To disclose or not disclose??

iVillage Member
Registered: 01-02-2004
To disclose or not disclose??
15
Wed, 05-09-2007 - 8:07am

Hello, and Happy Mother's Day to all!!!

I know this is going to seem unusual to most of you, and the reason I know this is because of the responses we are getting from most of the professionals we have discussed this with except for the physchologist who has been in charge of our daughters treatment.

Here is the deal, our daughter 4.5 yrs. DX at 3 PDD-NOS (provisional). She has made rapid fire progress in speech and behavior. She not longer qualifies for early intervention speech, she is going to be discharged next month from psychological services. The only thing she still needs and qualifies for is OT. This is all great news and we are not surpised by it at all.

She has 1 more year of preschool and then she is off to kindergarten. We have been told by EI services that they are required to automatically release her file and DX to the district once she is eligible for kindergarten. We have been told by our physch. they cannot do this without our consent. We do not want them to release the info and are going to do everything we can to stop it, because if the DX is lifted why send her to school with someting that is no longer an accurate description. The people at our IU said her IEP it will only help her for the school and teacher to know about her history. I understand that to a point, but we know her history and we will help her. If the phych. lifts her dx and takes it back then we say okay, let her move forward and leave it in the past. Why not!!!

I don't know anyone in the same situation as ours. Other parents with kids on the spectrum are obviously not happy for us and seem to be of the opionion our daughter should be PDD-NOS for her whole life. I didn't think that was the goal for any of our kids. Is it?

I am very frustrated. Sorry this is so long!

Kelly

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Avatar for littleroses
iVillage Member
Registered: 03-28-2003
Wed, 05-09-2007 - 12:46pm

delete




Edited 2/19/2008 5:30 pm ET by littleroses
Avatar for betz67
iVillage Member
Registered: 03-26-2003
Wed, 05-09-2007 - 1:05pm

We have had issues with this w/ our older son. He is now on an IEP. He started out w/ a 504 plan due to significant allergy, eczema and asthma issues, and disgraphia. He was missing so much school for health related issues we needed to get him some protection so he could keep up. This worked for elementary school. When it came to middle school his teachers decided that he didn't just have these issues but he also was lazy and a liar/cheat-- they assumed if he had a 504 it must be for ADHD, most didn't bother to look at the plan or to get to know the student.

After 7th grade was a disaster, we had a private eval and got a ADD-NOS dx. The psychologist we had was pretty much worthless and didn't look into any other issues at all. The school psychologist did and eval and said lots of PDD traits and attention & organizational problems and agreed w/ the disgraphia dx, they put him on an IEP. Now the teachers see the other health impared IEP and assume he's ADHD and don't look any further. Even the resource teachers don't get all his issues, they see him as a quiet kid who doesn't do homework, they don't realize that he does all his homework, just can't find it and WON'T in a million years ask for help-- that just doesn't occur to him.

When I told the placement person at the middle school that Weston had autism, she immediately assumed that he'd be in the SDC, not fully mainstreamed. I think teachers and administrators look at labels and jump to conclusions, they don't read and understand the whole document, they've already pigeon holed the child.

Betsy

iVillage Member
Registered: 01-02-2004
Wed, 05-09-2007 - 1:39pm

Thank you Renee!!! You explained perfectly so I don't have to! That is exactly why we are thinking of not disclosing. Our daughter does not have any behavior issues that are different from the rest of the kids in all NT preschool class but she is constantly being looked at harder from teacher and therapists. It's crazy sometimes. It's like they are really looking deep for new issues to solve and they just are not there. This is preschool. What would elem. school be like???? So we are going to wiegh this one very carefully.

Thanks!

Kelly

iVillage Member
Registered: 10-03-2004
Fri, 05-11-2007 - 8:40am

Hi Kelly,

I have followed this all with interest. You are in charge of your child and whatever you decide, you can run into lots of problems with your school district, either way. But you cannot be forced into making decisions that you disagree with, even if it eventually means getting a lawyer. I hope this does not happen to you, and there are some here who have great stories about cooperation and appropriate accomodations that include dropping those accomodations when the child no longer needs them, in the interest of the growth of the child.

You are part of all decisions, and really, the final say.

Good luck with all this! And stay in touch, let us know how things are going.

Sara
ilovemalcolm

iVillage Member
Registered: 06-30-2003
Fri, 05-11-2007 - 2:00pm

I would not allow the DX to reach the school district. I am all in favor of patient privacy.

As for your daughter outgrowing PDD-NOS label, I think it's entirely possible and it's the goal I have for my own son. People recover from strokes and brain injuries with a lot of hard work. So, I believe our kids can improve. Some will grow up to be no different than their peers.

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