IEP Questions

[brink]

My 9 year old son has mild TS. While he has the ticks and some vocal noises, they're intermittent (wax/wane). He also has OCD, not severe, but it's there. The two main issues with his TS is the rage/anger and stubborn/defiance. We didn't even know that the stubborn/defiance/obstinance was a part of TS until he went to a TS camp.

 

We tried homeschooling this year and although I would like to do it again, they're just not happy here. I'm sure this is because they've already been exposed to school. We've decided to send them back. It was recommended that I get an IEP for him. We also have some health issues with 3 of their grandparents, 2 of whom are in final stages of cancer and emphasyma, so sending them back is probably better anyway.

 

I guess my question is, at what point do you decide if you need an IEP? He can mainstream just fine, although he's very slow in math. Good at it, but slow. He'll be behind in math before he even starts because we took that slower here at home. He doesn't want to be treated "differently" or "special", but I think it would be better to have some of it in writing.

 

Also, what should I expect or put into an IEP?

 

Thanks!

[CSP]

Brink,

 

Do you have a parent resource center in your area? If you do they will help out a lot with any questions you may have. I would say don't let the school system tell you he does not qualify for an IEP, even if his grades are great now. TS changes over the years and the tics change, so lets say he does not have an eye blinking tic now but in a year or so he might have an eye squeezing tic. That could cause him to lose time on tests because of the need to squeeze his eyes. Or miss something in a film or slide during instruction. It is vital that they understand TS changes and what they see in your son may not be the case next month/year. You could also get him the 504 plan.

 

Good luck,

CP

[michele]

I am dealing with the same concerns. It is a shame we can not relax and enjoy our summer because of the worry about the upcoming school year. I worked all last year with the school and Dr.'s. In the fall(SEPT) I asked for an OT and speech evaluation based on Dr. Murphy's letter from my visit with her. It took them until Dec. to have the meeting to have me sign the consent for the evauation. Then in March they had the follow up where they said he qualified for once a week OT. (At that time they had me resign and date papers allowing the evaluation (probably because they were over the allowed time) At first they said OT could not stand alone as a service. So they put him on the IDEA under other health impaired. By that time(March) I was having concerns about his attention and his school work suffering. So I asked the school to do a full school evaluation based on another letter from Dr. Murphy requesting the testing and a diagnosis of tourettes from his neurologist. Well they finally had the meeting in April to discuss the further testing. They then agreed to test him the first week school was out at the special ed office. When I arrived they told me they would test ability only for now and the rest later in the fall. They have put him off every chance they got. Now he is going to a new building in the district for first grade and the teacher has no aide like they did in kindergarten. He has no accomodations in writing at this timejust OT once a week. I don't think they understand the tourettes diagnosis. Like you said if they are not failing now they don't want to help them. I am interested in this parent resource center you mention. How do you get this system to work for tourettes kids without coming off as the bad guy? It is hard enough to go through this with your kid then have these kind of road blocks is just not fair! I have been paying for the OT all school year private and this summer and have him in an OT camp. Why is the school not wanting to help out here? How bad do the kids have to be to get accomodations? Have others here had simialr experiences with the school districts special ed and school psychologists?

Michele

 

Michele

Brink,

 

Do you have a parent resource center in your area? If you do they will help out a lot with any questions you may have. I would say don't let the school system tell you he does not qualify for an IEP, even if his grades are great now. TS changes over the years and the tics change, so lets say he does not have an eye blinking tic now but in a year or so he might have an eye squeezing tic. That could cause him to lose time on tests because of the need to squeeze his eyes. Or miss something in a film or slide during instruction. It is vital that they understand TS changes and what they see in your son may not be the case next month/year. You could also get him the 504 plan.

 

Good luck,

CP

[Chemar]

an IEP is best when learning disability or any form of direct educational accomodations are needed

 

a plan-504 is best to allow for accomodations directly related to tics, TS, OCD and other health related issues that the student finds impairs their ability to function at school

 

Tourette Syndrome is now fully and BY LAW classified a disability in education and as such is covered by the Americans with Disability Act under IDEA. For educational institutes the definition is "Other Health Impaired"

 

if a school is delaying implementing either an IEP or 504 for someone with TS they are breaking the law!!

 

here is some info from the TSA on this

http://www.tsa-usa.org/educ_advoc/education_main.htm

 

http://www.tsa-usa.org/educ_advoc/section_504.htm

 

http://www.tsa-usa.org/educ_advoc/educ_ed_strat_main.htm

 

http://www.tsa-usa.org/educ_advoc/educatio...ocacy_main.html

 

there is a lot more on the website related to helping kids at school etc

 

Also, phoning the TSA and asking specific questions always has brought helpful answers for me :

[CSP]

Hi Michele,

 

In my county it is called LARC, and they sent me all the info I needed of all the lastest disabilities. The parent resource in my county will provide an advocate if you feel you need one. Try googling parent resource for special education and student services in your county and see what come up.

 

Good luck,

CP

[lurker]

Michelle,

 

My friend's son has a disability and an IEP. The system did not work well at all for them in the beginning. She became very proactive (filing state non-compliance complaints and taking an attorney to IEPs). She found, and feels very strongly, that it is not a matter of "How bad do the kids have to be?" but rather how assertive are their parents. She says she sees many instances of very needy kids receiving very little help and barely needy kids receiving excessive services.

 

I absolutely understand your desire to not disturb the peace, but it can be done in a way that does not personally attack anyone. Blame the system; not any individual. If you file a higher level complaint, they will probably contact you regarding an evaluation schedule.

 

You have given them all year to evaluate your son and implement services. They said he qualified for OT, but am I correct in assuming they did not provide it? If so, I would ask for reimbursement as well or, at least, services for the hours that should have been provided. Sadly, this should cause them to take you seriously and postpone evaluations and services for someone else's kid.

[Chemar]

I sooooo agree about needing to be pro-active when the school is not in compliance!! We had a really good response from ours, but even so, I needed to stay on top of things and insisted on quarterly meetings with all teachers etc to ensure that everyone was doing what needed to be done!

 

some school districts are notoriously bad with this and so you really cant rely on them to do the right thing....you have to take the reigns. TSA can also connect one to student advocates who will accompany you to the school to make sure the needed accomodations are granted

[michele]

In March they finally determined him eligible for the OT at school. With spring break and other Thurs. off he got the OT about seven times. I am glad I started it in Sept. and took him every week without missing.

 

I have now contacted the head of special ed and the new principal about the testing we have been waiting on. Shockingly, the principal said I am sure there will be many other kids who come iinto first grade with handwrting difficulties and leave with them also. Another shocker, many kids will have issues like your son and not have seen as many Dr.'s or have as many diagnosis as he has. That good teachers should be able to see the issues early on and know how to accomodate them. They take the tourettes diagnosis so lightly! She even said I thought you wanted to keep this quiet and possibly not tell the teacher! I said yes I don't think the whole school or parents need to know but the teacher has to be aware to be able to meet his needs. This is exactly why the accomodations should be in writing. She said from what I told her she would not be able to tell my son has the disorder. How frustrating. What I meant is he looks like any other kid on the surface but he definately has his issues. I have not contacted the superintendent but that will be next if we don't get testing before school starts.

 

I have contacted TSA advocates for education. I will see if they get involved in the process. In the mean time I will contact our local county CIRC office. I didn't know they had parent advocates there also. Thanks for the advice. I don't know exactly what accomodations he will need at this point either. I just know he needs alot of one on one support to get things done. Until they get the testing done I don't know if it is a learning disibilty or not. Even without a LD won't he still qualify for some accomodations? Who determines what those should be?

 

Michele

Michelle,

 

My friend's son has a disability and an IEP. The system did not work well at all for them in the beginning. She became very proactive (filing state non-compliance complaints and taking an attorney to IEPs). She found, and feels very strongly, that it is not a matter of "How bad do the kids have to be?" but rather how assertive are their parents. She says she sees many instances of very needy kids receiving very little help and barely needy kids receiving excessive services.

 

I absolutely understand your desire to not disturb the peace, but it can be done in a way that does not personally attack anyone. Blame the system; not any individual. If you file a higher level complaint, they will probably contact you regarding an evaluation schedule.

 

You have given them all year to evaluate your son and implement services. They said he qualified for OT, but am I correct in assuming they did not provide it? If so, I would ask for reimbursement as well or, at least, services for the hours that should have been provided. Sadly, this should cause them to take you seriously and postpone evaluations and services for someone else's kid.

[brink]

Thank you. The more I looked at IEP info, it didn't seem quite right for him. I'm probably going to go with the 504.

[brink]

One thing...I may be overlooking this or just missing it, but how does one go about initiating a 504? Do I just tell the school when I call to find out about registering?

[CSP]

Brink,

 

I don't know if all schools are the same but we had to go through the IEP first, then get the "not qualify for the IEP" to open up for the 504 plan. Kind of like your kid has to be to smart for the IEP, then they will look into the 504.

 

Check with your district it my not be the same in your area.

CP

[peglem]

Kind of like your kid has to be to smart for the IEP, then they will look into the 504.

 

CP

 

I just have to respond to this. There are plenty of "smart" kids who have IEPs. Learning disabilities do not equal low IQ. I get your point, that the child has to be disqualified for an IEP in order to get a 504 plan, but I object to the characterization that kids with IEPs are not smart.

[Chemar]

yes. having an IEP is *not* indicative of whether a child is "smart" or not

 

my son has a very high IQ and took all AP and Hons classes, and was far advanced in many areas compared with his peers, but he does have learning disabilities associated with his Attention deficit Disorder and Central Auditory Processing, anmd needed the IEP for elementary and part of middle school

later, when we switched to a 504 plan, the learning disabilities were incorporated into it. again, having the 504 was an *accomodation* not an indication of his abilities, academic or otherwise. It was to accomodate his illness and disorders within the framework of what was required at school.

 

smartness has absolutely nothing to do with an IEP and also has nothing to do with a 504.

(tho I sure do know that isn't what you meant CP)

[lurker]

I feel the need to respond too. I think that its unfair to take that comment out of context and dissect it. It does not stand well on its own, but if you put it back into its immediate context, it seems to be a reiteration of the school's position not her own. If you put it back into its larger context, it came from someone who is consistently generous and helpful and has given quite a bit of her time this weekend helping others.

[brink]

Yes, I understand the IEP/smart thing.

 

Actually, I went on the TSA website via the links above and I sure wish I had found this before today. I am just finding out about so much with the TS. Our son definitely has the rage issue associated with TS. It wasn't until he went to a TS camp a few weeks ago that we found out about the stubborn/obstinance/defiance part of it.

 

As I was reading the info on the TSA site, I was actually saddened. Looking back, my son could have been diagnosed so many years ago. He's had rage issues since he was 2. He's had the writing issue since he could hold a pencil. His teacher in 2nd grade started checking his agenda for correct assignments. Kind of the hindsight is 20/20 thing. You get the feeling "if I had only known". What makes me more sad than anything else, is why didn't anyone (meaning the doctors) TELL me this was all part of it. They gave the "yep, it's TS, good luck with life" type sign off. It just upsets me now because so much of what is on the TS site fits and explains my son so well that I feel like I understand him better. Still don't know the best way to deal with some of it, but at least I understand how much of his behavior is TS and what's not.

 

It also basically showed me that the choices I made with the way I homeschooled him were the right choices. We held off on cursive because he just had so much trouble with printing. That's finally gotten better. We took math so much slower this year because he has a much slower processing speed particularly in math. We focused on add/subtraction but then realized he understood multiplication better so we moved over to that and explained addition back from that. and he was much better. I would like to keep him home and do it here, but his sister is going back and he absolutely insists he will not cooperate with me if I keep him home alone with me.

 

We're having a really tough week. He's back in a waxing phase and he seems so desperate. He's back to picking his scabs (he also is OCD), constant motion, almost in a manic state and he's whistling and has the eyebrow tic again. It's hitting hard and fast this time. Just when you think you have a handle on it, it changes.

 

Thanks for the links!