best way to get diagnosed? school or private?

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You could try getting in contact with the autism society of illinois --

http://www.autismillinois.org/

They might be able to direct you.

Kris

Well this is my experience with private and school evals.

My son is 11 and in 6th grade. I suspected he had Dysgraphia in 2nd grade age 7. AT the time I didn't know anything about Autism. My son slips by because he loves the structure of the school system and is very rule orientated. His behavior is above average in school, but then he internalizes all this stuff and brings it home to me with rages.

They tested him in 2nd grade for Dysgraphia and found nothing. I was really confused, as I knew he had problems with written expression. He did get an IEP, but for Speech, because of Articulation. But I let the other stuff go as I thought maybe next yr he will have a better teacher.

3rd grade was horrible with rages at home and problems with written expressioin. I took him to a private eval and my insurance co denied him right when we were about to start testing. At the time I couldn't afford the testing, so I let it go.

So I talked to the PTA about choosing the 4th grade teacher and his un-dx ld's and they gave a great suggestion who my son got. She was great!! ! She worked really hard with him and even tho he still made 1's and 2's in written expression, he was happier.

Then came 5th grade. The teacher from hell!! ! I knew by then I had to go get the private eval as the school denied another eval from his test scores from 2nd grade. I got the private eval from the same doc from 3rd grade, but it cost me 2800 dollars. At this time I had been on an online Dysgraphia board and someone mentioned Aspergers syndrome. I thought wow whats that? I googled it and my jaw dropped.

Okay so that was part of the 2800 dollars, the autism rating. The doc found the dysgraphia and some processing issues but said he only had Autistic Traits and a mood disorder, but not autism.

I took him to a pysciatrist for the mood disorder and he dx-d him with ASD.

I took both dx-s to the school and they did there own testing and said he had no LD's, Ot problems (even though he does have sid problems and I had to march my son down to spec ed to show them my son's reactions to a certain noise that sends him to his knees), he also has a dysfluency problem in his speech, but their speech therapists don;t find anything.

So then over the summer I take him to the Regional Center, a state run organization that determines kids who have developmental problems and their doc dx-d him with Autistic Disorder, with a slew of some other dx-s including Learning Disorder NOS.

I gave it to the school, but they still won't accept it and give him an IEP.

So, If I were you I would start with the school, because it's free. But I tell ya, if they try to screw you like they did me, then you go out and use your credit card and get that private eval, and fight like hell. I am at a point to where I am ready to hire a lawyer and ask for due process. the only thing that might help me is the school agreed for a third party to do more testing. It's free and they are state run. So they are not on my side, and they are not on the school's side. They are on the side of my child and if it still doesn't go well, then I can still ask for an IEP.

I wish you luck

Lainie

I guess I just naively thought that the school really wants to help your child if they need help...I didn't realize it was kind of like insurance, where they are supposed to try to find a way to NOT help you. I can't afford the private eval...I would literally have to take some extra time to save up the money and that is really awful because I feel like I have put this off long enough...like I said, I was waiting to get into pre K until potty training happened, not realizing that the AS is part of the reason he doesn't care about that---so I just want to get him into school and getting some help as soon as I can and I didn't realize all the roadblocks there would be.

Lainie, I am so sorry to hear that they are denying your little boy the help that so many others obviously think that he needs. I hope I don't find the same attitude here from my school district.

Kate

Kate Sweetie, Don't feel down, because you know I have read about many other school districts that DO want to help. Mine is just a bunch of idiots who don't know anything about Autism and it's my job to teach them and fight for my child, and never give up.

So you know you might get some great help from them.

I know (I'm in central cali) that if we were in the bay area, then we would get services like that! (snap lol)

But, if they don't, then you know to push for your childs rights. Look up Wrightslaw.com and read about the law and how the school system HAS to help you, so you can learn now what they legally can do and can't.

Good luck sweetie, and remember, you are your only childs advocate

Lainie

thanks for th tip on that website...there is some great info about evaluations, etc.... I am trying to keep my chin up, I just think this is a really small school district and I have a feeling from the few people I have talked to so far, that they may not deal with AS enough to realize that we need some help. Also I worry that if they do think he needs help, that the school is so small they might lump all the "autistic" kids together, and I can't imagine that being anything but a regression for James. I see how his behaviour regresses around his 2 year old cousin now. Hopefully I can get a call back from them tomorrow and get the ball rolling on this evaluation process. Maybe they will be understanding and wonderful and I am freaking out over nothing.

thanks for the potty training tip....I feel like we have tried every "trick" (all types of rewards from candy to stickers to games, special underwear, going cold turkey into underwear) maybe just being concrete about it is something new to try. I would try almost anything at this point

Kate

Also I worry that if they do think he needs help, that the school is so small they might lump all the "autistic" kids together, and I can't imagine that being anything but a regression for James. I see how his behaviour regresses around his 2 year old cousin now.

Kate, see that right there is against the law. They have to give your child "A least restrictive environment" meaning he has to be mainstreamed with other NT kids so he can learn and grow.

Your child has a right to have a Free Appropriate Education (FAPE) and thats the law. They have to give him an IEP based on his individual needs. I really hope you go read the Wrightslaw website that I mentioned. I have learned lots from them and still need to learn about more.

Lainie

I have 2 comments about potty training:

1. My husband, who had very low muscle tone when he was a child, had a very, very hard time potty training and had accidents throughout elementary school. Of course, he had no OT back then, which I think would've helped him tremendously.

2. I took a potty training class, and they said to just leave a potty where your child can access it. They said kids know what the potty is about; it's just a matter of time when they start to feel like they are ready to use it. We didn't make a big deal out of it. They said that sometimes if they are pushed, they can resist. We got a couple of potty picture books just to be sure that N knew what it was all about. The one by Dr Sears was good.

Much to our surprise, he decided at 3 1/2 that he was ready to give up diapers on his own. He pretty much went cold turkey, even at night. He had a bunch of accidents at first, but he got it pretty fast. It was not a struggle at all, just like the teacher of the class had said. I was really glad that he did it. I was worried because of the problems my husband had had when he was a child, but low tone and all, he was able to do it.

I will read more on that website about the legality issues, but I am trying not to get too defensive until I find out I need to be.....just trying to be prepared for any result at this point and it seems like that is going to be a waiting game....

I think James has ull physical capacity---he can hold it and knows when he needs to go...in fact if he is on the potty and asks for a diaper, it is b/c he has to go, but if you try to wait him out by leaving him on the potty he will hold it we just can't seem to find the thing that will make him want to do it himself.

Kate

Lainie, your experience in California is the EXACT reason why we left the Sacramento area. We moved there from Pennsylvania, and had a very similar experience to yours. It was a year of complete hell, and we moved back to Pennsylvania where we got the services that we had been fighting for a year about in California.

What is it with some districts in California? We always felt like the school district was working HARD to avoid spending money -- they literally didn't care AT ALL about the child, even if you had all the proof of their needs documented and in your grubby little hands.

Kris

Hi Kris,
I know it's quite frustrating. But I do know in the bay area, it's soooo much better. I read where parents get their child Immediatly on IEP's after bringing in a priv eval, and I have to say I get so dang jeaulous lol. I mean even if his IEP was just for his Dysgraphia alone, at least he would be getting appropriate help, but the school did their own eval and the testing came out much more in their favor (of course!! ! LOL)

I talked to Chris's teacher the other day and she feels the accomodations that we have put in place for him now (what little they may be) is going to hurt him in the long run!! !

I was like what???? Allowing him to use the computer more and doing homework during study hall is going to hurt him??? UNBELIEVABLE. And believe me they just recently agreed to do these things because I keep on fighting them and calling IEP meetings, even though he doesn't have an IEP or a 504!! !

And is it supposed to be okay that my son has consistantly made 1's and 2's in written expression, and thats just the best he can do?

For them he isn't a beharior problem (but he internalizes it at school) and brings it all home with him. I have problems getting him to school too, and the reason why he won't go to school, is because he's not getting enough support there and they don't see this cycle. All they see is a child that won't go to school. And since it's something at home, then they won't touch it with a 10 foot pole, because of course, it's my issue, not the schools and thats not there job.

Sorry, had to vent. GRRRRR (but I do feel better LOL)

STILL no word from the school...I called last thurs morning, friday morning and left messages then the weekend went by....and like earlier posters said, I don't want to keep calling and appear to be the crazy parent, but this is the end time of another school day, and nothing. again. I am really trying to stay positive, but it is hard for me not to take this as an indicator of the level of cooperation I might expect in the future.

ugh

kate

Kate,
On that website I told you about there are sample letters you can print out and personalize with your own information asking for a formal eval. I would make your own copy and send it directly to the principle and make sure you send it certified with signature required.

They have to move then. And please, don't forget about the certified and SR because if you ever need this in the future it is the start of a paper trail that is important.

I'm not sure where you live, but after they receive this letter they have to respond by law within a certain amount of time.

Lainie

thank you so much for that information. I am going to try one last call tomorrow and then I may have to go the certified letter route. It just seems like since he isn't enrolled in school or daycare that nobody wants to take responsibility for him. I can't even get him tested at the public aid testing center wothout a referral and since he isn't in any program there is nowhere to rerer him from. I am feeling kind of stuck at the moment. thanks a lit for the advice and support... hopefully they will respond, but it is probably not a bad idea to start a paper trail anyway.

kate