of our schools We have fabulous, dedicated teachers and supportive parents. I really did expect more than a deaf ear and a cold shoulder. we have diagnosis of anxiety, OCD, mood disorder, adhd, psycho-motor agitation, and severe depression I addition to auto-immune encephalitis of an unknown cause causing mental status changes. (yes this is a legitimate medical diagnosis). That ought to cover our bases from a medical standpoint.

Edited by joybop
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It sounds like Chemar was satisfied because accommodations worked.

 

..................................................

 

Chemar, we have many, many parents that are very pleased with their children's education and services. Your son's circumstances and Joybop's are not the same though which is why comparing outcomes is problematic.

 

 

I do need to clarify something....my position is not related just to the *outcome* of the interventions for my son, nor to his specific circumstances.

It is related to the *willigness* of some school districts to do everything they can to help their students who have special needs....as opposed to those who seem to do everything they can to put obstacles in the way, and then get rather aggreessive and challenging toward the parent trying to just get help for their child.

 

The 2 school districts (who are overseen by their County schoolboard) were not only willing in our case, but they went out of their way to accommodate and provide services that were even beyond my expectations. As I had contact with the other parents, I know this was not soemthing unique for my child.

 

However, a close friend in an adjoining county had nothing but horrible problems, and her son had a recognized LD, nothing else.

The number of parents who have posted on the TS forum over the years about struggles to get anyone to even listen, nevermind test and accommodate have been telling! Even after TS was classified an educational disability, the struggles continue for some, whereas others get what is needed with not much effort.

Again, it seems to me it is the school administration and or district that makes all the difference.

As I said before, seems to me some are willing to do what is needed and some are not, or just do not know.

 

Yes, I am thankful my son had a good "outcome"....but that was a direct result of the schools being willing to pave the way to make it smoother to reach that outcome.

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You are hitting the nail on the head ! Our school "could" if they chose to have taken care of our situation already. Since they didn't now we have to open a while messy and expensive process that will cost not only money but lots of time from many people. If they had just taken the information they had to do what was right (and what our son was entitled to by law) we wouldnt be where we are now. True, we did ask for a band aide in the meantime, and I would have accepted a reasonable answer as to why that either wasn't possible or what they proposed to do otherwise. Instead I waited over 3 weeks to find out the principal was not even aware of the classroom situation or taking care of her end of business. Now it gets kicked up to a whole new level.

 

Also, just to clarify, an outcome is the direct result of action that was taken. I am a long way away from an outcome, but I am doing my best to avoid the possibility of a bad one. As far as process goes, my child is being tested. It will be interesting to see if he is even able to get through the testing at all. My guess is he will do much better in one on one as he does very little by himself or in a big group. I have no doubt that they will accommodate him in their testing as much as possible to paint him in the most capable light. That is why I need the functional behavioral assessment as our issues aren't just "educational" but they are sure to become that if we allow him to accomplish nothing but disruption for an ongoing period of time.

Edited by joybop
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The connection is that if the typical pediatrician was as apt to diagnose and treat pandas as they are to say, push vaccines, my dd would have never skipped a beat! It is the medical community's failure to get to the root cause of this generation's epidemic of neurologically symptomatic children that has schools across the country scrambling. Joybop listed 6 mental health diagnosis and one medical. Isn't it the medical diagnosis that is causing the preceding 6 mental health symptom clusters? Isn't that why you are here? Isn't that why most of us are here? If you take care of the underlying medical etiology, all the alphabet soup of symptoms subside and the child functions neurotypically.

 

That's what happened with my dd. I never blamed her school when she was sick and struggling and I didn't credit them with the miraculous gains she made when we got her well like when she went from the 10%ile in math in 3rd grade to the 93%ile in math in 6th. Neither were the school's fault nor glory; it was simply a reflection of her brain health. Teachers are not mental health providers; they are teachers. I don't even think mental health providers can help these kids when they are sick; there's too much static in their brains. They need medical intervention to make notable, meaningful, long-lasting gains. I was never denied any support for my child, but I didn't ask for my dd to have her own one on one teacher. I know you are not asking for that either, but that is what I provided my child every evening and that's what she would have needed if I didn't take on that burden. Otherwise, even with an aide she wouldn't have learned enough over all those years she was sick not to be academically devastated. Each kid is different. That might not be your child's circumstance.

 

I don't know what to say about the disparity among school districts, money probably. The district where I work is in the Philadelphia suburbs, among the wealthiest in the country. Almost 20% of students have either an IEP or 504 plan...that's a lot. So much so, like I mentioned previously, we have been flagged by the state for identifying too many students with needs in the past. And we are not the only ones. This is why the RTI initiative was launched nationally dictating that schools MUST demonstrate a longitudinal series of general education interventions with documented responses and NO response before special education can be considered. Perhaps if you live in an area where the incidence rates are lower and less than 10% of students need spec ed, then they roll out the red carpet for you, I don't know. My district has close to 30 children per kindergarten class because we spend so much money on special education. You are damned if you do and damned if you don't. And there are always consequences to whatever decision is made.

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Oh come now Jag! Regardless of the cause of child's symptoms, they still must be dealt with in the same manner as a child who has your average onset of these symptoms. It's not my pediatricians fault, or the medical community at larges fault, or the school systems fault. The doctors are taking care if the medical side, and the school has their responsibilities in the classroom. Let's not take things out of context now. I am not blaming the school for any of our troubles and I am not asking for anything unreasonable. I really don't understand why you are attacking me in this way.

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Ok so I work with children in a seperate facility with diagnosed mental health issues which includes many DSM IV diagnosis. PANDAS and PANS is not a recognized disability as identified in IDEA. When I look at the symptoms associated with PANDAS/PANS/PITAND I can see a child with severe symptoms meeting special education eligibility under several disabilities due to the wide range of sympromts that can exist in PANDAS/PANS/PITAND.

 

IDEA does not list PANDAS so walking into a school with a "PANDAS" diagnosis will not get special education services. I have spoken to several psychologists and none have heard, or considered for that matter, of infection or viral based mental illness.

 

If you ask for accomodations under a 504 plan the success of it is dependent on the fidelity of school staff in implementing it.

 

With respect to a Functional Behavioral Assessment. An FBA is used in conjunction wiht a behavuior support plan to determine the function of a behavior and teach replacement behaviors that serve the same function.

 

For example: a child with autism may become over stimulated. The student wants a break and asks the teacher for one. Initially the teacher says yes. When the number of breaks becomes "excessive" and the teacher starts saying no the studnet then uses other means to obtain a break: This example: Behavior-asks/requests a break Function-obtain a break Consequence of behavior-gets a break

 

Since the number of breaks are now excessive or interferring with instuction and education progress the teacher now denies the student breaks. The student now assaults another student or staff, throws something across the room or other highly inappropriate behavior. The teacher responds by "sending the child to the office or out of the room". The student now learns that to ge this break he must assault someone or other inappropriate behavior. The student starts exhibiting this behavior consistently so an FBA is performed. New Behavior: assaulting staff/throwing objects Function-Obtain a break Consequence-sent to office/out of room effectively obtaining a break (Keep in mind the old behavior no longer works in obtaining a break).

 

Once the hypothesis is conducted and tested. For this example the schools finds the funtion is for a break. The behavior support plan might include teachign the child to "request" a break and the teacher is expected to give a break. There may be counseling goals which teach destressing techniques to the child.

 

While this example is based on a teacher and classroom example many behaviors are learned in the home in similar manners.

 

Have yoru personal psych work with the school psych. If educational progress is not being made and or the plan is inappropriate you can always go to due process.

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Thanks jfaringa. That makes total sence. We have the pandas diagnosis tagged at the end, but all if his other diagnosis are listed first as those are the conditions that we need to cater to.

 

Thanks for the explanation. The psychiatrist will be at our meetings and she completely understands our son. I honestly feel this could be done with a 504 if they would get the right accommodations listed. Many great accommodations were mentioned at our last meeting but they never made the cut. I didn't complain bc I trusted that what was discussed would be implemented. It wasn't. So now we are hoping to get a better plan.

Thanks for the explanation Re FBA. Our psych suggested one. Well see how that goes.

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