Little Lulu--read my post below (NT)

Thank you skeptic. I wish I had seen your post long ago.
I did let them see the report because they told me that if I wanted to write IEP goals and objectives according to her educational recommendations, I had to submit the report.

I let them (school psych and SPED administrator) read it, but they did not keep it and it did not enter his file. Only the WISC, WIAT and WRAML were submitted.

But, I see in hind sight that this might have been a mistake.
I have a very hard time with hiding information especially if if there is a chance it might actually help get what my son needs to be successful.

I’m not sure I agree with asking the neuropsych to modify her report to my specifications. To me that seems unethical. But maybe I’m wrong.

All in all, I am not a good game player and I know you have to be in the special ed arena. I believe in being honest and straight forward and as naive as this sounds, I in turn expect the same. Reality is that this is not the case with school administrators, but I refuse to stoop to their level.

In the end, when we eventually find ourselves in due process, I have nothing to hide. I have made an honest attempt to help my child but it was not reciprocated.

This was pointed out long ago by my PhD psychologist friend. She is the one who directed me to have the PDD discussion excised from my son’s report. I too was shocked, because I was not immersed in this world. She pointed out that I had hired this person to render a service to help me and had paid them and they came up with a report with an unwarranted diagnosis that could have lasting damaging effects. If I thought it was unhelpful, she said, it was my right to have that part of the report taken out. I called the neuropsych with trepidation, but there was absolutely no discussion—he could see my point and done, I had the revised report. It was though it was the most normal request in the world—done all the time. In other words, this was viewed as absolutely my right and not the least bit unethical. What has been unethical in your case is an incompetent neuropsych making an unwarranted dx.

Think of it this way—you are buying health insurance and ask your GP for a health report to submit to the company. Though you have never sought any kind of counselling for anything in your life, your GP gratutitously writes down in other remarks, “Patient appears neurotic and may be suffering from anxiety.” He does this although he has never referred you to a qualified mental health professional for evaluation. Do you submit this report as written, quashing your chances for life of getting insurance on totally erroneous grounds, or do you kindly ask him to remove this as unwarranted?

Since my episode with the neuropsych, I have fought a rearguard action undoing the damage because like you I blabbed to other professionals. Like the neurologist I went to to seek a further opinion. He openly showed to me total disdain for the neuropsych and the PDD dx, but guess what—the fact that there was once a question of it got into his report—though it was totally shot down. Based on my friend’s advice—this report never went to anyone because the mere mention of PDD puts it in the mind of anyone who reads this report. When I had one report I absolutely had to submit, I went to my ds’s pediatrician (pillar of the community and all that) with the problem. His solution? He personally whited out the PDD reference from the report and rephotocopied it. I couldn’t believe it (though I was grateful.) His point of view—the report did not serve truth for his patient as he saw it and could undermine his proper treatment.

Again, the PDD dx is very valuable to kids who have and extremely damaging to those that don’t. You have to protect your child.

I understand your point but I still have a problem with asking them to set aside their professional opinion for my gain. She gave us a verbal report before typing up the written report and she knew that we did not agree with her diagnosis of PDD. But that was her finding and I feel it is unethical to ask the professional to come up with a different diagnosis because I didn’t like the first one.

The first thing I thought of though, maybe I’m in denial, maybe I just didn’t see everything. But our other two professionals put my mind at ease.

The school was receptive to the fact that I, the private psych and the pediatrician did not accept the dx. Therefore, they would not accept it either. Like they said, it is one opinion and no wise medical consumer ever settles for one opinion. In hind-sight, though, I do believe that their offer for a second opinion, at their expense, would be to try to confirm the first PDD dx.

I guess I wish I hadn’t shown the school the PDD dx. But like I said, I see this going to due process before all of this is over. I know I stand a better chance in the end if I was honest all the way through.

One person believes he fits the dx by a 45 minute interview vs. my 10 years with him and the same pediatrician caring for him for 10 years and a clinincal pysch’s weekly/1hr. therapy for almost a year now. Whose dx of him holds the most water?

I think it just strengthens our case of how complicated he is and we have had to go through a maze to get him the help he needs without the aid of the school who was supposed to have found him in the first place when they “passed” him for his kindergarten screening. Big mistake on their part.

Thanks for all of your advice though. I know you speak from experience and are helping me to make the best decisions. I truly appreciate it.

I definitely would not ask her to change her diagnosis—just omit the references to PDD in the report. My neuropsych reports do not include any diagnosis—there is just a statement that some the results and observations of a child would be consistent with PDD (NOS). There is no rule saying a neuropsych report must include a diagnosis, and I would say it certainly should not include a medical diagnosis from a non-MD neuropsych. She should be reporting on test results and indicating where they could suggest learning problems and that’s. You should get a report that limits itself to things like “he did well on this test, but poorly on that, suggesting an auditory memory problem.”

You would not be asking her to change the diagnosis (I agree that would be unethical and she would rightly balk at such a request), just eliminate the one she should not have made in the first place. This is not unethical. What is unethical is making incompetent, potentially damaging diagnoses for innocent children. If you do not agree with the PDD, you do not want any paper with those three initials floating around. Yes, two other professionals have agreed it is a mistaken diagnosis but human nature being what it is, any person going through the files will think those are the ones you bribed to cover up because you could not bear the truth. Think of your own family you probably blabbed to as I did. Do they truly buy the story that your son suffered from an incompetent diagnosis? Or are they really saying to themselves “I always knew he was odd—oh, now she says it’s dyslexia and that’s what’s made him anxious. Well, I guess if it makes her feel better to think that. But as they say, where there’s smoke there’s fire. Parents really just aren’t realistic about their kids’ problems.” Took me several years to correct this kind of thinking with my nearest and dearest—and I have a supportive family that seldom backbites. If your family has lingering doubts about the first dx they were told it would take the most superoptimistic of thinking to believe that school personnel reading your son’s file wouldn’t not only have those doubts (much magnified), but also think you are a parent in total denial about the nature and extent of your child’s problems.

And if you don’t believe me on this, scroll back to your old posts and see the respondents on this Board, once you mentioned PDD with the caveat you thought it was erroneous, missed all your caveats and evidence to the contrary and went on to give you advice about how to deal with your PDD son. In other words, only the PDD stuck in their minds and they mentally skipped over all that you wrote on contraindications. And this is from sensitive, well-informed people. Again, human nature—first impressions are often the most lasting.

I know I sound harsh here and way too cynical, but you really have to be pragmatic. Again all of this was told to me by my PhD psychologist friend who lives and breathes in that world every minute of her working day. My experience has borne out what she said.

Okay, now I understand what you are saying. I did not realize that PDD was a medical dx. So now I’m really angry that she made that dx instead of saying she observed indications of PDD. This is very damaging in the wrong hands!!!

I don’t think you are being harsh or cynical. I appreciate straight talk and appreciate you giving me sincere advice.

The family members that I told were outraged by the dx as well (at least to my face), but I know what you are saying, and I honestly don’t know what they truly believe.

The psychologist explained to me yesterday that you can have behaviors or characteristics on the autism spectrum (or how professionals would describe the behaviors they observe) but that doesn’t necessarily mean that you are autistic or even on the spectrum.

After all of this discussion, I am pretty much convinced not to accept the ED identification. I really think that they are trying to set us up and squirm out of their responsibility to provide FAPE. Instead they want to pin the responsibility of not learning on my son’s “supposed” emotional instability.

Fact of the matter is, we don’t know if the anxiety would have even surfaced if the appropriate educational interventions had been provided from the beginning.

Pervasive developmental delay—think about it—it indicates delay in several major developmental areas to the point where these delays pervade every part of his little being. A dx of PDD should only be made by a doctor—although of course they are all licensed, a competent generalist pediatrician would not make this diagnosis (mine wouldn’t touch it) but would instead refer the parent for further evaluation to a specialized developmental pediatrician, neurologist, or psychiatrist to make a final call on the dx. Based on my experience, I am on a minicrusade against non-MD neuropsychs making this diagnosis and putting it in writing in the child’s report. (This is why when you first posted, I immediately responded with my doubts.) A mistaken diagnosis in this area is very damaging. The neuropyschs should know that. If they wish to discuss their suspicions with the parent orally, fine. The most the report should say is that the child’s test results, together with the neuropsych’s observations, suggest further evaluation by one of the above specialists is warranted. Glad your family is outraged by the dx. (They probably live closer to you than mine do so they have a better idea of your ds’s behavior day in and day out so they know what rubbish the dxt is.) IMO, you absolutely do not want an ED designation—OHI would be much better if you need it. I think you are dead right about the anxiety—who wouldn’t be anxious under your son’s circumstances? Anxiety in that situation is normal, totally to be expected, and the solution should be to address the lack of proper instruction that gave rise to the anxiety in the first place. Of course some of the collateral damage the school has inflicted on your child may need some counselling to overcome but this certainly does not mean he is ED.