need suggestions/modifications...LONG vent

April 20, 2004

Hi All,

Guess it's time for my annual grievance post. Seems like every April something tragic goes on with my family...maybe i'll start skipping April altogether?! For those of you who don't know me, my name is ruth and i'm the mom to two beautiful treasures, both of whom are mito affected. My daughter is 6 now, and my son just turned 9...which means i've been with this group for 6 years now! WOW! Anyway, i digress...

Last April, my son was diagnosed with probable mito disorder, showing up as a mild form of muscular dystrophy. Up until age 6 1/2 he had been fairly symptom free. At 6 1/2, i started seeing muscle incoordination, fatigue, and getting allllllllll these reports from school that he was inattentive, unfocused, had bad handwriting, wouldn't finish work in class, etc. We went the route of ADHD, but the meds had no affect. Last December, i had a rude awakening as to his limited motor abilities during a horrible experience with a tae kwon do test. Finally, last April i took him to the muscle clinic at Denver childrens where they told me the difficulty focusing, inattentiveness, etc was due to FATIGUE! Made SOOOO much more sense, even though i really didn't want it to be mito...at least i had an answer that made sense. So we got him on a 504 plan at school for time modifications, decreased work load, even allowing the teacher to scribe when Mitch was too tired.

WE've kind of had the same issues this year at school, but the 504 seemed to be helping. Teacher has complained all year that he doesn't use his class time. he will refuse to do the work in class, then give up a recess or come in early to finish it then. I thought that seemed reasonable on Mitch's part , and that it was a decision he was making consciously. He knew the work needed to be done but couldn't/wouldn't/didn't get it done when everyone else in class did. I thought that was what modifications were for...to allow for a different learning style. 2 weeks ago we had a parent conference at the end of which the 504 team comes trooping in, all saying how they don't feel he needs the modifications any more. I was willing to try to let him go without the mod's, b/c he HATES being seen as "different". he would rather eat hot lava than admit to being fatigued in class, or use the scribing, etc. So i signed off on the 504, with the proviso that IF it didn't work out that we would re-evaluate.

Fast forward to yesterday. My kid come home with a note that says he has lost his field trip (set for 5-3) because he got 6 check marks against his name...in the past 2 weeks since conference. Of course after i took some time to calm down, i asked my son what had happened. he told me he was not getting his work done in class again and that even though he would give up his recess to get the work done, he still got check marks. when i asked him WHY he didn't get it done in class, he said "i'm too tired". So i went to the school today and was promptly told by the teacher that she doesn't think he IS tired. she siad he tells her he doesn't know why he doesn't do the work, just that he doesn't want to. She essentially told me my kid was lazy...said he's not doing his best. Okay, besides the incredible "I DON'T GET IT" factor there, i really take offense to my kid being seen as lazy.

Now to the meat of this very long story (sorry). Of course i need to meet again with the 504 team...yay my favorite thing to do. Those of you with higher functioning kiddos, HOW in the world do you get the teachers, staff, whomEVER to understand the nature of this beast? I told her today that he is able to perform the work...INCONSISTENTLY. She didn't even respond to that. What modifications work for your kids, especially to address the fatigue issue? Does ANY one else have a kid that just can't won't get started with his work?? I feel like i'm going crazy here....

ruth

mom to Mitch (9) and Lexi (6), both mito affected and my treasures

April 20, 2004

Hello,

I have to say reading your post made me angry and somewhat relieved. I am

not alone. We too, have a higher functioning 9 year old daughter. We too,

have a 504 plan in place. Still, they believe it (Mito) does

not exist. It is merely an excuse for laziness. I was surprised to read

that you took him off the 504 plan. I feel that it is the only document

I have-she does not qualify for an IEP because she doesn't have any learning

disabilities. All we have is that paper behind us. We deal constantly with

fatigue issues. They don't understand the illness no matter what information

I provide them with-they still can't or won't see it. Oh, by the way:

would join your son in eating lava before she would let anyone know she

was tired. She was forced to take the state of Massachusetts tests (MCAS)

for third graders in ONE day because she had scarlet fever the week the

test was given- Her class was able to take the test in 3 days. I was furiuos

with her and the school. She laid on my living room floor crying because

she was afraid to tell the teacher she was too tired to continue. So, she

took the whole test and paid for it for the next 24 hours.

It's hard. It's the toughest thing I've had to deal with...to date. Schools

just don't get it. Those that do are rare. Our town is a bedroom community

with little funding going towards schools-Nikki is the one who suffers for

it.

If you come up with a bettter plan; let me know. I don't know what to do

- I just pray for summer break to come as fast as possible!

Mom to 9 (Mito-Gerd-Cvs)

Chelsey 12.5 untested

hilandgang@... wrote:

Hi All,

Guess it's time for my annual grievance post. Seems like every April something

tragic goes on with my family...maybe i'll start skipping April altogether?!

For those of you who don't know me, my name is ruth and i'm the mom to two

beautiful treasures, both of whom are mito affected. My daughter is 6 now,

and my son just turned 9...which means i've been with this group for 6 years

now! WOW! Anyway, i digress...

Last April, my son was diagnosed with probable mito disorder, showing up

as a mild form of muscular dystrophy. Up until age 6 1/2 he had been fairly

symptom free. At 6 1/2, i started seeing muscle incoordination, fatigue,

and getting allllllllll these reports from school that he was inattentive,

unfocused, had bad handwriting, wouldn't finish work in class, etc. We went

the route of ADHD, but the meds had no affect. Last December, i had a rude

awakening as to his limited motor abilities during a horrible experience

with a tae kwon do test. Finally, last April i took him to the muscle clinic

at Denver childrens where they told me the difficulty focusing, inattentiveness,

etc was due to FATIGUE! Made SOOOO much more sense, even though i really

didn't want it to be mito...at least i had an answer that made sense. So

we got him on a 504 plan at school for time modifications, decreased work

load, even allowing the teacher to scribe when Mitch was too tired.

WE've kind of had the same issues this year at school, but the 504 seemed

to be helping. Teacher has complained all year that he doesn't use his class

time. he will refuse to do the work in class, then give up a recess or come

in early to finish it then. I thought that seemed reasonable on Mitch's

part , and that it was a decision he was making consciously. He knew the

work needed to be done but couldn't/wouldn't/didn't get it done when everyone

else in class did. I thought that was what modifications were for...to allow

for a different learning style. 2 weeks ago we had a parent conference at

the end of which the 504 team comes trooping in, all saying how they don't

feel he needs the modifications any more. I was willing to try to let him

go without the mod's, b/c he HATES being seen as "different". he would rather

eat hot lava than admit to being fatigued in class, or use the scribing,

etc. So i signed off on the 504, with the proviso that IF it didn't work

out that we would re-evaluate.

Fast forward to yesterday. My kid come home with a note that says he has

lost his field trip (set for 5-3) because he got 6 check marks against his

name...in the past 2 weeks since conference. Of course after i took some

time to calm down, i asked my son what had happened. he told me he was not

getting his work done in class again and that even though he would give up

his recess to get the work done, he still got check marks. when i asked

him WHY he didn't get it done in class, he said "i'm too tired". So i went

to the school today and was promptly told by the teacher that she doesn't

think he IS tired. she siad he tells her he doesn't know why he doesn't

do the work, just that he doesn't want to. She essentially told me my kid

was lazy...said he's not doing his best. Okay, besides the incredible "I

DON'T GET IT" factor there, i really take offense to my kid being seen as

lazy.

Now to the meat of this very long story (sorry). Of course i need to meet

again with the 504 team...yay my favorite thing to do. Those of you with

higher functioning kiddos, HOW in the world do you get the teachers, staff,

whomEVER to understand the nature of this beast? I told her today that he

is able to perform the work...INCONSISTENTLY. She didn't even respond to

that. What modifications work for your kids, especially to address the fatigue

issue? Does ANY one else have a kid that just can't won't get started with

his work?? I feel like i'm going crazy here....

ruth

mom to Mitch (9) and Lexi (6), both mito affected and my treasures

Please contact mito-owner with any problems or questions.

April 20, 2004