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It's been a really tough decision but I think I've finally made it. After months of trying to get our sons school to do anything at all to help our child, I've finally decided that at this point, its a loosing battle. Our dr wanted an appointment ASAP to help make a plan. The meeting was repeatedly put off until finally, they cancelled it altogether asking her just to attent the IEP eligibility meeting. (Which by the way was requested in Nocember and there is still no meeting in sight) they haven't even finished their testing on him.

 

I met with a school in our town that has only 12 3rd graders and 80 students overall. DS spent the day there today and he begged to be able to stay. He said the kids were actually nice to him and the teachers paid attention to him. The teacher loved him and said that he would fit right in. They wholeheartedly invited him to enroll and are willing to help him in anyway. They didn't blink an eyelash when I explained pandas, only offered support. I have many friends who have sent kids there past sand present and have faith that its going to be the best decision we e ever made.

 

Here's my question to you sped gurus. The testing for IEP has been ongoing. I'm thinking of just going for it and withdrawing him from the school before the IEP date is even set. After all, I had another child in that school on an IEP and it was never followed. So I have very little faith that anything would come of it. Here's my question...am I still entitled to those results even if I withdraw my child? I read online that even private schooled kids can request an eval by the district. It's not that I care so much about the results but they would be interesting to see , and I might as well get the last of my tax dollars out of the deal.

 

If it were you, how would you proceed? Call off the dogs before the meeting if you knew you were already gone? Or would you sit and wait and see what comes? Do you send a certified letter? Anyone know how to deal?

Edited by joybop
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I think you are wasting your time with those results. Unless you can use them toward something specific, like making your district pay for education they cannot provide, they will tell you nothing you don’t know already. We did Leap testing at MGH and what they told us just confirms what our child is during an exacerbation since he was in a flare when he was tested. But they did not tell us anything about our child in general, why he changes so much, what to do to make those changes easier on him, how he learns, how to parent him, nothing. It’s like they took a span-shot of his forehead and said, this is a portrait of your child. Indeed, but where is the rest?

If you do go through and have a different experience with this testing, please post.

Edited by pr40
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I realize what you are saying, but I think it might be valuable to see where he is educationally and how testing results might have changed since the onset a year ago when We had him privately tested. With that said, his IQ was in the gifted range and there were no real deficits. Still, the testing was done so I might as well have the results but I don't know what my rights are.

Edited by joybop
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One good reason that makes sense, is that if you hang around long enough for the results and you get the iep and the school is not meeting your/needs, I believe you can request a different school, and yes, the district has to pay for it. My only concern is this can all take awhile, and your ds may have to be stuck in a school for too long that is not working for him.

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I would call an advocate and find out what letter you can send that will make sure you get your results. I have seen kids with dyslexia get private school covered by the parents had to sue the state (NY) first.

 

I would switch him now, if you can afford it and it seems like a good fit move on.

 

T.anna

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That's a great idea t Anna. I will have our psychiatrist request them. They respect here and have answered every call and email. However. My therapist called 6 times and never got a response. That's what kind if games they play.

 

You guys are totally getting it! My goal is to preserve what I can of his self esteem and get him into a smaller, more supportive and nurturing place. I just have to make sure he won't be overwhelmed academically and that they are ok with him missing 3 or more days a month for doctors appointments. Public school never made him make up missed assignments with do toes notes. If he had double or triple homework some days I'm not sure we would survive! I understand missed concepts and info would have to be gone over, but I want to make sure we aren't biting off more than he can chew.

 

They do accommodate a few students there that are on the spectrum. That's a great sign!!

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Results of the MFE should go into the child's CUM and copies can be requested by parent or new school.

My son is doing neuro-psych testing privately and our insurance is paying for it. It will be all day testing and more thorough than the school's testing. I am looking for things like processing speed and possible executive function disorder. Hoping doc will pick up behaviors also and document. Need an insight into his brain and how it works and what it is capable of to plan for the future.

Good luck with your decision.

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Several years ago an acquaintance had difficulties with out school on help for her son. She went to an attorney who knew the terminology to use in meetings and had great success with it. At first the school district did not want to help at all. Not much funding in this arena so you have to be aggressive in getting anything (in our state anyway).

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I totally hear you on that. On one hand, if I stay and fight, I get shut out in the come even more and my chikd will be at a stand still while all of the fighting ensues. I will be stressed and frustrated and have to hire a lawyer. It could take a very long time and all the while my child will continue to not have the right kind of education. In addition to all of that, I would have to wait for the IEP meeting (which should occurs by the first week in Feb) and neck hate an IEP which they have 8 or so weeks to implement. Then I have to let that plan fail and only then do I get to plea my case that the school has failed me.

 

Because I was able to find what I think is the right school at a price I can afford, I'm highly considering cutting my losses and putting that money directly into his education. I hope that in doing so I can make a positive decision for the whole family. Its hard enough having two kids with pandas, 2 teenagers adolescent boys on too of them, a job, busy family life. I know it sounds like an easy way out but I just don't want to fight. If I truly felt my child would get awarded a private school placement I would muster the strength. But the bottom line is, I have a kid with a high IQ, and no real learning disabilities, all pandas related issues.

 

This is one of the hardest decisions I've ever had to make. I'm hoping his psychiatrist has some insight as she just observed him in school. If she raves to me about how well it went I may have to reconsider and stick around for the meeting. But if she agrees with me that this isn't the right place I'm going to withdraw him this coming Friday. I'm so nervous.

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Hi Joybob~

Sorry I didn't see your PM or this thread until now. I think since you already had a child where they didn't follow the IEP you already have your answer. I don't think waiting for the evaluation results would change the picture if you waited, but, I don't think that's your answer. The evals done for my dd at school were useless. Her private neuropsych eval gave me incredibly detailed data on so many indices that would have helped here in any academic setting. Also, it made the school district sit up and take notice because it exposed her cognitive deficits. Speech/Language, OT and Psycho-ed won't do that. If you can afford a private school that you think will accommodate your child's needs, I would do that. My PANDA needed a para. Her neuropsych eval explained why. Dd would not have gotten this level of attention at a private school. I actually think she would fall through the cracks there because she needs re-directing, organizing, scribing, de-escalating, etc. even if she only needs a bit of each every day, there is no way any teacher, public or private, would have the time to do this well for her. I wonder if the NIH evals were of any use for you here? In any case, I would def. find out when the evals will be completed (possibly wait for that just to get your info.) before making any decision. Curious as to why the school has 8 weeks to implement an IEP? that's a long time...

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Thanks Cleo, I really respect your input as you have been through all of this.

 

News flash- I just got an email from the dr with some tidbits from the observation. She mentioned that he seemed to get along with peers, which is a big struggle for him. But bottom line- when doing work he needs to be redirected constantly. He is able to focus for seconds to minutes and needs constant attention. The teacher actually told her that he would do best in a classroom where there was always an aide and the dr agreed. Of course, this is different than a one in one aide, but it would be something. It also worries me as we would not have an aide at all in a private setting although its a much smaller and more controlled class there. The good part of the observation is that he is very bright and seemed to be aware of what was going on in class, even when he appeared to be messing around. Overall it sounds somewhat encouraging. I'll be meeting with her Wed for more details and guidance.

 

As far as testing goes, my son is very bright, has a high IQ. He will have to qualify for IEP based on OHI for all his pandas symptoms. The adhd and anxiety are major factors. I may have a neuropsych test done privately but if there are no red flags on the schools testing I won't bother. My insurance will pay for one and I may utilize that option now that we have already met our deductible.

 

The NIH did do some neuro psych testing but they don't release the results of them to the patients so that part won't be helpful.

 

If my child is to stay here, the communication simply must change.

Does anyone have any verbiage in their plan that dictates how often and how much is communicated? I feel very isolated from my child's classroom experience.

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