Should i push for a diagnosis???

iVillage Member
Registered: 05-24-2003
Should i push for a diagnosis???
4
Thu, 09-25-2003 - 11:22am
OK, this is the THIRD time i am writing this post. I am frustrated with my stupid computer. GRRR.

Ok, again. :sighing:

When do you push for a diagnosis??

Last week Dh and i had a meeting with Catie's therapist. She said the first week of school Catie treated the other children like furniture, wouldnt do circle time, and had severe tantrums. The third week of school she graduated to side by side playing. She said Catie is 95% typical 3 year old, but the 5% is her social problems and they are severe.

When i mentioned Autism and PDDNOS, she said she saw some signs and that YES, she sees what i see.

Over the weekend i found a website that listed symptoms and signs of PDDNOS and i printed it out and highlighted anything that applied to her in the past or applies now. 50% of it is highlighted.

Then i think it was Monday night when i saw the MOM OR DAD post and i about fell out of my chair.

On Tuesday, i went to Catie's therapist at school with the list of PDDNOS symptoms for her to read. I asked her if i should push to get Catie diagnosed.

What she said was this "I can't diagnose a child. Only a psychologist or a doctor can do that. But right now she is labeled as DD, developementally delayed. And if her label was changed, her IEP program wouldn't be. I mean, we could move her into a special ed class for Autistics but i don't think that is what she needs. Our purpose is to get her to act typical so she can sit in a desk and do homework and be succesful in school. If we can do that over the next few years, then her DD label will be dropped and her special ed folder will be sealed. If at the age of 7 or 8, we see very little improvement, then she will have to have another diagnosis, perhaps PDD and her IEP will continue."

I basically got the impression to not be in a hurry to stick the label on her. That we have all the time in the world. I asked if she is missing out on anything if she doesn't have the label because i don't want her treated for one condition when she has another one. And she pretty much told me that nothing would change but her label. But i got the impression that the label of DD is easier to get rid of than PDD or anything in the family.

When i told her of Catie doing the MOMDAD thing, she suggested that i tape it for her Psychologist. But our HMO has only approved 5 visits, and at our fourth a few weeks ago, he thought she was pretty normal and anything we were having trouble with would be solved as her speech gets better.

GRRRR. I am getting conflicting answers. And ofcourse, this Psychologist has only seen her in his office full of toys. So what else am i supposed to do???

When do you decide enough is enough and push for a diagnosis? How do you know if that IS the right choice for your child? Should i do what her school therapist suggests and just go with the flow of the school year and see what happens? Should i believe the Psychologist and think this will just go away???? Should i go with my gut that says get her diagnosed? What happens if i am WRONG??? What if i am just deperate to find an answer to her behavior??

I have been in circles for so long i can't tell what is right and what is wrong anymore. Any suggestions? Advice? Anyone been here before?

If she IS diagnosed with PDDNOS, what are some of the benefits that she would have that she isn't getting now? I mean, right now, she gets free preschool, with therapists and IEPs. But is there something else that she would be getting that she isnt getting now? Because if this IS what is wrong, i don't want to waste her time and a chance to have other benefits to help her.

Helen

iVillage Member
Registered: 06-25-2003
Thu, 09-25-2003 - 12:38pm
Helen,

I am in a very similar boat to you, but my son is now 5 and it so the issue is older for me:

There are several issues here:

The school district classification SHOULD NOT impact the level of services she receives. For example a shild who is labelled Speech impared is not restricted from receiving physical or occupational therapy if he or she needs it. Regardless of the label, the services should be geared towards the child, not the label.

Despite that however, I know some labels can carry mimimums requirements. In our area for example, if a child is labelled Autistic, The SD is required to give the parents training.

So if changing the label is not going to materially change anything for Cait, don't fix what isn't broken.

On the PDD-NOS issue: Here is my layperson's understanding of PDD-NOS: PDD-NOS is kind of a catch-all for a series of behaviours which do not discontinue. Many kids with language and processing issues present like PDD-NOS at an early age. However, often these behaviours go away, or morph into something which is recognised in another DX. If by 5 or 6 the child is *still* exhibiting a lot of PDD-type behaviours, then s/he is thought to truly have a *pervasive* developmental disorder.

So go through the list again, and cross out any behaviour that Cait has discontinued. Does the picture look better?

Now, evaluation and DX.

I hear you loud and clear on the health insurance front. (It is unlikely that you would get a dx in a single session -unless you go to a particular doctor I *wouldn't* recommend!). Our HMO has FLATLY refused to cover any testing for Peter, Our doctor (who is wonderful) recommended a program at a local university where your child can be evaluated by a doctoral candidate under supervision by a PhD. It still costs a few hundred bucks, and we are on a waiting list, but it's the best we can manage at the moment -better than having no answers. Maybe you could ask your doctor is there is a similar program in your area?

The other option for evaluation is to push the school district. How successful you may be depends on how long it has been since her last eval, (and whether the district paid for *that*), and if you can make the arguments that her behaviours are escalating, and the current placement may not be appropriate. (although on placement, be careful what you wish for!)

Two other thoughts. In the momdad post; you mentioned that you usually only see this and several of her other behaviours in the eveningtime. This led me to think two possibilities:

a, Maybe it's only when she is tired (did you used to see them more during the daytime too? -then maybe they are diminishing). How about increasing the number of hours she sleeps

b. Maybe something she is exposed to during the day is causing some of this -perhaps a food sensitivity of some sort? Have you had her tested for food allergies?


OK. I'm all idea-ed out. I hope this sparks some ideas.

Good luck

-Paula



-Paula

visit my blog at www.onesickmother.com
iVillage Member
Registered: 03-28-2003
Thu, 09-25-2003 - 2:02pm
Renee and Helen,

I'm editing the post that was here, as i was giving you false information! I thought I was telling you truthful stuff, but TEAACH centers are part of the UNC school system! I am so sorry!

I'll leave the rest on, so you will know what I messed up on!

below is the origonal and wrong post:


Having just gone through a similar experience, I know exactly how frustrating this is!

One place I went to, that I think you both should consider, is the TEAACH center. These are the centers that are part of O.A.S.I.S. Most communities in the US have a TEAACH center, or something like it. They will evaluate your child for free.

Although they turned Liam away after the first initial screening, keep in mind, he only has one Asperger's type trait. Also, they did a very good prescreening. To date, he is the only person I know of who they turned away! They usually have a Long waiting list, so you will have a lot of time to change your mind if you sign up now! But if you feel anything like I did, the not knowing is what kept me up at night.

Sio


Edited 9/25/2003 5:21:53 PM ET by sio64

iVillage Member
Registered: 03-28-2003
Thu, 09-25-2003 - 5:15pm
OMG, I so messed UP!

I was wrong, and the TEAACH centers are just in NC! I so apologize!

Sio

iVillage Member
Registered: 07-22-2003
Thu, 09-25-2003 - 5:21pm
I would also keep in mind that because of funding issues, schools generally do what is best for the school. Your child is your child, but to the school, your child is one of many students they have to deal with and some may have more problems than hers.

When my oldest son was having problems at school, the school did nothing to help until we got a therapist out of our own pocket to test him and say he was learnig disabled and needed special ed, or flex as it was known in our area at that time. It was then I found out that the school was not very interested in helping a child who was struggling but managing to be a C student. In their eyes he was able to keep his head above water so they wanted to concetrate their limited funding on students who were doing worse. Once in flex he became and A and B student almost overnight.

I am new to this, but it seems that while it may mean nothing interms of her IEP, it may mean you are eligable for some other benefits. Your child is very young so you may be able to afford to wait a year or two and see if she improves, but if it looks like nothing is changing I would get a further diagnoses. Your child is who she is and has what she has. Giving it another name or trying not to "label" it, doesn't change it to something else. It is only my opinion but what you gain from not giving it a label may be outweighed by what she may lose in intervention and programs for people with disabilities. You are going to have to research that.