Re: Digest Number 77

[Guest guest]

onelist wrote:

> Message: 4

> Date: Wed, 26 May 1999 20:40:06 +0200

> From: Dusan Stojkovic <dusan@...>

> Subject: Re: Alternative methods? I don't get it.

>

>

> Dear , I understand you and your opinion.

> In oreder to understand why, you would have to read a book: " Questioning

> Chemothearpy " by Moss.

>

> Dusan

>

> Did you know that 30 years ago Dr Hardin B. , Professor of Medical

> Physics & Physiology at

> Berkeley, found that the life expectancy of untreated cancer cases appears

> to be FOUR TIMES

> LONGER than that of treated individuals?

The doctors said that if my mom refused to get treatment for her leukemia back

in June, she would only have had 1 year to live. My family and her thought that

she would have nothing to lose and would prolong her life by starting treatment,

and it was an excellent choice. Besides, since her leukemia is curable, isn't it

better to _live_ longer than to die w/in a year? Which choice would you have

chosen?

> Message: 6

> Date: Wed, 26 May 1999 11:37:30 -0700

> From: " Lori DeClercq " <mdeclerc@...>

> Subject: Re: Alternative methods? I don't get it.

>

> Gosh, , I too would like to believe that the medical profession knows

best, but I have come to the realization that it just is not true! I believe

our doctor has Matt's best interests at heart, but I think cancer treatment for

most types is incredibly limited in the time of survival vs quality of life it

offers. Patients and families have to feel we have some, even if just a little,

control over what is happening; perhaps the successes are anecdotal, I DON'T

CARE!!! The stories I have read about alternative treatments have given me

HOPE!!! We will follow conventional treatment, too if needed, BUT we believe

the little lifestyle change we have made by following alternative methods is

helping; if one BELIEVES isn't that half the battle??? This is a very personal

decision that each person battling this disease makes; I would never belittle

one who believes strictly and completely in modern medicine; I expect the same

courtesy from the doctors, our families and friends as we

> chose to fight this both ways!!! Doctors don't always know what is best!!!!!

We trust our doctor, but the disease we are battling does not have positive

stats; we are survivors because we believe we can help ourselves fight the demon

PC!!

> Lori (Matt, husband/PC dx 12/3/98)

Lori: Thanks for responding. I don't know how to bring it up to my mother or to

the doc's about what if she could add alternative medicines/methods along with

her regular treatments. I lost my mom's doc's email addresses, so I will have to

get them via RPCI's website. I don't know what good it could do with my mom's

acute leukemia (forgot what type it is)... does anyone here have or know of

anyone who also has Acute Leukemia? Good luck to you both.

> Message: 7

> Date: Wed, 26 May 1999 21:19:36 +0200

> From: Dusan Stojkovic <dusan@...>

> Subject: Re: Alternative methods? I don't get it.

>

>

> Re: Alternative methods? I don't get it.

>

> ,

> There is nothing wrong with chemo unless you don't like poison put into your

> veins. You may not die of the cancer but the side effects of the chemo

> destroy other things like your immune system. Honestly, there are a few

> cancers that chemo work for your Mom's may have been one. I feel Dr. are too

> quick to throw the chemo bombs at us, as if we were all the same. I chose

> after one chemo treatment to go natural, and time will tell the results but I

> am cancer free at this point. I will keep everyone posted on progress if

> interested. I have made major changes in my life instead of chemo and

> radiation. This is with mostly the help of God I might add.

> Hopes this helps.

> JA

Thanks for replying. I have to look into this stuff. Is anyone ever really

'cancer-free'? Doesn't cancer just keep going into remission all the time?

Again, I am new, so please don't be upset by my naiveness!

--

Kozak in Borlänge, Sweden

http://www.ductape.net/~heather

" Yes I know what you think of me, you never shut up. " -(Tori Amos)

[Guest guest]

Hello all,

I am wanting to try mp soaps, but I would like to know where to buy this

" wholesale " . Any ideas? I can buy retail from several sites, but the

prices are quite high. I am only interested in buying wholesale.

TIA

K

[Guest guest]

Thanks for clarifying the acronyms!

[Guest guest]

RFFC stands for receptive feature function class; which is an acronym for a

skill that requires a child to receptively identify a feature, function, or

class of a presented item.

The ABLLS is a comprehensive assessment, curriculum guide, and skill

tracking system developed by Partington & Sundberg. The acronym ABLLS

stands for The Assessment of Basic Language and Learning Skills.

Hope that helped!

[Guest guest]

< Ben had used one five pound bag of

King Arthur stone ground whole wheat flour to turn the playroom floor into

a sandbox- now, of course, a flourbox. >

This is too funny. When I was pregnant, and we just moved into the bigger

house, did the same thing with a whole bottle of Baby Powder. DH had left

it down where he could get at it. Same thing with us, we just had to laugh.

But baby powder is much harder to clean up, because it is SO fine. It's been

almost a year, and even though I've mopped his floor several times, there's

still a slick spot right at his door that if my feet are real dry, I slide. (we

have tile floors - gotta love that Navy housing).

Loriann

[Guest guest]

Maureen:

Guess what????? DH AGREED to try on Risperdal tonight....supposed to

start out at 1mg. cut in half...which is .50mg?? Anyway, DH said what good

can it do at night??? but that's what doc said, to help him sleep better and

sleep off side effects....then, once that is established, we will go to some

kind of daytime dosage and cut down on current meds he's taking......

I feel guilty saying about all the stress we're under when you've been

through hell and back with ....how is she doing, by the way? Keep us

posted on the Risperdal......how much does she weigh?

I am so glad DH has agreed to try.....I felt so bad trying it on the

" sneak " .....maybe God " woke " him up.........

Thanks for sharing.....I'll keep you all posted as well......

:-)

P.S. And yes, I printed out all the positive comments about Risperdal...it

was like talking to brick wall.....well, maybe not, now that he's agreed!

[Guest guest]

mary beth, hehe i love this story!!!!!! sounds like peter ben keeps you on

your toes too....its hard when they do wrong things, but somehow right at the

same time........ i know the feeling well....... take care and enjoy the

pictures.....leah

[Guest guest]

laura, come see me and leave dh in charge of sean and josh and see how he

does for about three days...... hehee we can sit by the pool and drink kowboy

koolaid.....mb is righ, maybe he will finally see the light....... i know me

and my dh have gone over this stuff and more, i can actually say hes coming

around...at least he know sees why i am pushing for the full inclusion, lre

for ashton supports me.....shock the dookie off my feet....lmao take care and

we are thinking of you leah

[Guest guest]

Maureen,

A very belated welcome to the list (I know you've been on for a while now,

but I still havn't made my cheat sheet with parents-kids-locations handy so

I remember better-hahaha!) Bless you and your family for all has to

go through. How absolutely awful for her to have go through all of this

and you know that she's in terror throughout. You are certainly in my

prayers that she recovers from this last round very quickly, and that the

risperdal helps. Refresh my memory, please- what else has she been on?

, that is the BEST news that risperdal is working for !!!! I

love hearing stories like yours. Please keep us posted.

And now, for Ben's latest (gee, when he was three you couldn't get

him to explore the way he is doing these things now). Yesterday was my

work day. I am an organist/musician at my church. I play two Saturday pm

Masses and some weeks I have a wedding. Yesterday was one of those busy

days. Of course, the home health care worker for M-I-L was very late, so

DH had to get her up and help her get dressed. DH is deaf, so if Ben

isn't under his line of vision, UH OH! And lately, Ben is

getting very, very good about biding his time to make mischief. All Daddy

needs to do is go to the bathroom- and PB can strike. He'd had his eye on

a five # bag of whole wheat flour. DH told me that he put it away twice,

even hiding it finally. Well, not well enough. When I got home from the

music marathon, I noticed the pantry door was open. I thought PB had been

looking for bags. (He's into trying to put all kinds of stuff into grocery

bags these days.) But PB has a habit of always shutting the door behind

him. HHMMMM. Didn't bode well. I asked DH what was up- where was PB- and

DH jumped up and ran to the play area. He at first wouldn't let me in to

see what was wrong, but he was also trying not to laugh. (I figured it

couldn't be s--t all over - that is NEVER laughable- ) I finally got a

peek and it really was funny. Ben had used one five pound bag of

King Arthur stone ground whole wheat flour to turn the playroom floor into

a sandbox- now, of course, a flourbox. He was busy sifting it through his

fingers and putting it all over his Joe Namath doll, who had somehow lost

his pants. He was SO happy, and playing so nicely, and the room was SUCH a

disaster... but we had to force ourselves to be mad at him over this.

Because the flour was so lovely and soft, it cleaned up beautifully. It

wasn't as dusty as white flour and more evenly ground than regular whole

wheat flour, so the damage was minimal. I even took photos, because it

really was pretty funny. (I also took a picture of the time he tried to

pick up a watermelon and of course dropped it and it busted all over the

kitchen floor.)

How can I get mad at him when he's finally playing and exploring the way

kids are supposed to? On the other hand, I can't have him repeating this-

and our house is too small for an indoor sand/water table. And it's

raining outside today so we can't do the sandbox at the playground.

Anyway, that was my evening....= ; o

Beth

[Guest guest]

,

I know you're worried about the risperdal, but even anecdotally from this

list, risperdal is clearly one of the more effective drugs for the kids

that are on meds. The odds are really in 's favor that it will work.

And remember, the odds of having a side effect of Tardive Dyskinesia (tics

and odd movements) is something like .0something% . Less than .1% of

people using this- so it is VERY rare as a side effect. Heck, even Ritalin

can cause tremors for some kids!

Ben pretty clearly metabolizes drugs slowly. So his pediatrician

uses that information to figure out a dosing schedule for trying anything

new- and he was on the tiniest amount of anyone that posted here about

risperdal- just .25 mg at bed for 5 weeks. When he had another .125 mg

(half of the .25mg) just every other night, we saw an increase in the wrong

behaviors. Most kids are on more than that, and some WAY more than that-

and compared to the regular dose when this is used by adults for other

diagnoses, they are on much, much larger doses. Also remember, we tried PB

on of Adderall (I forget the mg) - just a 1/4 pill and he was wired for

several days. When decisions are made medically about usefulness of drugs,

at least for the mainstream stuff, the statistics are figured for hundreds

if not thousands of people. On this list we are talking about a couple

handfuls of kids. Very tiny numbers statistically. You CAN'T use the

numbers from this group alone to say that it's highly probable this or

that will happen with if he takes Risperdal. You can say " Risperdal

has shown to be effective to alleviate some of the behaviors associated

with autism and ASD. Doctors recommend it as part of the protocal when

looking at effective medications for kids with autism. " The doctor will

look at what has and hasn't been effective with YOUR son and make as good a

recommendation based on that.

The protocol as I understand it is this:

--try the stimulants, such as Ritalin and Adderall- for hyperactivity.

Also, dexedrine.

--if those are ineffective, try Clonidine for hyperactivity.

--for obsessive-compulsive like behaviors, perseveration, repetitive

movements, anti-social behavior, aggression-- use the SSRI's (selective

serotonin re-uptake inhibitors). These are difficult to dose, because

they have a very long half life. Doctors still like to use prozac first,

because it is older and they have more information about the history of

this drug. The newer generations of SSRI's haven't been used as much as

prozac, but they are showing to be effective and easier to dose. (ZOLOFT,

LUVOX, PAXIL)

--There is a statistical formula that says something like, " roughly x%

(I'm thinking mayber 50%) of people will have a good response to prozac.

For those who can't tolerate prozac, the another 50% of the remaining 50%

will tolerate Zoloft. (Or Paxil- whichever is next on the list.) Then the

remainder will have a percentage which will tolerate another SSRI, but

there will be a percentage for which no SSRI works. " It's called

something like the law of deminishing returns. In other words, the more

SSRI's that are tried that DON'T work, the less likley it is that another

remaining one WILL.

The next area of drugs are the anti-psychotics. Risperdal is one of these,

but remember, it is labeled as such FOR ADULT usage and diagnoses.

(Clonidine, is, afterall, a blood pressure medication!) When you look up

Risperdal on a site such as MEDSCAPE, it will say that " Risperdal is shown

to be generally effective in alleviating some of the behaviors generally

associated with autism " .

I am not as well versed at this point about what is next on the list. I

know there are beta blockers and alpha agonists. I know that buspar is

effective for alleviating fear.

Now I am just repeating all of this stuff in my own words, as I have

understood it. The more I read, talk to my kid's doc, and talk to the

pharmacist, the more it sticks in my brain. Then I feel less worried that I

am not up on my doctor's thinking about this.

S. described very vividly her questioning the residents or interns at

the hospital when Matt was in before Christmas (or was it Thanksgiving?)

and that she was concerned about a drug interaction. This guy looked at

her like why was she questioning his judgement? Turns out, she was right-

and Matt had a long haul afterwards to get turned back around after having

some bad reactions.

Because YOU know your child's body better than anyone, the doctor should be

working very carefully with you to figure out the right thing to do when

recommending meds. It is also up to you to try to keep track of global

behaviors, because ultimately you will be telling the doc whether or not

something is working. Since some meds are slower working, there may be

very subtle changes that you won't notice right away. That is when a

calendar or journal comes in handy. (We use the school notebook as our

meds journal.)

, the only other thing I can suggest is that if you can create an

opportunity for DH to have to be completely in charge of for a few

days, he might get a better sense of just how up against the wall you feel

about 's behaviors- and he might be more willing to consider Risperdal.

Anyway, at the very least, ask the doctor what the backup plan would be if

the risperdal doesn't work.

Good luck!

MB

[Guest guest]

In a message dated 3/19/2000 1:39:57 PM !!!First Boot!!!, paul.3@...

writes:

<< Ben had used one five pound bag of

King Arthur stone ground whole wheat flour to turn the playroom floor into

a sandbox- now, of course, a flourbox. He was busy sifting it through his

fingers and putting it all over his Joe Namath doll, who had somehow lost

his pants. He was SO happy, and playing so nicely, and the room was SUCH a

disaster... but we had to force ourselves to be mad at him over this. >>

ROTFLOL Beth!!!!!! Too funny. I'm so glad you took pics!!!!! I hope

we get to see them. I remember when my first got into a half gallon of

Wesson vegetable oil. We were slip-sliding for weeks on the kitchen

floor......LOL

This reminds me of the Dennis the Mennis cartoon I saw yesterday. Dennis is

being drug into the house by his extremely angry Mom and Dennis is

saying.... " I was having a really great day, til you found out I was having a

really great day " . LOLOLOL PB was probably thinking the same thing!!!!!

Donna

[Guest guest]

In a message dated 3/19/2000 3:51:07 PM !!!First Boot!!!,

stolzfamily@... writes:

<< SO, when she is ready to try (After we are

done with the adderol, which is making Matt more aggressive, like the

ritalin), we are ready. But that has to be decided WITH your husband.

I do agree arranging for him to be sole caretaker for a week or so,

should do it.

S >>

Ok . Count me in full agreement with . I know I am in a totally

different situation and my hubby is not in denial and listens and trusts

everything I say with regard to Maddie. However, you will only damage your

relationship with your DH and that can ONLY hurt your children. Also, try

and reverse the story. What would you do if you found out DH did something

serious without telling you? How would you feel? Whether he is *in the

dark* or not, the fact of the matter is that he thinks he's right. My advice

is to try and compromise. You know, ask him to give it a trial period or

something. You know what they say about honey and vinegar........Anyway, I'm

just passing on my advice. I hope you can work this out!! I'm thinking of

you!! I know how much inner turmoil can rip you apart!!!

{{{{{{{{{hugs}}}}}}}}}}

Donna

[Guest guest]

In a message dated 3/19/2000 4:16:05 PM !!!First Boot!!!, Ltb3105@...

writes:

<<

:-)

P.S. And yes, I printed out all the positive comments about Risperdal...it

was like talking to brick wall.....well, maybe not, now that he's agreed! >>

Glad to hear it !!!! Please do let us know how it goes!!!!

Donna

[Guest guest]

In a message dated 3/19/2000 4:58:34 PM !!!First Boot!!!,

hsmyangel@... writes:

<< This is too funny. When I was pregnant, and we just moved into the bigger

house, did the same thing with a whole bottle of Baby Powder. DH had

left it down where he could get at it. Same thing with us, we just had to

laugh. But baby powder is much harder to clean up, because it is SO fine.

It's been almost a year, and even though I've mopped his floor several times,

there's still a slick spot right at his door that if my feet are real dry, I

slide. (we have tile floors - gotta love that Navy housing).

Loriann >>

Yea, we've had the baby powder *fun* too Loriann. And you're right----it's

BRUTAL to clean up.

Donna

[Guest guest]

Beth,

This sounds so cute! Do you have a way of sharing the pictures you took

with us on the loop? This sounds great!

S

________________________________________________________________

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Juno now offers FREE Internet Access!

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[Guest guest]

,

I have been thinking a long time about your question " Should I give

the Risperidol and not tell DH? "

I would vote resoundingly " NO " .

Let me explain my answer.

YOu and your husband are the primary relationship in the family. and

other children are on temporary " Loan " and they will eventually move out

to their own lives, what ever that may be. I feel very strongly that you

dont' do anything that will undermine that relationship. You can

discuss, plead, whine, stamp you feet, ask, discuss, etc..... but dont'

sneek. IT seems like such a good idea, especially when you " Know " he

needs it and will benefit from it, but it damages your relationship

incredibly. In my mind, nothing is worth that.

I would print out all information you can find on it, including the

" testimonials " on this list, go out to dinner (sans children) and quietly

discuss it.

IF it makes any difference, the psych that I took Matt to, was talking

about Risperidol. I asked her about TD (Tartive Disconisia sp???) and she

said that she didnt' feel there was a chance of it, because we would be

starting on such a small dose and watching so closely and stop

immediately if there are any unwanted movements. She didnt' feel there

was much of any chance that with this the movement disorder would be

permanent if he developed one. SO, when she is ready to try (After we are

done with the adderol, which is making Matt more aggressive, like the

ritalin), we are ready. But that has to be decided WITH your husband.

I do agree arranging for him to be sole caretaker for a week or so,

should do it.

S

________________________________________________________________

YOU'RE PAYING TOO MUCH FOR THE INTERNET!

Juno now offers FREE Internet Access!

Try it today - there's no risk! For your FREE software, visit:

http://dl.www.juno.com/get/tagj.

[Guest guest]

In a message dated 3/19/00 7:40:04 AM Central Standard Time, paul.3@...

writes:

<< Refresh my memory, please- what else has she been on? >>

When she was previously diagnosed with bipolar and ADHD, she was on adderall,

xyprexa and depakote. We took her off of all of those meds before her

surgery, then began risperdal a few days ago. We had wanted to wait longer

before trying another med, but she was such a nervous wreck from the surgery

and its aftermath - not eating, drinking or sleeping for days - that she

needed some relief. Last night she slept from 10 pm to almost 9 am - amazing

for her! Don't know if it's the risperdal - I know she's exhausted and so

glad to finally be home.

Thanks for your prayers and kind words, Beth,

Maureen

[Guest guest]

In a message dated 3/19/00 10:16:03 AM Central Standard Time, Ltb3105@...

writes:

<< DH AGREED to try on Risperdal tonight....supposed to

start out at 1mg. cut in half...which is .50mg?? >>

, that's great! I will pray that reacts favorably and that your

family life improves. I'm so glad it worked out this way.

<<....how is she doing, by the way? Keep us

posted on the Risperdal......how much does she weigh? >>

is home from the hospital now and calming down. Our biggest challenge

is her fighting the cast. She doesn't like it one bit and keeps saying " Up,

up, " and " Off, off. " She whines and cries about it several times a day. I'm

sure it's going to take some time for her to accept things as they are now.

We just have to be patient and very loving.

As for her Risperdal dosage: She is 8 and weighs approx. 60 pounds (at least

she did before surgery!), and her dose is currently .25 mg at bedtime. We're

supposed to add another .25 mg dose in the morning sometime this coming week,

if all goes well. I certainly will keep you posted.

Good luck and I'll be praying - keep us posted also,

Maureen

[Guest guest]

Sara,

Wish I knew about the vinegar when my kids made it " SNOW " with the baby

powder!

will remember when my grandkids do it.

Gail, Mom to Seth(4) jo(7) (9) (22) (24) grandma to

Errick(4) and wife to (my hero)

[Guest guest]

Try vinegar water. There is some mineral oil substance in baby powder - vinegar

water should cut right through it.

Sara

>>> duffey48@... - 03/19/0 3:13 PM >>>

From: duffey48@...

In a message dated 3/19/2000 4:58:34 PM !!!First Boot!!!,

hsmyangel@... writes:

<< This is too funny. When I was pregnant, and we just moved into the bigger

house, did the same thing with a whole bottle of Baby Powder. DH had

left it down where he could get at it. Same thing with us, we just had to

laugh. But baby powder is much harder to clean up, because it is SO fine.

It's been almost a year, and even though I've mopped his floor several times,

there's still a slick spot right at his door that if my feet are real dry, I

slide. (we have tile floors - gotta love that Navy housing).

Loriann >>

Yea, we've had the baby powder *fun* too Loriann. And you're right----it's

BRUTAL to clean up.

Donna

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[Guest guest]

Vinegar is the best - with that and baking soda, one can clean the world!!!!

Expert stain remover, deodorizer, drain unclogger, hair rinse, clothes rinse,

clean dishwasher and washer, clean windows, etc.............

Sara

[Guest guest]

>Anyway, DH said what good

> can it do at night??? but that's what doc said, to help him sleep better

and

> sleep off side effects

Ian takes it at night too, but his doctor said it was because risperdal can

make you drowsy -- and this is a good use of a negative side effect.

CK,

Mom to Ian (2/89),

(9/90),

and Rose (6/94)

[Guest guest]

In a message dated 4/3/00 11:32:12 AM Eastern Daylight Time,

LifeLiftegroups writes:

<< Dawn,

Don't you just love the new videos?! Although the armpit point was painful,

be glad you found it. This very well could be an attributer to your not

becoming so ill. Also, Lift Lift itself, really helps to boost the immune

system. The longer you do this program, you will probably find, the less

sick you will become. Isn't it amazing how something so natural, can be so

incredibly good for our bodies, especially when done using the proper

technique! By the way, you sound like a really wonderful person. I read

your web page and think you would be great fun to know!

Sincerely,

Tami >>

That's what I thought, too--why I wasn't sick as long as my daughter was.

I'll tell you, I was so surprised when I touched those points and it hurt so

bad. And the breathing is so energizing and calming at the same time that

it has to be making you healthier on every level.

Thanks for the nice words. I am glad you enjoyed my web page. You are

amazing though. All you've gone through and you're still going strong and

helping and encouraging others.

Dawn G.--Massachusetts

There were ghosts in the eyes of all the boys you sent away. They haunt this

dusty beach road in the skeleton frames of burned out Chevrolets...

<A HREF= " http://hometown.aol.com/dawnpage99/myhomepage/index.html " >About

Dawn...</A>

[Guest guest]

At 13:04 14/09/00 +0000, you wrote:

>Message: 25

> Date: Thu, 14 Sep 2000 09:00:39 EDT

> From: jbocci55@...

>Subject: Re: Local story

>

>I've always been told never to have any money saved under 's name.

>Anyone else ever been told this? Anything we leave for will be left

>under his brothers names.

>

>Jackie, Mom to 12ds

Hi Jackie,

There is an awful lot to be considered here.

Below are a couple of quotes from one of the best DS sites that I know of.

Be sure to check them out before you make any lasting decisions.

One of the items stresses that it is generally not appropriate to make a

sibling responsible for money left for a child with a disability.

Israela

>7.Trusts may be an appropriate alternative to appointment of a

> Guardian in some circumstances. A trust is a legal plan for placing

> funds and other assets in the control of a trustee for the benefit of an

> individual with a disability. Creating a trust will be less expensive

> than a

> guardianship, in that no bond is required; it will keep the courts, and

> their associated costs, out of one's life (in most cases permission of a

> court is not needed to make disbursements from the trust or to make

> investments); and, it protects the beneficiary's assets without requiring

> that a disabled person be declared incompetent by a court. A trust may

> also make it possible for the beneficiary to receive the advantage of

> extra income without losing valuable state and federal benefits. Trusts

> for the benefit of a person who is disabled should be established with

> the help of a lawyer experienced in wills and trusts and familiar

> with the

> law relating to government disability benefits. A trust set up without

> regard to the eligibility laws may disqualify a person who is disabled

> from SSI, Medicaid, and other important benefits...

>.Guardianship is an option for persons who, because of mental illness,

>developmental disability, or physical disability, lack sufficient

>understanding or capacity to make or communicate responsible decisions

>concerning their care, and/or are unable to manage their financial

>affairs. Guardianships are supervised by the Court.

> a.A Guardian of the Person is responsible for monitoring the

> care of the ward. The guardian need not use his/her own money

> for the ward's expenses, provide daily supervision of the ward, or

> even live with the ward. However, the guardian must attempt to

> ensure that the ward is receiving proper care and supervision,

> and the guardian is responsible for decisions regarding most

> medical care, education, and vocational issues. For highly

> unusual decisions which were not anticipated at the time of the

> original guardianship hearing, the guardian ask the court for

> instructions. Decisions involving intrusive forms of treatment,

> such as administration of antipsychotic medication, sterilization,

> and the withdrawal of life-prolonging treatment, must be made by

> the court. Generally, the guardian will be required to report

> annually on the status of the ward.

> b.A Guardian of the Estate should be considered for persons

> with disabilities who are unable to manage their finances, and

> who have income from sources other than benefit checks, or

> have other assets and/or property. Appointment of a Guardian of

> the Estate is not required by law unless the value of the Ward's

> assets exceed $10,000. In some circumstances, however, a

> Guardian of the Estate may be appointed even if the value of

> ward's assets is less than $10,000. Government benefits

> payments are generally not considered income/assets for this

> purpose. The guardian is responsible for handling the ward's

> financial resources but is not personally financially responsible

> for the ward from his or her own resources. The guardian must

> file an annual accounting of the ward's funds with the court.

> c.A Guardianship may be limited to certain areas of decision

> making, such as decisions about medical treatment, or the

> guardian may be granted narrowly defined authority over certain

> issues such as the ward's finances, in order to allow the ward to

> continue making his/her own decisions in all other areas. The

> benefit of a limited guardianship is that the specific duties and

> responsibilities of the guardian can be tailored to fit the ward's

> special needs in the least restrictive manner. Further, under a

> limited guardianship, the ward has not been declared

> incompetent.

http://www.altonweb.com/cs/downsyndrome/index.htm

[Guest guest]

In a message dated 9/14/00 1:30:28 PM Central Daylight Time,

sameach@... writes:

<< Hi Jackie,

There is an awful lot to be considered here.

Below are a couple of quotes from one of the best DS sites that I know of.

Be sure to check them out before you make any lasting decisions.

One of the items stresses that it is generally not appropriate to make a

sibling responsible for money left for a child with a disability.

Israela >>

That is a very good overview. Thanks. I think there should maybe be an

upper limit on the amount of funds that can be protected by a special needs

trust, but I'm not sure there is. That would also discourage the state or

whoever from trying to break it.

The trouble with leaving everything to a sibling and expecting them to

see to the disabled person is that things can happen. Suppose it is a

brother and he gets married and has a family. Then something happens to him

and his widow takes over and then maybe remarries---. See the possibilities?

Or there might be a divorce and she gets a large share of everything. We

hope those things don't happen but---.

Our state was really pushing guardianship a few years ago, even paying

for it, but I didn't like the idea. A person loses rights when they have a

guardian. And if the original guardian dies, or can't continue, then it is

easier for someone else to take over and it might even be a stranger

appointed by the court. Some of them have proved untrustworthy.

and I each have a Durable Power of Attorney for health care.

That means I can sign for him or make decisions for him if he isn't able to.

And my daughter could for me. We also have one for business affairs so that

I can handle his money. Or my daughter could come in and pay bills etc. if I

were incapacitated. We each have another person to take over if the first

one was unable or unavailable.

Every single person should have something like this. And with this a

guardianship is not necessary. did not have to be declared

incompetent. He signs things himself, such as health forms etc. This is

what our attorney recommended. He is also a registered voter and probably

votes more conscientously than most people.

We are very lucky to have a young friend, not much older than he is who

offered to " take care of him " if necessary. She has a family too. I have

told her I don't expect her to live with him their whole lives but they

would be his family and help make decisions for him. My daughter, incidently

lives across the country, and it would be much harder for her. We also have

another young couple who would handle his trust. And I trust all of them!

There is a local organization that solicits clients to take over these

duties for. (Boy this bad wording) but they charge an arm and a leg for

every transaction they perform so watch out for that if it comes up.

We all hate to think about these things but I had to face it more after

my husband died. And there is peace of mind in knowing it is taken care of.

And it can always be changed if something better comes up. It is not set in

stone. Jessie