I am so mad and frustrated

We are running through the evaluations for our dc who we expect to be in preschool in the fall. This week we had an evaluation (to get ready for CPSE meeting) and the evaluator was furious with the whole EI program. She saw our DC in Feb and there were "red flags all around" she wrote a (in her words) and very strongly worded evaluation and now it is July and we still have such limited services. My dh seems to think we have too many services and I thought we needed more but my case coordinator kept telling me she was doing the best she can and that I had plenty. Now it is put to me that we just wasted all this very valuable time by not having the services we needed (and frankly should be getting from the state.)

I guess my question is what do others who have PDD-NOS get? We don't have a formal diagnosis, but it is often alluded to and today the evaluator just said it out loud. Maybe she wanted me to get my head out of the sand but I am not that person. I have had to chase down services. I have an almost 3 year old who doesn't speak, who is believed to have apraxia and PDD-NOS and I have 3 sessions of Speech a week, 1 OT (which only started 2 months ago so how are they writing a 6 month report?) and 2 special ed. We only had 1 special ed session a week until 2 weeks ago when it was finally upped. Each session is 45 minutes long.

The evaluator said she sees kids all the time where she can't figure out what why they have any services and she can't believe this is all we have had. She also said what I feared - you get less, not more in preschool.

And she said we should have been getting the ball rolling on the school process a long time ago. We were told by our coordinator not not to start until May due to child's birthdate, but evaluations only finally ended this week and we do not yet have a date for meeting and I am seriously worried that there will not be space for my child.

just feel like I am making mistake after mistake in the most important endeavor ever.

Message edited 7/14/2011 11:37:40 PM.

Re: I am so mad and frustrated

I think the evaluator is lashing out against something, not sure what but she should chill out. Almost 3 years old is perfectly ok to start getting services. My DD wasn't diagnosed until she was almost 3 and a half. You're still at a good age to start services and go through this process.
When my daughter was diagnosed, we initially got speech 3x per week, PT 2x, OT 2X, ABA, feeding therapy, parent training and placement into a 4-hour self contained classroom.
What district are you in? Don't knock yourself down about this because you're doing the right thing for your child. It's hard enough going through this process without the evaluator criticizing you doing the process.

Re: I am so mad and frustrated

We started EI over a year ago. Speech 2xs only for first 6-8 months, then increased to 3 xs. Started OT 9 months after first started EI. Special Ed started at 1 time a week initially 6-7 months after we started. Pretty quickly all wanted to up, but took 12 add'l weeks for paperwork for special Ed to increase.

Re: I am so mad and frustrated

it is very frustrating!

The key is to get the diagnosis if you and his therapists beleive he has PDD-NOS. Once he is diagnosed services will be given much easier.

I struggled to get my DD the bare basics and they kept telling me that she has enough blah blah blah. I made them get a psyc eval (which they didn't want to do, but if you request it they have too). and she was diagnosed officially with PDD-NOS and then everything fell into place.

Good luck.

Re: I am so mad and frustrated

Ah, ok. I saw your LO has services but I didn't know you've had them for a year now! I agree with the pp that once you get a diagnosis, the services are easier to come by. Have you considered having an eval done by a neuropsychologist? That's the avenue we took prior to going to the district. They agree with the private eval and the we got everything we asked for.

Re: I am so mad and frustrated

DS is not on the spectrum (he's "at risk" for ADHD) and I just wanted to give you a comparison, b/c the services seem very similar:

2xSP (30 min)
2xOT (30 min)
2xSEIT (60 min)


What do the evaluations show as results below the standard deviation? That's what I think got the services for DS. He was often close to 2 SD below the mean in many of the tests - mostly due to his non-existent attention span.

Re: I am so mad and frustrated

Message edited 7/15/2011 4:01:44 PM.

Re: I am so mad and frustrated

It's hard to compare what others with PDDNOS get, since the needs can vary, but this is what DS has for the summer:

OT 2x 30 min
Speech 2x 30 min (push in, focus on pragmatics)
SEIT 5x 60 min.

In the Fall, he will go to an integrated PreK and continue to receive speech and OT there. Right now he's in a general daycare.

As for the evaluation, you need to request a psych evaluation as others have said. And don't let the person complaining about EI get to you. I might even tell her that while you appreciate the fact that she's trying ato get more for DC now, it's not productive to focus on what went wrong in the past. Because it isn't, you need to really work on getting services now, and move forward. Believe me, I have some regrets about DS starting treatment later also, but it is what it is. I can only look forward now. And 3 isn't so late. There is still plenty of time to make new connections. If it helps, I read somewhere that most kids with this diagnosis don't receive it until 3 or 4 when more is expected socially.

Many : and don't worry, I'm sure DC will get what is needed iF you persevere.