For those who have gone thru Kennedy Krieger

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What's next?

I'm getting confused by the process.

I called the beginning of February for appts. He qualified. In the meantime I've gone through childfind with our schools and they have him at borderline PPD-NOS/Asperger's, not wanting to say Asperger's with him being only 4.

In April he had his OT appt and eval at KK. Basically, he has HORRIBLE hand strength (bottom 1%), some fairly serious fine motor issues and minor gross motor issues. Then we waited and waited. On mid october we got a call for a canceled appt. and we were next. He had Speech testing one day and a meeting with a developmental specialist in pediatrics. She was pretty awful, to be honest. Like, just going up to a kid on the spectrum with no discussion or approach and wanting to do a physical exam (which I was not told was part of that appt.). Of course, he LOST IT and the appt. from there on was a waste. All she got basically was the history and noticing his unusual play and his HUGE fit.

Now, she has recommended a psychiatric eval which we have an appt. for next week. I "think" it might be for anxiety, but is this part of the usual diagnosis part?

Right now his diagnosis is a big, "we're not sure, let's do more testing". She has him down as PPD-NOS, but said it's borderline Asperger's and he needs to be seen as well as needing OT and Speech therapies as well as some eval for his annunciation of speech.

Can those of you who have gone through this enlighten me a bit? When do you really find out what it is? How many eval appts are there?

I've never heard of Kennedy Krieger and don't know what it is. But, I have been through the diagnosis process with my child. I don't think there is a lot of difference between PDD-NOS and Asperger's Syndrome (AS) and, from experience, my son was first diagnosed with PDD-NOS and later with AS by different medical specialists. So even the "professionals" don't know for sure. Based on these conflicting diagnoses, I decided to stick with AS because: (1) It is far easier to explain AS to a child than PDD-NOS. To my son, PDD-NOS was a whole bunch of capital letters. (2) There are far more resources available for learning about and dealing with AS than there are for PDD-NOS. For example, there are a ton of books on AS and none that I know of for PDD-NOS. Look at this website...its got AS in the title but not PDD-NOS.

So what matters most is not necessarily the specific diagnosis, but getting to know your child's strengths and weaknesses, and then helping your child cope with their weaknesses, throught OT, or Speach Therapy, or tutoring, or whatever you can do.

Hope this helps!

Of course, it's getting the help he needs that's important, but I also want to know when we stop "scouring" for a diagnosis so that we can concentrate on getting him the help he needs.

Of course, it doesn't help that we're moving just as we are finding out what therapies he needs. And we're moving about 60 miles from where we live now, so it's not useful to find someone and start now. (Thogh he is getting speech and OT through the school now - except his OT teacher never shows up).

I'm just tired of waiting for all the evaluations to be done. It's been exactly 9 months now and we're STILL working on figuring out what he needs!! ! It's so frustrating!

I went to them for my initial eval, and I got a PDD-NOS diagnosis before I left that day. It took about 6 hours. They said that it would be Aspergers if he didn't have the language delay...he is more AS than PDD-NOS in my opinion.

I recently went up there for a re-evaulation to see if autism was even valid, to see if he was experiencing anxiety and to talk about diet. I was set up for 5 evaluations, speech, OT, neuropsych and behavior psych, and the feeding clinic. I went to 2 of them and the feeding clinic was like an evaluation. The other wasn't an evaluation at all, it was like a consultation for services I was very clear I was not getting there. (I live 50 miles away) so I didn't go back. The first time I had a great experience, the last time was totally different. It would have taken me over a year to get my answers.

Are they asking for a neuropsych exam? or a psychiatrist? That's different. Neuropsych will give you more of an idea of their brain function, IQ, memory, things like that. I'm not sure about the psychiatrist. You can call your developmental pediatrition and ask...he/she should take the time to walk you through all of this for as much as you paid.

I agree with DenvrDave. Get as much information as you can as to your child's difficulties and focus on that. A diagnosis of PDD vs AS really doesn't help you. Knowing what to work on and how much, and how you divide up your resources is what is really important.

Let me know if you have any questions about them, but I will tell you I'm not really impressed with them so keep that in mind if you ask me anything

Good Luck!

It's for a neuropsych. eval. So, what should I expect, so I can explain it it Henry. If I can tell him what to expect, he is usually OK.

I stopped my evals before I got to Neuropsych so I have no idea what that is like for a child to go through. You could probably call the neuropsych department and ask, they should be able to tell you. It wouldn't hurt to call these places frequentlyanyway to see if there are openings, this has helped others I know get in quicker.

Really? Cool.