Re: poem about shoes

[Guest guest]

Hi ,

It was me Robin

Here it is...

Please take my shoes.

Walk.

Walk slowly....and listen.

Listen, and look around.

Do you see it?

Can you feel it?

You can't cover your ears and filter the cries.

You can't cover your eyes and not witness the fear.

You can stop your heart and not feel the pain.

It's too intrusive.

Let me help you put on my shoes.

I see your having a difficult time trying to get them on.

I know how they hurt.

But you must try them on.

You have every reason to be fearful, it's ok, their made like that.

Give me your foot. I will lead you.

These shoes are filled with pain.

The worst kind of pain.

They watch your child suffer.

They witness unjust behavior.

They have no support.

But these shoes keep walking.

Let me fasten the shoes for you.

I'm sorry.I know it's terrifying.

Walk…..

Do you hear the noise?

It's your child crying.

Please help me mommy. It hurts.

Why won't they listen to you mommy, It hurts.

How come ny doesn't have to sit so much mommy ? It hurts.

I'm hot and tired mommy? It hurts.

I went to the zoo with my class, I didn't get to see all the animals, I needed a drink, I needed to stop, It hurts.

Can we go back to the Doctor mommy? It hurts.

Do you see the sights?

All the children are playing outside...your child is sitting. It's haunting you.

Your child is sleeping: twitching, sweating, and moaning in his sleep. It's unbearable to watch.

Jump in the bed and rub his legs, don't stop, it seems to help. It's not fair.

Read more books, call more Doctors. Just try to cry on someone's shoulder...Oops, no ones shoulder is there….

Alone..you are alone, alone with the most frightening knowledge.. you realize it's up to you, alone. You Push

Steady in those shoes. Walk slow.. Be gentle.. They don't come off.

They witness society 's abuse of an innocent child. Your heart hurts.

They witness a child, who needs support, being taunted with allegations of laziness. You ache.

They witness professional's doubt and ridicule you child. You cry.

They witness a bright handsome child lose his self worth. Why? For What?

These shoes start to pick up a pace.

It's hard to keep up.

What's around the corner.?

Dear God you want to take them off.

Please not this.

First you hear your child's cries

Then you see him suffer

You watch as his heart breaks and self worth disappears

Why ???

Your child falls; you again help him up.

Things inside him begin to break.

The promise, the doctor, your fingers crossed...

Here we go again….

You're confused. These shoes stop for a minute.

Somebody is listening.

Tests are being run.

Doctor's look serious.

They are trying to help now.

That's Good, ... or is it Bad? ...or, is it too Late?

No...Shoes ...turn around..please ..Not that road.... Any road but that one....

You watch your child in pain.

He is getting worse.

You have support.. you got those arches in your shoes you've been begging for.

But it's too late.

Damage has been done...more to come.

More pain.

You watch as your child cries. You cry.

The shoes must stay on now; they have somehow kept him alive.

They have shown him you never gave up.

He knows you will be their forever. And continue the fight.

You mustn't take these shoes off. They are his life.

You'll need these shoes to get through the part they call the "tough" part.

The new Doctors have put new laces in the shoes.

But they say they don't know how they'll last.

They could slowly, painfully, wither away.

Or they could snap apart in an instance.

Those are my shoes.

I need them back.

I don't know what I'll do if I lose them.

Those are my shoes.

They Hurt.

Written By: Robin

A Mito-Mom Who Understands

[Guest guest]

Thank you Robin. IT is a wonderful poem. I am sending it Colby's old

teacher, since she has no clue how sick he can get, because I keep him at

home. She was #@$#@### the second to last day of school. Colby had run out

of goodnights, and I had to take my older son to a baseball game, so I picked

some on the way. Well the game lasted until 11:30 pm. And when I got home I

forgot to get them out of the van, and my husband took off with the new van,

with the pullups. He usually takes our old van. Anyway I had to send him to

school with a wet pullup, never would to something like this to intentionly

bug a teacher, it was an honest mistake. I told bus drivers to tell them to

immediately put a new one at school. He has a mega package that I purchased,

at school. Well, she called me and said and this is the TRUTH, " you come to

the school right now and change his diaper. I said no, explained what had

happened. She asked me again to come change him. Then she said " I am a

first year teacher and you are not going to pull this on me. " Then she said,

" , what kind of mother are you, to send your child to school like

that. What kind of mother are you. I will not change him. " So I bit her

head off, got off the phone and called my mom. I was so upset, I was numb,

shaking, crying and had to take 4 klonopin just to calm myself. My mother

called the principal, and he said how sorry he was, and that he would go down

and change him. My mother told what all I go through with Colby. And he was

so kind. It is even in his IEP, about pullup changes. I called her boss and

asked when did the law change that a parent had to drive to school and change

a pullup. She said the law didn't change and she said she should not have

spoke to you that way. That's it, no apologies, nothing. Colby did not go

to school the last day, my husband went and got his things the day before and

told principal Colby would not be back. The kids were disapointed that he

was not there. She had the para's bring all of his things to the office,

where one of them said how sorry she was over how the teacher responded. So

anyway I am going to send her your poem, if you don't mind, and tell her this

is the kind of parent I am! Let me know if it's ok. Sorry about the novel.

This teacher is 25, and has no children, boy does she have a lot of learning

to do. Thanks for listening!

mom to Colby 12, COX IV, LCHAD, ADHD

mom to Colby 12, COX IV, LCHAD, ADHD

[Guest guest]

Thank you Robin. IT is a wonderful poem. I am sending it Colby's old

teacher, since she has no clue how sick he can get, because I keep him at

home. She was #@$#@### the second to last day of school. Colby had run out

of goodnights, and I had to take my older son to a baseball game, so I picked

some on the way. Well the game lasted until 11:30 pm. And when I got home I

forgot to get them out of the van, and my husband took off with the new van,

with the pullups. He usually takes our old van. Anyway I had to send him to

school with a wet pullup, never would to something like this to intentionly

bug a teacher, it was an honest mistake. I told bus drivers to tell them to

immediately put a new one at school. He has a mega package that I purchased,

at school. Well, she called me and said and this is the TRUTH, " you come to

the school right now and change his diaper. I said no, explained what had

happened. She asked me again to come change him. Then she said " I am a

first year teacher and you are not going to pull this on me. " Then she said,

" , what kind of mother are you, to send your child to school like

that. What kind of mother are you. I will not change him. " So I bit her

head off, got off the phone and called my mom. I was so upset, I was numb,

shaking, crying and had to take 4 klonopin just to calm myself. My mother

called the principal, and he said how sorry he was, and that he would go down

and change him. My mother told what all I go through with Colby. And he was

so kind. It is even in his IEP, about pullup changes. I called her boss and

asked when did the law change that a parent had to drive to school and change

a pullup. She said the law didn't change and she said she should not have

spoke to you that way. That's it, no apologies, nothing. Colby did not go

to school the last day, my husband went and got his things the day before and

told principal Colby would not be back. The kids were disapointed that he

was not there. She had the para's bring all of his things to the office,

where one of them said how sorry she was over how the teacher responded. So

anyway I am going to send her your poem, if you don't mind, and tell her this

is the kind of parent I am! Let me know if it's ok. Sorry about the novel.

This teacher is 25, and has no children, boy does she have a lot of learning

to do. Thanks for listening!

mom to Colby 12, COX IV, LCHAD, ADHD

mom to Colby 12, COX IV, LCHAD, ADHD

[Guest guest]

,

Give her the poem! I would have it delivered by certified mail, just to get her attention, and I would use extra large print so she could read it, she sounds a little SLOW>

I can't believe that !! I hope that incident goes on her permanent record. She shouldn't be teaching. I've got a few of those nightmare stories, are you going to Dallas?? I'd love to meet you.

Good Luck,

Robin, mom to Complex1 OxPhos w/multi-organ invovlment, and Sara >

[Guest guest]

You did the right thing . A thought has come to me and I think I will ask

my son's kindergarden teacher this. Is do they get ANY training or education in

the area of special education and if so what? They may not completely

understand

that. And as I read these stories about school I got to thinking that people

can

accept a baby and toddler with a disability; but to me it seems as they get

older

people start to change and can't always accept the fact that a 4, 5, 7, or 10

year old needs a diaper or pullup change. They think one way, but the other

part

of the brain reacts a totally different way. In some ways, you did get

an

apology from the principal. And some times it is better to have other people

handle these issues. I would have cried and done probably the same thing. As

you said, this is her first year of teaching and can't get a " grip " on assisting

a child with needs. This is a world we are unfortunately in and need to start

changing it one person at a time. Even in the subtle ways that you are doing.

A

poem, whatever. Good luck in teaching this teacher a minor lesson in child care

for a child with needs.

N. mom to Leah

cccccclark@... wrote:

> Thank you Robin. IT is a wonderful poem. I am sending it Colby's old

> teacher, since she has no clue how sick he can get, because I keep him at

> home. She was #@$#@### the second to last day of school. Colby had run out

> of goodnights, and I had to take my older son to a baseball game, so I picked

> some on the way. Well the game lasted until 11:30 pm. And when I got home I

> forgot to get them out of the van, and my husband took off with the new van,

> with the pullups. He usually takes our old van. Anyway I had to send him to

> school with a wet pullup, never would to something like this to intentionly

> bug a teacher, it was an honest mistake. I told bus drivers to tell them to

> immediately put a new one at school. He has a mega package that I purchased,

> at school. Well, she called me and said and this is the TRUTH, " you come to

> the school right now and change his diaper. I said no, explained what had

> happened. She asked me again to come change him. Then she said " I am a

> first year teacher and you are not going to pull this on me. " Then she said,

> " , what kind of mother are you, to send your child to school like

> that. What kind of mother are you. I will not change him. " So I bit her

> head off, got off the phone and called my mom. I was so upset, I was numb,

> shaking, crying and had to take 4 klonopin just to calm myself. My mother

> called the principal, and he said how sorry he was, and that he would go down

> and change him. My mother told what all I go through with Colby. And he was

> so kind. It is even in his IEP, about pullup changes. I called her boss and

> asked when did the law change that a parent had to drive to school and change

> a pullup. She said the law didn't change and she said she should not have

> spoke to you that way. That's it, no apologies, nothing. Colby did not go

> to school the last day, my husband went and got his things the day before and

> told principal Colby would not be back. The kids were disapointed that he

> was not there. She had the para's bring all of his things to the office,

> where one of them said how sorry she was over how the teacher responded. So

> anyway I am going to send her your poem, if you don't mind, and tell her this

> is the kind of parent I am! Let me know if it's ok. Sorry about the novel.

> This teacher is 25, and has no children, boy does she have a lot of learning

> to do. Thanks for listening!

>

> mom to Colby 12, COX IV, LCHAD, ADHD

>

> mom to Colby 12, COX IV, LCHAD, ADHD

>

>

> Please contact mito-owner with any problems or questions.

>

>

[Guest guest]

You are right, teachers do start acting different when they get older, but

Colby is 12

and is very small. He is only 47 inches tall, and still has a very childlike

voice, so he still a favorite by many, but I have seen other children be

treated that way also. They need to get into a different type of teaching.

Although I know his teacher has learned a great deal from him. He was her

first nonverbal child, with an illness, and knows what is going on around

him, although he sometimes acts like he doesn't to get out of work. She did

catch on to him early on, which was good. I think she just has a short fuse

and went off on with out thinking? Who knows, but I do everything for my 3

boys, they are my life and everything I do is because of them. People tell

me I have to take a break, so my husband and I actually went a movie, its

been at least 12 years. Life is hard trying to balance attention between

three boys, when one is so dependent on me. Sorry for the novel.

See ya

mom to Colby 12, COX IV, LCHAD, ADHD, Chad 14 healthy, Caleb 9 also

healthy

[Guest guest]

We are going to try and come to Dallas. We haven't signed up yet I hope it

is not to late. My husband's brother lives in Dallas, so we could stay with

them. i will let you know for sure. I would love to meet you too!

Hope to see you in June

mom to Colby 12, COX IV, LCHAD, ADHD, Chad 14 healthy, Caleb 9 also

healthy

[Guest guest]

You did the right thing . A thought has come to me and I think I will ask

my son's kindergarden teacher this. Is do they get ANY training or education in

the area of special education and if so what? They may not completely understand

I happen to knwo the answer to this...any general education major is required to take a 3 hour/week/semester course in special education...i have taken it and it is a very general class and is not going to deal much with anything unusual. There is an article to educators a couple of issues back in the UMDF newsletter that was good and addresses it...they really ought to be made to take more...so you have to feel a little sorry for them...they really arent' prepared but they ought to make it thier job to find out all they can when they do have a child!

deb

[Guest guest]

Deb

This was a special education teacher, Colby is in a MR class that

mainstreams. I believe they have some training out in the field before they

go into the classroom. She is young and has alot of work ahead of her.

Experiences like with Colby will be her best on the job training. Books and

college don't give experience, only children. But I am still sending her

Robin's poem.

See YA

mom to Colby 12, COX IV, LCHAD, ADHD, Chad 14 healthy, Caleb 9 also

healthy

[Guest guest]

This was a special education teacher, Colby is in a MR class that

mainstreams

in that case...they have to do the same amount of classroom experience as a regular ed teacher...but they do it all in spec ed programs...most of one semester is spent student teaching...

You are right about experience...I told the medical student who was examining andrew the other day that she was 'lucky' to see a child like him, b/c so many docs have been practicing forever and not had any experience...and she hadn't even graduated...she was very concerned about his regression and did't understand the nature of this beast but I was able to explain and then the metabolicist was too... the hope I h ave is, next time she is in her own practice...and a kid like andrew walks in, she will think outside the box!

deb