Hi ~ Sorry you werent able to make the meeting.

We had a great guest speaker that spoke about the differences in 504s & IEPs. Her name is Aimee, and she is a special education teacher at Kaylies school. She helped revise Kaylies IEP before she had surgery this past summer. Kaylie had an IEP for speech, but now since the diagnoses of Chiari a lot more has been added to it. To help explain things to the group, I let her talk about Kaylies IEP, which I will also talk about some in this email. The basics come down to 504 is very broad, where an IEP, gets down to details. She said in her personal opinion, and after reading all the material I gave her about Chiari back in March, and doing her own research she felt that an IEP is best for Chiari patients, especially since each patient is so different, with different symptoms. For examples: In Kaylies IEP: She use to skim walls, sometimes fall (clumsiness), so in her IEP, she has that an assistant to watch over her occasionally. Now, in her class is another child that needs an assistant all the times, so she just keeps an eye on Kaylie, too.

When Kaylie was diagnosed with Chiari, her regular IEP category went from Speech Impairment to Other Health Impairment this is very important to have Other Health Impairment in your IEP. Below are items in Kaylies IEP (which these are specific that I asked or, or they suggested for Kaylie each childs may be different to more needed needs or less) PE (currently Kaylie is still not in PE, she takes an extra music class, I think I will have her start back to PE next year, but this is whats in her IEP for that): Kaylie will need to be monitored closely to be sure that she does not over heat. (This was in here, due to at the time she was on Topamax Topamax you can over heat very easily, and your sweat glands dont produce to cool you off I also believe there is a set temperature to watch out for, if your outside a lot I cant remember off the top of my head, I had talked to the makers of Topamax about all thisBut it is a good idea to check your medications, because Topamax is not the only drug that does this) Also her IEP says: an activity that could cause her head to be injured in any way will need to be closely monitored. No Contact Sports. This was in there just for the Topamax: Kaylie will need an alternative place to go for recess when the temperature is above 80 degrees. She will need to be allowed to go inside if she feels hot when on Topamax.

IEP Program/Class Modification: Extra time for complement of assignments up to one extra day, shortened assignments, access to the resource room. Other services will be determined after Kaylies surgery. (so access to the resource room is she can go to the special education teachers room anytime if needed. The other services will be determined after Kaylies surgery this was placed in there so that when she came back to school if she needed physical therapy or OT, they could provide that to her at the school at no cost to me. ) At our meeting Aimee said that it is important to have that in there, just because you dont know how one is going to come back out of a brain surgery. And as you all know, you probably know of some patients that have had OT or PT after surgery, Kaylie didnt need it, so it will probably be removed at our yearly IEP meeting. The speech part of her IEP is: Kaylie presents with a Moderate Phonological Processing Disorder that requires direct intervention by a licensed SpeechLanguage Pathologist. Kaylie receives 40 minutes a week of speech therapy. Then for testing she has: extended time limits reduce quantity for quality on tests peer tutoring and/or group work resource room available for assistance reduce the length of the exam Assignments: extended time limits reduce quantity for quality peer tutoring/group work resource room available limited amount of homework Allowing parent to sign off homework after student has spent specified time on assignment (meaning if she has spent 30 minutes on one assignment I can say she is done) Break assignments into a series of smaller assignments Also missing school is not counted against her academics with an IEP.

When they asked about Kaylies symptoms when she was first diagnosed, this is what they were told: regression in toilet training due to medication (that is when she was on Topamax), headaches, ear pain, tendinitis, light & noise sensitive, clumsy, memory loss, emotional. Her at the time teacher had also noticed the abnormal emotional side of Kaylie, which she had stated in the IEP, before I even told them.

So that is Kaylies IEP if you have any questions, please dont hesitate to ask. Some important pointers that Aimee talked about are that, if your child has an IEP or 504, you should be having a yearly meeting. As a parent you have the right to call a meeting ANYTIME, can be monthly if needed. Also, the special education teacher should be handling your IEP or 504. Not a teacher, or just a school councilor. Also if you notice that the IEP or 504 is not be followed by the teacher, or several teachers you need to speak to the special education teacher its their job, to make sure the teachers, are following the plan. If that doesnt work, each school district has a Director of Special Services, you need to talk to them and if that doesnt work you need to contact Your States Department of Education. Something that Aimee said to us, that I feel I always stress to other patients and families is that you are your childs BIGGEST advocate. The same way we have to talk to doctors, to make sure they understand and listen to us, you have to teach your school and teachers what is going on with your child. You dont have to go in being demanding or anything else, give them the chance to listen first. When Kaylie was first diagnosed, I gathered all the information I could on Chiari/Syringo, gave it to each person that was at the IEP meeting, then this year when we met her teacher for the first time, I asked to have a private 15 minute conversation with her, gave her the same information, and told her about Kaylie. And I will do this with every teacher. The more information you can give them, the better they can understand it all, and get the help your child needs.