I feel so lost right now! We got an official diagnosis from DS4's psychiatrist with PDD-NOS ... it's in a form of a letter and recommends special ed preschool for him ... but now the school district is asking for reports or they will still have to put him through full testing through the special ed department before they determine if he's eligible for the preschool or not. So, it's like we went through the trips to the psych's office for nothing? She could probably forward some of the testing she did but it was very basic. Most of the diagnosis was based on the OT's assessment, our reports and a play session with my son. We will have further testing in the future through Developmental specialist but that's a matter of a waiting list couple months from now. I was under the impression that having a diagnosis would help and we wouldn't have to be jumping through all these hoops and loops??? Do I have to learn to do headstands to make them happy? ... and there I was, thinking we're finally getting somewhere!

No, it wasn't for nothing. It was a key step. The school folks are legally *required* to do their own assessment process before they identify or re-identify a child for special ed-- this is an educational (not medical, not psychological) evaluation. They can take private testing into account so that they are not starting from scratch-- for that you do have to give them the written report.

You didn't go the psych's office for nothing. That expert opinion (hopefully) gives you confidence that the diagnosis is accurate; the school people aren't qualified to diagnose anything, only to determine educational needs. The psych's assessment should form the basis for what the school system will do; ideally the private report will include recommendations for the educational setting, and those should be adopted by the school. It gives you much better information and leverage to have a private diagnosis from outside.

Without the private psych's guidance, things can more easily be overlooked or misread in the school's assessment-- but with it, you stand a much better chance of getting what your kid really needs.

You might get the book From Emotions to Advocacy, which is very helpful in spelling out the process. I also recommend the OASIS parent forum at aspergersyndrome.org-- that's where I did most of my learning about how to get through the maze.

DeeDee

Thank you, DeeDee! what would I do without you! You're one of the few people who help me stay sane these days! lol

I guess what I don't understand is ... the special ed director knew since MAY we were searching for a diagnosis and hoping to get him into the preschool to help him with all the social problems. They have know this long so why didn't they suggest the testing through the school system right away? He did have a district evaluation last year but he did just fine ... he always does great at a one-on-one type of setting unless he's on sensory overload when he just doesn't respond. I wish they would just put him in a room full of kids for 5 minutes and that's all the testing they need to do. That would tell them all they need to know! I'm just worried that this way he'll slip through the cracks just like he did last year! At which point I'm ready to give up and homeschool him in K and 1st while I'll still be at home with my younger one and then will see how he does as the years go by. I just wish they'd stop looking at him doing great academically and would finally look at the whole picture

I'll check out the book you recommended!

just to make sure for the future ... so doesn't matter that we have a medical diagnosis ... but if the school decides DS4 is doing well and doesn't need any help, they don't have to provide any services at all??? Or they can just modify his plan based on the egg allergy but can completely dismiss the PDD-NOS if it's not affecting him academically?

Welcome!


Could be several things.
--he already has an IEP for speech, right? Or am I remembering someone else's kid? Technically they could probably enroll him in the special ed school anytime on the basis of the old IEP, and then do the re-eval and rewrite the IEP while he's there.

--or they didn't do it because you didn't ask them to in the right way, which would be aggravating but it's just one of the ways that these things sometimes work. The book I recommended talks about the need to request things in writing, because nobody is even required to act on a verbal request. Some districts do wait until they have a formal request in hand.


You can request that the school's re-evaluation include observation in a group setting. You can also ask the psych to include recommendations in the report that address what your DS is likely to need in a group setting.


If you go to wrightslaw.com, and type "functional" into their search box, you will see that special ed law applies not only to academic skills but also functional skills, which include the things that people with autism tend to have a lot of trouble with-- participation, social skills, self-care, those kinds of things. Those skills can and should all be addressed by the school. Some schools do not know this, which is why we've had to bring our advocate and an autism specialist to our school meetings. But it can be done, and IMO it's worth doing.

Hang in there. It's a process.

DeeDee

yes, you're right ... he does have IEP for speech ... that's why I don't get this whole run around I'm getting. When we had the IEP meeting in May, they said they'd reevaluate based on the psych's recommendations and based on how he'd do in Speech. The ST says both weeks (they started last week) he's been pretty disruptive, either will talk constantly or will lay down on the floor and play by himself so the ST herself agrees that he needs more ... yet the director still wants full testing? We're a small school district. Plus every time I dealt with the Special ed director, I asked what we need to do to see if he qualifies for the pre-school. ... It's like they don't want him in there so I don't cause any trouble! I guess I'm one of those parents who knows and talks too much? I don't know ...

and I'm going to be going through this exact same thing again next year with my younger one. Just can't wait!

I wouldn't assume yet that they are being obstructive. To change the diagnosis in the IEP, AFAIK they are supposed to re-evaluate.

It's fine to ask the spec ed director when they can get him into the preschool, and how to move the process along. Often they will start kids midyear.

They are likely to do much less testing if they have the private psych report in hand; that's on your side in moving it along.

DeeDee

I know. I'm not saying they are obstructive ... I'm just tired of it all. All I've been asking the school to do the last 12 months is to help my son in a way that would be actually useful. I try to be as polite as possible asking THEM for advice and guidance rather than telling them what I'd like to see done. I did leave a message asking the psychiatrist to see if we could get more specific reports in addition to the letter with diagnosis and recommendation she sent (she was actually very specific in terms of what he needs) ... it was a 2.5 page letter summarizing the issues over the years, his current condition and the recommendations. So I am surprised the school doesn't give it more weight at this point. I asked specifically in May if we would need or should do a new evaluation and they said it should not be necessary and they would go by how he does in the small group speech therapy ... and now it's a completely different thing. That's why I feel so lost and confused. I went with the plan but they seem to have deviated from it.

I will ask if they could do an observation in a group environment.

Tired-- I do understand tired. This stuff is so wearing. But you are getting somewhere; IMO best not to give up.

They probably want results from any standardized tests the psych did, in addition to the letter. It is good to put data in the IEP as well as qualitative assessments.

I would definitely get that spec ed director on the phone and find out their plan for your DS-- it is okay to ask!

DeeDee

I am doing everything by email to have it all in writing so we are communicating.

I might end up what DS4's OT recommended as a worst case scenario ...put him in a regular preschool (one of those 3 times a week for 2 hours) where he'll most likely get thrown out for disrupting and not following rules and simply being too much to handle ... and then go back to the school district explaining that he can't function in a normal preschool setting. ... she said she has clients who had to go that route to get somewhere with the school district! lol

I hope it doesn't come to that-- you don't want him hating school or feeling rejected, or learning to act out more because they don't know what to do for him.

DeeDee

My biggest goal for our boys is for them to be happy. Whatever that means in terms of school, I don't know. But for now he really REALLY wants to go to school and be with other kids. As much as he doesn't know how to play with them and be with them, he really wants to be in their company and that's what I am trying to give him while he's so eager to go.

i refused to take my son to the preschool the school district picked for him. i demanded and received NPA speech therapist--- best thing i EVER did!
for social, i made sure he was around NTs as often as possible, even joined a playgroup where i realized the moms were really a bunch of snobs--- but they had sweet kids who most importantly were NT, and i stayed with it for over a year! once he a week he ws with these kids, he went to so many birthday parties and holiday celebrations- it was all good and was the most amazing therapy and free of charge!
and for myself, i learned to navigate around and thru the snobbier moms and discovered that one on one, the ladies were actually very nice! i guess it was just mob mentality, that's when the snobbery seemed to happen LOL

i think though if you want/need these services for your son, yes you must jump thru their hoops. the thing is, they don't really WANT to have to provide services b/c of the money. at least that's how it is here, if a parent doesn't know of the service- even though child could benefit? or if the parent is asking about a service for child- but parent again doesn't actually KNOW if it is available? here- the school district doesn't offer the service or any information re the service.

just keep advocating. keep being the squeaky wheel.
though for me, i found endearing myself to them seemed to work better. or rather- endearing my son to them,and how well he was doing and how everyone was so awesome at helping him and were such an amazing help and part of our team. yada yada yada

((it was sometimes very true, other times? not so much! but it helped serve up results and them wanting to help...

you're right ... I'm sure it is about money! ... we're in IL and pay ridiculous money in property tax. Our house is worth maybe $180 000 and we pay $8400/year in property tax and out of that about $5500 goes to the school district. If they can't provide me with the services I need, why not give me the money back and I'll make sure our kids get what they need??? ugh!

one of the reasons why I'd like to see DS4 in pre-school is it would give me time to work one-on-one with DS2 who needs it.

I do have a great option for socializing at the moment. There is a local kids play house / cafe that is set up sort of like a Children's Museum with different play areas and a small gym and the staff supervises the kids while parents can stay in a cafe behind a glass wall and relax, work ... or can be inside with the kids. We have a monthly membership so can drop in anytime. I figured out the days / times when there aren't as many kids so it's not as overwhelming for my boys so if all else fails with school, this is the perfect place to be. I just wish I could have him in something more structured. But we all love this place and the staff is great with the boys and they don't judge them based on some of their quirky behavior ... they just see two sweet little boys .

here's another update! Found out for DS4's speech therapist that the special ed director changed her mind AGAIN and decided against further testing ... they finally realized that one on one testing will not prove a thing with our son. He'd once again slip through the cracks like he has a few times to this point. So, since there's such a gap between how he tests / acts during testing and when he's in normal social / school situations, the special ed director said since we already have an IEP in place, they'll adjust it and put him in pre-school after all! we should got take a look at the class he'd be in on Tuesday. Hopefully everything goes well, he / we like it and we can call this our FIRST VICTORY in what I'm sure will be a large number of battles in the future! lol

In the meanwhile, we've jumped on the GFCF diet (gluten free / casein free) ... I'm not expecting any miracles, but since both sons have food allergies and sensitivities already, I thought, WHY NOT? ... after first 6 days on the diet, no significant changes in DS4, other than he seems to be able to focus a little better! YAY for that! ... DS2.5 on the other hand (who was a huge dairy addict) has in just 6 days gone from not communicating to asking for help and even repeating sentences ... AND I just now realized that after he surprised us with being able to read a lot of words without anyone teaching him (started 2 weeks ago) ... he's now trying to actually really READ text! I've seen him take books, follow with his finger word after word and trying to read them all out loud! When I heard him read "... play in the sun", I was floored! It's not something he'd ever say! He only speaks in words! I'm pretty sure his speech therapist will be panicking when she hears this on Monday! She might lose her job with us soon! lol

Anyways ... that was a little side note regarding the GFCF diet ... just thought I'd throw it in with the good news about pre-school. Now, the question is if the school is a good news or if I'll be regretting it in two weeks!

Sounds like real progress, Mk13. Kudos to you for hanging in there through the messiness of the process...

DeeDee