intentional dwarfism, huh?

[Guest guest]

Should severely disabled kids be kept small? 6-year-old given

hormones to stunt growth so parents can care for her

http://www.msnbc.msn.com/id/15517226/

shortdwarf.com, " where size meets reality "

312-233-2639 (M-F 8 AM - 5 PM office)

517-371-2225 / 1.866.864.3438 (voice mail 24/7)

mailto:1.866.864.3438@...

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[Guest guest]

Interesting article. I am a home health aid. I believe I got into this because

of my . I always very much disliked other people (nurses and such) taking

too much part in her care (accept when it is obviously in her best interest).

Throughout her 18 years she has been in the hospital multiple times for

extensive orthopedic surgeries. I have witnessed overworked and stressed out

nurses giving heartless care to her. Only doing the required job but with

little compassion. I have witnessed stupidity such as a nurse using a fracture

pan (after back surgery) to help my daughter go to the bathroom, but using it

BACKWARDS!

In my capacity as a HHA, I have gotten very close to the parents of the kids I

care for. One such parent has cried to me over the past 2 years on multiple

occasions because she fears that she will have to one day turn over the care of

her severely disabled daughter to strangers. It IS inevitable. She has

expressed to me that she wishes her daughter could have had a hysterectomy due

to the increased difficulties that would arrise with the onset of menses. She

has expressed a desire to keep her daughter 'small' to ease her caregivers

difficulty in caring for her.

I have always wholeheartedly agreed with her. The only thing that I ever said

to her to DISAGREE is that because her daughter is only MILDLY mentally

challenged, it might not be emotionally healthy to stop her from reaching

puberty. On the other hand, I have always understood the benefit of her wishes.

The girl I care for 30 hours a week is now 14 and HAS reached menses and it

has been increasingly difficult for her parents to provide care. I only work

every other Sunday and every weekday at her home. On the Sunday I don't work

there, her father is the one caring for her (mom and dad are divorced). When

she has her period her father is extremely uncomfortable changing her breifs and

naturally, she is ADAMENT that he not be the one to do it. Now, they have to

bring in female friends of the family to do this a few times a day on that

Sunday. Further she keeps saying that she wished she never got her period

because she finds it to be a useless aggravation since she will never be married

and have children. (On this point, I have to agree). With her level of

physical disability she will not have those opportunities. FACT is, she will

one day be institutionalized. It is very sad because if she were smaller in

size, her parents could go on caring for her for many more

years. All of her Activities of Daily Living need to be done by caretakers.

Bathing, dressing, toileting, changing of soiled breifs, feeding and grooming.

Plus the girl, having absolutely no control of any aspect of her life, is angry

and she fights - hard. When you pick her up (she refuses to be moved with a

barrier free lift) she tenses and throws her body around. Being 14 it is

dangerous when she does this as it is easy to drop her. I use the lift now

against her will because I fear for her safety but her parents are so

heartbroken when she acts in that way, that they will physically pick her up and

risk it.

I see NO ethical reasons to deny parents a request to stunt the growth of a

child who is severly disabled. I do think when the cognitive impairment is

minor then the issue gets a little cloudy. But like she (the girl I care for)

has told me, she certainly has no reason to have her period. So, as a parent,

it becomes a decision that you should have a right to make AFTER careful

consideration. Obvioulsy it must happen while very young so the child isn't

part of the decision making.

After caring for her for so long and knowing how much worse her life will be

when she is institutionalized, I feel it would have been the right thing to do

for her 8 or 9 years ago.

Bonding with this girl is almost impossible as she spends every moment of her

life screaming and crying at everyone. Everything is a battle of wills with her

because of her anger and frustration. No counseling has helped her. She has no

friends because she treats everyone so poorly. As a mother and a healthcare

provider I am able to understand all that is behind her behavior. PLUS I am in

a home environment where her mother is able to step in to releive me as needed

throughout the afternoon. If she were in a different setting, I would NEVER be

able to do this. In fact, I have actually taken breaks of up to a week at a

time to care for someone else so that my frustration won't be so overwhelming

(at moms request because she's afraid I will leave permenantly-like every other

HHA has done after knowing the girl for a few days). Institutional life for her

will be cold and compassionless.

Yes, I agree with purposeful stunting of growth. It absolutely would allow for

her to be at home for many, many more years.

Amy Spencer

" shortdwarf.com " <shortdwarfcom@...> wrote:

Should severely disabled kids be kept small? 6-year-old given

hormones to stunt growth so parents can care for her

http://www.msnbc.msn.com/id/15517226/

shortdwarf.com, " where size meets reality "

312-233-2639 (M-F 8 AM - 5 PM office)

517-371-2225 / 1.866.864.3438 (voice mail 24/7)

mailto:1.866.864.3438@...

775-521-7001 fax

208B S 8TH ST, LANSING MI 48912-1422

******************************************

---------------------------------

Want to start your own business? Learn how on Small Business.

[Guest guest]

Wow...I'm not sure if you realize how inflammatory may of your statements

were...I admire that you didn't preface them with the usual fears of

upsetting people and I recognize that you have years of experience as a home

health aide however...In my opinion I find you as dangerous to work with

(the parents of) people with disabilities as the aides you mentioned that

were uninformed on proper use of some medical equipment. It is NEVER ethical

for a parent or anyone else other than an adult with a disability to make

decisions about their life that would have permanent life-altering effects,

like having a hysterectomy. First, I'm really offended that you seem

comforted with YOUR knowledge that she will never get married and have

children. I completely understand why she feels that way right now because

that's a common feeling for an adolescent with a disability and I personally

relate to her..I just think it's a tragedy that because her level of

disability you and those around here are in full agreement. I'm not being

unrealistic of sugar-coating her situation..It sounds like she has a severe

disability and no-she may not meet her husband in the same way that many AB

s do but I know many many couples or individuals who have found a soul mate

and also have very severe disabilities. Secondly, I am further concerned by

your recognition of this girl's absolutely normal developmental response to

her menses. It sounds as though you may be informed on some aspects of

CARING FOR a person with a disability, but you aren't even considering her

normal developmental patterns. SO MANY 14 year-old girls are completely

irritated and see no point in their periods. To them, it's a new, scary,

potentially embarrassing, and challenging addition to their already crazy

adolescent life that for the time being has no purpose. Your logic that she

s already made that decisions is about as sane as if she'd made the decision

to have a baby now...would you support that too? It also seems ironic to me

since this statement by the teenager seems to be the only one that you stand

by and value her autonomy. Coincidentally, it matches your own and her

parents preconceived judgements about people with disabilities.

While I know these words aren't necessarily friendly and it seems you have

good intentions with your work, I really think you need to realize the

entire tone of the way you paint your approach to working with people with

disabilities. It seems only an alliance of you and the parents making all

the decisions based on YOUR thoughts, ideas, and logic. While you recognize

the different challenges these kids will face as adults-you seem to be doing

nothing to empower them to do anything for themselves...as they try to make

their own decisions, they are only overridden before it sounds like you

tried anything other than making up your own mind. I do firmly believe that

in many ways you are doing more damage than the home health aide that used

the bed pan backwards...problems like that can be fixed with education and

information. How have you educated yourself about youth/adults with severe

disabilities and how they CAN marry, have children, or live independently

and not in an institution as you assume will be her fate? Don't you think

this issues are important enough to at least reach beyond your own

judgements? I really do hope you'll consider contacting other organizations

and educating yourself.

~Kara

[Guest guest]

In a message dated 11/4/2006 5:25:21 P.M. Eastern Standard Time,

amandajs_mom@... writes:

she has an IEP but it they still expect too much of her since they know that

she is not the one doing the work - EVEN when she is in class). So instead

they'll keep her in a class setting that does NOTHING for her. They are

limiting her intellectual growth by refusing to have realistic expectations.

I agree with both of you to a point. One of my sons is legally blind and

has to hold his papers inches from his face. the school we pulled him our of

never enlarged his type until the END of the first semester. Then they told

us at his IEP meeting they were going to break him of his habit of holding

his papers close to his face. ITS A MATTER OF COMMON SENSE and in this

instance the school has none...an little respect for there ability to teach as

far

as Im concerned. Another son was a severe preemie. Someone tested him and

decided he was developmentally a 1 1/2 - 2yo and that is sooo wrong. We have

quite interesting conversations. He went to college class with me and

participated appropriately. He is visually impaired and learning disabled in

some

ways BUT HE IS NOT MODERATELY RETARDED. The school has keyholed him in a

class with screamers, non verbals and low functioning DX kids. They failed

to send him to his regular kindergaerten last Friday because they were making

a pumpkin pie. THEY ARE LIMITING HIS INTELLECTUAL GROWTH by placing him in

a class THAT DOES NOTHING FOR HIM. He is a number facilitating their

procurement of federal funding. We have had him independantly tested and will

consult a lawyer if the school refuses to change.

WHY should we have to work so hard to get these kids (and other parents as

well) what they NEED and not what the schools WANT which isnt the same thing?

Its not PC its common sense that is violated. Homeschooling is our only

option for giving him a proper education and frankly that scares me to death.

Apryl

[Guest guest]

Hi Kara,

Curious. How old are you and how much PROFOUND disability have you seen? I

don't mean dwarfism when I say severe disability. No comparison. There are some

disabilities that absolutely are so profound that there is no denying what the

future brings for the person.

Further, when medical doctors who specialize in the field of certain severe

disabilities are all encouraging the parents to start preparing to find her a

'home' because the waiting list is minimum 10 years, then you have to be

realistic.

Her disability is one that affects 1 in 5,000 births (it is actually an error

from the doc in MOST cases that causes it.) MOST of these people have a fair

amount of control over thier body and can lead a very average life. In fact I

know a young woman with the same disability who is marrying a man with the same

disability. They have some MINOR disability. Some have PROFOUND DISABILITY.

Until you've seen the level I am speaking of you have no place to decide my

opinion is dangerous or inflamatory. Nor do you have the right to decide that I

am a dangerous person. I do understand that you do not have the same insights

therefore your opinion is equivilant to the level of knowledge you have

regarding what I was responding to in my post.

Fact is the reason that parents enjoy having me as the one who is caring for

thier child is because I AM an honest person who can understand where they are

coming from AND I am compassionate and would never cause harm in any way. I

don't hide my thoughts behind the politically correct way of thinking. I am one

of the few people who is honest enough to be realistic. I DO NOT EVER initiate

a conversation on such a level with this girls mother. She initiates them. And

because I have cared for her so long I know that her mother is right. OF COURSE

at 14 she is aggravated by her period. All of them are at that age. But no I

have NEVER been the one to open the conversation on any such things. It would

not be ethical of me to bring the topic up.

You should read the WHOLE post and the article this post of mine was in

response to so that you can understand what the post was actually about. It was

not about her period. It wasn't about her marriage prospects. That are only a

couple of pixels within the whole picture. They are things to consider when

thinking of the halting of ones growth.

No she won't have the same life she would have if her disability were to a

lesser degree. This is my realism speaking, just like her specialist knows (as

the encouragement is there to start finding a home for her) If you knew her or

anyone with such a level of disability you'd understand what I am talking about.

Another bit of honesty here, I feel the same way as much of the population

when I say this (But I am one of the few who will be honest about it) and I am

sure that I will be blasted for this but I don't care. I am a realist and I can

tell you that If I were asked on a date by a disabled person I would ONLY say

yes depending upon the LEVEL of disability. No I am NOT a cold, biggoted

person. I just know that I don't want to spend my entire life providing 100%

care for a spouse. Not when the choice is available. Obviously if my husband

broke his neck tomorrow I would still love him and do all that I could to make

his life as enjoyable as possible. But I would NOT CHOOSE that. Until you know

how serious the impact of such a commitment is to a person who requires that

level of care, you can't honestly say that I am wrong in prejudging her destiny.

All people in her life know it and so does she. Honestly, everyone in her

life would question the intentions of a man who would want to marry her. She is

in such a position to be so submissive, neglected and abused that one would have

to wonder what a man is getting in return from this relationship. NOTHING on

the body works accept the mind which is unfortunately so disturbed by her lack

of control over her life.

My original post was a response to a post that was regarding stopping the

growth of a child with profound disability. If the growth is halted she can be

cared for at home by her family for many many more years. That is what this was

all about. That is the issue that matters most when talking about PROFOUND

disability. If the quality of life can be maintained for many more years if the

body is of managable size than that is a very POSITIVE thing to do for a person

in such a position in life.

Amy

Kara Sheridan <KaraWSU@...> wrote:

Wow...I'm not sure if you realize how inflammatory may of your

statements

were...I admire that you didn't preface them with the usual fears of

upsetting people and I recognize that you have years of experience as a home

health aide however...In my opinion I find you as dangerous to work with

(the parents of) people with disabilities as the aides you mentioned that

were uninformed on proper use of some medical equipment. It is NEVER ethical

for a parent or anyone else other than an adult with a disability to make

decisions about their life that would have permanent life-altering effects,

like having a hysterectomy. First, I'm really offended that you seem

comforted with YOUR knowledge that she will never get married and have

children. I completely understand why she feels that way right now because

that's a common feeling for an adolescent with a disability and I personally

relate to her..I just think it's a tragedy that because her level of

disability you and those around here are in full agreement. I'm not being

unrealistic of sugar-coating her situation..It sounds like she has a severe

disability and no-she may not meet her husband in the same way that many AB

s do but I know many many couples or individuals who have found a soul mate

and also have very severe disabilities. Secondly, I am further concerned by

your recognition of this girl's absolutely normal developmental response to

her menses. It sounds as though you may be informed on some aspects of

CARING FOR a person with a disability, but you aren't even considering her

normal developmental patterns. SO MANY 14 year-old girls are completely

irritated and see no point in their periods. To them, it's a new, scary,

potentially embarrassing, and challenging addition to their already crazy

adolescent life that for the time being has no purpose. Your logic that she

s already made that decisions is about as sane as if she'd made the decision

to have a baby now...would you support that too? It also seems ironic to me

since this statement by the teenager seems to be the only one that you stand

by and value her autonomy. Coincidentally, it matches your own and her

parents preconceived judgements about people with disabilities.

While I know these words aren't necessarily friendly and it seems you have

good intentions with your work, I really think you need to realize the

entire tone of the way you paint your approach to working with people with

disabilities. It seems only an alliance of you and the parents making all

the decisions based on YOUR thoughts, ideas, and logic. While you recognize

the different challenges these kids will face as adults-you seem to be doing

nothing to empower them to do anything for themselves...as they try to make

their own decisions, they are only overridden before it sounds like you

tried anything other than making up your own mind. I do firmly believe that

in many ways you are doing more damage than the home health aide that used

the bed pan backwards...problems like that can be fixed with education and

information. How have you educated yourself about youth/adults with severe

disabilities and how they CAN marry, have children, or live independently

and not in an institution as you assume will be her fate? Don't you think

this issues are important enough to at least reach beyond your own

judgements? I really do hope you'll consider contacting other organizations

and educating yourself.

~Kara

[Guest guest]

(moderator's note -- previous replies in this lengthy thread have been removed

but this message has not been touched.)

Amy,

I'll grant your curiosity..I'm 26 years old. I have a little curiosity of my

own-what's your level of education? Experience related to disability

culture? Experience related to the independent living movement? Experience

with any ONE individual who does have a profound disability and lives a

positive life WITHOUT living with their family? And most importantly...what

s your experience living as a person WITH A disability?

I'm currently working on my doctoral degree in clinical psychology with a

clinical and research emphasis on people with disabilities and their VERY

real experiences in our society within the realm of these issues

(transitioning to adulthood, finding housing with intense medical needs,

reproductive concerns (including the risk of abuse), relationship issues,

autonomy, and self-advocacy. I also am an extremely active advocate working

on the issues that you see as hopeless (like options other than the " home " )

as a Governing Board member of the National Youth Leadership Network.

Through my experiences with advocacy I've met many people with the level

that you would (capitalize) and decide to be profound. I have several

personal friends that would fit this categorization that to you

believe-apparently strips a person of their rights to even the most basic

things (ovaries being one of many you've mentioned as pointless). I've also

had the opportunity to meet and learn from amazing leaders who've made my

life better as a person with a disability and they too would be considered

*gasp*profound. Last, I have my own disability so I undoubtedly do have an

entirely different perspective than you-one much more focused on what life

TRULY is like with a disability. You cannot create that no matter how many

clients you have or how tuned in you may think you are with your daughter.

I'm a little surprised since you do have a daughter with a disability that

you are so blinded by the medical model of disability and seem to be

comforted by whatever words fall from the mouth of a medical professional.

How many of us were given accurate predictions of our life based on our

birth with a disability? I know I wasn't and many more weren't either. That

s not to be a bash on doctors..they've helped my quality of life greatly.

But be real-in the vast majority of cases they have absolutely not

training/education on issues related to disability, like transitioning to

adulthood and finding housing. Would you ask your gynecologist where would

be the best place for you to live next year? So~why do you embrace his words

that's she's destined for a home? You seem a little delusional on the doctor

s and your own ability to read the future for another PERSON. (unless you

have psychic powers that you didn't mention).

I'm totally sure the mother does love you coming...you validate and

reinforce her own judgements about her daughter. Instead of bringing a

different perspective of other possibilities beyond the boundaries of their

house, it appears you are another yes-woman that her daughter will have

precisely the life she thinks she will....one that is not viable without the

constant supervision of her parents, one without intimate relationships of

any kind, and one that will continue to be psychologically damaging to the

extent that she is not even given the chance to make even the most basic

choices. Apparently, you have heard somewhere (maybe in your HHA training?)

that if you don't bring up conversations, you have less ethical

responsibility for which actions might follow. If this is the case, you have

been misinformed. Some of the decisions you insinuate to could be considered

abusive and definitely a violation of her rights and the prospect of who

brought up the conversation has no bearing whatsoever.

Your honesty was interesting that your judgement of someone's worth as your

partner would be based on their level of physical functioning...for your own

good-I hope you considered your current mate's emotional functioning to the

same level (in all seriousness)...while some may be taken aback by your

statement, I can share my own honesty (and others) that I wasn't one bit

surprised that you'd make such decisions based on disability...That was

already abundantly clear. In YOUR REALITY, a severe disability equals a

worthless life and you clearly would want no part in sharing that. I would

encourage you to consider statements like..

" Honestly, everyone in her life would question the intentions of a man who

would want to marry her. She is in such a position to be so submissive,

neglected and abused that one would have to wonder what a man is getting in

return from this relationship. NOTHING on the body works accept the mind

which is unfortunately so disturbed by her lack of control over her life. "

Many of us who feel so passionately about the rights and dignity of people

with disabilities could come to the identical conclusion after reading your

thoughts but of course-that's ridiculous...Even beyond the somewhat

Pollyanna belief that there's someone out there for everyone, is the point

that you DO NOT HAVE THE RIGHT to decide or tell this girl that she has

NOTHING to give someone. This belief is even insulting to me as a woman..

because NOTHING in her body " works " in your opinion (which in and of itself

is a sign of the ignorance you have related to sexuality issues and

disability) you think this young woman could bring " NOTHING " to man.....

I thought I'd end on your own words above that her " mind is unfortunately so

disturbed by her lack of control over her life. " I'm sure this is the case-I

m extremely worried for this young girl and to be honest-others that you

work with. You are doing her harm....your intention or belief that you are

not has no bearing. By ignoring her existence as a PERSON with rights and

dignity and appointing yourself and even her parents and " specialists " as

the owners of her as property and the fortune tellers of the future...you

are undoubtedly doing her harm.....and everyone else within the disability

community as presenting yourself as an ally. Harsh-but real.

~Kara

[Guest guest]

Hi Kara,

Wow, you think I base my opinions on 1 person? No. I have cared for many

people with various levels of disability. Professionally, the relationships

have been a minimum of 1 year each. Personal relationships still exist with the

kids and the families.

You should be proud of yourself to be recieving such an education. The

downside to such education is the persistance of the 'PC way of thinking.'

Granted, there are some RARE individuals with such levels of disability that are

able to find a life partner. That rare instance is not enough reason to expect

that all individuals with such levels will find a partner.

The push from the college educated to get ALL people to live independantly is

to some degree absurd. Yes, there is some level of 'idependant living' that can

be achieved by anyone who is so profoundly disabled. For instance the girl I

care for can decide if she'd like a shower before her homework or after her

homework. There is another interesting thing. Because of the PC way of

thinking she is doing the same amount of homework as every other kid in school.

But realistically, when her mother is helping her, it takes so long before one

page is done that her mother will do it for her. If I am helping her we manage

to complete about 2 math problems and a reading log. Why? I won't do it for

her. I insist that she participate and work out the problems with me as I do

the writing. The reading log, I read to her for 20 minutes becuase she

comprehends when words flow more fluidly and then I have to insist that she tell

me what to write on her paper. That is the only

way she gets any homework done and she gets 0 on all the rest because it is

politically correct to have her doing as much as everyone else. You knowhow

long it takes to do 2 math problems (on a paper she will recieve a 10 on because

she doesn't do the rest) and one 20 minute reading session and 2 sentance

summary? It takes about 4 hours of her day. I DO encourage her to do what she

can. What the schools expect out of her is ludicrous. At school she has an

aide who writes it all while the teacher gives lessons and (I'll give her a fake

name at this point) Joan stares off into space. It is well understood that a

person who is unable to actually take part in doing the work (which Joan can't

since the teacher has limited time to give a lesson to multiple kids - so the

aide has to do all of the writing of the lessons - therefore Joan is not at all

involved), is very unlikely to get any benifit from it. Does she belong in this

classroom setting? No she doesn't. But

Goodness, she might be completely independant someday so she can't get placed

in a smaller classroom which teaches everything at a different pace because she

might not get ahead someday. (And yes, she has been evaluated repeatedly and

she has an IEP but it they still expect too much of her since they know that she

is not the one doing the work - EVEN when she is in class). So instead they'll

keep her in a class setting that does NOTHING for her. They are limiting her

intellectual growth by refusing to have realistic expectations. She is only

slightly impaired intellectually. If she were able to participate in her

current setting she would probably do very well. Instead she's so far behind

this year that she will end up repeating the year. Well, that is going to be

just wonderful for her emotionally.

Independant living. Her brother is also profoundly disabled. Some

differences. He has 2 fingers with which he can type. he speaks very clearly.

He can control his bodily functions. So he has to have his HHA get him on the

toilet for those times when a toilet is required. He can feed himself some

foods. He is an educated individual who at 20 years old is currently deciding

what he'd like to major in in college. He has a girlfriend and is realistic

about his life. He knows very well that his relationship may or may not last.

If it does and he someday marries, maybe they'll have kids. He will still

reqiure aids to care for him at all times. It is dangerous for him ever to be

left alone and he would never want his wife to get him on the toilet for a BM,

or in the shower to be bathed. And you know very well that this is RARE. There

are differences that most 'educated people' choose to overlook and in the

process cause more harm to most people while only helping

those few rare people. Joans level of disability is a step further.

As for the ovaries. I did not say that a parent SHOULD have them removed. I

actually think there is an ethical issue. I understand why in some cases it

really would be the right thing to do. With a person who is ALSO profoundly

MENTALLY disabled I see no reason to deny the request of a parent. A person who

is severely physically disabled with no severe mental deficit poses ethical

questions. If a parent wants this done but the child is not mentally impaired

the parent would have to make this choice while the child is still extremely

young, so the child has no input. This is where it is tricky. Since the 5 or 6

year old child has no input is it the right thing to do?

I DO agree IF THE PARENTS have considered EVERYTHING very carefully. They

would certainly have to have a firm grasp on the future for thier child the way

it VERY REALISTICALLY WILL BE - NOT the 'PC veiw of what every educated person

would like it to be'. Also, they should be informed about what the 'possibility

for independance' is.

Personally, I would NOT do that to my child. There are alot of things I would

not do but I would still SUPPORT for another person.

Oh and I NEVER tell Joan she has nothing to offer people. I am continuously

encouraging her to be receptive to efforts of other people to friendly so that

she can build friendships with people because as I point out to her daily, she

actully has a good sense of humor (if she finds a moment in her day when she is

anything but angry). Further I DO encourage her mother to stop giving Joan

excuses for her behavior. When Joan spends the whole day screaming and her

mother says " Oh It's ok. I know you can't help it. " I say to her mother, " You

keep reinforcing her issues when you excuse her behavior. Maybe if you held her

accountable for her behavior she would learn to get some control and learn how

to express herself age appropriately. Maybe then kids her age would be more

likely to enjoy her company. "

I also tell Joan the same thing. When she screams at me to do something. I

will always say, " Joan I am a person. You can tell me what you want without

screaming. Further once in a while a please or a think you would be the right

thing to say. " She then screams " I can't help it! I scream because I am

disabled. My mother keeps telling you that. " I respond, " Well, your brother

doesn't scream at everyone Joan. You cannot keep using your disability as an

excuse. It is your behavior and your mind that you need to focus on and you

will find yourself a happier person. " You know what? Joan then will say, " I'm

sorry Amy " and then she will ASK me to get whatever it is she wants.

I am not the idiot you think I am. And further, since you mention my

daughter. My daughter can do anything she wants in life. Even if she were

disabled to such a level (and thankfully she's not) she could still be a very

productive person with plenty to offer society as a whole, Never mind an

individual person. That is because of her attitude. I have never and will

never be someone who ever tells a disabled person (including the girl I care

for) that she has nothing to offer. I always try to look at the positive.

Everyone has something to offer. It is a matter of knowing what it is and

getting at it. AND being realistic with what it is they can do or give. If my

daughter had Joans mom then my daughter would probably settle for a regular

everyday job in a regular everyday life or even worse. May she would do

nothing. My daughter wants to be an archaeologist. She is going to school to

study Ancient History.

You don't know it all just because you have an education. I don't know it all

just because of what I do every day for many years. I am just a realistic

person. There are some, I repeat, some people with such disability who are able

to actually reach a level of independant living beyond telling the aid when they

have to go to the bathroom or being able to open thier mouth for the food being

put into it. There are so many, many, many more with profound disability who

end up getting hurt because of the push from the educated community who focus on

the few.

Joan is one who'll be hurt, OK, I'll be more agreeable to you here, MOST

LIKELY be hurt because she will not be able to look at other prospects aside

from institutional life. The 'Homes' that have people with severe disability

have thier limits of who to accept. Joans older brother has been trying to get

into one for over a year. They ALL reject him because he requires TOO MUCH

CARE. They have suggested he look into an institution. He has decided to stay

at moms house until he graduates from college and has his career on track and

hopefully afford to have a place to live that he can have fixed to his needs.

I am done now Kara.

Amy

v\:* {behavior:url (#default#vml);} v\:* { BEHAVIOR: url

(#default#vml) } FLAVOR00-NONE-0000-0000-000000000000 4.0 ;

Amy,

I'll grant your curiosity..I'm 26 years old. I have a little curiosity of my

own-what's your level of education? Experience related to disability culture?

Experience related to the independent living movement? Experience with any ONE

individual who does have a profound disability and lives a positive life WITHOUT

living with their family? And most importantly...what's your experience living

as a person WITH A disability?

I'm currently working on my doctoral degree in clinical psychology with a

clinical and research emphasis on people with disabilities and their VERY real

experiences in our society within the realm of these issues (transitioning to

adulthood, finding housing with intense medical needs, reproductive concerns

(including the risk of abuse), relationship issues, autonomy, and self-advocacy.

I also am an extremely active advocate working on the issues that you see as

hopeless (like options other than the " home " ) as a Governing Board member of the

National Youth Leadership Network. Through my experiences with advocacy I've met

many people with the level that you would (capitalize) and decide to be

profound. I have several personal friends that would fit this categorization

that to you believe-apparently strips a person of their rights to even the most

basic things (ovaries being one of many you've mentioned as pointless). I've

also had the opportunity to meet and learn from

amazing leaders who've made my life better as a person with a disability and

they too would be considered *gasp*profound. Last, I have my own disability so I

undoubtedly do have an entirely different perspective than you-one much more

focused on what life TRULY is like with a disability. You cannot create that no

matter how many clients you have or how tuned in you may think you are with your

daughter.

I'm a little surprised since you do have a daughter with a disability that you

are so blinded by the medical model of disability and seem to be comforted by

whatever words fall from the mouth of a medical professional. How many of us

were given accurate predictions of our life based on our birth with a

disability? I know I wasn't and many more weren't either. That's not to be a

bash on doctors..they've helped my quality of life greatly. But be real-in the

vast majority of cases they have absolutely not training/education on issues

related to disability, like transitioning to adulthood and finding housing.

Would you ask your gynecologist where would be the best place for you to live

next year? So~why do you embrace his words that's she's destined for a home? You

seem a little delusional on the doctor's and your own ability to read the future

for another PERSON. (unless you have psychic powers that you didn't mention).

I'm totally sure the mother does love you coming...you validate and reinforce

her own judgements about her daughter. Instead of bringing a different

perspective of other possibilities beyond the boundaries of their house, it

appears you are another yes-woman that her daughter will have precisely the life

she thinks she will....one that is not viable without the constant supervision

of her parents, one without intimate relationships of any kind, and one that

will continue to be psychologically damaging to the extent that she is not even

given the chance to make even the most basic choices. Apparently, you have heard

somewhere (maybe in your HHA training?) that if you don't bring up

conversations, you have less ethical responsibility for which actions might

follow. If this is the case, you have been misinformed. Some of the decisions

you insinuate to could be considered abusive and definitely a violation of her

rights and the prospect of who brought up the conversation has

no bearing whatsoever.

Your honesty was interesting that your judgement of someone's worth as your

partner would be based on their level of physical functioning...for your own

good-I hope you considered your current mate's emotional functioning to the same

level (in all seriousness)...while some may be taken aback by your statement, I

can share my own honesty (and others) that I wasn't one bit surprised that you'd

make such decisions based on disability...That was already abundantly clear. In

YOUR REALITY, a severe disability equals a worthless life and you clearly would

want no part in sharing that. I would encourage you to consider statements

like..

" Honestly, everyone in her life would question the intentions of a man who

would want to marry her. She is in such a position to be so submissive,

neglected and abused that one would have to wonder what a man is getting in

return from this relationship. NOTHING on the body works accept the mind which

is unfortunately so disturbed by her lack of control over her life. "

Many of us who feel so passionately about the rights and dignity of people

with disabilities could come to the identical conclusion after reading your

thoughts but of course-that's ridiculous...Even beyond the somewhat Pollyanna

belief that there's someone out there for everyone, is the point that you DO NOT

HAVE THE RIGHT to decide or tell this girl that she has NOTHING to give someone.

This belief is even insulting to me as a woman...because NOTHING in her body

" works " in your opinion (which in and of itself is a sign of the ignorance you

have related to sexuality issues and disability) you think this young woman

could bring " NOTHING " to man.....

I thought I'd end on your own words above that her " mind is unfortunately so

disturbed by her lack of control over her life. " I'm sure this is the case-I'm

extremely worried for this young girl and to be honest-others that you work

with. You are doing her harm....your intention or belief that you are not has no

bearing. By ignoring her existence as a PERSON with rights and dignity and

appointing yourself and even her parents and " specialists " as the owners of her

as property and the fortune tellers of the future...you are undoubtedly doing

her harm.....and everyone else within the disability community as presenting

yourself as an ally. Harsh-but real.

~Kara

-- Re: Re: intentional dwarfism, huh?

Hi Kara,

Curious. How old are you and how much PROFOUND disability have you seen? I

don't mean dwarfism when I say severe disability. No comparison. There are some

disabilities that absolutely are so profound that there is no denying what the

future brings for the person.

Further, when medical doctors who specialize in the field of certain severe

disabilities are all encouraging the parents to start preparing to find her a

'home' because the waiting list is minimum 10 years, then you have to be

realistic.

Her disability is one that affects 1 in 5,000 births (it is actually an error

from the doc in MOST cases that causes it.) MOST of these people have a fair

amount of control over thier body and can lead a very average life. In fact I

know a young woman with the same disability who is marrying a man with the same

disability. They have some MINOR disability. Some have PROFOUND DISABILITY.

Until you've seen the level I am speaking of you have no place to decide my

opinion is dangerous or inflamatory. Nor do you have the right to decide that I

am a dangerous person. I do understand that you do not have the same insights

therefore your opinion is equivilant to the level of knowledge you have

regarding what I was responding to in my post.

Fact is the reason that parents enjoy having me as the one who is caring for

thier child is because I AM an honest person who can understand where they are

coming from AND I am compassionate and would never cause harm in any way. I

don't hide my thoughts behind the politically correct way of thinking. I am one

of the few people who is honest enough to be realistic. I DO NOT EVER initiate

a conversation on such a level with this girls mother. She initiates them. And

because I have cared for her so long I know that her mother is right. OF COURSE

at 14 she is aggravated by her period. All of them are at that age. But no I

have NEVER been the one to open the conversation on any such things. It would

not be ethical of me to bring the topic up.

You should read the WHOLE post and the article this post of mine was in

response to so that you can understand what the post was actually about. It was

not about her period. It wasn't about her marriage prospects. That are only a

couple of pixels within the whole picture. They are things to consider when

thinking of the halting of ones growth.

No she won't have the same life she would have if her disability were to a

lesser degree. This is my realism speaking, just like her specialist knows (as

the encouragement is there to start finding a home for her) If you knew her or

anyone with such a level of disability you'd understand what I am talking about.

Another bit of honesty here, I feel the same way as much of the population

when I say this (But I am one of the few who will be honest about it) and I am

sure that I will be blasted for this but I don't care. I am a realist and I can

tell you that If I were asked on a date by a disabled person I would ONLY say

yes depending upon the LEVEL of disability. No I am NOT a cold, biggoted

person. I just know that I don't want to spend my entire life providing 100%

care for a spouse. Not when the choice is available. Obviously if my husband

broke his neck tomorrow I would still love him and do all that I could to make

his life as enjoyable as possible. But I would NOT CHOOSE that. Until you know

how serious the impact of such a commitment is to a person who requires that

level of care, you can't honestly say that I am wrong in prejudging her destiny.

All people in her life know it and so does she. Honestly, everyone in her

life would question the intentions of a man who would want to marry her. She is

in such a position to be so submissive, neglected and abused that one would have

to wonder what a man is getting in return from this relationship. NOTHING on

the body works accept the mind which is unfortunately so disturbed by her lack

of control over her life.

My original post was a response to a post that was regarding stopping the

growth of a child with profound disability. If the growth is halted she can be

cared for at home by her family for many many more years. That is what this was

all about. That is the issue that matters most when talking about PROFOUND

disability. If the quality of life can be maintained for many more years if the

body is of managable size than that is a very POSITIVE thing to do for a person

in such a position in life.

Amy

Kara Sheridan <KaraWSU@...> wrote:

Wow...I'm not sure if you realize how inflammatory may of your

statements

were...I admire that you didn't preface them with the usual fears of

upsetting people and I recognize that you have years of experience as a home

health aide however...In my opinion I find you as dangerous to work with

(the parents of) people with disabilities as the aides you mentioned that

were uninformed on proper use of some medical equipment. It is NEVER ethical

for a parent or anyone else other than an adult with a disability to make

decisions about their life that would have permanent life-altering effects,

like having a hysterectomy. First, I'm really offended that you seem

comforted with YOUR knowledge that she will never get married and have

children. I completely understand why she feels that way right now because

that's a common feeling for an adolescent with a disability and I personally

relate to her..I just think it's a tragedy that because her level of

disability you and those around here are in full agreement. I'm not being

unrealistic of sugar-coating her situation..It sounds like she has a severe

disability and no-she may not meet her husband in the same way that many AB

s do but I know many many couples or individuals who have found a soul mate

and also have very severe disabilities. Secondly, I am further concerned by

your recognition of this girl's absolutely normal developmental response to

her menses. It sounds as though you may be informed on some aspects of

CARING FOR a person with a disability, but you aren't even considering her

normal developmental patterns. SO MANY 14 year-old girls are completely

irritated and see no point in their periods. To them, it's a new, scary,

potentially embarrassing, and challenging addition to their already crazy

adolescent life that for the time being has no purpose. Your logic that she

s already made that decisions is about as sane as if she'd made the decision

to have a baby now...would you support that too? It also seems ironic to me

since this statement by the teenager seems to be the only one that you stand

by and value her autonomy. Coincidentally, it matches your own and her

parents preconceived judgements about people with disabilities.

While I know these words aren't necessarily friendly and it seems you have

good intentions with your work, I really think you need to realize the

entire tone of the way you paint your approach to working with people with

disabilities. It seems only an alliance of you and the parents making all

the decisions based on YOUR thoughts, ideas, and logic. While you recognize

the different challenges these kids will face as adults-you seem to be doing

nothing to empower them to do anything for themselves...as they try to make

their own decisions, they are only overridden before it sounds like you

tried anything other than making up your own mind. I do firmly believe that

in many ways you are doing more damage than the home health aide that used

the bed pan backwards...problems like that can be fixed with education and

information. How have you educated yourself about youth/adults with severe

disabilities and how they CAN marry, have children, or live independently

and not in an institution as you assume will be her fate? Don't you think

this issues are important enough to at least reach beyond your own

judgements? I really do hope you'll consider contacting other organizations

and educating yourself.

~Kara

[Guest guest]

[moderator's note -- the 5 very lengthy previous posts in this thread were

trimmed from this posting. however, nothing has been changed or editted from

these words.]

No, I don't think you base your relationships on the one person-you

explained you've had many clients. While that was clear to me I'm not sure

how you missed a similar portion of my post which differentiated my

educational/research experience from personal/advocacy activities I've had

with people with disabilities. It always amazes me when people outside of a

minority (and part of the oppressive group) immediately point to the

short-sightedness of political correctness......Beyond me pointing out your

statements judging my culture I'm not clear on where the political

correctness factors into this debate. I thought you did a decent job with

your language and professional manner of explaining your situation. I don't

really view discussions of ethics, autonomy, and dignity as over-doses of

political correctness. Yes, they are touchy, but we can't always take the

out " that it's the politically correct (or not correct) people that don't

know what they are talking about. I've encountered both who definitely didn

t get it.

It's also an unfortunate assumption that you seem to view those with high

levels of education as somewhat no longer in touch...I agree, there are MANY

highly educated able-bodied professionals that are not in touch with the

reality of life with a disability-I'm sure there are a few of us with

disabilities in that category as well too....but your logic of affirming the

random recommendations from " specialists " but then discounting someone with

a more focused degree doesn't make sense. Also, you'd be surprised how much

those involved AND educated about people with disabilities would agree with

much of what you feel so passionately about....It is not the " PC people " or

even the over-educated that are the only one's responsible for the barriers

to education that Joan is experiencing. THIS is why advocacy and her parents

yours, and HER education about her rights and alternatives to what you've

described is so important. There ARE other options and I'm not even

declaring it's your responsibility to go out there and get them but I think

deep down you know they are there because I'm sure you've been told there's

no other way before with your daughter and you, her, or both of you together

have in fact found another way.

I'm glad that you found the inflexibility in your own thinking-at least the

way you presented it-by recognizing at least one example of a person with a

(judged to be profound by you) disability in Joan's brother. He's

experiencing the frustration of many with the housing crisis for people with

disabilities. I fully agree-it's a HUGE challenge. But not impossible. It

also sounds like you recognize behavior patterns in Joan that may be holding

her back socially......those, again, if anyone cared to look for a way,

could be improved. She just needs help maturing as a teenager like any other

young person. I never ever stated that I believe everyone could, should, or

even wants to live independently. I just see this problem as one with the

parents (and you as an extension) that could potentially contaminate the

rest of Joan's life. My point was there were options.... And I'm glad you've

changed at least some of the decisive and presumptive nature of your

previous statements. (I'm only being vague on the options related to housing

and education to save the rambling to those that aren't as interested, but

if you truly did want contact, I hope you will ask for those.) From the

little information I have-it seems the parents (as is often the case) are

prioritizing their own emotional needs over what may really be best for Joan

In regards to the ethical ovaries question :-) I think where we are missing

each other here is if the person with a disability is not mentally competent

to make such a decision then a person with that person's best interest is

(and should legally) be involved in making this decision. This means an

objective/probably outside person.....these are appointed/available through

organizations. The parent (and you) can THINK they have their child with a

cognitive disability's best interest in mind-but ALWAYS they have other

interest (whether they are malicious or not)....This example-the parents

should not have this decision solely on their shoulders because her

type/needs of care with the addition of a monthly period change to an extent

that they are definitely biased whether they want to be/mean to be or not.

Also, we are not talking about a medically necessary procedure. We are

talking about a completely optional (for her) and VERY SERIOUS procedure.

So-no parents should NOT make a decision about a medical treatment LIKE THIS

for a 5 or 6 year old. A hospital would not allow it. No comparison there.

I do hope that you encourage Joan as you said you do...I still worry that

your mind is so made up I'm sure that comes across as well. And I never

stated or thought you were an " idiot " -not sure where that fits. My only

point in mentioning your daughter is that I can tell you view her

differently than you've got your mind made up about a lot of other " profound

people with disabilities. You see your daughter's reality with promise and

hope....and in thinking of her " reality " you seem to recognize that it's not

quite as black and white as you paint the grim picture for the other more

severe ones of our community. Sure-parenting has a huge role-but I disagree

that it's ONLY the magical combination of your great parenting AND your

daughter's attitude that sets her apart from Joan. Not everyone in the world

differentiates so carefully by severity as you seem to....many think the

same definitive statements that you made about Joan in relation to your

daughter. They label her as having no hope for any sort of future....that is

very very real. And that's why I cared to write back to you. We are all

(Joan, your daughter, and I) in the same boat and the attitudes that we've

debated affect us ALL......When you relate to other professionals about how

hopeless Joan's life is...just realize that these professionals don't think

any differently about your daughter.

~Kara

[Guest guest]

As much as is allowable here, I'm going to stay away from giving my ethical

position or even my moral/religious position on this.

I'm not judging anyone, nor trying to put anyone down here, but does anyone

remember not that long ago what dwarfism was considered?

If you're so inclined, watch Little People (the old or the new version or

both)- it's a great historical perspective.

I'm wondering if in doing this intentional dwarfism whatever we want to call

it, we're not taking 100 steps backwards from progress. Do I want the best

in life for people? Absolutely. But do I think that should come at the

expense of being treated like an animal, or worse, a lab rat? No. Respect

for the individual's autonomy should supersede what everyone else thinks.

Now, should said person be rendered legally incompetent to do so, that opens

a whole other issue. But I don't think that's the issue here.

This gets into stem-cells and a really murky, gray subject with many

complicated issues.

I'm going to steer clear of that for the moment and say this: restricting

someone's movement may seem like you're helping, but in reality, you may

ultimately be hindering them.

We don't need a return to 1950s dwarfism perceptions. Thanks to the work of

countless people, it's not the norm to be called " freakish " or sold to the

circus or whatever inhumane things happened to people like us in the past.

Confining someone just because they have dwarfism is no different. People

talk about the " ideal LP village " - either way, what we don't need is an LP

institution.

Genetically restraining people because we think that's what's best for them

may not be a step toward progress. It would turn independent living we all

hope for or have worked to get, on its head.

[Guest guest]

While this ethical debate is at times fascinating (still waiting for Joe S.

to weigh in here), wouldn't it better served on the Adult LPs list? I'm

not real comfortable discussing topics like menses and hysterectomies on a

list that may have children lurking.

Just a suggestion.

Bill

[Guest guest]

Hi ya Bill and all,

Honestly I've never thought of this list as a kid

friendly list and honestly what would kids get out of

this list anyways?? I truly hope kids are not on this

list to see the pointless bickering when it happens.

But honesly I think there are better and more kid

friendly places to be than this list. If they are on

here then they or their parents will need to deal with

the content that is posted on here. I do not see

anything wrong with ethical debate when it comes to

hysterectomy or menses. It is part of human life,

these are not dirty words but something biological.

It is a parents job to monitor where their children go

on the net. If the child or teen is not supervised

then the parent assumes they trust their child and

what they view. If the word hysterectomy offends a

child or is not child appropriate then maybe this is

not the listserve for the child. Maybe making a child

or teen listserve which I believe does or did exist

would be more appropriate.

Sorry Bill but I disagree with ya here, oh, btw though

I did vote no.

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[Guest guest]

Sorry , but I do strongly disagree with you...

I would agree that this list is not particularly kid-friendly and that

parents should monitor what their kids are doing online. But, the

guidelines of this list rate it at PG (I believe). Normally, I would agree

that natural bodily functions such a menses, and surgery such as

hysterectomies should not be taboo topics for children. However, I would

hope the parents are driving this discussion with their kids and not an

Internet list.

Also, the nature of this debate -- hysterectomies on a severely disabled

child to stunt her growth and prevent menses -- is quite disturbing (ethics

aside) and IS NOT appropriate for children. We do have a list for adults,

and that's where the debate should be held. In my mind, it is equivalent to

talking about abortion, and I certainly don't want an 11-year-old (or

younger) participating in that discussion (outside the home).

[i applaud you for voting no. But, I know you were wise enough to do so

anyway, without my influence.]

Bill

On 11/5/06, irish_p_butter@... <irish_p_butter@...> wrote:

>

> Hi ya Bill and all,

>

> Honestly I've never thought of this list as a kid

> friendly list and honestly what would kids get out of

> this list anyways?? I truly hope kids are not on this

> list to see the pointless bickering when it happens.

> But honesly I think there are better and more kid

> friendly places to be than this list. If they are on

> here then they or their parents will need to deal with

> the content that is posted on here. I do not see

> anything wrong with ethical debate when it comes to

> hysterectomy or menses. It is part of human life,

> these are not dirty words but something biological.

>

> It is a parents job to monitor where their children go

> on the net. If the child or teen is not supervised

> then the parent assumes they trust their child and

> what they view. If the word hysterectomy offends a

> child or is not child appropriate then maybe this is

> not the listserve for the child. Maybe making a child

> or teen listserve which I believe does or did exist

> would be more appropriate.

>

> Sorry Bill but I disagree with ya here, oh, btw though

> I did vote no.

>

>

>

> __________________________________________________________

> Check out the New - Fire up a more powerful email and get

> things done faster.

> (http://advision.webevents./mailbeta)

>

>

>

--

" Strength does not come from physical capacity. It comes from an

indomitable will. "

- Gandhi

" A wise man has great power, and a man of knowledge increases strength "

- Proverbs 24:5

[Guest guest]

Hey ya Bill and all (again),

I have to strongly disagree with your disagreeing to

my statement lol.

Again, why are kids on here? I didn't realize my

reading audience were children, honestly what purpose

does a child get out of this listserve? Not saying

they cannot be on here, but look at our past

discussions, they are adult discussions, honestly I

have more problems with the past bickering that they

would see than about a hysterectomy.

I have no desire to join the Adult Listserve because

quite frankly I belong to soo many.

As you stated it is PG rated, so hey, if a child

brings up the term hysterectomy because of this list

then the parent should think twice about letting their

child read what's on here. PG doesn't mean it will be

Disney world in here, it means some things may not be

exactly appropriate and they need to realize that. If

the list was G rated then yes I would say that is a

topic not to be brought up. It's like a PG movie,

there may be inappropriate things for small ears and

eyes and it's up to the parent's discression, not the

movie's because it already says PG, it doesn't

advertise it's self as G. Same with this list, the

topics on here are PG rated, that's never been hidden.

As far as the ethical debate about a hysterectomy to

prevent menses, as I e-mailed earlier, to prevent that

just take the " it only occurs twice a year " pill. Why

go through unnessary surgery, and honestly I cannot

imagine what the girl goes through but maybe

counseling and joining something like Easter Seals

instead of surgery would be in order, being around

others like her may help her, they do have awesome

Easter Seal camps for children with a wide range of

disabilities. I went to one when I was 14 and there

were many kids in wheelchairs, kids who couldn't dress

themselves, kids who couldn't speak yet it was a

chance for them to " camp " like other kids. They had a

swing you could roll your wheelchair on to, it was

cool.

Oh well, Bill you and I will have to agree to disagree

Plus I need to go back to net surfing to track

down a white NON-prelit 5 foot Christmas tree, you'd

think that would be easy to find. Saw one at Target

but it was pre-lit and 7.5 feet, nooo thanks. I want

to put on blue lights with blue, silver, and white

ornaments.

-

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[Guest guest]

Kara:

Just a quick question. Have you ever been a caregiver?

If not you have no idea of the weight of that responsibility and cannot

speak

to the sometimes unpalatable decisions one has to make in that role

sometimes.

-marty (the lady one)

**********************************************************

Electronic Mail is not secure, may not be read every day, and should not be used

for urgent or sensitive issues.

[Guest guest]

Consider that until recent years and decades, many dwarfs were denied

the right to live independently, and that many were considered

incapable of informed consent, autonomy, self determination and so on

(yes, I'm aware that there have always been some dwarfs who lived

independently, but that was not an opportunity that all had). I

would even argue that independent living, while it is the norm now,

is not a given. Is it such a surprise that some of us think that

those groups that don't have those freedoms now are likely to gain

them in the future? To be liberated, to borrow a phrase from ADAPT.

Consider also that many of us have exposure - either in our own

lives, or through participation in pan-disability groups - to the

reality of needing a caregiver for an extended period of time, or

even permanently, and to the issues of autonomy that come up.

I'd say we (as a group) are very qualified to discuss the issues

brought up here. And Kara's experience and background are directly

applicable ( " working on my doctoral degree in clinical psychology

with a clinical and research emphasis on people with disabilities and

their VERY real experiences in our society within the realm of these

issues " , NYLN, advocacy).

Ian

On Nov 7, 2006, at 10:37 AM, Martha -Merritts wrote:

> Kara:

>

> Just a quick question. Have you ever been a caregiver?

> If not you have no idea of the weight of that responsibility and

> cannot

> speak

> to the sometimes unpalatable decisions one has to make in that role

> sometimes.

>

> -marty (the lady one)

>

>

> **********************************************************

> Electronic Mail is not secure, may not be read every day, and

> should not be used for urgent or sensitive issues.

>

>

> ===

>

[Guest guest]

I've been offline for a couple of weeks here . . . busy with doctors

appointments and such. Thank you, Danny, for such an interesting

subject.

Here's my little story . . . , 13 months, recently saw a

doctor/therapist, I can't remember which one. At the end of the

appointment, they said perhaps may need growth hormone

treatment. Now, in my mind, being as tired as I am with this little

active boy and his doctor appointments, I was thinking, " Are you

high? You don't know what the heck you're talking about. " . But,

what came out of my mouth was nothing. I just wanted to get out of

the office, because it had been such a long appointment.

I appreciate Amy and Kara's input. That's my two cents.

-Ellen

>

> > Kara:

> >

> > Just a quick question. Have you ever been a caregiver?

> > If not you have no idea of the weight of that responsibility

and

> > cannot

> > speak

> > to the sometimes unpalatable decisions one has to make in that

role

> > sometimes.

> >

> > -marty (the lady one)

> >

> >

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> > should not be used for urgent or sensitive issues.

> >

> >

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> >