Re: people really stink....

April 25, 2007

Dear Deb-

Maybe you could present it to as a reward type thing-because he

really pays

attention, or because she sees that he really enjoys swimming-and so she

decided to let him have

some extra time sometimes when she can??

--

Or you could ask the teacher to ask the mother to reserve her stinking

judgement

for another week or two, to see how things come along???

---

Honestly Deb....it's the truth..some people. There just no excuse...

in Ma.

************************************** See what's free at http://www.aol.com.

April 25, 2007

I have to share my frustration with people who understand.

is taking swimming lessons and is in a class of 4 kids (him and his

sister) and these two other girls who are sisters. I got a call today from

the swim place and they want me to bring 15 minutes early to class

so he can get more one on one instruction because apparently, as he was

DOING FINE, just a little slower than the other kids and needed help getting

out of the pool because there isn't a ladder, the other girls mother called

and complained that was taking up too much time in the class! There

was only 1 class so far.

I am so frustrated, he now is being singled out and will know something is

up. What do I do? I know the swim place is trying to accommodate him but

this just doesn't seem that fair. All kids are at different levels within

this class which is the beginner advanced. This woman is going to force me

to get him private swim lessons. I should make her pay for them.

Debbie Matasker

April 25, 2007

GGGRRRRR!

I know you are just venting - but for last summer at the Y they charged me

the group lesson rate for her private lessons due to her special needs. I get

so frustrated having to pay higher rates because of her " requirements " but they

Y was great about it.

Good luck! and GGGGGRRRR!

Lori Myers

Spouse - Trent, Children - (9), (6, CHARGE Syndrome, Congenital

Heart Defects/TOF Pulmonary Atresia/repaired, ECMO 12 days, Bi-lateral Choanal

Atresia, Decanullated Trach, G-button, partial hearing loss, walking as of

12/22/04!, and Emma (4).

Dallas, Texas

RE: people really stink....

I have to share my frustration with people who understand.

is taking swimming lessons and is in a class of 4 kids (him and his

sister) and these two other girls who are sisters. I got a call today from

the swim place and they want me to bring 15 minutes early to class

so he can get more one on one instruction because apparently, as he was

DOING FINE, just a little slower than the other kids and needed help getting

out of the pool because there isn't a ladder, the other girls mother called

and complained that was taking up too much time in the class! There

was only 1 class so far.

I am so frustrated, he now is being singled out and will know something is

up. What do I do? I know the swim place is trying to accommodate him but

this just doesn't seem that fair. All kids are at different levels within

this class which is the beginner advanced. This woman is going to force me

to get him private swim lessons. I should make her pay for them.

Debbie Matasker

April 25, 2007

That's disgusting - that other mother should be ashamed. I would tell them

that would not be possible and he'll have to get his instruction along with

the other children. I would not RISK his self-esteem because some other

mother has a problem. Let HER bring HER kids early.

>

> I have to share my frustration with people who understand.

>

> is taking swimming lessons and is in a class of 4 kids (him and

> his

> sister) and these two other girls who are sisters. I got a call today from

> the swim place and they want me to bring 15 minutes early to class

> so he can get more one on one instruction because apparently, as he was

> DOING FINE, just a little slower than the other kids and needed help

> getting

> out of the pool because there isn't a ladder, the other girls mother

> called

> and complained that was taking up too much time in the class!

> There

> was only 1 class so far.

>

> I am so frustrated, he now is being singled out and will know something is

> up. What do I do? I know the swim place is trying to accommodate him but

> this just doesn't seem that fair. All kids are at different levels within

> this class which is the beginner advanced. This woman is going to force me

> to get him private swim lessons. I should make her pay for them.

>

> Debbie Matasker

>

April 25, 2007

I agree with lisa--how much extra help could he possibly be getting--and where

is the ladder?

Re: people really stink....

That's disgusting - that other mother should be ashamed. I would tell them

that would not be possible and he'll have to get his instruction along with

the other children. I would not RISK his self-esteem because some other

mother has a problem. Let HER bring HER kids early.

>

> I have to share my frustration with people who understand.

>

> is taking swimming lessons and is in a class of 4 kids (him and

> his

> sister) and these two other girls who are sisters. I got a call today from

> the swim place and they want me to bring 15 minutes early to class

> so he can get more one on one instruction because apparently, as he was

> DOING FINE, just a little slower than the other kids and needed help

> getting

> out of the pool because there isn't a ladder, the other girls mother

> called

> and complained that was taking up too much time in the class!

> There

> was only 1 class so far.

>

> I am so frustrated, he now is being singled out and will know something is

> up. What do I do? I know the swim place is trying to accommodate him but

> this just doesn't seem that fair. All kids are at different levels within

> this class which is the beginner advanced. This woman is going to force me

> to get him private swim lessons. I should make her pay for them.

>

> Debbie Matasker

>

April 25, 2007

I worry about things like that all the time when I think about Eva's

future and what kinds of classes I can put her in. I would voice my

oppion and if the mom doesnt like it TO BAD!! Some people!! IT was

the 1st class give me a break, she doesnt know what is to come.

Hugs,

Crystal mom to (11), (4), and Eva (2 year old CHARGEr)

wife to Dan in Illinois

>

> I have to share my frustration with people who understand.

>

> is taking swimming lessons and is in a class of 4 kids

(him and his

> sister) and these two other girls who are sisters. I got a call

today from

> the swim place and they want me to bring 15 minutes early

to class

> so he can get more one on one instruction because apparently, as

he was

> DOING FINE, just a little slower than the other kids and needed

help getting

> out of the pool because there isn't a ladder, the other girls

mother called

> and complained that was taking up too much time in the

class! There

> was only 1 class so far.

>

> I am so frustrated, he now is being singled out and will know

something is

> up. What do I do? I know the swim place is trying to accommodate

him but

> this just doesn't seem that fair. All kids are at different

levels within

> this class which is the beginner advanced. This woman is going to

force me

> to get him private swim lessons. I should make her pay for them.

>

> Debbie Matasker

>

April 25, 2007

....this is very restimulating....

When was in ninth grade and in Student Government (he was Secretary for

the graduating class of 2007 - this is all as part of " regular/general ed " ) they

were conducting various fundraisers. One was a scratch off book. You asked

people to scratch off a circle of silver and the dollar value beneath was what

they would have to donate. Then you give them a discount card with various

discounts at " local " merchants (all of the ones on ours were from chains) in

exchange for their donation.

was having a difficult time with this and he decided to pay for it all

himself. Part of this was because he thought the fundraising was mandatory and

ultimately his responsibility. He was turning in $10-15 a day of his own money

into Leadership class.

When I brought this up to the leadership sponsor, rather than speak directly to

and find out why this fundraiser was an issue for him, she offered to make

him hand written cards he could hand out while the students stood in front of

Target stores - to help him raise the funds without paying for the himself.

OK, not only was she misguided on several issues (he did not need to pay for the

fund raiser himself if he wasn't able to acquire donations, the entire history

of 'Deaf " people pandering for money in public locations) she also claims to

adore and be one of his biggest fans and advocates.

On the flip side, when the leadership class went away for a five day CORE Camp

(leadership camp) went without any accommodations or sign language

translator. He had a blast, and his folder was well autographed. But his

personal care fell completely by the wayside, and it was all he could do to

physically keep up with the group and feed himself. No one once thought to

advise him when he should bring food with him (as they would be eating at an

away location) and often he was in a place where his food was not. It was so

structured and densely packed with activities that only had time to keep

up and participate, and never a chance to think it through to find out if he

needed to carry his food for the day with him the next day. Accustomed to

dealing with medically unremarkable leadership high school students, the

organization had no idea what to even watch for or even that they had failed him

at all.

Apparently there is a fine line between accommodating too much and just enough

and equally fine on the other side of too little and just enough. I am only

acutely aware of it when we are unmistakably on the wrong side of the line.

As our whole family errs on the side of earnest, willing, literal, eager and

compliant alot of the obvious baseline of dignity and respect is not hard wired

into our social agenda - we are too eager to see things first from the other

side. I am learning alot from this discourse.

Yuka

April 25, 2007

I so understand the frustration. It's sad to come to this but doesn't

your state have an advocacy group for people who are challenged? Here

in PA it's called PA Protection Advocacy. Sometimes all it takes is a

phone call from such a group to bring things around to what they

should be like.

When I first started getting services here from our MHMR agency they

started out not even providing interpreters for during

meetings. They lied to me about not having any other deaf but

to deal with. The county MHMR office didn't even have a TTY and, get

this, were using some buildings that weren't even wheelchair

accesable. I found out there were 4 others who were deaf being served

without the benifit of interpreters or use of a TTY. Once I asked PA

Protection Advocacy to become involved that all changed very promply.

I would suggest you threaten to contact their funding sourse

for their refusing to provide for you child in the same way they

provide for the other children. Being a Y I would imaagine they are

funded in part from your local United Way. Sometimes grants they get

have stipulations on service for wide range of childrens' needs.

Could be they are in violation of some of their grant money. A story

in the paper about how they are not providing for specail needs

children may improve the situation also.

I know this sounds harsh but I got a very rude awakening here in PA.

I had to fight for benifits was ENTITLED to. Because of our

shoddy treatment in the beginning I learned to fight back sometimes

in not such a nice way. I may not have gained their friendship but I

insisted on and won their respect of 's rights.

mom to 31

>

> I have to share my frustration with people who understand.

>

> is taking swimming lessons and is in a class of 4 kids (him

and his

> sister) and these two other girls who are sisters. I got a call

today from

> the swim place and they want me to bring 15 minutes early

to class

> so he can get more one on one instruction because apparently, as he

was

> DOING FINE, just a little slower than the other kids and needed

help getting

> out of the pool because there isn't a ladder, the other girls

mother called

> and complained that was taking up too much time in the

class! There

> was only 1 class so far.

>

> I am so frustrated, he now is being singled out and will know

something is

> up. What do I do? I know the swim place is trying to accommodate

him but

> this just doesn't seem that fair. All kids are at different levels

within

> this class which is the beginner advanced. This woman is going to

force me

> to get him private swim lessons. I should make her pay for them.

>

> Debbie Matasker

>

April 25, 2007

You keep going. She is the one who should quit.

Tim Hartshorne

________________________________

From: CHARGE [mailto:CHARGE ] On Behalf

Of Debbie Matasker

Sent: Wednesday, April 25, 2007 2:42 PM

To: CHARGE

Subject: RE: people really stink....

I have to share my frustration with people who understand.

is taking swimming lessons and is in a class of 4 kids (him and

his

sister) and these two other girls who are sisters. I got a call today

from

the swim place and they want me to bring 15 minutes early to

class

so he can get more one on one instruction because apparently, as he was

DOING FINE, just a little slower than the other kids and needed help

getting

out of the pool because there isn't a ladder, the other girls mother

called

and complained that was taking up too much time in the class!

There

was only 1 class so far.

I am so frustrated, he now is being singled out and will know something

is

up. What do I do? I know the swim place is trying to accommodate him but

this just doesn't seem that fair. All kids are at different levels

within

this class which is the beginner advanced. This woman is going to force

me

to get him private swim lessons. I should make her pay for them.

Debbie Matasker

April 25, 2007

Yuka,

I sometimes feel that I may come off as having a chip on my shoulder,

being a you will serve my son extremest. But you know what I didn't

start out that way. It's very rural were we live. Don't even have

benefit of public buses. When was growing up any activities we

got him into I would just go along and act as his interpreter. When

you deal with boyscout troups and 4-H clubs and even Special Olympics

they don't have the budgets to pay for interpreters. I understood

that and we adjusted our lives so had these activities in his

life.

Since graduated from high school I began to realize it wasn't

fair to to have to depend on me for communication. He had

become an adult and was entitled to his basic needs being met. Young

adult men don't don't have mom hanging around all the time. Then with

my heart surgery looming in the future I began to fear for him. It

was really scary to see that even basic communication needs had to be

fought for. I had to start making sure that he was in a place were

his needs were being met and would continue to be met after I wan't

around. A real and vivid need. That's when I recognised how much was

lacking in services in our area. It does come down to fighting. I had

no choice but to learn and learn I did. Most of it the hard way.

Fighting, threatening, and yes even sometimes doing things I didn't

want to necessaryly do. At one point I had to write a letter stateing

that caring for at home with us was not an option anymore

because of my health. It was all part of breaking waiver money loose

for his house. I had a really hard time writing that letter even

though it was something that I didn't emotionally mean. It was all

part of the game they make you play in getting help.

I will say and I are still very connected even though he

doesn't live with us anymore. We enjoy being together. I think our

relationship is even better now.

Looking back I wonder if I could have been guilty of always pushing

him to be involved. I would never let him get away with not trying

something out of fear. I would support him and do my best to keep him

from getting hurt but I made him try. Sometimes right down to the

point of force. First time he went in a pool was by being picked up

screaming and kicking all the way. " Litterally " I put him in the

middle of the shallow end and told him if he wanted out he had to get

out by himself. By then kids were around him trying to make him

laugh. He never got out. By the end of the summer he was jumping in

the deep end and letting himself go underwater. Roller skating, he

kept bugging to attend skating parties but would never skate just

play the games. After a couple times of that, I said your going to

skate!! Took 1/2 hour just to get the skates on him. He was so mad he

was purple in the face. He was curling his toes so I was having a

rough time getting skates on him. But, I insisted, he cried but he

learned how to skate. Still not one of his most favorite things to do

but he can. Some people may think this was an extreme approach but

was so afraid of everything coming out of the institution that

he would have had a very sheltered life if we hadn't forced him to

take part in things. I can't wait for you guys to meet him.

Something else you're going to notice. Even though he had the delayed

growth and weight problems when he was a child he is big compared to

some of the other adult guys here. He hased gained weight over the

past year and is up to 168 lbs. He's 5'7 " and all legs. Wears xL

shirts and size 36 " w/34 " L pants. He is not small any more. I guess we

were very lucky in that the few doctors we dealt with pointed us in

the right directions. We didn't even know we were dealing with CHARGE

until he was 14 so I guess we did get lucky.

mom to 31

>

> ...this is very restimulating....

>

> When was in ninth grade and in Student Government (he was

Secretary for the graduating class of 2007 - this is all as part

of " regular/general ed " ) they were conducting various fundraisers.

One was a scratch off book. You asked people to scratch off a circle

of silver and the dollar value beneath was what they would have to

donate. Then you give them a discount card with various discounts

at " local " merchants (all of the ones on ours were from chains) in

exchange for their donation.

>

> was having a difficult time with this and he decided to pay

for it all himself. Part of this was because he thought the

fundraising was mandatory and ultimately his responsibility. He was

turning in $10-15 a day of his own money into Leadership class.

>

> When I brought this up to the leadership sponsor, rather than speak

directly to and find out why this fundraiser was an issue for

him, she offered to make him hand written cards he could hand out

while the students stood in front of Target stores - to help him

raise the funds without paying for the himself.

>

> OK, not only was she misguided on several issues (he did not need

to pay for the fund raiser himself if he wasn't able to acquire

donations, the entire history of 'Deaf " people pandering for money in

public locations) she also claims to adore and be one of his

biggest fans and advocates.

>

> On the flip side, when the leadership class went away for a five

day CORE Camp (leadership camp) went without any accommodations

or sign language translator. He had a blast, and his folder was well

autographed. But his personal care fell completely by the wayside,

and it was all he could do to physically keep up with the group and

feed himself. No one once thought to advise him when he should bring

food with him (as they would be eating at an away location) and often

he was in a place where his food was not. It was so structured and

densely packed with activities that only had time to keep up

and participate, and never a chance to think it through to find out

if he needed to carry his food for the day with him the next day.

Accustomed to dealing with medically unremarkable leadership high

school students, the organization had no idea what to even watch for

or even that they had failed him at all.

>

> Apparently there is a fine line between accommodating too much and

just enough and equally fine on the other side of too little and just

enough. I am only acutely aware of it when we are unmistakably on

the wrong side of the line.

>

> As our whole family errs on the side of earnest, willing, literal,

eager and compliant alot of the obvious baseline of dignity and

respect is not hard wired into our social agenda - we are too eager

to see things first from the other side. I am learning alot from

this discourse.

>

> Yuka

>

April 25, 2007

,

As I read this I thought how very thoughtful and sweet in terms of how to make

this ok. Then I read the next part which made me howl because I am thinking this

is really what you were thinking!!!

I agree, some people can be soooo stinky. And they are raising the next

generation!!!! AARRRRRgggghhhhh

Re: Re: people really stink....

Dear Deb-

Maybe you could present it to as a reward type thing-because he

really pays

attention, or because she sees that he really enjoys swimming-and so she

decided to let him have

some extra time sometimes when she can??

--

Or you could ask the teacher to ask the mother to reserve her stinking

judgement

for another week or two, to see how things come along???

---

Honestly Deb....it's the truth..some people. There just no excuse...

in Ma.

************************************** See what's free at http://www.aol.com.

April 25, 2007

this is discrimination just has to be that mother should just understnad my

fam r lucky i dot take those kind of things butg they must b hard

>

> ,

> As I read this I thought how very thoughtful and sweet in terms of how to

> make this ok. Then I read the next part which made me howl because I am

> thinking this is really what you were thinking!!!

> I agree, some people can be soooo stinky. And they are raising the next

> generation!!!! AARRRRRgggghhhhh

>

> Re: Re: people really stink....

>

> Dear Deb-

> Maybe you could present it to as a reward type thing-because he

> really pays

> attention, or because she sees that he really enjoys swimming-and so she

> decided to let him have

> some extra time sometimes when she can??

> --

> Or you could ask the teacher to ask the mother to reserve her stinking

> judgement

> for another week or two, to see how things come along???

> ---

> Honestly Deb....it's the truth..some people. There just no excuse...

>

> in Ma.

>

> ************************************** See what's free at

> http://www.aol.com.

>

April 26, 2007

Debbie, I am so sorry for this, i get so upset when things like this happen.

The way some people are is really ignorant.

Keep your chin up!

Cathie

************************************** See what's free at http://www.aol.com.

April 26, 2007

Oh the stories I could tell... but im going to share an opposit story

instead

Well a month or so ago i triped on a side of the sidewalk when my ankle

twisted. I fell and was having a little bit hard time getting back up cause

i had badly banged my knee and ankle. My mobility cane (white cane) was just

out of reach. a few cars did go around me wich was stupid. but I managed to

get up and just as I was getting back up a lady came running. she asked me

if I was ok, she said she saw me fall and came to make sure I was ok. By

that point I was at least able to walk but it was kinda nice knowing someone

did finaly ask me if I was ok.

Chantelle

--

I have 4 eyes, 4 ears, a guide cat and a cat that speaks mouse! - me

April 26, 2007

Chantelle,

It is amazing, isn¹t it, the number of people who walk/drive with blinders

on! I am glad that 1, you are ok and that 2, someone stopped to help, and

3, that you totally see the positive part of that!

Have a great day.

pam

>

> Oh the stories I could tell... but im going to share an opposit story

> instead

>

> Well a month or so ago i triped on a side of the sidewalk when my ankle

> twisted. I fell and was having a little bit hard time getting back up cause

> i had badly banged my knee and ankle. My mobility cane (white cane) was just

> out of reach. a few cars did go around me wich was stupid. but I managed to

> get up and just as I was getting back up a lady came running. she asked me

> if I was ok, she said she saw me fall and came to make sure I was ok. By

> that point I was at least able to walk but it was kinda nice knowing someone

> did finaly ask me if I was ok.

>

> Chantelle

--

Pamela J. , M.A., CAGS

Licensed Educational Psychologist

Deafblind Program

Perkins School for the Blind

175 N. Beacon St.

Watertown, MA 02472

April 26, 2007

So back to this swimming thing..

I left the owner a message so we will see if she calls me back. I told her

I explained this to and he doesn't understand why he can't go to

that class. I also told her he won't thrive without peer role modeling and

a private class is no good for him. I said if it is the instructor that is

not comfortable than put us on a waiting list for an instructor we already

had who had no problem with teaching but that if it was because of

the parent complaint, well then she should just be ashamed of herself.. I

also told her we will pull both of our kids out, both and andra

and put them both in another class together.

I know this couldn't possibly be right, what is happening. My husband is

fine with it and thinks I am crazy, but I think now that he sees how upset I

am he is backing off and letting me go with it. I don't think I am crazy.

Thanks for all your responses as you all ensured me that I am not the one

out of place here. I'll let you know what happens.

My kid just wants to be a boy, a kid, but everyone around him stops him from

doing it. If she doesn't give me a good resolution I am going to the

newspaper on it.

Debbie Matasker

April 26, 2007

Same here Pam, I know there are so many people out there who are just so

ignorant, but hearing about good people makes me feel hopefull and makes me

want to keep on my goal of making people not only tollerent of those with

dissabilities, but also not be afraid to be friends and friendly with them.

I could focus on the bad, but you know what, the fact that the lady came

over and asked how I felt, I just felt so gratefull that someoen cared and I

relized that was more important to me then those that chose not to stop. It

just ment a lot to me.

I hope that mom of the two girls who have swiming lessons would be told maby

she should pay for her own girls to have private lessons. Unless your

training to be a marathon swimmer or speed swimmer, treading, floating and

learning what to do if you get caught in a current is a lot more benificial

then being a fast swimmer. That is how I skipped two swimming levels. I wont

ever be fast but I have good endurance and can keep my head in a crisis

(waves and currents) wich has saved my life twice. Once at a wave pool (got

caught in the under current) and by the ocean when the waves were getting

big and crashing over me.

Its better to allow the current to carry you cause you can emerge to the

surface faster then if you try to fight it. if your in a swift river, go

with the current and use the current to propel you to the closest shore. if

your out in the ocean (say our deaf or HH like me) its a good idea to have

say a flag or safty signal thing so if you get pulled back you can use the

flag to signal.

Anyways i better be going, i have a " food safari " to go to. I will talk bout

that later!

Hugs

Chantelle

--

I have 4 eyes, 4 ears, a guide cat and a cat that speaks mouse! - me

April 26, 2007

Debbie,

I don¹t think you are crazy, either. At the least, someone owes you and

an apology for such narrow thinking and that other mother is doing a

fine job of raising the next generation, isn¹t she??????

Pam

>

> So back to this swimming thing..

>

> I left the owner a message so we will see if she calls me back. I told her

> I explained this to and he doesn't understand why he can't go to

> that class. I also told her he won't thrive without peer role modeling and

> a private class is no good for him. I said if it is the instructor that is

> not comfortable than put us on a waiting list for an instructor we already

> had who had no problem with teaching but that if it was because of

> the parent complaint, well then she should just be ashamed of herself.. I

> also told her we will pull both of our kids out, both and andra

> and put them both in another class together.

>

> I know this couldn't possibly be right, what is happening. My husband is

> fine with it and thinks I am crazy, but I think now that he sees how upset I

> am he is backing off and letting me go with it. I don't think I am crazy.

>

> Thanks for all your responses as you all ensured me that I am not the one

> out of place here. I'll let you know what happens.

>

> My kid just wants to be a boy, a kid, but everyone around him stops him from

> doing it. If she doesn't give me a good resolution I am going to the

> newspaper on it.

>

> Debbie Matasker

>

April 26, 2007

I hope I follow your subject, not just disabilities there are people out there

who against race, religions or homosexually like that. and Debbie sorry to hear

that woman with two girls is pain in the butt and should keep it to herself. did

I follow right? Michele s.