Re: 504/fatigue

[Guest guest]

We had our 504 instigated by our developmental pediatrician. He spelled it

all out - how is was Not Lack of Motivation!!

I also suggest that Mitch needs to understand that he is not less than

others just because of his fatigue and then perhaps he could let others know

more about his issues. He needs to accept himself - and the other kids need

to learn empathy as well. This will take time and perhaps counseling.

Perhaps he feels too distracted or just plain uncomfortable doing his work

during class time and he likes the quiet of the room during recess? Is he

sociallable otherwise? Can he bring the papers home and do them then? Is

during class or at recess the only options? Ask this of the teacher,

nicely, of course.

I had a similar incident this morning and so don't want to get lengthy here

right now, need to collect myself. But at least ask the school for options.

What have they tried outside of 504 to help Mitch? Not all regular ed

students get treated the same - they are individuals too after all, many

teachers treat their students appropriately even though it is more than the

law dictates.

Good luck. I know what you mean about April - it's February I'd like to

skip.

Cara

Geri-Anne and Wyatt, Complex I

-- In Mito , hilandgang@a... 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

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