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Discussion:
IEPs and school
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Has anyone else here had experience with IEPs for their children in school? Just wondering what advice you all have for accomodations, etc. We live in a small town and it seems as though our educators don't really know what to do with my 8-year-old with epilepsy. She is on many drugs, and needs lots of assistance, but I am learning the teachers don't always want to go that extra mile!
Posted on 09/25/07, 05:07 pm
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Reply #1 - 09/26/07  8:21am
" Hi!
My 12 yr started having szs last aug. She got worse in Jan to where we had to request an aid to be with her. Her aid helps her with her school work and is also there in case she has a sz. On her IEP they have put down that she has a learning disablity plus medicial problems due to E. She has extra time to do tests. Even though she is in 6th grade, she is on a 3rd grade level. She has spelling words that she can do, and the same with math. She is on pass/fail for social studies and science. The school is wonderful with her. They want her to learn and do what is best for her.
I am sure that your school distric would be able to help you. There is some information that I found on epilepsyfoundation.com
I hope this helps. "
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Reply #2 - 09/26/07  5:00pm
" My 10 yr old has an IEP with OHI...which means other health impairment for the elispey, ADHD and bowel issues...so he is a bundle of fun...but the school district he goes to is great so he has an aide in his classroom to help him..and our teachers' do go the extra mile with him. "
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Reply #3 - 09/26/07  7:00pm
" I AM 28 NOW BUT I ALSO NEEDED IN IEP WHEN I WAS IN SCHOOL AND THE SCHOOL SYSTEM BY ME WAS THE SAME WAS. YOUR CHILD HAS RIGHTS AND IF YOU THINK THAT THEY NEED SOMETHING TELL THE SCHOOL SYSTEM BECAUSE THEY KNOW.... BUT THEY DON'T WANT TO HAVE TO DO IT UNLESS YOU TELL THEM. I HAD A TOTAL OF 5 SURGERYS AND AFTER MY 2ND ONE I WAS IN 10TH GRADE AND MY NEUROLOGIST SAID THAT I NEEDED TO TAKE A 1HR NAP EVERYDAY, I THOUGHT IT WAS WEIRD BUT IT SURE DID HELP WITH MY SCHOOLING AND MY GRADES. ASK THE DOCTOR WHAT THEY THINK AND THEN GO IN THERE FULL FORCE WITH THE SCHOOL BOARD AND DON'T BACK DOWN. "
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Reply #4 - 09/27/07  2:20pm
" My daughter has been on an IEP for the last 12 years. She was diagnosed as autistic at the age of 3 so her IEP's addressed her needs as they related to autism. Last May she started having seizures and now has the additional diagnosis of epilepsy. We are in the process of changing her IEP to include the new medical piece. Additionally, I have 3 other children with disabilities that have also required IEP's.

The world Of Special Education is a complicated one, from my perspective. Parents MUST be informed about their rights under federal and state laws so you can insure that your child is receiving the appropriate services in a timely manner. In this day and age, most school districts, while being legally obligated to provide services, are short of funding and resources to actually provide all of the needed services. Classes are large, teachers are stressed and money is tight. If you as a parent do not know what your child is entitled to, then there is a very good chance that you will not receive all that your child needs. I have found that, as my children progressed into middle and high school, obtaining services became more difficult. At the elementaty school level it was much less complicated to develop, and receive, an appropriate IEP.

Please keep in mind that this is only my opinion from what I have experienced here in my area of California.It sounds from some of the other posts that other areas of the country are not so challenging as this one is!

I am not saying all of this to discourage you! I am sharing my experience to STRONGLY encourage you to become as well informed as possible so you are in the best position to advocate for your child.

Educate yourself! There is a ton of information on the web - one site I highly recommend is Wrightslaw. They have many, many articles, books and training CD's that are very helpful in learning all that SpEd needs parents need to know.

Another important thing to do is see if you can find a support group in your area for epilepsy or SpEd parents. Yellow Pages for Kids with Disabilities, Parents Helping Parents, your State Board of Education, your local CAC (Community Advisory Committee), your local Selpa (Special Education Local Area Plan), your County Department of Special Education all should have many links and resources to aide you on your search. I found it SO important to be involved in the local special ed groups. I truly do not have time for these meetings but the pay-off for attending in obtaining contacts and information makes it time very well spent.

Learn to persist in a calm but unstoppable manner! Many people will not want to go the extra mile - or even the 1st mile sometimes. Don't take it personally. Your job is to continue to assert until your child receives what she needs. Have a clear picture of what she needs and continue to press until you get it.

My daughter already has an aide in place as well as extended time for completing assignments and for taking tests. The neurologist has written a medical protocol for the school to follow in the event of a tonic-clonic seizure. I have contacted each of her teachers by letter outlining my daughter's strengths and challenges and I included the protocol - I am not taking any chances that they have not received it! I am pushing for a reduced homework load (she is in high school). I feel that she cannot be left unsupervised at any time and I will not allow her to participate in swimming. I am still working out more details for an IEP meeting next week and would be happy to share with you what we come up with. Just let me know.

Good luck and (((hugs))) to you! I firmly believe that we as parents know our children best and are the best advocates on their behalf!

Diana "
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Reply #5 - 09/27/07  3:05pm
" i am 14 have epilepsy and an IEP. my school system is awesome so i have come a long way. on my IEP i have unlimited time on tests and assignments, and i also have sensory issues. they have ESE support facilitators who can help us with an assignment or study with us. I was diagnosed at age 8 with epilepsy. some teachers are not used to having people like us in their classes so they are not sure what to do. it'll take some time but when the teacher(s) get to know your daughters strengths and weaknesses and hopefully will start to understand that as the year goes on. if you have any questions my email is always open! hope this helped "
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Reply #6 - 09/27/07  6:58pm
" I have epilepsy but I have not had to have an IEP, however my younger brother has autism and my parents are constantly fighting the battle against the school system that thinks they know all. DO NOT BACK DOWN! Under the Individuals with Disabilities Education Improvement Act your school district is required by law to provide your child with the proper education to meet his or her needs!!! The Special Ed world is a very complex one with lots of laws, but just know that the school is required to change their cirriculum to fit the needs of your child; your child should not have to change to fit with what the school thinks is the easiest way out. My best advice from being in many ARCs throughout the years and going through college to be a Special Ed teacher is this: be assertive but dont tick the district off (that gets you nowhere), and don't be afraid to be an advocate for your child! I hope your school system turns out to be a helpful one...good luck! "

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