To disclose or not disclose??

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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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iVillage Member
Registered: 04-28-2007
Wed, 05-09-2007 - 9:00am

Well pdd-nos encompass so many disorders it is possible your daughter had autistic like behaviors and the right therapies have targeted her so well hence the improvement. As a parent you have every right to not have her previous history disclosed, and I thing EI are being a little bullyish about this.

However, I know my ds didn't qualify for anything from EI (at age 3) as he was so verbal and seemed cognitively advanced. We did a lot of therapies privately.

Now though ds is 7 and needs speech to help with pragmatic language and gets OT consult as well as needing much more than we actually thought he would. I do hope for you that your dd was simply misdx or that she has worked her way out of a dx, but I would say be aware that as she gets older you may see newer issues emerge, especially as school gets more challenging. As for her file moving on with her. I do think it would be beneficial for her future teachers. You don't ant to have to deal with what we did in kindy when ds was labelled as the odd kid and was picked on mercilessly by kids and teachers alike. If he'd had a dx by then I believe he'd have received much more help and understanding.

HTH, and truly hope (as a spectrum Mom) that your daughter's end of the spectrum is diminishing and is even undetectable one day....we all wish that for our kids:)

Dee

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iVillage Member
Registered: 06-25-2003
Wed, 05-09-2007 - 9:51am

It's a totally personal choice, you should follow your gut and do what you think is right for your child and your situation.


However, I believe in disclosure.

-Paula

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iVillage Member
Registered: 06-09-2005
Wed, 05-09-2007 - 10:45am

As a parent, you obviously know your dd better than anybody, and have her best interests at heart.

I have to agree with Dee and Paula about their thoughts on disclosure though. My ds got an "mild" AS dx at 4. At that time, I think I thought that he would "outgrow" his dx some day. He's 8 now and in 1st grade, and I don't think he will really ever outgrow it. He has hasn't regressed, in fact each year he progresses in every area, but so do nt kids. The bar constantly gets higher. He had services in his IEP in kindy that he no longer requires, so they were dropped, but just having the IEP in place is a kind of safety net. In my mind, it gives the SD the info they need to properly deal with any issues that may come up with him. The teacher can understand why he may react in a certain situation, and deal with it appropriately for someone with his dx, rather than just giving him their own label, such as brat, bad kid, spoiled, etc.

Since you mention the IU, I guess you're in PA. I am too. In my School district, the IU is responsible for preschool special ed services (age 3 - 5, or until they enter kindy), and the SD picks up from there. If yours is similar, than for a fall 08 kindy registration, you'll probably have a transition meeting in early '08. So you have some time to think about this. Also, if you're transitioning from IU to SD, the SD will want to reevaluate your dd anyway(they did for my ds). You will have to consent to that eval, and there is also a consent form for the release of info from IU and preschool to SD. That consent is probably what the psych is talking about. I honestly don't know what the IU/SD does if you refuse sign those forms.

My other random thoughts are that Spec Ed services cost money, and most SDs are cheap and want to get out of as many services as possible. JMHO. So most people don't have to worry about getting services that your child doesn't need, kwim?

Good luck with whatever you decide.

Kate

iVillage Member
Registered: 03-26-2003
Wed, 05-09-2007 - 10:59am

If her dx is taken away and she is taken off an IEP I see no reason why they would send that on. I doubt it will be transfered over. Usually it is still at the district office.

Let me tell you my experience. When my dd was going from K to 1st grade (in the same school) she was taken off an IEP briefly. I had specifically ASKED that they inform the next teacher of Caits history and what works for her. The teacher was never informed and 1-2 months into the school year when she asked me for a conference due to concerns was the first time I realized that she had NO CLUE Cait had ever been on an IEP. What is worse is Cait was having trouble and there was no communication at all between the teacher and the resource teacher ever.

It gets better. My youngest son was on an IEP in preschool and we asked to keep him on an IEP at the beginning of K just to make sure the transition went well. He was doing well at the time and it was possible he could have been graduated but we wanted it for monitoring sake (due to our other kids history) His kindie teacher was never told he was ON an IEP and neither was the school RSP who was new that year. It wasn't until I mentioned it that she was able to track it down.

Same thing with my middle child. The preschool was SUPPOSED to call and help Mike transition into kindie, etc. All this in writing, and the lady dropped the ball. I ended up doing everything we discussed for a smooth transition.

So with the trouble I have had with my kids when I wanted the information passed on, I would bet that if you didn't want info passed on it likely won't.

Most likely if she is taken off an IEP then you will just have to go through the regular kindie process of enrollment. There would be no reason for the teacher or anyone to go looking for an IEP and if it wasn't in place there is no reason to send it on.

Plus there are pretty huge laws regarding privacy and exchange of info. I know I have to sign if I want to share info with myself. I am betting the psych is right on that.

Renee

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Registered: 03-28-2003
Wed, 05-09-2007 - 11:24am

delete





Edited 2/19/2008 5:29 pm ET by littleroses
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Registered: 02-20-2001
Wed, 05-09-2007 - 12:00pm
We are transition from the IU to the school distict now. I know I had to sign a form giving htem permissin to give the SD Bobby's records.


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Registered: 06-09-2005
Wed, 05-09-2007 - 12:08pm
Yes, that's the form I was talking about..
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Registered: 03-26-2003
Wed, 05-09-2007 - 12:17pm

AH, I should have read better.

I didn't realize you were asking whether or not to disclose, but rather if you don't want it disclosed does it have to be.

I can understand both sides of this. It is hard. If you are truly thinking that she has made sufficient progress so that she no longer qualifies as special needs and would like to give her the opportunity to go on in school on her own, then I agree, why not?

The only reason in this case to disclose or to keep an IEP is in case you think she may need the supports, sometimes it is hard to get them back and can take a while. It is like starting from scratch.

Renee

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Registered: 03-26-2003
Wed, 05-09-2007 - 12:28pm

LR,

I think I can shed some light on why not to disclose.

In a class I am taking recently the instructor read from a book by a young man. This young man had had numerous testing throughout elementary school because of this information continuously passed on. He had more testing than school I think.

Each year his info was passed on from grade to grade and each year the teachers would automatically think, keep an eye on him, he is the problem student. His tests were awfully conflicting, "he is distractable/he seems to focus well". etc. At anyrate all this didn't help his education at all but rather affected his self esteem.

I am a teacher and so it pains me to say, but some do mistakenly make judgements on kids and their abilities based on this information. In formation can be power or an excuse. He can't do that because...... etc. I don't want her in my class because I am not a special ed teacher....etc.

I have known the dad of a girl with DS who's dd was always put in a severe handicapped class based solely on her dx of downs. He had to fight to get her included more and put in a more academically based class. It has also been my experience that with Cait because she is AS it is automatically assumed she should be good in math or that just giving her a routine will help her organizational issues.

If a child is doing well and can perhaps function well without supports then maybe it would be good to send them on without clouding the judgement of future teachers with a dx. Heck at least give it a chance to let them just be a kid. We tried it, it failed but I don't regret it.

If the child has definite needs that will have to be addressed then disclosure is neccessary. I do disclose with my 2 older kids. Have no choice, lol. I do disclose about Cait's seizures with any group she is going with because it is a medical issue. I let her choose whether or not to disclose the autism stuff now.

For Dave next year I am thinking of not disclosing at all. In fact I don't believe I ever mentioned to his teacher this year that he has/had a dx of ADHD and PDD-NOS. She knows he has sensory issues and is squirrelly, but we have worked together with that behavior and that has been sufficient.

Renee

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Registered: 01-02-2004
Wed, 05-09-2007 - 12:44pm

Thank you all! I think all the responses to this have been great, whether I totally agree with them or not. You have given me enough reason to pause and rethink the situation. Time is on our side. One more question. Let's say we go ahead and let them release to the SD. The school phych. evaluates her and says she doesn't qualify for special needs, are you saying then if we want the safety net of still having an IEP we will need to do battle to keep it going?? Are school phych. very reliable???

By the way those of you with more than 1 child and 1 or more of them being ASD, God Love Ya!!! I don't know what I would do. I can barely keep my head above water somedays with all of this and I just have 1. I wish I could buy a tropical isaland somewhere for all of our families to vacation at a very low rate, with quality child care etc. We all deserve it. Okay, I am awake again.....

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