Kathleen has had several strokes one very severe ,she had her surgery 3 yrs ago.She also was born with down syndrome.Verbaly she's quite behind and can't always express what she feels.She has good days and not so good days where she's just "out of it" her concentration is off her thinking isn't the same and things she seems to know just don't seem to "be there on target" KWIM? Well at school I always try to explain(Till I"m blue in the face it seems now) that she WILL have days that aren't so good.That there are just sooooo many factors that will come into play.Like heat,tired,fustration, etc. etc. etc. Am I wrong????? Can anyone shed some light on this and how I can explain to them what she might feel like, and medically what comes into play? I'de like for them to understand and know what she's been through and how much she "puts up with" throughout her day.She could feel things that she can't explain like numbness,maybe not a headache but just not feeling "right" temporary vision problems or hearing.These are all just some of the things I've heard people mention that happens to them ,the difference is kathleen can't verbalise what she's feeling.I just want them to understand and give her some "slack" when this is happening.I'ts pretty easy to tell when she's not feeeling"right" she drools more, leans to the left, her eyes get very red, sometimes she even gets pale.
sorry this is so long and confusing post,I'm not sure if anyone can understand what I'm getting at, but I feel better just coming here and writing to all of you who ahve been through what my little girl has.I wish I knew how she feels and what I can do sometimes.It hurts to think that they're just pressuring her to go on, and get and answer when she just wants to rest.I also see the other side that I don't want her to get out of her work by saying I'm tired or don't feel well.Thanks so much for listening!
mary grace

Hi Mary Grace,

That really has to be very frustrating to both you and Kathleen. My heart goes out to you and little Kathleen. I would think, if Kathleen has had the same teachers for any length of time, they would know when Kathleen isn't feeling well.  I think it goes without saying that Kathleen is a fighter and tries to do all sorts of things that individuals who don't have any medical issues wouldn't, couldn't or have never even tried to do. So to me, if I were Kathleen's teacher, I would know when Kathleen is not having a good day.

I know it is hard to explain the symptoms because they can be "all over the board" so to speak, and can be different on different days and can be different for each individual. That in itself is a challenge.

I make a list of different things I know are an idication that Kevin might be having problems or simply not having a good day.  Like you mentioned, there are certain things that you recognize with Kathleen when she isn't feeling well such as the extra drooling etc. I would think the teachers would notice if Kathleen had extra drooling etc.  If not, I would wonder why. I question why you have to tell them till you're blue in the face.  Aren't they listening? I would make a list of the signs and symptoms that you know cause Kathleen problems and call a conference with the teachers and give them a copy of the list and discuss the situation.  I would include the principal since it is obvious the teachers aren't listening. If that doesn't work, there is always the school board.  If you have tried to remedy the situation and to no avail, it is time to take it to the next level.

There are some "common" symptoms children have but then they also have their own symptoms unique to their own situation.  It is going to be different because not every moyamoya victim has the associated or same co-conditions.  Like Kathleen has Down's Syndrome in addition to MM so she is going to have a list of symptoms related only to Down's Syndrome and then her own issues related to MM and then symptoms related to the combination of the two.

Mary Grace, in your post you have listed many of the symptoms you know cause Kathleen problems and what the problems are.  I would think that would be sufficient for anyone to know that Kathleen is not having a good day. I think it's time to go to the next level... in my opinion.

I hope this helps. Please keep us posted on your progress in getting Kathleen's symptoms across to her teachers. I'm actually appalled that you have to keep telling the teachers over and over again about Kathleen's symptoms. That's not only baffling and frustrating it's not okay.


Hugs,

Lore

   Thank you everyone for your response.I feel better already just knowing we're not alone in this and that I'm not just an overprotective mom making excuses.That's how I feel sometimes when I ahve to tell them She may not have been cooperative because she didn't feel well, or was tired.They really are great with Kathleen and care about her but I'm not sure they understand the fact that this disease will not go away and that even though she hasn't had another stroke and the surgery was a success she may still have issues pertaining to MM.The problem is there's no "list" or really good information to give them.just the basic medical stuff and that doesn't seem to include the everyday things that this disease brings with it even after surgery.Or is there and i missed it.I know for example there's dehyydration issues and so do they it's in her files,but nothing I've read actually gets into the fact that maybe if she's just a little low on fluid she might feel not so great or that something else is affecting the blod flow.KWIM??? So much of what I've learned is from you all here and reading your daily posts about your lives and your children.My guess is there's an endless list of what could affect her day and how she feels...... Is there anything I've overlooked as far as what might affect her day??? The teacher and aid have been with her 2 yrs now they are great and Kathleen loves them both but.... Jenny hit it exactly right.I think they're afraid when she's non compliant it's the beginning of a behavior issue.Even though they know she's a very compliant child.Doesn't it just break your heart Jenny when they try to push her and she has to resort to getting angry or sad to get her point acrosss.She had 2 weeks of being non compliant and that's soooo not Kathleen she loves school and she loves accomplishing something new.I think they were afraid that she was trying to pull something over on them and use a tired excuse to get out of work.They were getting fustrated and were concerned enough to try and come up with a plan but I told them it was the heat(it was 80 or higher everyday and the school is very warm).I understand and agreee that they can't just stop everything and let her sit and do nothing everytime she looks or seems a little tired but.... I'm still trying to find the right balance and guidlines for them to maybe follow.She is the most cooperative child I've seen given all that is asked of her everyday of her life, and if she's not I know there's a reason.Jenny that's the other thing that is hard to explain to everyone is why she knows things one day and they'll ask her another day and she just isn't with it.They know she knows it.For instance today her aide said she asked a question about a book they were reading and it was "where did the story take place inside or outside?" She was looking at the book and it was obviously outside trees and all,well Kathleen kept saying inside.I said she's just off and not paying attention her adi actually thought that maybe she didn't know the difference of outside and inside...I thought she knew her better than that.... Thanks again for listening and for your responses it helps tremendously.I feeel better knowing we're not alone.....
mary Grace

Mary Grace,

I'm sorry to hear that you and Kathleen are going through a hard time at the moment.

I can also sympathise with the good and bad days issue.  On not so good days my concentration is bad and I generally feel 'slow.' I understand how frustrating this can be - just wanting to get on with things and not being able to.

Has Kathleen had any neuro psychological assessments done?  I had one done whilst I was at school and the neuropsychologist who carried it out sent a copy of the report to my school. Within this there was a breif medical history, the results of the tests and at the end, an explanation of how important it was to give me the time that I needed. With this report, I was able to have extended time in my exams and I think my teachers were able to have a better understanding of not only Moya Moya but my learning needs too. Perhaps a report or letter from a neuro psychologist who has seen Kathleen might be able to help her teachers understand her needs. I hope this helps.

Best wishes to you both.

Roz

Hi Mary Grace,

I think schools might have access to Educational Psycologists but not Neuro Psycholgists. Having said that though, I'm not sure what schools are like over in the States in terms of access to outside bodies.

I think Neuro Psychologists are more specailised. My assesment was done outside of school as part of routine check ups with the hospital. With this particular Neuro Psychologist, she was doing research on children with Moya Moya and the effect on cognitive function so she travelled up to see me herself rather than me go to London.

By the way, I don't think you're being overbearing at all. You are acting in the best interests of your daughter who has already had so much to deal with and is currently continuing to deal with things on a day to day basis. I may not be a mum myself but I can see that you're a mum who only wants the best for her daughter.

Roz