Now I am questioning. | Autism PDD
Ok, so I had a meeting at Payne's school yesterday. The pre-IEP meeting and basically was told that they are doing the best they can unless I get him dx as classic autism instead of the PDD-NOS, which they will still do their own testing after I get the private testing and new dx to have him evaluated for services. I am so frustrated. Then I said that they are supposed to do testing themselves...why should I go private if they'll end up doing it themselves and won't listen to the dr I get anyway...she says b/c Payne already has dx he isn't priority.
I am so frustrated about how they give the runaround. If the PT and OT weren't there I wouldn't have known that even if Payne doesn't qualify for ST and language he can still get communication - which is a lot of the same thing. The ESE rep tried to "forget" about the assessments that I do need done. Kept talking about at the IEP mtg she'll invite / do...blah blah blah...I told her I wanted the results before then instead of discussing it by then...she said the IEP has to be done by April...and the evals even if ordered have up to 60 days to be done (I already knew that) so the evals probably won't get done for this IEP and that we would re-do it after the summer break if he qualifies...the PT told me that if he gets evals and qualifies - even w/o the IEP he would get those services for ESY which is why she wanted me there. I AM SO FREAKING PEEVED!!!! I am taking Payne to the ped neuropsychologist on the 26th of this month to see how much/little progress he is making - if the dx is right...there are a lot of things that would have qualified him as classic but now he is more PDD - possibly not even that ...I dunno. So frustrated.
So sad to think that this happen to our kids everyday! Our school only gives services if your child is nonverbal and extremely affected...high functioning autistic kids fall through the cracks and they seem clueless on what to offer them and question "why" even have the diagnoses because academically they are so smart.
I had the problem of Sarah getting autism label by developmental pediatrician, and reg pediatrician..pdd by neurologist just to have the school tell me she has provisional autism
I will never have faith in the public school system and thank God I am lucky enough to get her services outside of school to help supplement her. I am new to IEP, ARDS and whatnot and was recently told by her teacher that most teachers never even looks at IEP's because the language it is written in gives them a headache
I am not a fighter at all but I see a different side coming out of me I had no idea existed till now
I am so sorry that you are going through this, this stuff is so frustrating! It should not matter what the diagnosis is but WHAT your child needs and they shouild know that. But as we know with school districts its all about the budget. Your school district should do their own evaluations and if you question them or are not pleased with the results it is your RIGHT to an outside evaluation at the SCHOOLS expense. Often times the school "professionals" have No clue as to what they are doing.
I do not have issues with my school district but I want you to know that I am thinking of you and hoping this all works out for the BEST for your sweet boy!!
Get a lawyer or advocate involved. The autism dx is not just for classic autism. It's not that a lawyer or advocate will tell them anything you can't. It's just that someone in that position has stripes that Mom doesn't (even if Mom IS a lawyer or advocate herself, she's "only the mother" when it comes to the schools).I have an advocate - I just chose not to take her to the pre-IEP. I'm not sure if she would be able to get them to do anything that I haven't already anyway. My ESE rep is "new" and she is constantly reminding me of that. I am considering - even though Payne is doing well in that school and has some resources switching him to one of the schools that is called an autism cluster - not sure...and I just found out about them not more than a month ago. Payne is doing things attention-seeking and he has NO retention. Some kids remember verbatim sponge bob . ..mine can't remember what I just told him. .. or does he? I am just really thrown right now and I just don't know if his dx is right. He doesn't seem to excel at anything unless he wants to. His nonverbal and verbal communication assessment that was done last year is the same - no chg. ?? I am pleased to say - I got the ESE Director for the SB on the phone and he is calling a meeting w/ me and the ESE rep to set her straight...he is also setting up an appt/interview w/ the autistic cluster school. the ESE chair that I liked so much from years ago is there now!!!!
Excellent, I am glad to hear about this development. On a side note:
when we have an IEP date and an eval date that don't "line up" we either
move the eval up so it happens early enough that results can be used for
the IEP (not useful in your circumstance) OR we basically make a new IEP
called an "interim" IEP, that looks very much like the old one, and has end
dates after the eval is complete so that a new IEP is written when the eval
results are in.
And once permission has been signed for testing, the assessment must
be completed within 30 school (student contact) days.Yea, the director was telling me about the interim IEP. He wants to sit in on the final one...when the results are in.
Gooid job hanging in their!!!!!Hope it goes well!!!Now that I have him involved this should be much easier for me. He is a real advocate for parents and their kids needs...not the budget.
you were talking about an ESE cluster school what is that. We also have never gotten all the info that we need. Last month Chelsea my daughter went for her checkup at Kluge and we found out that she should have had MRI Catscan and fragile X testing. She has been diagnosed since 2 and she is going to be 5 in july. So i totally understand. And her school says that parents are only allowed on Fri and for a certain amount of time. Every time i send notes or call i either get the call weeks later or never. So if anyone knows where we can get info about what to do please let me know.I have just always wanted what is best for her and i feel like a failure because i havent given her everything that i can Please help. I am so glad that they finally helped you with your problem and hopefully it wont happen again Good luck and God blessif the reevals are after the preiep, get a date for them to be done by and schedule another iep just after the results would be in. dont leave the mtg without the date being set and it working for you andyour advocate. even a free advocate can help. also, pdd is lumped into the 'spectrum' and still qualifies as a disability so legally they cannot deny him services (ive recently been thru alot of the same issues.) if your docs can right a recommendation of what he needs that would be great and make enough copies to go around. have one copy hilighted for quick reference when you are arguing the whys at the meeting. also, if you have not done so contact the person at the state level on the board of education who oversees all of early intervention. you may have to call the superintendant of the board of education for your state for their name and number......and they usually will give it to you becuase you went so highup and they dont want to bother the superintendant. when you contact them tell them the situation. if any of it is against the laws they follow they will probably contact the county level for you because again....if you went that high up they are going to take you seriously!
best of luck to you and hang in there! the fact your looking for the answers tells me you are on the high road!
Not a HUGE improvement, but - I sw the behavior therapist for Payne's school about the ABA question I had earlier and the ESE chair had told me no...the day that frustration was me
She called and asked what I specifically wanted the ABA for and I told her that Payne needed to keep working on eye contact and asking for what he wanted, etc and for general convo skills and SHE IS GOING TO HELP HIM AND TEACH THE TEACHER AND AIDES TO DO IT!!!!!
Copyright Autism-PDD.net