Migraine

I am having a very hard time with my daughter's middle school.
they don't want to understand that migraine is a medical condition, even though i have letters from 2 neurologists. They are taking the stance that it is an emotional/psychological issue.

I am wondering how other parents have dealt with frequent absences, how to communicate with the school better and get my daughter any educational services/supplementation that she needs etc.

Hi Julie
There has been quite a bit of discussion on this thread, http://forums.healthcentral.com/discussion/migraine/for...f/2091082/m/10110301

Take a look at this and see what you think.

Hi

I have been doing research and talking to some people about 504 plans. I'm always getting more information so this is just the beginning. I spoke with the friend of a friend who is the head guidance counselor in her school district which is not my school district. I wanted an outside opinion. She told me to first write a letter asking for a 504 plan. She said to be firm. For instance don't say "please consider a 504 plan". Say "I want a 504 plan." She said to have a letter from your doctor with your diagnosis and a statement about how this condition negatively impacts school. She told me that we should be able to get an advocate and that they are free. They are usually available through a nonprofit agency.

I know an attorney who is a neighbor of mine. I contacted him yesterday regarding the advocate. He told me to call the school and they should tell me who the advocate is. I called the school. They did not know the name of an advocate, but gave me the name of an agency to call to find one. I am still working on that. The attorney also provided me with the name of an attorney who specializes in these type of problems, if they are needed. Hopefully, we won't need them.

When I was on the phone with my special ed department they started asking me what accomodations I wanted. I'm going to give you my list of potential accomodations. This is a work in progress. These are just my initial thoughts.

They are:
1. Extra set of books at home.
2. Preferential seating (if you have frequent nausea and vomiting, you may want to be near the door.)
3. Extra time for assignments/tests/projects. (My son may have a migraine free day, but get a migraine in the evening. If he gets one in the evening how can he get his work done on time?)
4. Standardized testing (May ask for extended time or extra breaks.) The school said this is already available.
5. Sports. My son is quite athletic. I know there are many rules about participating as far as missing practices or the day before a meet/game. I want to find a way for him to participate.
6. Frequent absences. Not sure what they call this or how to word it. I want to get around having to get a doctor's note once we miss the alloted number of days.
7. Possible tutoring if he gets behind? The school said this is already available through the school and does not need to part of the 504.

That's my list so far. I'm still not sure what else is available to my son. That's where the advocate can sit down and go over every possibility. I hope. The school seemed in agreement that a 504 is necessary. They will have a school psychologist contact me by the end of next week. I really hope this is all a huge waste of time and that these horrible migraines will be under control by fall.

I'm concerned about my son falling behind next year. He is an A student, but I'm not sure how he will manage next year. This year he has been on "homebound" since February.

Julies517 What part of NYS are you in? The first person I spoke with about all of this, guidance counselor, is a migraineur herself located in NYS. I may be able to get you answers to some of your questions. I am in NE PA on the border of NYS.

I will keep you posted on any other information I get.

Jean Ann

wow jean ann! that looks about right, looks great. even though the school says they provide something such as tutoring...i think i'd feel more comfortable if it were clearly stated as part of the 504 plan...i'm not feeling so trustworthy of schools right now.
i am in rockland county, ny. it is a suburb of NYC.

i am so grateful to you for sharing this information, thank you so much!!

The school psychologist called me Friday to say that Andrew is absolutely entitled to a 504 plan. She is the one who is going to help me get it done. She wants to wait until August to do it since his health may change (hopefully, improve) by then. I would like to just be done with it so I don't have to worry about it. She made me feel a lot better about the whole thing. She was very understanding of the illness. Some of the things that wouldn't necessarily fall into the plan, she may try to add to it anyhow. We talked about all of the accomodations and possibly adjusting his schedule if that would help. I mentioned to her about teaching Andrew self-advocacy skills. (I have been handling it all thinking this was going to be taken care of quickly. That's not the case.) She said that the school psychologists would offer him sessions to teach him self-advocacy, assertiveness skills and how not to get discouraged by it all. I also got the name of a disability rights advocate in my area. I'm feeling very positive about school this fall.

There is a disability rights advocate website with a booklet about rights to education. A lot of it is related to physical problems, but it does talk about 504 and the school's obligation. There are sample letters. Here is the link: http://www.dralegal.org/downloads/pubs/access_to_schools.pdf

Have you made any progress with your school? How is your daughter feeling?

Good Luck with everything.
Jean Ann

Jean Ann,

I'm so impressed! It's great to see progress being made, AND it's great to see you teaching Andrew self-advocacy. This will serve him well his entire life.

Now, and important question -- how are YOU holding up.

quote:

Originally posted by AndrewsMom:
The school psychologist called me Friday to say that Andrew is absolutely entitled to a 504 plan. She is the one who is going to help me get it done. She wants to wait until August to do it since his health may change (hopefully, improve) by then. I would like to just be done with it so I don't have to worry about it. She made me feel a lot better about the whole thing. She was very understanding of the illness. Some of the things that wouldn't necessarily fall into the plan, she may try to add to it anyhow. We talked about all of the accomodations and possibly adjusting his schedule if that would help. I mentioned to her about teaching Andrew self-advocacy skills. (I have been handling it all thinking this was going to be taken care of quickly. That's not the case.) She said that the school psychologists would offer him sessions to teach him self-advocacy, assertiveness skills and how not to get discouraged by it all. I also got the name of a disability rights advocate in my area. I'm feeling very positive about school this fall.

There is a disability rights advocate website with a booklet about rights to education. A lot of it is related to physical problems, but it does talk about 504 and the school's obligation. There are sample letters. Here is the link: http://www.dralegal.org/downloads/pubs/access_to_schools.pdf

Have you made any progress with your school? How is your daughter feeling?

Good Luck with everything.
Jean Ann

I am SO glad to hear this news. What a relief to finally get someone to listen and work with you and Andrew.

Great job.

quote:

Originally posted by AndrewsMom:
The school psychologist called me Friday to say that Andrew is absolutely entitled to a 504 plan. She is the one who is going to help me get it done. She wants to wait until August to do it since his health may change (hopefully, improve) by then. I would like to just be done with it so I don't have to worry about it. She made me feel a lot better about the whole thing. She was very understanding of the illness. Some of the things that wouldn't necessarily fall into the plan, she may try to add to it anyhow. We talked about all of the accomodations and possibly adjusting his schedule if that would help. I mentioned to her about teaching Andrew self-advocacy skills. (I have been handling it all thinking this was going to be taken care of quickly. That's not the case.) She said that the school psychologists would offer him sessions to teach him self-advocacy, assertiveness skills and how not to get discouraged by it all. I also got the name of a disability rights advocate in my area. I'm feeling very positive about school this fall.

There is a disability rights advocate website with a booklet about rights to education. A lot of it is related to physical problems, but it does talk about 504 and the school's obligation. There are sample letters. Here is the link: http://www.dralegal.org/downloads/pubs/access_to_schools.pdf

Have you made any progress with your school? How is your daughter feeling?

Good Luck with everything.
Jean Ann

Jean Ann,

That is just fabulous news! I'm glad you have a good school psychologist that is able to help you so much in getting this set up. I hear you on wanting to have it all set up and over, but anything with paperwork and accomodations attached takes time. Hoops, you know. I think it's perfect that you'll be doing it close to the start of school, though. That will give a clearer picture of how well Andrew's doing, and it will be easier to transition into school. I would imagine it's abrupt being a student getting a 504 plan well after school has started. At least you won't have a bunch of disruption that way.

I'm proud of you and all the work you've done to advocate for Andrew. You've done very well.

I am so happy for you and Andrew, Jean ann!! I am glad that the psychologists at your school are "getting it" and wanting to help. this is the way it should be. I really don't understand what is going on at my school, it turns out that my son's friend's father is on our school board so i've been chatting with him and his wife. they have a special needs child so they understand.....i don't think they are very happy with the way our situation is being handled. hopefully we will be able to reach some resolution soon without a lawyers involvement. i do have all my documents in order and an attorney's name if it comes to that.

Thank you for sharing all of this 504 info Jean ann, i will definitely be using it as a model for Chloe. i will keep you posted as to our progress

again, i am so happy for you guys...what a relief to have things fall into place!

Thanks for the support everyone. It is greatly appreciated. So far, I'm thrilled with the school situation.

I spoke with Andrew's cross country coach today to fill him in. He is very willing to work with Andrew on this. We discussed explaining the medical problems to the team since Andrew may miss practices or meets. He thinks the other kids will be very supportive. Let's hope we get these migraines under control and this won't even be an issue. He just went 5 whole days without a migraine. That is close a to a record for him for the past 7 months. Maybe the elavil is starting to work? We see our doctor in Philadelphia in about 2 more weeks. Then we will find out if they want to hospitalize him again.

Teri: I am holding up as well as can be expected. This has been the most difficult thing that I have ever had to deal with. It's hard to see your son in such pain and missing out on so much especially since he is so young. Initially, I thought this was going to be a short-term problem. But I am learning to accept that it may be long-term. I feel good about our doctor and confident that they will be able to help. I am hanging in there. When Andrew feels good, I feel good. When he is suffering, I am too.

Julie: How are things progressing with your school? Any luck yet?

Thanks again for all the support.
Jean Ann

i am having no luck with our school. the superintendent wrote us a brief FAX after 3 weeks of trying to contact him, stating he sided with the principal. they want us to pursue some sort of "network services" through our county's mental health department. which does nothing to provide academic support.

she was evaluated by the psychiatrist at BOCES, who said to us in person that Chloe was not depressed, that she was "normal" and just in pain...and that we needed to figure out how to deal with the pain. i just received the report from Boces and on the report they wrote "Social Phobia"

i had her evaluated by a private psychiatrist who said maybe there was an anxiety component and prescribed zoloft.

her psychotherapist thinks she's depressed...

Chloe doesn't think she's depressed nor do my husband and i...any anxiety there is is probably due to her missing out on things and getting no support etc.

i have had 2 neurologists and her pediatrician diagnose migraines...why does everyone have to run around looking for something else?

on the bright side, Chloe completed her first full week of school this week, first time in a long time. she hasn't complained of any headaches/stomach pain or nausea this week.. she is not on any medications right now except for claritin.

i am so torn about fighting with my school for a 504 or putting her in a small private school and trying to work with them. i am just glad that summer is almost here.

Hi

Sorry your school is making it so difficult for you and Chloe. It must be so frustrating.

It might be worthwhile to look into the private school even though that seems ridiculous. Your school should accomodate her. I'm sure that you will get this figured out. It is really unfortunate that they are so awful. Have you pursued an attorney or advocate? Maybe they could help you decide if you want to fight the school.

I'm glad that Chloe is feeling better. I am also looking forward to school being over with. Andrew is finishing up finals this week.

I hope things with school will get better for you with the school.
Jean Ann

I would advise that you look for an advocate, too, be it a lawyer or organizational one. It gripes me that you've gotten all this run-around, though. That shouldn't be.

Even though none of you believe Chloe to be depressed, including her doctors, I thought I'd mention that I'm fairly certain that in our classes at school we've had kids in the past who have had 504s related to depression. That just makes it kind of odd that they are dismissing you on the grounds that they think it's depression.

that's what is driving me so crazy, because even if she were school phobic, socially phobic, depressed, anxious or otherwise it is all covered under the 504 plan.....for some reason they think they can pass us off to a county service so they don't have to pay for services...? we are going to consult with an attorney this week, i am making the call tomorrow. i have the name of an attorney that specializes in these school issues. i am also going to continue with the private school option, perhaps after consulting with the attorney i will have a clearer vision as to what to do.

I know. I'm glad you have an attorney name. I'll keep my fingers crossed that it will work out smoothly. All this run-around is ridiculous, and I feel for you.