need suggestions/modifications...LONG vent

[Guest guest]

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

[Guest guest]

Ruth,

I am sorry that you and Mitch are having to deal with all of this. It

could be that fatigue is causing some mild problems with brain

functioning. The frontal lobe is often impacted when energy is lacking

and

impulse control and the ability to deal with frustration, decision

making and planning, and maintaining attention to relevant tasks are

some of the main functions of the frontal lobe. Deficits

in frontal lobe

processing can include--

Problems of Starting--This may

manifest as decreased spontaneity and initiation. Such individuals

seem to lack motivation and may sit silently without apparent interest

in or curiosity about surroundings until they are directed to do

something.

Difficulties with

Attention--Individuals with frontal lobe

deficits are often captured by extraneous aspects of a task. They may

be highly distractible;

they often seem to shift focus continually.

Difficulties in Making Mental or

Behavioral Shifts--This includes rigidity or perseveration on a single

idea or a single action. Individuals with these problems may be able

to successfully verbalize solutions to problems, including plans

necessary to meet goals successfully, yet be unable to put any plan

into effective action.

I highly recommend asking for a shortened school day--my son has

been doing this even since 2nd grade (He is in 6th grade now). It has

been a life saver for him and we have always been able to work out a

schedule where he misses as little "academic" time

as possible. One year Evan started late and missed Morning work and

specials. Last year he went to school from 8 to 2 MF and 8 to 1 TWTh

and he only missed lunch (1 to 1:30), recess (1:30-2), DEAR (drop

everything

and read) time and study hall. This year Evan is in middle school

and he goes from 8:45 to 2:15. He misses PE (which is every day of

the week in middle school) and his elective (band, choir, art or study

skills). They cross-teamed Evan for math because the kids on his

team have electives in the morning. In the past the district offered

tutoring through the homebound program. Since Evan isn't missing

any academic time this year, I declined. Besides he is too tired

after school anyhow.

In Texas, kids can usually get whatever the doctor requests in the

Homebound

Needs Assessment. I bet things might get a little tricky when Evan

gets to high school--it might be hard to cram all of the requirements

into

a shortened day. Does your state have a similar program for kids with

chronic health problems? The doctor just fills out he Homebound Needs

Assessment recommending a modified program (which it states is offered

to students with chronic or acute health problems who may benefit from

a shortened or modified school day). The doctor can recommend 1)

reduction in the length of school day, 2) health services at school, 3)

prescribed nutrition program at school, 4) physical activity at school,

and 5) Early class release/hall pass.

The shorter day has been one of the best things that we have ever

done.

Evan doesn't get sick as often and when he does get a mild virus he

doesn't

get as tired (whenever Evan is tired he tends to get grouchy or

inattentive).

In the 1998-1999 school year Evan missed about 20 days of school, and

the next

year with shortened days he only missed about 10 days.

Take care,

[Guest guest]

Ruth,

I am sorry that you and Mitch are having to deal with all of this. It

could be that fatigue is causing some mild problems with brain

functioning. The frontal lobe is often impacted when energy is lacking

and

impulse control and the ability to deal with frustration, decision

making and planning, and maintaining attention to relevant tasks are

some of the main functions of the frontal lobe. Deficits

in frontal lobe

processing can include--

Problems of Starting--This may

manifest as decreased spontaneity and initiation. Such individuals

seem to lack motivation and may sit silently without apparent interest

in or curiosity about surroundings until they are directed to do

something.

Difficulties with

Attention--Individuals with frontal lobe

deficits are often captured by extraneous aspects of a task. They may

be highly distractible;

they often seem to shift focus continually.

Difficulties in Making Mental or

Behavioral Shifts--This includes rigidity or perseveration on a single

idea or a single action. Individuals with these problems may be able

to successfully verbalize solutions to problems, including plans

necessary to meet goals successfully, yet be unable to put any plan

into effective action.

I highly recommend asking for a shortened school day--my son has

been doing this even since 2nd grade (He is in 6th grade now). It has

been a life saver for him and we have always been able to work out a

schedule where he misses as little "academic" time

as possible. One year Evan started late and missed Morning work and

specials. Last year he went to school from 8 to 2 MF and 8 to 1 TWTh

and he only missed lunch (1 to 1:30), recess (1:30-2), DEAR (drop

everything

and read) time and study hall. This year Evan is in middle school

and he goes from 8:45 to 2:15. He misses PE (which is every day of

the week in middle school) and his elective (band, choir, art or study

skills). They cross-teamed Evan for math because the kids on his

team have electives in the morning. In the past the district offered

tutoring through the homebound program. Since Evan isn't missing

any academic time this year, I declined. Besides he is too tired

after school anyhow.

In Texas, kids can usually get whatever the doctor requests in the

Homebound

Needs Assessment. I bet things might get a little tricky when Evan

gets to high school--it might be hard to cram all of the requirements

into

a shortened day. Does your state have a similar program for kids with

chronic health problems? The doctor just fills out he Homebound Needs

Assessment recommending a modified program (which it states is offered

to students with chronic or acute health problems who may benefit from

a shortened or modified school day). The doctor can recommend 1)

reduction in the length of school day, 2) health services at school, 3)

prescribed nutrition program at school, 4) physical activity at school,

and 5) Early class release/hall pass.

The shorter day has been one of the best things that we have ever

done.

Evan doesn't get sick as often and when he does get a mild virus he

doesn't

get as tired (whenever Evan is tired he tends to get grouchy or

inattentive).

In the 1998-1999 school year Evan missed about 20 days of school, and

the next

year with shortened days he only missed about 10 days.

Take care,

[Guest guest]

ruth,

If you go to the UMDF.org site and go to the fall/winter 2001

newsletter there is info on dealing with the schools there. I am so

sorry that you are having this difficulty. I cannot give advice for

morgan is only four. I get to start my battle next yr-whoopie!

Good Luck,

Dawn

[Guest guest]

Hi Ruth,

As I read your post, I wondered how many other children get treated

so unfairly. Mito is such a devastating disease. Coming from a former

teacher (Special Education) point of view, would it help if Mitch had

a resource teacher that could help him, when he tired?? It is

understandable that Mitch would not want to be singled out, but

everyone at some point gets picked on. It's just a child's nature..

I do hope you get the situation straighten out, so that Mitch will

get the education/respect that he deserves. Mito definition is NOT

lazy. Some of the education facilitators need to go back to what they

first learned in school. Treat others as they would want to be

treated.

Good luck....

Ann

> 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