RE: Talking to class about mito

[Guest guest]

I posted on this subject last year prior to taking my 4 yr old profoundly

affected daughter to her then 2nd grades brothers class for " show and tell "

Another mother suggested I compare her to a gameboy with weak or run down

batteries. That seemed to really help the kids understand the energy

problem. They all know about gameboys. They had lots of questions, some were

very cute. My son loved having his sister there. I'm not sure if it will

really help. But, I have noticed now when his friends from his class come

over they know her name and at least talk to her and go up to her. Some of

our neighbor children that are not in his class don't even acknowledge

.

Good luck. I'm sure your presentation will help. The other important piece

is to say it is not contagious. That your child was born with the problem

and he cannot give it to anyone in his class.

Janelle McGuire

[Guest guest]

I talked to my son's third grade class last year during the first week of school and I felt as though it was very helpful. I tried to address the very obvious things that they were likely to notice, and I could see them nodding their heads as I spoke, showing that they had noticed and were relieved and interested to hear them explained. I started by telling them that it was called mitochondrial disease and that although it was called a disease, it is not catching, it's just the way his body is made. I explained that it meant that his body does not make energy the way it should, using the gas/car analogy and the gameboy with a low battery. I explained that because everything in your body needs energy to run, a person with mito could have all kinds of different problems and ran through the potential list. Then I explained that my son is mostly affected in his muscles and his brain, and that that gives him particular issues - he's not strong, he can't really run or jump, it's hard for him to write, he doesn't grow fast so he is much smaller than the rest of them and his brain doesn't have enough energy so he can't learn as fast as they do or remember as well and that he sometimes has trouble controlling his behavior so they might notice that he didn't always act the way he should. Finally, I emphasized that despite these differences, he is a kid like them and that there are lots of things that he enjoys and is good at (telling jokes, anything to do with Star Wars, watching movies, playing computer) and said that he loves to have friends. I found that this made a huge difference in how kids treated him. In prior years, the kids in his general education class pretty much ignored him. Last year, they paid him a lot of attention and really tried to be nice and friendly. It was hard for me to do (public speaking i s not my thing, plus, it made me sad), but I am so glad that I did it and will definitely do it again this year. Good luck! (p.s. I did it with my son out of the room).

[Guest guest]

hi there cindy, when i have gone into daniels class, to give "the talk", i have tried to get the kids to duplicate daniels symptoms in order to give them better insight, i.e. " o.k. this game is, everyone put your arms up in the air, keep them there until i tell you to put them down" then after several mins. of general chat , when i could see that the kids were really getting weary , have them put down their hands and write their name, " o.k. thats how daniels arms feel all the time, and thats why daniels writing may not be as neat as yours." etc. etc. and talking in very poitive forms, i.e. " what is really neat about the kids in this class, is everyone is different, some have blonde hair , some have glasses, some are good readers some are not, but everyone respects everyones differences and i know that daniel will have a great year with such a super class."etc.etc. daniel is now going into gr. 7 and we have never had any problems with kids, ( adults,,,,,now theres another story) that is always how weve dealt with it, mind you daniel has always chosen to be out of the class, i.e. ive done this at 2.30 so that the kids have time to go home and think, so that its not quite so fresh in their minds , and daniel is not bombarded with questions. hope this helps a little, jillian, daniels mom

----- Original Message -----

[Guest guest]

Janelle,

Thanks for the Gameboy idea! I hope it will help to talk to the class. We

try to include our child like nothing is wrong, yet everyone knows

differently. I have struggled with whether you say anything or do you

explain. I think since the teacher talked about it last year and this year

they want to, I think I should be involved. Thanks!

Re: Talking to class about mito

I posted on this subject last year prior to taking my 4 yr old profoundly

affected daughter to her then 2nd grades brothers class for " show and tell "

Another mother suggested I compare her to a gameboy with weak or run down

batteries. That seemed to really help the kids understand the energy

problem. They all know about gameboys. They had lots of questions, some

were

very cute. My son loved having his sister there. I'm not sure if it will

really help. But, I have noticed now when his friends from his class come

over they know her name and at least talk to her and go up to her. Some of

our neighbor children that are not in his class don't even acknowledge

.

Good luck. I'm sure your presentation will help. The other important piece

is to say it is not contagious. That your child was born with the problem

and he cannot give it to anyone in his class.

Janelle McGuire

[Guest guest]

Thanks, those are some great ideas! I love the feedback. Thank you!

-----Original Message-----From: Jillian Webbe Sent: Thursday, August 30, 2001 12:07 PMTo: Mito Subject: Re: Talking to class about mito

hi there cindy, when i have gone into daniels class, to give "the talk", i have tried to get the kids to duplicate daniels symptoms in order to give them better insight, i.e. " o.k. this game is, everyone put your arms up in the air, keep them there until i tell you to put them down" then after several mins. of general chat , when i could see that the kids were really getting weary , have them put down their hands and write their name, " o.k. thats how daniels arms feel all the time, and thats why daniels writing may not be as neat as yours." etc. etc. and talking in very poitive forms, i.e. " what is really neat about the kids in this class, is everyone is different, some have blonde hair , some have glasses, some are good readers some are not, but everyone respects everyones differences and i know that daniel will have a great year with such a super class."etc.etc. daniel is now going into gr. 7 and we have never had any problems with kids, ( adults,,,,,now theres another story) that is always how weve dealt with it, mind you daniel has always chosen to be out of the class, i.e. ive done this at 2.30 so that the kids have time to go home and think, so that its not quite so fresh in their minds , and daniel is not bombarded with questions. hope this helps a little, jillian, daniels mom

[Guest guest]

I also took my 2 year old (profoundly affected)to my son's first

grade class for " special day " . At first I was a bit worried because

Dougald doesn't think too much about Ronan being different and I was

sure that his classmates would notice! In any case, I explained mito

by saying that just like cars need gasoline energy to make them run ,

the body too has a type of gasoline (ATP) and that Ronan has trouble

making that gasoline and thus often runs out of energy or fuel.

Ronan tried to take a few steps (with splints on) and I told the

class that his few steps was like them running ten laps in physed! I

think the best thing about taking Ronan to school was having Dougalds

friends meet Ronan. Every time we go to school now, they come over,

say hello to Ronan and ask how he is.

[Guest guest]

,

We had the school nurse explain to the children about Kira. She was great! Kira is going to be 11 and is in 6th grade. She told the kids that Kira's body doesn't work like theirs and that she needed their help to make sure that Kira was safe on the campus and told the kids some of the symptoms ect. She has done this for 4 years now and the kids are great. We have had her go in to my sons class as well. Once the kids understand they can't catch anything from them they really settle down and want to help them out, sometimes too much, Good luck!

Hugs

O

Mito Mommy smiling with tear filled eyes, holding on to Gods hand tightly, knowing He holds us in the palm of His hands and won't let go!

[Guest guest]

Thank you so much, and everyone. I';ll let you know how it goes.

-----Original Message-----From: mitooggo@... Sent: Wednesday, September 05, 2001 12:20 AMTo: Mito Subject: Re: Talking to class about mito, We had the school nurse explain to the children about Kira. She was great! Kira is going to be 11 and is in 6th grade. She told the kids that Kira's body doesn't work like theirs and that she needed their help to make sure that Kira was safe on the campus and told the kids some of the symptoms ect. She has done this for 4 years now and the kids are great. We have had her go in to my sons class as well. Once the kids understand they can't catch anything from them they really settle down and want to help them out, sometimes too much, Good luck! Hugs O Mito Mommy smiling with tear filled eyes, holding on to Gods hand tightly, knowing He holds us in the palm of His hands and won't let go! Please contact mito-owner with any problems or questions.