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    Joined: Aug 2011
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    Thanks Polarbear - yes your stories help. I have had several people who know DD very well say that they think she is "unique" and likely to come up with a profile no one has ever seen before. I can't wrap my head around that possibility but it does keep coming up.

    We just got back from a meeting at the school to talk about adding OT to her IEP. Ironically that is how this whole journey started. I tried all last year to get OT in her terrible school and they would not even consider her eligible for testing. Despite all the private OT and PT she has had for the past 2 years she *easily* qualified for service. We were also able to clarify and tweak a few things with the IEP. Unfortunately because the neuropsych eval was invalid we couldn't address the underlying cause of all the LD's as I had hoped. The special ed teacher confirmed that it would be good to get her retested appropriately because it may mean adding some useful interventions. I asked about an LD parent support group in the area but no one knew of anything. I broke the cardinal rule and started tearing up at the end of the meeting when someone said "She'll be ok" and I just blurted out "No she won't - look at all this..." I still can't believe that all of this is really, truly happening.

    Also I had a long phone conversation with the local neuropsych. She really can't understand why no one provided her name earlier but no one at the school meeting knew much about her. She has asked for all the reports to date and will review them before scheduling more testing. She assured me that she would be very cognizant of DD showing any signs anxiety or stress during testing, especially since we already have 2 reports with such bizarre numbers. "It's unusual but you may really have that kind of split going on." The difference is that it seems she would look for an explanation of what the underlying cause might be rather than just presenting the numbers the way the other neuropsych did. She suggested ways I may be able to get the school district to pay for additional testing but I decided not to ask about that today. Maybe at the next meeting.

    I am hoping we can get to the bottom of all of this - frankly I think it is a combination of a true learning disability being exacerbated by stress. I am hoping - just hoping mind you - that if we can work on both at the same time we may get somewhere. But we have to work on both parts - not just one. And of course this assumes that there is not a seizure component. I can't even fathom the three together...

    I have my network of "spies" working on finding out if this woman is really good. If so then the cost of another set of tests will be only a little more than a trip to Arizona before the cost of testing there. I just want this all to be figured out and I want DD to relax. Just relax. I think only the parents on this board can understand wanting that for your 7 year old...

    {another big sigh}

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    Originally Posted by Pemberley
    I just want this all to be figured out and I want DD to relax. Just relax. I think only the parents on this board can understand wanting that for your 7 year old...

    {another big sigh}
    Keep sighing - it's a form of breathing.
    Hugs to you - sorry so many road blocks. How soon will Beljan allow you to fly out for a retest. I wouldn't go local after all you have been through - even if the local person is terrific and does everything right, how are you going to know you can trust it?

    But - what I mostly want to say is that relaxation is a skill that can be practiced no matter what the underlying situation is. Watch a few 'Dog Whisperer' episodes and practice that calm assertive energy then teach your DD how to do it. It takes a long time to see the results but it's a great life skill.

    Love and More Love,
    Grinity


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    One of the issues with psychologists/neuropsychologists is the (relatively) broad range of quality. It truly seems to be hit or miss. There are excellent ones and there are horrendous ones.

    There is really no good way of figuring out the quality of the professional except for word of mouth and speaking to someone with experience in the general area of testing.

    Last edited by JonLaw; 01/25/12 02:33 PM. Reason: I are not use good grammar.
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    [/quote]
    Keep sighing - it's a form of breathing.
    Hugs to you - sorry so many road blocks. How soon will Beljan allow you to fly out for a retest. I wouldn't go local after all you have been through - even if the local person is terrific and does everything right, how are you going to know you can trust it?



    Love and More Love,
    Grinity [/quote]

    I agree with this. Hoping you get some answers for your dd soon.

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    Latest update:

    MRI was normal - no tumors or brain damage from last year's concussion. Yeah!

    EEG showed rare epileptic type spike and waves patterns. (Rare referring to frequency not type.)This could mean that she has "a predisposition for partial seizures" or it could mean nothing at all. Since she didn't have any of her "staring" episodes when in the hospital we can't rule out absence seizures. Sometime in the next couple of months we will do an ambulatory EEG to give it another try to pick something up. We will also do a sleep study in case sleep apnea may be at the root of the headaches.

    Still no one with any info on the local neuropsych. We are sending Beljan some writing samples. We'll see what he says. I have 6 months before either would retest her so I don't have to decide now. Will keep you posted. As always I am happy to receive any input from those who have been down this road before me.

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    Pemberley, I think you're doing a great job following every lead and doing what you can for your DD.

    Is school willing to try incandescent lighting in her classroom to see if it helps with the migraines? Does the doc think this could matter?

    Hang in there,
    DeeDee

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    Originally Posted by DeeDee
    Pemberley, I think you're doing a great job following every lead and doing what you can for your DD.
    DeeDee
    Agree.
    Glad to hear no Brain Damage.
    I think sending writing samples is a good step for now.

    Smiles,
    Grinity


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    AAARRRGGGHHH Again! Just got a call from the school. We had discussed at our meeting that it has been recommended that dd try wearing a hat and yellow tinted glasses to see if the headaches are reduced. She came home yesterday feeling awful and this morning asked to wear her hat. (A pink sparkly one her grandma bought for just this purpose.) The school nurse said the principal - who was at the meeting last week - asked her to call because "the school has a no hat policy." They want a doctor's note before they will allow her to wear a hat in school.

    I let the school nurse know in no uncertain terms that I was NOT happy. This is the first thing this school has done that is not totally cooperative. She just kept repeating "the school has a no hat policy - we need a doctor's note." I said that I would not be calling Arizona and writing a check for a consultation fee just to get a letter about something so simple.

    I then left a message for the school social worker telling her that we will reject the IEP and ask for another meeting if this is really an issue. All 10 people at the last meeting can take another hour to discuss this ridiculous issue. I pointed out that dd has been dealing with so many difficulties, so much discomfort and so much pain and has been a good sport about all of it. I really can't believe that a simple accommodation that was discussed at our meeting is really becoming an issue...

    IF they really insist on this then I think we will insist that they replace the fluorescents in her classroom with incandescent. Personally I think a hat would be a MUCH simpler solution to try first. But hey what do I know...

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    FWIW, I've never had to pay a consulting fee to get a doctor to write their orders for the school. In fact, when I've called the doctor to report I was getting flack from the school, the note was faxed within 10 minutes. I hope you experience the same, but Whooeeee, the school nurse seems out of the loop.

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    Ugghh. Just came from speaking with the school social worker. She is not very bright but is unfortunately the one in charge of dd's "team". She acknowledged that we brought up the hat issue at the meeting last week and no one ever said anything about requiring documentation. We ran into the special ed teacher - who is really really good - and she assured us it was no big deal and would be easily handled. Can she be in charge of dd's team? Nooo it had to be assigned to sw. So I just finished sending off a note rejecting the IEP. All of our solid cooperation is out the window over something so ridiculous. So now I guess we have another 10 person meeting but now I bring an advocate because things will become confrontational. Oh and sw said she can't do anything about the hat recommendation "because the neuropsych eval turned out not to be valid"! What the heck? I informed her that up until now we have been writing checks and doing whatever needed to be done ourselves but if the school chooses to get confrontational over such a ridiculous issue - which affects no one else and costs them nothing - that we will move in the direction of demanding that the school district start paying for these tests and maybe change out the lights in her classroom. Instead of a free, simple accommodation we will instead be looking at accommodations that could cost thousands of dollars.

    As I said, I don't think she's very bright...

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