My 10 year old daughter was diagnosed last year with epilepsy. She has not had a major seizure (she calls them the shakes) since medication was started. However, she has staring spells. She is on a 504 plan at the school for accomadations, however she is still not able to keep up in class. We took her for neuropshyc testing and they said she has an expressive language disorder. The school however, said she is OK and doesn't need to have speech therapy and the accomadations for less homework are ok. Not sure who to ask for help or what other accomadations to ask for. She is the last of my 3, we have never had to stand toe to toe witht he school before. Any comments from anyone who has gone through the public school before with epilepsy would be helpful.......
You need to fight the school. See if there is an advocacy group in your area that can meet along with you when you deal with the school. There are advocacy groups that will help the parents with things starting at testing, all through dealing with the school and getting your child what they need.
The school (commonly) wants to provide the least (they only see $$$) when often your child needs more. It's a give and take, but don't fold. Keep up your demands so your child gets an education.
I am really sorry about your child's situation. I had seizures in school when I was a child. I do not know about the legal issues about the language disorder but I know the stigma she is going through. You sound like the kind of grizzly bear mother I have. She protected her little cub from the "unwillingness" of the school to accomidate. Keep doing that and she will feel loved and protected at least by her momma. Sometimes that was all my mom could do for me but it made me feel loved at home!
It's true that the school will push for what costs it the least. In fact, you cannot assume school personnel are informing you of all of the options available to your daughter. I have experienced this from both the parent and the school side. An advocacy group can help you learn of all of the options for your child.
Your daughter would benefit from an IEP (Individualized Education Plan), which addresses more than just the physical needs she may have. Consider that during the "staring spells" she is likely missing everything going on around her, including information and directions. That means that EVERYTHING in her school day is affected and needs to be addressed, and to have accommodations made accordingly. It is your child's right to have an IEP for this condition. Your daughter's neurologist will be familiar with IEP requests. To set up the IEP, the school must follow a protocol and must do it within a specified time.
You will need to educate school personnel about what the seizures look like or whether the seizures can be observed, how they affect your daughter - including that she likely isn't aware of when they happen, and specific ways teachers and staff can help. I can't emphasize enough the need to educate school personnel about the pervasive effects these seizures have on learning, memory, and testing. Because personnel are far less familiar with epilepsy, they sometimes try to plug in the same accommodations they use with other, more common, learning needs, without understanding that the mechanisms aren't the same.
After it is in place, frequently review the effectiveness of the IEP and adjust as needed. Again, the school is required to make these adjustments.
You will need to monitor teacher compliance daily by checking with your daughter and communicating with teachers. Teachers are required by law to follow accommodations.
It will likely be important to address her participation in standardized tests. Because standardized test parameters provide no way to accommodate for this type of seizure, the results will be invalid, making standardized testing pointless.
You will likely find a few people in your corner from the start, and they will appreciate knowing that you understand the system in which they have to operate.