Re: Re: To Pennie and others who don't do ABA or the GFCF diet

[Guest guest]

YOu know I have a 46 year old bi-polar friend so she talks and knows things.

She is glad to be fixed and on the drugs! I know 46 years old and a

child are different but she has a far better life now. Her brain chemicals

are much better then before. I also agree that some people want drugs for

there children because they like them in a zombie state easier for them and

teachers but I also meant people that had to place there kids on drugs due

to violent tendancies. I am almost positive that if a child is temper

trantuming I mean throwing themselves down and doing this stuff at an older

age they cant be happy with that. Yes I know and heard of behavior

modificatin too!!! I am constantly told by people I spoil my kids or my

daughter acts that way because we dont provide structure. I dont give my

kids drugs but if my daughter gets suicidic or my son abusive after age 16

where he is going to be placed in jail or something yes I will give drugs if

needed. We all have to relax everyones case is different.

Charlene

-- Re: Re: To Pennie and others who don't do ABA or

the GFCF diet

_______________________________________________________________

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> What do you see as the difference? Like what do you feel is the line

> the separates helping vs. making someone into another? (I ask because

> I'm constantly trying to better understand.)

The difference is that helping says " This is who you are. This aspect

makes you uncomfortable (or whatever). Let's see what we can do about

that aspect " .

CHANGING someone says " Who you are causes loads of problems. Let's fix

them, and in the process fix you. "

Kassiane

[Guest guest]

YOu know I have a 46 year old bi-polar friend so she talks and knows things.

She is glad to be fixed and on the drugs! I know 46 years old and a

child are different but she has a far better life now. Her brain chemicals

are much better then before. I also agree that some people want drugs for

there children because they like them in a zombie state easier for them and

teachers but I also meant people that had to place there kids on drugs due

to violent tendancies. I am almost positive that if a child is temper

trantuming I mean throwing themselves down and doing this stuff at an older

age they cant be happy with that. Yes I know and heard of behavior

modificatin too!!! I am constantly told by people I spoil my kids or my

daughter acts that way because we dont provide structure. I dont give my

kids drugs but if my daughter gets suicidic or my son abusive after age 16

where he is going to be placed in jail or something yes I will give drugs if

needed. We all have to relax everyones case is different.

Charlene

-- Re: Re: To Pennie and others who don't do ABA or

the GFCF diet

_______________________________________________________________

Get the FREE email that has everyone talking at

http://www.mail2world.com

> What do you see as the difference? Like what do you feel is the line

> the separates helping vs. making someone into another? (I ask because

> I'm constantly trying to better understand.)

The difference is that helping says " This is who you are. This aspect

makes you uncomfortable (or whatever). Let's see what we can do about

that aspect " .

CHANGING someone says " Who you are causes loads of problems. Let's fix

them, and in the process fix you. "

Kassiane

[Guest guest]

This is day 4 taking it. ITs hard Debi because my autistic son

james does nto swallow so I put it in his applesause, My NT son also gets

it just to do it and he swallows fine, my PDD-NOS daughter cant swallow

either and also takes it in apple sause but the directions say should be

with plenty of water. I can force my daughter to take water afterwards but

not my son. Anyway the directions on the internet say 4 on 3 off or 7 on

7 off. I have to tell you I havent seen a difference yet. I am also

taking the dmsa and escholator.

Charlene

-- Re: To Pennie and others who don't do ABA or the

GFCF diet

How is the DMSA going? You seeing any gains from it yet? I did three

rounds of ALA with Allie and we saw a definite progression, but she

got sick. Because of the short period her teacher and I aren't

certain if it was from the chelation or an unrelated developmental

surge. I think I'm gonna wait until around April to start again, last

winter she was sick every three weeks. I figure for Allie I better

not stress out her immune system any more until her sick season is

over.

Debi

[Guest guest]

Some of these kids that are self-injurous and head bangers and tantrum

throwers only have these outlets to express the pain they may be in. Not

all, but a very large percent. So, fix the pain, and hopefully things

will change. Olivia did nothing but cry for 11 months. Then she did

this hip thing when she was constipated that would last for hours with

her head tilted back and this God awful look on her face. Since we began

healing her gut with nothing fancy, just a good probiotic, this behavior

has stopped completely. Now we can focus on dealing with the real

issues.

Rhonda

[Guest guest]

> Okay, but this is the problem of parents of young children. For a

> baby that is 20 months old, what is the thing making her

> uncomfortable? At a young age, when symptoms can be significantly

> reduced or eliminated there is no way to communicate with her as to

> what she would like to change. In fact, at this age there is no way

> to communicate at all. And, if we wait until she's old enough that

> she should be able to communicate, we may have missed the window to

> help her be able to and she might be locked away forever. The only

> recourse we as parents have is to either seek all the treatment we

> can to help her overcome her disability or wait and do nothing and

> possibly sentence her to a life of profound disability.

>

> What do we do as parents to find balance?

>

The " window " , first off, is largely mythical. Jim Sinclair didnt talk

till age 12.

That being said, at such a young age, the most likely thing to be making

a child uncomfortable is sensory issues. SO get some SI therapy, if

communication is a problem use PECS and start some signing (this can

also kickstar language), if dietary seems to be a problem deal with

that. But MOST of the discomfort will be from societal things later,

especially if the sensory issues are dealt with.

BTW, most autistic people get peeved if you say that those on the

spectrum are locked away. There is no NT hiding inside of us. What you

see is what is there-sure, there may be words with no outlet, but the

person in front of you is the same inside and out, not trapped inside a

shell (that picture is a Bettleheimish, and we dont want to go

there....)

Kassiane

_______________________________________________________________

Get the FREE email that has everyone talking at

http://www.mail2world.com

[Guest guest]

Actually, my daughter has never had an ear infection nor has she been on

antibiotics. Thank God with all my fingers and toes crossed!!

Culturelle is the only probiotic I've found, thus far, that has produced

such great results. People say to rotate them but I haven't. Any other

suggestions for a good pb?

[Guest guest]

Rhonda,

I don't know if your daughter can swallow pills, but I use a GREAT

probiotic for my daughter called Probiotic Advantage made by

drdavidwilliams.com. It is VERY small and easy to swallow, doesn't

need refrigeration and you only need 1 beadlet per day. Check out the

web site!

On Wednesday, February 26, 2003, at 05:38 PM, rhonda m pineau wrote:

> Actually, my daughter has never had an ear infection nor has she been

> on

> antibiotics.  Thank God with all my fingers and toes crossed!!

> Culturelle is the only probiotic I've found, thus far, that has

> produced

> such great results.  People say to rotate them but I haven't.  Any

> other

> suggestions for a good pb?

>

<image.tiff>

>

>

>

[Guest guest]

Kassiane,

That was so well put you brought me to tears. I have to say that

unfortunately, we live

in a society that values conformity, and that is at the cost of the NON

conformists. To me,

not accepting who a person is with their disability, is right up there with

racism and sexism.

I would love to have my girls just BE who they are....make the world fit

around them rather than the reverse....but as I stated before, we (parents,

caregivers, etc of auties) live in a less

than perfect world(isn't THAT an understatement), and try to strive for a

peaceful and cohesive existence for our children. What a wonderful world

this would be, if everyone just accepted everyone for who and WHAT they are

rather than trying to fit everyone into a model of what is considered

perfection or idealistic.

Diane M.

Re: Re: To Pennie and others who don't do ABA or

the GFCF diet

> > Kassiane, I think I understand some of the feelings you have when you

> > see us parents constantly trying to remove every aspect of something

> > that makes such an important part of who you are. When we are

> > attempting to " cure " our kids, it's not that we think you are

> > anything less than absolutely beautiful and wonderful. It's that we

> > are parents with parental instincts.

>

> It's amazing to me what people do to their kids in the name of " parental

> instincts " , to change their child into someone more normal. It really

> baffles me.

>

> > When we have a baby, for some reason, we immediately begin what I

> > call the " perfect " syndrome. We want our children to have the perfect

> > life, with no hardships, struggles, or difficulties. I suppose it's

> > part of that protective instinct on overdrive. We never want our

> > children to hurt, feel left out, or any negative feeling that might

> > allow the slightest bit of suffering. At the same time, it often is

> > the negative issues, like feeling left out, doing without, and

> > fighting for simple achievements that often shape us into the postive

> > parts of our personalities. I know I would not have half of the

> > character I hold if it weren't for my father dying when I was 11

> > years old and the violent home from which I came. However, would I

> > wish this experience on anyone? Not for a second.

>

> The bad stuff isnt entirely caused by autism. MOST of the garbage in my

> life was caused by NT ignorance. In a society that prays to the god of

> Conformity, autistics have trouble, but this is not OUR failing-it is a

> SOCIAL failing.

>

> > For me as a parent of autism, I find my autistic daughter just as

> > wonderful, smart, beautiful, and lovely as my other two daughters.

> > However, I know that the more effective she can communicate with the

> > world will make her future easier, such as her education and

> > employment. If she is unable to do either of these things, she will

> > be just as wonderful as she would be if she hold the vocabulary of

> > Winston Churchill. If she never develops a seizure disorder it will

> > make it easier for her to be able to drive a car, be alone as an

> > adult, and do many of the physical activities that she might desire

> > as an adult. If she develops epilepsy and can never drive, be alone,

> > or anything else she will still be just as wonderful. If she has to

> > severely restrict her diet for the rest of her life in order to think

> > more clearly, not have diarrhea, or bang her head, then that is what

> > I want for her as her mother. If she still had diarrhea, head-

> > banging, or stayed spaced-out, she would still be lovely and precious.

> There is a difference between wanting better more comfortable

> functioning and being NT. I need to carefully watch my diet, or I am

> nonverbal and agressive (if I keep myself " clean " , foodwise, I have an

> exemplary hyperlexic vocabulary). I have to stay away from flashing

> lights or I have temporal lobe episodes that look like panic attacks and

> make me fuzzy for at least a day (had one today in fact, fire drill).

>

> > When we are trying to stop behaviors that are so much a part of who

> > you are, it's not that we are saying in any way that you are

> > something we would not want our children to be; what we are saying is

> > that we want our children to have it as best as we can make it. I

> > have diabetes that sometimes makes my mind in a fuzz and makes me act

> > a little wierd. I would love it if no one ever had to deal with

> > diabetes.

>

> Diabetes is different from autism. Take away diabetes, and it does not

> change anything but your digestive function. Take away my autism, and I

> am no longer the Kassiane I have been for 20 years. Without autism, Id

> not hear what I hear, see what I see, think how I think, do what I do.

> Id have been busy flirting with boys instead of attacking power

> tumbling. Id have never gotten as far in said sport if I got dizzy. My

> writing would not be the same, my experiences would not be the same, or

> my interpretation of them, my feelings, NOTHING would be the same. It'd

> be reanimating my body with an alien force.

>

>

> > Temple Grandin talks about the anxiety, difficulty keeping a job, and

> > other issues that she associates with her autism. I think Temple is

> > simply a wonderful woman and love to read her thoughts and listen to

> > her speak. But at the same time I try to help Allie in a way that she

> > will never have to feel the anxiety or have trouble functioning in

> > her job. It's just an obstacle that as a parent I hope to help her

> > overcome. If I don't then I don't but as her protector I feel an

> > obligation to do whatever I can to help her.

>

> I have anxiety too. Lots of it. Caused by rejection of who I was. I was

> always told to act more normal, FORCED into the appearance of

> typicality. And I was so anxious for a period of time that my muscles

> were pulling my back out of alignment. This is not from autism, but from

> trying to HIDE my autism.

>

> > I read an essay on the web somewhere written from an adult autistic.

> > I think it's entitled " Don't Mourn for Me " .

>

> Its " Don't Mourn for Us "

>

> >It says basically what I

> > have read from you that you are happy being you and when you see

> > people mourning it's as if we are wishing you weren't who you were. I

> > hate it that any of us ever make you are anyone else feel that way.

> > That is not my intent or feelings. Yes, I did grieve for my Allie Kat

> > for that first year. The thought of her sitting in a corner banging

> > her head, attacking others, having diarrhea for her entire life was a

> > horrid, frightful, paralysing feeling. That was the only example of

> > autism that I had ever been presented.

>

> That, again, is a societal failing, NOT ours.

>

> > I don't know how to express the feeling of having a child that you

> > would gladly lay down your life for the moment you know you are

> > carrying her. Then you birth her and watch her grow. Then you see her

> > slowly drift away into her own world, become silent, and begin a

> > series of behaviors that tell you over and over that something is

> > defintely wrong. Then we take our children to a multitude of mostly

> > unhelpful professionals who tell us to give up on our children. Then

> > we slowly exhaust ourselves to slowly rebuild our children's lives

> > from that of completely unfunctional to varying degrees of

> > functionality. That experience of fear, frustration, aloneness, and

> > exhaustion is what we mourn, not our precious babies.

>

> I have been to 20 shrinks. I am 20 years old. I know the professionals

> arent always helpful. But this is not the fault of me, nor any other

> autistic. It is because of the misconceptions of the larger neurotypical

> community.

>

> > So, Kassiane, my ramblings are only to try to help you know that we

> > do not think our children would not be simply great if they grow up

> > into a future Kassiane. I personally would be honored to have a

> > daughter such as you one day. But as her mommy I must do whatever I

> > can to help her have the most promising future.

>

> I have NO PROBLEM with promising futures. PECS are great. GFCF is great

> if it helps make one more comfortable. THey start offering SI therapy to

> adults and Ill be the first one in line. But there is a BIG DIFFERENCE

> between helping someone to function as comfortably as they can and

> trying to make them someone they are not.

>

> Kassiane

>

> _______________________________________________________________

> Get the FREE email that has everyone talking at

> http://www.mail2world.com

>

>

>

[Guest guest]

Kassiane,

That was so well put you brought me to tears. I have to say that

unfortunately, we live

in a society that values conformity, and that is at the cost of the NON

conformists. To me,

not accepting who a person is with their disability, is right up there with

racism and sexism.

I would love to have my girls just BE who they are....make the world fit

around them rather than the reverse....but as I stated before, we (parents,

caregivers, etc of auties) live in a less

than perfect world(isn't THAT an understatement), and try to strive for a

peaceful and cohesive existence for our children. What a wonderful world

this would be, if everyone just accepted everyone for who and WHAT they are

rather than trying to fit everyone into a model of what is considered

perfection or idealistic.

Diane M.

Re: Re: To Pennie and others who don't do ABA or

the GFCF diet

> > Kassiane, I think I understand some of the feelings you have when you

> > see us parents constantly trying to remove every aspect of something

> > that makes such an important part of who you are. When we are

> > attempting to " cure " our kids, it's not that we think you are

> > anything less than absolutely beautiful and wonderful. It's that we

> > are parents with parental instincts.

>

> It's amazing to me what people do to their kids in the name of " parental

> instincts " , to change their child into someone more normal. It really

> baffles me.

>

> > When we have a baby, for some reason, we immediately begin what I

> > call the " perfect " syndrome. We want our children to have the perfect

> > life, with no hardships, struggles, or difficulties. I suppose it's

> > part of that protective instinct on overdrive. We never want our

> > children to hurt, feel left out, or any negative feeling that might

> > allow the slightest bit of suffering. At the same time, it often is

> > the negative issues, like feeling left out, doing without, and

> > fighting for simple achievements that often shape us into the postive

> > parts of our personalities. I know I would not have half of the

> > character I hold if it weren't for my father dying when I was 11

> > years old and the violent home from which I came. However, would I

> > wish this experience on anyone? Not for a second.

>

> The bad stuff isnt entirely caused by autism. MOST of the garbage in my

> life was caused by NT ignorance. In a society that prays to the god of

> Conformity, autistics have trouble, but this is not OUR failing-it is a

> SOCIAL failing.

>

> > For me as a parent of autism, I find my autistic daughter just as

> > wonderful, smart, beautiful, and lovely as my other two daughters.

> > However, I know that the more effective she can communicate with the

> > world will make her future easier, such as her education and

> > employment. If she is unable to do either of these things, she will

> > be just as wonderful as she would be if she hold the vocabulary of

> > Winston Churchill. If she never develops a seizure disorder it will

> > make it easier for her to be able to drive a car, be alone as an

> > adult, and do many of the physical activities that she might desire

> > as an adult. If she develops epilepsy and can never drive, be alone,

> > or anything else she will still be just as wonderful. If she has to

> > severely restrict her diet for the rest of her life in order to think

> > more clearly, not have diarrhea, or bang her head, then that is what

> > I want for her as her mother. If she still had diarrhea, head-

> > banging, or stayed spaced-out, she would still be lovely and precious.

> There is a difference between wanting better more comfortable

> functioning and being NT. I need to carefully watch my diet, or I am

> nonverbal and agressive (if I keep myself " clean " , foodwise, I have an

> exemplary hyperlexic vocabulary). I have to stay away from flashing

> lights or I have temporal lobe episodes that look like panic attacks and

> make me fuzzy for at least a day (had one today in fact, fire drill).

>

> > When we are trying to stop behaviors that are so much a part of who

> > you are, it's not that we are saying in any way that you are

> > something we would not want our children to be; what we are saying is

> > that we want our children to have it as best as we can make it. I

> > have diabetes that sometimes makes my mind in a fuzz and makes me act

> > a little wierd. I would love it if no one ever had to deal with

> > diabetes.

>

> Diabetes is different from autism. Take away diabetes, and it does not

> change anything but your digestive function. Take away my autism, and I

> am no longer the Kassiane I have been for 20 years. Without autism, Id

> not hear what I hear, see what I see, think how I think, do what I do.

> Id have been busy flirting with boys instead of attacking power

> tumbling. Id have never gotten as far in said sport if I got dizzy. My

> writing would not be the same, my experiences would not be the same, or

> my interpretation of them, my feelings, NOTHING would be the same. It'd

> be reanimating my body with an alien force.

>

>

> > Temple Grandin talks about the anxiety, difficulty keeping a job, and

> > other issues that she associates with her autism. I think Temple is

> > simply a wonderful woman and love to read her thoughts and listen to

> > her speak. But at the same time I try to help Allie in a way that she

> > will never have to feel the anxiety or have trouble functioning in

> > her job. It's just an obstacle that as a parent I hope to help her

> > overcome. If I don't then I don't but as her protector I feel an

> > obligation to do whatever I can to help her.

>

> I have anxiety too. Lots of it. Caused by rejection of who I was. I was

> always told to act more normal, FORCED into the appearance of

> typicality. And I was so anxious for a period of time that my muscles

> were pulling my back out of alignment. This is not from autism, but from

> trying to HIDE my autism.

>

> > I read an essay on the web somewhere written from an adult autistic.

> > I think it's entitled " Don't Mourn for Me " .

>

> Its " Don't Mourn for Us "

>

> >It says basically what I

> > have read from you that you are happy being you and when you see

> > people mourning it's as if we are wishing you weren't who you were. I

> > hate it that any of us ever make you are anyone else feel that way.

> > That is not my intent or feelings. Yes, I did grieve for my Allie Kat

> > for that first year. The thought of her sitting in a corner banging

> > her head, attacking others, having diarrhea for her entire life was a

> > horrid, frightful, paralysing feeling. That was the only example of

> > autism that I had ever been presented.

>

> That, again, is a societal failing, NOT ours.

>

> > I don't know how to express the feeling of having a child that you

> > would gladly lay down your life for the moment you know you are

> > carrying her. Then you birth her and watch her grow. Then you see her

> > slowly drift away into her own world, become silent, and begin a

> > series of behaviors that tell you over and over that something is

> > defintely wrong. Then we take our children to a multitude of mostly

> > unhelpful professionals who tell us to give up on our children. Then

> > we slowly exhaust ourselves to slowly rebuild our children's lives

> > from that of completely unfunctional to varying degrees of

> > functionality. That experience of fear, frustration, aloneness, and

> > exhaustion is what we mourn, not our precious babies.

>

> I have been to 20 shrinks. I am 20 years old. I know the professionals

> arent always helpful. But this is not the fault of me, nor any other

> autistic. It is because of the misconceptions of the larger neurotypical

> community.

>

> > So, Kassiane, my ramblings are only to try to help you know that we

> > do not think our children would not be simply great if they grow up

> > into a future Kassiane. I personally would be honored to have a

> > daughter such as you one day. But as her mommy I must do whatever I

> > can to help her have the most promising future.

>

> I have NO PROBLEM with promising futures. PECS are great. GFCF is great

> if it helps make one more comfortable. THey start offering SI therapy to

> adults and Ill be the first one in line. But there is a BIG DIFFERENCE

> between helping someone to function as comfortably as they can and

> trying to make them someone they are not.

>

> Kassiane

>

> _______________________________________________________________

> Get the FREE email that has everyone talking at

> http://www.mail2world.com

>

>

>

[Guest guest]

Thanks . Is this what you rotate with or do you use this only?

Also, what strains are in it? Livia doesn't swallow pills, she's only 2,

I don't suppose it comes in a capsule?

Rhonda

[Guest guest]

> Kassiane,

> That was so well put you brought me to tears. I have to say that

> unfortunately, we live

> in a society that values conformity, and that is at the cost of the

NON

> conformists. To me,

> not accepting who a person is with their disability, is right up there

with

> racism and sexism.

> I would love to have my girls just BE who they are....make the world

fit

> around them rather than the reverse....but as I stated before, we

(parents,

> caregivers, etc of auties) live in a less

> than perfect world(isn't THAT an understatement), and try to strive

for a

> peaceful and cohesive existence for our children. What a wonderful

world

> this would be, if everyone just accepted everyone for who and WHAT

they are

> rather than trying to fit everyone into a model of what is considered

> perfection or idealistic.

>

Im actually writing a paper on a society that claims to value

individuality, but when it comes down to meeting a TRUE individual, they

run towards conformity as fast as they can go.

I truly beleive that we all need to work towards making a more accepting

society, rather than a more homogenous one. Aiming to make auties

indistinguishable from everyone else is going for the latter. That

scares me...its like the Borg-you will be assimillated. Scary stuff,

when one doesnt want to be assimilated...

Kassiane

_______________________________________________________________

Get the FREE email that has everyone talking at

http://www.mail2world.com