Re: Stupids/Irresponsibility

[Guest guest]

Marti,

In Massachusetts there's the new law that everyone has to have health

insurance by this July, and there's low-cost plans for people with low

incomes. I don't know much about the plans, just what I hear on the

news. Eventually the plan is that they should be good for chronic

conditions and have good prescription coverage, but I think the

low-cost options probably are more geared for catastrophe at the

moment. So if all else fails, he can move over the state line.

Martha (MA)

> Barb Henshaw wrote:

> -----Original Message-----

>

> Marti,

> What state do you live in?

>

> Barb in Texas - Together in the Fight, Whatever it Takes!

> Son Ken (32) UC 91 - PSC 99 Listed 7/21 @ Baylor Dallas

[Guest guest]

>

> I believe in my heart he is not ready for college but the insurance

thing is the problem. I will have to see if there are any alternatives.

> Marti

Marti -

How I empathize with what you are going through. And I appreciate

reading others' responses to you, as I learn from each of them.

In past, I would often read posts about how well most of the teens

with PSC were doing... and I would wonder what I, as a parent, was

doing wrong! My son, , nearly 17, has never been a " driven "

student and had never really found an activity or sport or hobby

(except computer games) that he truly loved and was excited about.

Since his PSC/UC, he has dropped most of the activities he did

participate in - playing the trumpet, skiing, skateboarding, etc. And

school is really a struggle.

As the parent, I always wonder how much the PSC symptoms (fatigue,

lousy sleep, abdominal pain, etc) drag him down, how much is " typical "

teen behavior, and what combination of the two?!? And I wonder how

much to push - and never truly know the answer.

I am very concerned that he will not be able to be a full-time college

student and fear the insurance issues that will follow. Sometimes I

think that I should be putting 100% effort into universal healthcare

coverage to cover all the PSC'ers. And I worry that I should be

investigating disability now and not waiting. And I feel guilty that

I feel guilty that is not accomplishing what I think he is

capable of.

The " living under a cloud of doom " certainly expresses how many of

these teens and young adults must feel. The younger kids likely also

feel similar, although they may not be able to express it or

understand the implications of PSC as well as the older ones.

Oops - this is a long post... and now everyone knows what a

worry-wort I am! Yes, I'm a worrier and hoped and expected that my

children would be high achievers - which isn't always the best

parental approach, but I'm honest!

I'm sorry you and your son are having to deal with all of this. And

just wanted you to know that you're not alone and that we certainly

care!

One other thought, when my older son broke his wrist and had to have

surgery, etc., Univ of Nevada Reno was incredibly supportive. I was

amazed how much they offered with making up work, assistance with

voice activated computer equipment (as he couldn't use his dominant

hand), etc. It just took a couple telephone calls and emails to

student services.

Joanne

(, Ca., mom of , 16, UC/PSC 2-06; JRA 1998)

[Guest guest]

Hello,

I'm the wife of a 27 yr old man. I'm 28. He had take down for UC in

2001 and now has PSC. He is still going to college, trying to get

his bachelor's from metro. Even though we are a bit older than your

son, we still have the same problems with insurance. It is just

really hard when you are younger to get good insurance with a job.

My full time job used to offer good benefits, then this year they

have changed to another plan that caps at 50,000 per year. He has

not had a transplant yet, but if he does need one this year we will

have to borrow a huge amount of money from relatives unless we can

get something else worked out.

He doesn't have a full time job. He is still going to school, so we

are looking into getting medical through the school in addition to

the one through my work. The problem is he was 1 unit under full

load last spring. At his college if you had a full load in spring

you qualify for medical during the summer even if you don't take

summer school. He is probably going to have to take summer school to

qualify for their insurance.

There are some full time jobs out there that offer benefits. Try

looking at Fortune's list of top 100 companies to work for, as rated

by the employees. Starbucks, for example, offers benefits to part

time employees as long as they have a minimum number of hours worked

per quarter. I did the math and it looks like it works out to 18

hours a week. Also Whole Foods or Wild Oats. One of them pays 100%

of the medical insurance.

My husband has been in and out of the hospital this year, but he is

working at the grocery store (not Whole Foods, King Soopers), like

someone else has suggested. It is under the Kroger umbrella. I

don't know what the grocers are like in your area, but he has to work

there a year before he gets benefits through his company. There are

3 plans, A, B, and C, and you qualify for different ones as you work

for them longer. Courtesy clerks (baggers) seem to never work their

way up, and stay on plan A. I would assume plan A doesn't cover as

much as the others. My husband would have been elligible for

insurance through his company this month but went on leave of absence.

My husband has not had to drop any classes this semester due to the

illness. He dragged himself to classes and managed to sit through

the hour discussion. It would be much harder to drag himself to work

and stand for 8 hours as a cashier. If your son is feeling ok, then

either is an option, but if he is feeling bad, the schooling is

easier to put up with if you are sick. In addition, employers don't

seem to have a lot of sympathy for sickly employees, despite what

FMLA supposedly does. That is why my husband was practically pushed

out of his last job. So if he's sick, he wants school not work.

Also there's online courses at most universities now, which makes it

even easier...

As for a case of the stupids, irresponsibility, I think it is

something that typically happens to a great majority of early 20-

somethings. Just look at any party school. Unfortunately your son

has more at stake than a bad hangover and bad grades.

I can relate to your situation. My husband is going to a school he

hates (he is very conservative, and public school is not,) but

continues to go because he wants the degree. He was working a job

that he hates, because he can't make money yet off of his planned

real profession (author). He has a young adult novel written but

can't find the time to edit it between everything else that is going

on. When he started getting really sick 2 mo. ago, something had to

give. It was the work. I try to talk to him about getting more

insurance, about him going to summer school to qualify for more

insurance, summer school at a place that he hates, and he just about

looses it. It gets to the point of, so he's had a lot of procedures

done on him and tons of hospital stays for what? So that he can

waste his time on things that he doesn't care about just so that he

can get insurance to get more hospital stays. It's like working a

job to pay for the gas for to get to the job. At some point you say,

so when do I get to do all this " living " that they talked about?

My suggestion is to let your son do some soul-searching, grab a copy

of " what color is my parachute, " etc, to see what he wants to be

doing, and then look for a college that does it. Most likely he's in

the wrong major, not ready for college (like you said), and needs to

figure out what he is ready for. He probably also needs a break.

Pushing him to go to classes that he can't pass or isn't interested

in, having it seem that possibly his life is dependent on these

classes (should something go wrong and he not have insurance) is

probably too much for him. I can understand him not wanting to deal

with it. My husband has said the same thing this year. " Everybody

is talking to me about my PSC. They say I should take it seriously,

etc, etc, etc. I take my medicine on time, try to take care of

myself, etc. I'm doing everything I can. But just because I have

this disease doesn't mean that I want to spend every waking minute

thinking about the disease. I want to do other things too. I don't

need this to take over my life, and I feel like everyone else will be

upset at me if I don't make my life all about my PSC. " I think his

attitude is pretty healthy. Your son might be feeling the same way

about the insurance. Insurance is important, so you can lead a

happy, healthy life. But living is also important.

Not that I'm saying to let him go off the insurance, but just trying

to help you maybe see more of what he is thinking. He's probably not

got a case of the stupids at all...

[Guest guest]

Hello,

I'm the wife of a 27 yr old man. I'm 28. He had take down for UC in

2001 and now has PSC. He is still going to college, trying to get

his bachelor's from metro. Even though we are a bit older than your

son, we still have the same problems with insurance. It is just

really hard when you are younger to get good insurance with a job.

My full time job used to offer good benefits, then this year they

have changed to another plan that caps at 50,000 per year. He has

not had a transplant yet, but if he does need one this year we will

have to borrow a huge amount of money from relatives unless we can

get something else worked out.

He doesn't have a full time job. He is still going to school, so we

are looking into getting medical through the school in addition to

the one through my work. The problem is he was 1 unit under full

load last spring. At his college if you had a full load in spring

you qualify for medical during the summer even if you don't take

summer school. He is probably going to have to take summer school to

qualify for their insurance.

There are some full time jobs out there that offer benefits. Try

looking at Fortune's list of top 100 companies to work for, as rated

by the employees. Starbucks, for example, offers benefits to part

time employees as long as they have a minimum number of hours worked

per quarter. I did the math and it looks like it works out to 18

hours a week. Also Whole Foods or Wild Oats. One of them pays 100%

of the medical insurance.

My husband has been in and out of the hospital this year, but he is

working at the grocery store (not Whole Foods, King Soopers), like

someone else has suggested. It is under the Kroger umbrella. I

don't know what the grocers are like in your area, but he has to work

there a year before he gets benefits through his company. There are

3 plans, A, B, and C, and you qualify for different ones as you work

for them longer. Courtesy clerks (baggers) seem to never work their

way up, and stay on plan A. I would assume plan A doesn't cover as

much as the others. My husband would have been elligible for

insurance through his company this month but went on leave of absence.

My husband has not had to drop any classes this semester due to the

illness. He dragged himself to classes and managed to sit through

the hour discussion. It would be much harder to drag himself to work

and stand for 8 hours as a cashier. If your son is feeling ok, then

either is an option, but if he is feeling bad, the schooling is

easier to put up with if you are sick. In addition, employers don't

seem to have a lot of sympathy for sickly employees, despite what

FMLA supposedly does. That is why my husband was practically pushed

out of his last job. So if he's sick, he wants school not work.

Also there's online courses at most universities now, which makes it

even easier...

As for a case of the stupids, irresponsibility, I think it is

something that typically happens to a great majority of early 20-

somethings. Just look at any party school. Unfortunately your son

has more at stake than a bad hangover and bad grades.

I can relate to your situation. My husband is going to a school he

hates (he is very conservative, and public school is not,) but

continues to go because he wants the degree. He was working a job

that he hates, because he can't make money yet off of his planned

real profession (author). He has a young adult novel written but

can't find the time to edit it between everything else that is going

on. When he started getting really sick 2 mo. ago, something had to

give. It was the work. I try to talk to him about getting more

insurance, about him going to summer school to qualify for more

insurance, summer school at a place that he hates, and he just about

looses it. It gets to the point of, so he's had a lot of procedures

done on him and tons of hospital stays for what? So that he can

waste his time on things that he doesn't care about just so that he

can get insurance to get more hospital stays. It's like working a

job to pay for the gas for to get to the job. At some point you say,

so when do I get to do all this " living " that they talked about?

My suggestion is to let your son do some soul-searching, grab a copy

of " what color is my parachute, " etc, to see what he wants to be

doing, and then look for a college that does it. Most likely he's in

the wrong major, not ready for college (like you said), and needs to

figure out what he is ready for. He probably also needs a break.

Pushing him to go to classes that he can't pass or isn't interested

in, having it seem that possibly his life is dependent on these

classes (should something go wrong and he not have insurance) is

probably too much for him. I can understand him not wanting to deal

with it. My husband has said the same thing this year. " Everybody

is talking to me about my PSC. They say I should take it seriously,

etc, etc, etc. I take my medicine on time, try to take care of

myself, etc. I'm doing everything I can. But just because I have

this disease doesn't mean that I want to spend every waking minute

thinking about the disease. I want to do other things too. I don't

need this to take over my life, and I feel like everyone else will be

upset at me if I don't make my life all about my PSC. " I think his

attitude is pretty healthy. Your son might be feeling the same way

about the insurance. Insurance is important, so you can lead a

happy, healthy life. But living is also important.

Not that I'm saying to let him go off the insurance, but just trying

to help you maybe see more of what he is thinking. He's probably not

got a case of the stupids at all...

[Guest guest]

Hello,

I'm the wife of a 27 yr old man. I'm 28. He had take down for UC in

2001 and now has PSC. He is still going to college, trying to get

his bachelor's from metro. Even though we are a bit older than your

son, we still have the same problems with insurance. It is just

really hard when you are younger to get good insurance with a job.

My full time job used to offer good benefits, then this year they

have changed to another plan that caps at 50,000 per year. He has

not had a transplant yet, but if he does need one this year we will

have to borrow a huge amount of money from relatives unless we can

get something else worked out.

He doesn't have a full time job. He is still going to school, so we

are looking into getting medical through the school in addition to

the one through my work. The problem is he was 1 unit under full

load last spring. At his college if you had a full load in spring

you qualify for medical during the summer even if you don't take

summer school. He is probably going to have to take summer school to

qualify for their insurance.

There are some full time jobs out there that offer benefits. Try

looking at Fortune's list of top 100 companies to work for, as rated

by the employees. Starbucks, for example, offers benefits to part

time employees as long as they have a minimum number of hours worked

per quarter. I did the math and it looks like it works out to 18

hours a week. Also Whole Foods or Wild Oats. One of them pays 100%

of the medical insurance.

My husband has been in and out of the hospital this year, but he is

working at the grocery store (not Whole Foods, King Soopers), like

someone else has suggested. It is under the Kroger umbrella. I

don't know what the grocers are like in your area, but he has to work

there a year before he gets benefits through his company. There are

3 plans, A, B, and C, and you qualify for different ones as you work

for them longer. Courtesy clerks (baggers) seem to never work their

way up, and stay on plan A. I would assume plan A doesn't cover as

much as the others. My husband would have been elligible for

insurance through his company this month but went on leave of absence.

My husband has not had to drop any classes this semester due to the

illness. He dragged himself to classes and managed to sit through

the hour discussion. It would be much harder to drag himself to work

and stand for 8 hours as a cashier. If your son is feeling ok, then

either is an option, but if he is feeling bad, the schooling is

easier to put up with if you are sick. In addition, employers don't

seem to have a lot of sympathy for sickly employees, despite what

FMLA supposedly does. That is why my husband was practically pushed

out of his last job. So if he's sick, he wants school not work.

Also there's online courses at most universities now, which makes it

even easier...

As for a case of the stupids, irresponsibility, I think it is

something that typically happens to a great majority of early 20-

somethings. Just look at any party school. Unfortunately your son

has more at stake than a bad hangover and bad grades.

I can relate to your situation. My husband is going to a school he

hates (he is very conservative, and public school is not,) but

continues to go because he wants the degree. He was working a job

that he hates, because he can't make money yet off of his planned

real profession (author). He has a young adult novel written but

can't find the time to edit it between everything else that is going

on. When he started getting really sick 2 mo. ago, something had to

give. It was the work. I try to talk to him about getting more

insurance, about him going to summer school to qualify for more

insurance, summer school at a place that he hates, and he just about

looses it. It gets to the point of, so he's had a lot of procedures

done on him and tons of hospital stays for what? So that he can

waste his time on things that he doesn't care about just so that he

can get insurance to get more hospital stays. It's like working a

job to pay for the gas for to get to the job. At some point you say,

so when do I get to do all this " living " that they talked about?

My suggestion is to let your son do some soul-searching, grab a copy

of " what color is my parachute, " etc, to see what he wants to be

doing, and then look for a college that does it. Most likely he's in

the wrong major, not ready for college (like you said), and needs to

figure out what he is ready for. He probably also needs a break.

Pushing him to go to classes that he can't pass or isn't interested

in, having it seem that possibly his life is dependent on these

classes (should something go wrong and he not have insurance) is

probably too much for him. I can understand him not wanting to deal

with it. My husband has said the same thing this year. " Everybody

is talking to me about my PSC. They say I should take it seriously,

etc, etc, etc. I take my medicine on time, try to take care of

myself, etc. I'm doing everything I can. But just because I have

this disease doesn't mean that I want to spend every waking minute

thinking about the disease. I want to do other things too. I don't

need this to take over my life, and I feel like everyone else will be

upset at me if I don't make my life all about my PSC. " I think his

attitude is pretty healthy. Your son might be feeling the same way

about the insurance. Insurance is important, so you can lead a

happy, healthy life. But living is also important.

Not that I'm saying to let him go off the insurance, but just trying

to help you maybe see more of what he is thinking. He's probably not

got a case of the stupids at all...