Kathleen is going into 3rd grade next year.If anyone has a child who has an IEP for school they will know that this is a very fustrating time of year because we're writting Kathleen's IEP for next year.One very important thing I want included this year is about Kathleen's health.So in order to do this I'm asking a huge favor of anyone who can help.Kathleen doesn't ahve the language yet to tell me how "she feels".What I am sure of is that she has(like most of you out there),good days and not so good days.It would be very helpful if you could share how you feel on those not so good days,what you think may trigger those not so good days,and what suggestions if any you have for dealing with those in a 9yr old at school.I know it's a lot, but we really need to come up with a plan at school for her.I don't want them just chalking it up to a behavior problem,(in fact my fear is that if it isn't dealt with properly it will casue a behavior problem) that she's willfully not paying attention or doing her work(which I know it's not),or that she forgot what she had learned earlier in the week(becasue this leads them to wanting to put ehr in a self contained classroom which I will not allow).She is a hard worker and LOVES school work.BUT there are times she's very distracted,missspells things I know she knows,she may confuse things that she previously had learned(they get fustrated and think she didn't learn anything).She tires very easily especially in the heat,at this point she jsut can't concentrate.I have talked with them so many times but they jsut don't seem to get it,and they push her,and they tell me things like"omg Kahtleen didn't know her shapes today"Well my response is She's known them for 3 yrs now,and I know that it's just a passing thing, and tomorrow if it's a good day she will know them.If you can confirm or add to what she may be feeling throughout her day and anything that may be helpful in explaining how this disease effects you still even after surgeries, I think maybe it will help them to work with me on this and make a plan for these days.I'de like to print up some responses to give to them at her CSE(comittee on special education).I think it will be a real eye opener for them to know what this little girl really endures throughout her day,and in spite of their neglect of this she still goes to school every day with a smile and works her hardest every minute that she can.Thank you in advance.I'm really sorry this is sooooo long I meant for it to be short and sweet.
Mary Grace

It is very important to be well  hydrated with mm.  How about a requirement that she has an air conditioned classroom. If it is in the IEP/ISP then then will have to put in a window unit if the building isn't cool. Also, they could be required to let her have a drink. My daughter's IEP also mentioned that she was allowed to be absent and it woudlnt' be held against her; she was also allowed to go to school part time and have tutors. Tutoring and homebound is a nightmare though.

Mary Grace:

The only insight I can give you is help you understand some of the "triggers" for me.

1) Being hungry will make me start feeling "disconnected". When I was in school, my mom had peanut butter crackers in the nurses office for me. If I got too hungry before lunch or before dismissal, I would go there and get a snack.

2) Being over tired will trigger a migrane, no fail. If I am over tired, I almost feel like I am walking around in a tunnel. Try to make sure Kathleen is on a set schedule (bedtime) and stick to it.

3) Hydration... You have seen this numerous times. See if Kathleen can have a bottle of water with her at her desk at school. They might let her and I will tell you from experience, the more water I drink, the sharper I am..

4) Emotions. This one is something I don't think I have seen on this board very often. BUT, for me, mood swings have ALWAYS triggered symptoms. I will get really happy and then really sad and I will be almost dramatic about it. Then, after the high energy showing, I would crash... My mom would always say "you are going to throw yourself into an episode.. calm down".. Sounds odd maybe, but if I can control my reactions to my emotions, I don't "throw myself into an episode".

I hope some of this helps. If you need any more info. or if I didn't explain something fully, feel free to contact me. Thanks..

Give Kathleen a hug for me!

- Sara

Sorry I haven't responded until now...

I am so glad that will ehlp you a little bit!!

As far as juice goes. I know it has a lot of sugar so it isn't good for ANY kid to have too much. Try some flavored waters with her. Maybe she'll like it. Also, I put about 1/2- 2/3 water and the rest juice for Abigail. She likes plain water, too, though..