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Re: i'm leaving, why??

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Well, about to what that 14 year old guy wrote here (I've just read the message

as well as reactions now) I don't think he was deliberately trying to hurt or to

insult anyone here, he probably was a bit troubled, so I don't think he deserved

those harsh responses from many people who did respond to this. It's not really

nice to hurt him more than he already obviously is.

Now about me: To be honest, beside all of the most welcome useful information

available on this list, sometimes it also gives me some kind of negative

emotions (especially when I realise through some topics that some people are

more lucky than I am and have lots of more stuff as well as support available

and at their disposal) and some topics also do get boring sometimes as well, but

the difference between me and that guy from above, is that I don't read the

topics which I'm not interested in or which seem boring to me and that's what

everyone does, I guess.

Despite some things said here, the overall is that I'm extremely grateful for

the existence of this list and for me being able to be a small part of it. It

has taught me so much and let me meet lots of cool friends.

Talk to you later,

Radmy

" I checked my records and that was 14, not 13. I don't have any reason to

doubt the source. I know plenty of articulate 14 year olds (for example MJ,

yes she's 15, I know) - and his attitude did seem kind of like he was

reacting to recent memories. Didn't you think your parents knew nothing

about how to raise you when you were 14? I sure did! And I wanted to

straighten them out. But I knew nothing about how my comments could hurt

other people, as I recall. I'm glad to be past those years.

> Boy, he was very articulate for only being 13, actually smart even though

I

> don¹t think his style or msg was smart... just the fact he¹s thinking

about

> how parents should raise kids etc.... I don¹t know, are you sure he¹s 13??

>

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My son Jordan is 13 (type II), and I can tell you he's one angry little guy

also. Personality type has a lot to do with how an individual responds to

day to day stresses in life. I certainly don't agree with what this 14 year

old wrote, but I can't even imagine going through all the changes in

adolescence/puberty, and trying to deal with the realities of SMA all at the

same time. Reading between the angry lines, it sounded like this 14 year

old just wanted to find something that would help him get stronger. It's

actually what we all want, but most of the individuals in this list are

mature enough to have patience and hope. For kids, that's not so easy. My

son has never read anything from this list (he's only 13), but when I've

mentioned it, he wants nothing to do with it. You see, Jordan sees himself

as much more like everyone else, than unlike them (as I'm sure you all do as

well). Even though we encourage him to attend things like MDA events (like

camp and parties), he doesn't like to go to them because he sees everyone

there as different than him.

On the day to day side, the fact is, Jordan wants desperately to fit in more

than he does now. Don't get me wrong, he has friends, but he honestly

doesn't have friends he can just hang out with and do things with on a daily

basis. He's one of the most popular kids in school, but when Jordan gets

together with a friend to have fun, it's actually a major event so

unfortunately it doesn't happen very often. He can't just ride a bike to

there house, or hop in a car and go, or walk over there on his own. We have

to load him and his chair, and move ramps to his friend's house, possibly

his cough machine, etc. Then, when he gets there he generally finds a lack

of accessibility. It's not that the kids don't want to invite him, but not

everyone's house is accessible, and not all parents are comfortable running

cough machines and the like. If the kids are hanging out in a basement rec

room, how can Jordan be included? The majority of homes can't accommodate.

Most of the type of kids Jordan gravitates towards are athletes, but all he

can do is watch, and that's frustrating. I certainly don't like these

realities, but that's exactly what they are. I know Jordan is struggling

with all those things, and the frustrations often contribute to anger. We

all know the urges of peer pressure and fitting in during adolescence, but

it's obviously a little more difficult when dealing with something like SMA.

Some people just deal with it better. I'm sure this 14 year old is

desperately trying to find something to help him. I think he needs some

encouragement to know that there is hope, but more importantly that he's a

pretty awesome guy just the way God let him turn out.

My 2 cents.....

Jay

Re: i'm leaving, why??

Well, about to what that 14 year old guy wrote here (I've just read the

message as well as reactions now) I don't think he was deliberately trying

to hurt or to insult anyone here, he probably was a bit troubled, so I don't

think he deserved those harsh responses from many people who did respond to

this. It's not really nice to hurt him more than he already obviously is.

Now about me: To be honest, beside all of the most welcome useful

information available on this list, sometimes it also gives me some kind of

negative emotions (especially when I realise through some topics that some

people are more lucky than I am and have lots of more stuff as well as

support available and at their disposal) and some topics also do get boring

sometimes as well, but the difference between me and that guy from above, is

that I don't read the topics which I'm not interested in or which seem

boring to me and that's what everyone does, I guess.

Despite some things said here, the overall is that I'm extremely grateful

for the existence of this list and for me being able to be a small part of

it. It has taught me so much and let me meet lots of cool friends.

Talk to you later,

Radmy

" I checked my records and that was 14, not 13. I don't have any reason to

doubt the source. I know plenty of articulate 14 year olds (for example MJ,

yes she's 15, I know) - and his attitude did seem kind of like he was

reacting to recent memories. Didn't you think your parents knew nothing

about how to raise you when you were 14? I sure did! And I wanted to

straighten them out. But I knew nothing about how my comments could hurt

other people, as I recall. I'm glad to be past those years.

> Boy, he was very articulate for only being 13, actually smart even though

I

> don¹t think his style or msg was smart... just the fact he¹s thinking

about

> how parents should raise kids etc.... I don¹t know, are you sure he¹s 13??

>

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In a message dated 10/3/02 8:09:52 AM Central Daylight Time,

jondus@... writes:

> Even though we encourage him to attend things like MDA events (like

> camp and parties), he doesn't like to go to them because he sees everyone

> there as different than him.

>

>

I sorta felt the same too....but mostly because I didn't see MDA camp as

camping (we had dorms not tents and we ate kitchen food)... I much rather

spend time with my friends at home or go real camping with my family!

I don't see it bad to give the " opportunity " for a disabled child to meet and

play with other disabled kids. Forcing is bad. You shouldn't be friends with

another disabled JUST because they are disabled.

But its good to be exposed to many types of people growing up. I had a few

friendships with disabled kids growing up. I wasn't forced they just

happened. That's how it should be.

I think cutting a disabled child away from all other disabled is as dangerous

as forcing them into a disabled relationship.

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In a message dated 10/3/02 6:48:43 AM Central Daylight Time,

mrt12489@... writes:

> some topics also do get boring sometimes as well, but the difference between

> me and that guy from above, is that I don't read the topics which I'm not

>

Guess what I do that too! Shhh LoL

Well, I do read a few posts on each *topic* to see what's up. Then if its

dull to me I delete or read latter.

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DB said he was sorry that he said things so harshly and if he offened anyone.

He had a lot of crap that day and took it out on the list. He says he's 11

but advanced in english. He lied about age because he didnt want to be

treated like a kid.

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Yes, that's really funny how people always think we would never do anything out

of ordinary or out of the what " nice " definiton is...

I very rarely drink, but like drinking beer sometimes (I am under age) and when

I do it's like everyone gets so surprised... And I used to smoke a few cigaretes

for a few days when I was only 10!!, just out of curiosity (I don't smoke now

and don't find anything interesting in it for now) and I also used to do it in

front of my father... I think I was kind of a spoiled child and everything had

to be on my terms...

So, I'm not at all innocent as so many people always assume. But, even though it

sometimes bothers me, it can be very funny to see all of the stupid prejudices

people have...

> so i would order

> drinks as a teen too when out w/ friends. people assume we're so innocent

> and would never do something such as drink under age.

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In a message dated Thu, 3 Oct 2002 21:55:22 +0200, mrt12489@... writes:

> So, I'm not at all innocent as so many people always assume. But, even though

it sometimes bothers me, it can be very

> funny to see all of the stupid prejudices people have...

I hate dat people " assume " dat I'm innocent, it bugs me! Like when I talk about

getting a bf and actually having sex w/ him, people flip out! I just don't get

it!

~s, the unique princess~

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hope he is re joining??

linda

Re: Re: i'm leaving, why??

> DB said he was sorry that he said things so harshly and if he offened

anyone.

> He had a lot of crap that day and took it out on the list. He says he's 11

> but advanced in english. He lied about age because he didnt want to be

> treated like a kid.

>

>

>

>

>

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So, far he said he doesn't wish to rejoin.....

In a message dated 10/3/02 4:28:47 PM Central Daylight Time,

annaquay@... writes:

>

>

>

>

> hope he is re joining??

>

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I used to always go to Girl's Camp with my church the week after MDA Camp, and I

always thought the contrast was funny. Girl's Camp was real camping! But I love

MDA Camp too. I've made so many friends there and have so many great memories. I

was sad that I didn't get to go this year because of surgery complications!

(although from what I hear, if I was going to miss a year, this was the one to

miss...) And it wasn't like the telethonized version - " Yay, I get to be around

people just like me and pretend I'm normal for a week! " It was just fun to get

away from the world for a week and spend time with old and new friends! Aw, now

I miss camp again...

~e~

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