Pre-school - kindergarten problem with school? need info

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My son was diagnosed with PDD-NOS last may, but i did not receive the actual report of our phycological meeting till this past october,(they forgot to mail it)... Anyways my son has been with the county pre-school for developmental delays for the last 3 years(i held him back this year). And they have him listed as just developmentally delayed. He recently got accepted to a Pilot program here in utah for autism that provides funding for ABA therapies, so we are in the process of setting everything up. i called the school to let them know and see if they(ABA) would be able to work with him in school and she told me that the district would not allow it cause it is not a school program... so first question is do any of you have ABA's that work with your child in the schools that are NOT employed with the school?....... ok here is the rest of it, So she asked me to bring in his diagnosis report so it could be copied and added to his file and so they could change his "status" from delayed to autism... So I went in yesterday so they could change everything and she read his report that says PDD_NOS and then tried to tell me that it would be better to leave him as delayed.... BUT that they can not be termed "delayed" after 7 yrs of age and so special ed. would not be available. so they either go into mainstream or must be re-diagnosed/ re-termed as something more definitive.
Here is the other Hitch..... Even though he is diagnosed I still have to fill out a evaluation test and so does his teacher, then they are graded with points and if he doesn't meet the point criteria they will not list him as autistic..It is the GARS-2 they want me to fill out along with his teacher to be rated...... but they(teacher & director) talk as if he is normal and up to speed as much as any normal child, they say they are "shocked" by this diagnosis, and that PDD_NOS is a catch all so to speak and as he gets older they(dr.) might decided he doesn't have it......he has gone 4 hrs a week for the last 2 yrs and 8 hrs a week this yr and i had to throw a fuss just to get that much time for him.....Anyway what do you think i should do? is there any benefits to him being classified as autistic rather then delayed with the school? I am still leaning tords the autistic classification, because of the fact that she said after 7 they no longer qualify for services with just delay. But i am also upset at the fact that my son can have this diagnosis but THEY still have to rate him to receive it through the district. has anyone had similar problem like this? or give me some in sight!! !

Did they make any attempt to justify why they think "delayed" (PDD-NOS) is preferable to autistic? It sounds to me like they are trying to queue things up for themselves so that it is easier to deny him services later on.

Disclaimer: My son has severe social deficits and so we qualified initially as autistic and never went through the PDD-NOS phase, so there are going to be people much more knowledgeable about this than I.

AS to the first part of your question, no as far as I know public schools will typically not allow therapists into the school unless they are district employees or contracted with the district. My son gets picked up early from school to receive services from our Child Development Center because the providers from CDC are not allowed to work with him at school. I was worried that missing school hours would cause a problem but the school told me that as long as we wrote it into his IEP then the time away would not count against him.

I wish they would just stop with all the PDD-NOS, HFA, Asperger's, etc. distinctions. All of those are going away in less than a year. Why are we splitting hairs about them still?! The teachers have NO WAY of knowing that he will grow out of his difficulties. As a matter of fact, for many kids things get harder in the first years of elementary school not easier. My suggestion would be to do whatever you need to do to get him as many services now as you can. All the research is pointing to the tremendous benefits of intensive early intervention. If that means jumping through the hoops to get him an autism diagnosis, then do it. Talk to the teachers who will be completing the GARS and see if you can point out to them his difficulties and where you see problems. Does he play well with other kids, how is he with transitions, can he carry on a RECIPROCAL conversation (this means NOT just talking about what interests him but actually paying attention to what someone else says and responding to it)?

No they did'nt say as to why they thought "delayed" was preferred she just kept saying that i could always change it next yr if he was re-diagnosed or if he didn't excel in kindergarten, which to me is dumb. If he isn't progressing and up to speed with learning now i don't know what makes them think he will all of a sudden catch up next yr. To me it would make more sense just to change it now especially since his re evaluation is next month to see if he qualifies to stay special ed to transition into kindergarten. It does to me feel like they are lining it up for there benefit to deny him later on.

I had read a quick article saying they are going to redefine the terms this yr i believe, not sure the specifics. I thought the same way, how do they know what will happen! just in the last month alone he has started with 2 new issues, but they swear up and down they don't see it at school and i'm thinking.... Well how the hell would you know how he will be in kindergarten,
( i am personally terrified of the day he starts and dreading this september cause of it)....! yes my son is purposely deceiving me to make him think he is autistic, LOL ....i also thought well then you must not be paying attention, either to many other kids in the class to notice him, or something he's been there since he was 3 so he knows the routine also....and also i have not been happy with this school in the first place, the first yr he learned practically nothing how to spell his first name, second year i put him in this school and also into headstart so he went 5 days a week and he excelled learned more then i could have hoped for ......letters, numbers, phonic sounds, how to write his name, i could name a word and he could tell me what it started with, there where instances where he acted more like his own age..... I was elated and over the top happy..... then this yr he didn't qualify for headstart cause of age so it was back to district again and this year not only has he lost a little info but the only thing he has learned this whole yr is how to write his last name... that is it. I kinda think they have all worked there so long that they don't even know what is what anymore and they think a child like mine is a normal child.

I asked her who rated the Gars and how and she said it was the autistic specialist that works for the district and she had no idea how the rated them, my concern is with the teacher filling out the gars, because they have already made it clear that they don't see his issues. so i am afraid that she will fill it out with no problems indicated. I asked her if he rocks during Carpet time while they read a book and she told me that she has never seen him rock, but i know we can't get him to hold still and not rock if we make him sit unless he's passed out asleep! It all depends on how i and the teacher fill out these GARS individually with a combined test score whether they give him "autistic" classification, and i don't know if we go back to the phycologist and have him re diagnosed and push for autistic diagnosis if that will change the school out come cause it is still the same process with the GARS test. and he was classified PDD_NOS manly because he is social and likes to interact with other kids, he does play well with them, he does transition well to a extent i don't know what kindergarten will be like though cause it is way bigger then the school he attends and way more children to deal with, but he does not really reciprocal conversation very well unless it is something he likes or wants to talk about. he will answer questions to the best he can for people he is comfortable with, but mostly it is all about his interest.

On another note:

One of His new issues lately are being over sensitive, like if my husband asked him to pick up his cloth or sit at the table and eat he will burst into crying, like he is completely hurt, or if my husband raises his voice he will run and hide and start crying daddy hates me,(i think daddy is also asd) or if his sister ask him to stop hitting he will cry and say "my sissy hates me and she is his best friend" and doesn't love him, yesterday he sat and cried for 20 minutes cause daddy left the park and had to run to a friends real quick and was coming right back for him, but that didn't console him he cried the whole time from the moment he left to when he got back and was put in the car..... and this is new for him...... and usually i am the only one that can console or calm him down and steer him off these thoughts......but its hard any suggestions on how to handle these rushes of feeling sad and over reactions to things?

in my neck of the woods, putting the "Autism" classification on the IEP costs the dstrict the most $ and automatically guarantees the kids maximum services.

My district gave me a huge runaround. I was told things like, "Aspergers isnt a real diagnosis, its what they say when they dont know whats going on", and "You dont want someone to read his IEP and think he is AUTISTIC!! !" etc..

Very sad they dont do whats in our childs best interest but whats in their budgets best interest.

lf possible, I would recommend getting an educational advocate (this is a consultant, not a lawyer) to attend your next IEP meeting. The school won't get away with as much nonsense if a good advocate is involved.

I don't understand how they can do that at all. If he is diagnosed PDD-NOS, that is on the Autism Spectrum. My 5 yr old has the same diagnosis, his preschool immediately changed all his records to show that when he got diagnosed. I think if they want to keep the classification as "delayed" it may mean that his educators and therapists won't have all the info they need on him, to help him best. "Delayed" is not as specific as "autism"... autism is what he has. PDD_NOS also doesn't mean it's not too serious, it means the person has a different mix of deficits than someone with a diagnosis of autism or Aspergers. These are people who don't neatly tick one box here and two boxes there etc... but they may have just as many challenges. It is also quite common that children will "hold it together" at school, only to walk in the door and meltdown in the safety of their own home. If they don't see his problems, like you do, then they may be less likely to try and make things easier for him... causing more stress and anxiety for him.
If it was me, I would push for it. You have an answer for why he is delayed... it matters.
Good luck!

I'm under the impression that with non-verbal kids, sometimes schools want to call them "delayed" to treat them like they have MR (metal retardation, or intellectual disability), and so offer less academic challenge and less services. I would fight to get the proper classification.

I have a friend who went through this with her son. He was in a self-contained school and floundering, but once they got him out of there he immediately tested into the gifted program. This is not to say that these programs aren't effective for some kids: some school districts do actually know what they are doing - but be wary.

Most of the kids I know on the high-functioning end of the spectrum either evaded diagnosis until much later or started in the diagnostic pre-k and kindergarten and were moved to some kind of inclusion or regular classroom with pull-out services. I do know one child who was diagnosed with DD and possible MR whose diagnosis did change once he was in elementary school (but, again, he did diagnostic kindergarten and then was mainstreamed with support.)

This is what it seems like they are doing to me! she kept telling me well his diagnosis may change when he gets older and she even said " well pdd is kind of a catch all, when they don't know what to diagnose them" but the way she said it gave me the impression that she thought the diagnosis was just crap... I am just starting to deal with the school now that he is diagnosed and i can see it is going to be a fight, but then again it kinda always has with this pre-school on top of having to fight to get more class time this last yr for him , i have been fighting for speech therapy for the last 1 1/2 yrs,having him reevaluated over and over again, just to be denied over and over again.....we live in a rural county and ever since he was diagnosed people have told me i was going to have a hard time cause our school district offers no help with out constant pushing and threats.....even his phycologist 3 hrs away had this opinion of our district and county and told us from the get go to seek the help of those educational advocates....So i think this may be our best bet...or contacting the ed. state board.




They say he is calm and cool at school playing as normal not over the top. But when he gets home it is like a explosion hits my house he just immediately walk in the door takes off his jacket/ backpack and then boom.... running around ,jumping, hitting the dog, jumping on him, grabbing toys, yelling, loud noises....almost like he was holding it all in just waiting to let it out......and in the last few weeks this behavior has escalated. And like i said before he has gone to this same school since he turned 3 and kinda knows what is to be expected from him and the routine that they have cause it never changes.

So should i go ahead and fill out the gars and turn it in and see if they will change it based off of that, my worry is doing it and it coming back as "not" and then them using that when i try to fight them over it..........
Should i just try to get a advocate involved from the get go before i fill anything out, if i can find one.
Should i go straight to the district instead with my concerns .
What do you think my next step should be?

IMO, do this - see if you can find someone familiar with your particular school district (basically, any local autism service provider should be able to direct you.) for this reason: it is so difficult to tell when the school is jerking you around and when you are just being paranoid. An advocate who's actually helped someone who has been jerked around will be able to piece it out for you: this part is normal, this part is outrageous, this part may be a battle to fight later on, etc.

When we first brought an advocate, we tried to talk about how hard home life was and got the same runaround - and the advocate broke in with "yes, he can hold it in at school but that comes at a terrible price for him. It isn't in his best interest to push him so hard that he falls apart, no matter where the falling apart occurs." That was all it took to get them to start taking us seriously (even though we had been saying a version of that for some time, ourselves.)

So...where to look for an advocate - Autism Speaks has local listings of autism service agencies. Sometimes just googling "Special Education Advocate" and your local area will bring something up. Expect to pay the hourly rate you'd pay for therapy, plus travel time (sometimes your insurance will cover it as part of therapy, so look through your insurance company's provider list, too.)

sadly enough, the bottom line is the budget. That year my son got diagnosed I did bring an advocate too, casue the 1st meeting that chairperson was dead set against the autims classification, even though my sons report said it was medically indicated. I tabled the meeting, came back with an advocate, and it was still a no go. I know many people in the same boat. They have a PDD or Aspergers diagnosis and the dstrict refuses to put that classification on the IEP. The FEW I know with the Autism classificiation have kids with severe defecits. Non verbal or minimally verbal, agression, out of district placements, etc...

When they give the Autism classification where I am, it guarantees a parent trainer, autism consultant and max amount of speech therapy, along with everyting else the child gets.

We could SOOO use a parent trainer and autism consultant, but they dont care. The chairperson doesnt know my son from a hole in the wall, reads a report and tells me whats in my sons best interest?? He tried hard to play on the "AUTISM" stigma, it was despicable, to be honest. He even said he COULD give the classification, but why would I want people to read on his reports that he has AUTISM???

UGH....it infuriates me to this day!! !

Just keep fighting. I hope that you get the best services you can for your son.

Keep in mind that the "budget defense" is not an excuse - and districts that don't provide a "Free and Appropriate Education" are breaking the law: FAPE is a civil rights issue and is protected by law.

Districts may tear their hair over the budget, but the reality is that they have other areas to cut and they can always raise taxes to cover unforseen SPED costs under what's called a "special exception."

If you run into this sort of a situation, that's when you hire a lawyer (exhaust the other possibilities first, because lawyers don't come cheap.) Somebody needs to hold schools accountable - and that somebody is us.

Well first i want to thank everyone for the advice.........I really appreciate it. since I am kinda new to this i have no clue what to do/say.... Unfortunately we are in a rural area and i don't think there is a advocate near us. so i will have to check in salt lake which is a long drive, so if they charge hourly i might not be able to, i can see that getting expensive, but it is something i will definitely check into. i am also going to call the state board of education on monday too and see what they say. I'm am pretty sure our insurance will not cover it. But at least it is a start, and maybe one of them can give me some bargaining chips to play with... thanks everyone
I'll let you all know what comes about from all this!

I would also recommend getting the book From Emotions to Advocacy, and have a good browse through wrightslaw.com. You might consider attending a Wrightslaw conference to educate yourself if you're not able to find an advoate who works in your area.