Re: need suggestions/modifications...LONG vent-Teachers point of view

[Guest guest]

My daughter woke me up and I started to think about your post. I

only skimmed the other responses but I feel a need to respond from a

teachers point of view. I have a son with mito so I try to be as

understanding as I can to other parents who have kids with

disabilities, but sometimes I'm not sure if the parents are truly

understanding the teachers perspective. I have 180 students a day

that I see and about 20% of my case load is special ed or 504's and

I am a regular ed teacher. So here goes - - - The quick answer to

what is going on is that you have a control issue. I do believe the

staff understands that your child has an energy issue, however with

out your child admitting to the other students what is going on the

staff has a class room management problem. If there are 30 kids in

Mitch's class and Mitch doesn't have to do his homework while the

other 29 do, how do you explain it to the other 29. If Mitch won't

tell the class what is going on then the teacher can't. Kids pick

up things quickly and they are imaginative. " Mitch must be the

teachers pet, Mitch can do whatever he wants, Mitch doesn't have to

do his work, etc. " The teacher can't say why Mitch gets an

extension or why he gets to choose when he wants to do the

homework, but the rest of the kids have to do what the teacher says.

It is classroom management nightmare 101!!! Also parents should

realize that with modifications you are indirectly telling the other

students that there is a problem, but you are not telling them what

it is, so it leaves the other kids to their imagination. It is

setting up the student on the 504 for problems with his peers. Soon

the other kids realize things are differnt don't know why and the

teasing begins. The quickest answer, which may be easier said then

done, is to tell the class what is going on. The teachers managment

problem is solved and if Mitch is getting picked on his problem is

solved. I'm not sure if Mitch is getting picked on but I thought I

would throw that in there for others whoose children are being

teased. With the recess, does Mitch go to the teacher's classroom?

If so that may be her only time to be without students for the day-

her one break and now because a student didn't work on his

assignment when he was suppose to she has to give up her break.

Even if she is not helping him, the point is she does not get her

room to herself. I know that may sound petty but teachers, parents,

everyone needs a break in their day from kids- they exhaust you. So

my suggestion on how to handle this is to tell them I see where this

may be difficult for you to deal with in your classroom and give

them a few suggestions such as maybe Mitch should explain to the

class what is going and that will help with other kids to

understand. I know Mitch does not want to do that so maybe Mitch

can go to another room after the direct instruction is done. You

probably don't want that because you are thinkig what is the point

of mainstreaming then. And that is the catch 22. From my point of

view you can not have it both ways. You are living in limbo which I

think is a tough state. Choices are you either tell the class or you

don't and the problem continues. I also know parents think why

should I have to tell the students what is going on, I should only

have to deal with my child. " I don't care if they don't understand

why my child gets an extension. " and the circle never ends.

I'm off my soapbox. It is 2:30 in the morning I have to get up at

5:20 and I probably sound like a huge B#%$&. I'm sure you are all

thinking thankfully she isn't my child's teacher!!! Sorry if I

offended anyone.

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

[Guest guest]

Ruth,

The first thing you need to do is get him an IEP. Even if you have

to get a Lawyer to do it. His medical condition is causing him to

be unable to access the classroom work. It obviously has an

educational impact. I don't know about the laws in your state, but

I believe IDEA covers all states. If he has an IEP then you can get

resources, breaks, snacks, what ever he needs written right into

it. Again, you may need a Lawyer or Advocate to get it done. They

don't come cheap, but your son needs this. Teachers should never

have attitudes about helping kids. Easy or challenging it is part

of being a teacher. If they don't enjoy their jobs they can always

do something else and probably be payed more. I get angry when I

hear teachers making excuses. Teachers have challenges in helping

kids learn in many different ways. They can say why it is

difficult, but mistreating the kids, punnishing them daily or making

them feel bad about what they cannot change is just mean, wrong and

inhuman.

I have a possible mito kid and he has Gatorade in the nurses office

for emergencies. He is allowed to go from PE for his Gatorade if he

feels weak. My son has hypoglicemia and dehydration issues. He

also has heat intolerance issues. So far we haven't had to write a

snack into the IEP, but as he gets older it is longer till lunch, so

it may become nessesary. He has an IEP because he has speech needs

and has an ADHD diagnosis also. His ADHD has a metabolic cause so

meds have a 50% chance of not working at all. Behavior modification

and making sure he has eaten and is well hydrated has helped the

most.

I hope things get better for you. I hope his teacher opens up her

heart to help him be successful. I truely believe is just takes

someone who cares enough to help and go that extra mile.

I would request, in writing, an IEP meeting. I would also request

that the school nurse be at that meeting. Have you gotten anything

in writing from the doctor who made the diagnosis? If there isn't a

diagnosis a doctor (maybe Geneticist) can still write an emergency

letter or something explaining what happens when your son

experiences fatigue and how serious it can be medically for him.

This must be very difficult for your son. My heart goes out to him.

My kids do not like being different and they each react differently

to it. My 7 yr old gets furious, my daughter cries. My 5 yr old is

a trooper. I believe all of the early intervention has helped him

cope better than the others.

Barbara

Mom to 10 AD/HD,Asperger's Syndrome & GERD, Max 7

Asperger's Syndrome & GERD and Corbin 5, AD/HD, poss Mito or

Metabolic disorder, Oral motor and motor planning dyspraxia, fine

motor delay, GERD, hypoglicemia and heat intolerance. (born with

Lactic Acidosis, high Pyruvic acid levels, hypoglicemia, Apnea,

severe reflux and carnitine dificiency. Stopped breathing at 3 days

old.)