Sara,
School IS traumatic, even without MG. At seven, she can express pretty much what she wants to share, although she may not understand her difficulties compared with that of the other kids. I am sure she has strengths that other students lack and that can be helpful in explaining that there are various parts of school that are harder for her because of MG, but other students may be having trouble because of problems they have, too.

When my girls were young, we had "important talks." Those things were discussed in the same place and even when they were older, just sitting there was enough to bring out "important things." What you don't hear about school the minute they come in the door is often forgotten by nighttime, and older children may "think better" by then of telling a parent.

For younger children, It is helpful to know what is happening in the classroom, so you can ask specific questions. The answer to "how was school today" is usually vague. As opposed to "were drawing the r's any easier" or questions about specific classmates. Once dialog is established, questions are not so necessary.

You could tell the teacher that she may do better if activities are varied so that there is not need to use the same muscles for a long time. That may make the day more interesting for other students as well :-)

Good luck, b.

Thanks b. The specific questions are a great way to understand how she feels... What I mean by more practical ideas, for instance, the teacher noticed sometimes she can't recognize the letters,maybe because it's all scrambled by the effect of tiring the muscles, or because she really doesn't know the letters. ?? That's the kind of day-to-day worry of her teacher. When pushing her is too much and when it's just necessary for her learning...For instance, we already noticed she needs a bigger space between lines to write. When it's the normal space, she usually gives up before trying, because it will demand more of her strength and because she will probably fail to write between the lines. Learning from myasthenics will certainly help us understand her and maybe adapt things so she can go on learning without repeating the first grade and so on.... We're in Brazil, so it's a lot harder to get this kind of info because the schools and legislation do not help. Totally new ground for our family and for her school. By the way, this is the third school in a year and a half. The other two schools were just indifferent towards her.... If she did things fine, if she didn't that was fine too... That indifference put her behind the other kids in her grade and now the new school is telling me she will probably have to do the first grade all over again next year. I want to make sure we work this out right this time. Thanks again. Any other ideas, please let me know.

I really think you need constant communication with the teacher. Daily notes if you have to. One of my complaints prior to diagnosis (as an adult) was that I was getting clumsier as I got older. Today detailed tasks with my fingers can frustrate me to the point that I'll do it later or just get someone else to help. She may need some help recognizing better or worse days. Perhaps if she is not doing well during writing practice time the teacher can allow her to do half at school and half at home. I have a sister that early on had difficulty with d, b, p and q. We did find out that part of it was real misunderstanding and part was to get additional attention. The attention part was the lesser of the 2. She will have to understand that you will not allow her to use her MG as an excuse (because all kids at some point will use any excuse at hand) but you will help her through her problems.
I know there was a teen MG forum here at one time. We don't normally advocate going into their space. But they are closer to the school age problems. Now that they are older they may be able to express some of their earlier problems and frustrations where they might not have been able to as young children.
Kimber

One of the websites for children and their families is myasthenickids.org. I sent you a longer message which should be on your site. DS has been acting up lately and I don't know whether anyone is receiving notifications. b.

Hi.

Two of my sons have a disease which affects their kidneys and hearing. Both have used special ed assistance for defining accommodations that the teacher can use with them. The specialist might not know about MG but with some investigation should be able to help come up with a plan for your daughter. The specialists are trained to assist teachers with reaching students with different learning challenges, and the teachers are used to trusting information they get from those specialists. I would take advantage of that help if available.

I would also observe my child doing work that is interesting at home to get a feel for when exhaustion is really the issue. Boredom won't exactly encourage a student to work through difficulty, so it might be useful to remove that variable if possible.

Would it be possible to give your child different colors with which to to write and to time the intervals for the use of each color? A fun test. Then see if you can attach a time to the deterioration of the handwriting? This could give you a value to communicate to the teacher. It gets difficult for her after 10 minutes, for instance.

I constantly have to deal with differentiating between when my sons don't hear me as opposed to when they selectively fail to hear me, so I've had to be creative at times. I found observation and action are generally more effective for me than verbal communication with the teachers or my children. Admittedly, I'm suggesting that you look at everything in an entirely different way, but that's the strategy that helped me.

Good luck to you and your darling!

Would homeschooling be an option? We homeschooled our children for four years. There weren't any health issues to deal with, but we felt at the time that was the best for us.
Barbel

Hi Sara,

I would suggest that bweeds would have some good insight on this stuff. I am sorry your daughter is going through this as I can only imagine some of the difficulty of everything. We need her MG to improve. I would like to think that will happen. I don't know what treatments she is getting, but my heart goes out to your daughter. Please let her know there are people that can appreciate what she is going through...All over the world, not just in Brazil.

Sending love and hugs from California,

TJ

Thanks everyone for your comments. The suggestions will surely help. The new school she is attending now is great. They are interested in learning more about MG and are constantly in contact with us. There is no Information on MG and the day-to-day routine for myasthenics in school in Portuguese, that's why I had the idea of putting the word out there, in English...Hoping to find more practical ideas. Thank you all again.

Anne is an active and bright little girl, very sociable and happy. She knows she is able to do things when she puts her mind and effort on it. The other day she came home a little sad and disappointed, saying she couldn't attend PE classes anymore. I asked why and she explained she couldn't run. Then I told her she could run, maybe not as fast as her friends, but she was able to run. She thought about it and realized some boys ran faster than the others, and that she could do it, her way, but she could do it. That's the message we teach her, she can do anything, her own way and time. According to Brazilian legislation, the school can't change or adapt materials, extended time for tests, etc... Unless we have a group of health professionals saying it's needed, so we're assembling carefully this assistance group, to get the burocratic part going. We have a long way ahead of us, for Brazil is not advanced in special needs assistance. I might even keep record, a diary perhaps... Hoping that your experience might help us, and ours, in Portuguese, might help other children here. Thanks everyone.