Re: Re: interview w/ Kassiane on

[Guest guest]

Thank you for your thoughts and comments Sondra. They

are beautiful and it is a joy to read your writing,

because though you may have little spelling errors and

such, the meaning behind your words is so deep and the

posative and kind and understanding look you have on

life is refreshing to read. I laugh so much when I

read the part about Mikey eating the butter and

throwing the eggs and stuff. I laugh, because I have

been at that point so many times with my cute little

angels. All three of them. Even today as they splashed

so much water out of the tub even while I was right

there saying " No please stop, you guys wait and trying

to drain the tub, and they were not being bad, they

were having fun and they were cute, but still they

splashed all the water out onto the floor and then got

out and tried swimming on the floor as I was trying to

mop it up. just sat there saying Waaaa

waaaaaaaaaa waaaaaaaaaa waaaaaaaa over and over again,

and though I was proud of her because she is learning

the sound to begin the word water, it became

irritating very fast and she kept doing it and then

the baby was happily shrieking at the top of his lungs

and my Chantelle was saying Lets take a bath, lets

take a bath lets take a bath over and over and over

and then they ran out of the bathroom naked and were

all running around the house and then because they are

doing construction right behind our house, I mean like

4 feet from it they are building a new house then the

noise was almost intollerable for me, I have my

sensory overload issues to you know, and then because

of this construction we have had a lot of bugs wich I

am scared of, but try really hard to be brave, but

Chantelle can not be brave, she screams and shakes and

stops breathing and almost has a heart atach over even

ants or flies. And we had ants out in the living room

that I didn't see yet, and she found them first while

she ran out there naked, so I hear the screaming of

bloody murder and she comes running to me speechless

and I didn't know what happened and then slipped on

the floor and started crying then they were all

slipping on the floor and the baby was crawling naked

in the ants and was dipping the roll of toilet

paper in the toilet and Chantelle was still shaking

and screaming and climbing on me all wet and naked and

I almost broke down and had my own temper tantrum. The

drilling and sawing in the background and everybody

making noise and grabbing at me and I felt like I was

choking, but I just pushed myself through and got the

baby back in the tub and everybody rinsed off again

and mopped up the floor and turned on the Train

and finally got things under control, but I really

thought it was funny to hear I am not the only one and

that you've even had to deal with this kind of stuff

too. You still keep such a happy posative attitude and

outlook and I really appreciate you and everyone

sharing your opinions so that we can all try and see

everyone's side.

Thanks Sondra, Esther

And Kassiane I also listened to your interview. You

did a good job and I am proud of you. I never even

knew of Retts before, so it was good to learn some

more. You are very well educated and you have a nice

voice and I am glad you are able to share your view

and opinion

--- sondra wrote:

> Kassi I to not be to fully understand of the words

> to the interview but

> now seem to understand you have of retts and so this

> is what caused of

> you autism and such? The girls I to know with retts

> are of very much

> severely impaired so lack the connection but not

> know that Retts is of

> like spectrum it can be of spectrum degrees of

> ability and or

> challenges. I to read of you blog and such and be to

> hear of you words

> over it but did not make full connection until this

> day of what you

> were of sharing of it.

>

> I to be also to not know you go non verbal under

> certain stresses too.

> I to be of learning much about you over time.

>

> Happy you do not rage as much on the net, as it use

> to fear me greatly

> but find you are of maturing and able to be more

> calm in trigger words.

>

> this is good.

>

> I to be to not have the same thinkings to cures as

> some and yet this is

> of okay as we all ahve of rights to be to think on

> it as we do. I to

> ahve some thinkings as you but not in complete on

> the cure things. I to

> feel there is not cure for autism in complete, and

> parents should not

> be given false hopes that the cure is obtainable to

> all childrens of

> spectrum. It is simply not fact and this the part we

> both some what

> agree to .

>

> To me I to not think of " autism " as a beautiful

> things to embrace at

> all, but feel that coming to terms with the life one

> is given ,

> learning to embrace who we are in life, weather

> autism , or not autism

> and or blind or deaf or not we need to embrace life

> and learn to find

> peace with who we are and who others are in life.

>

> Some things can be changed and some things cannot

> not be changed and

> we have to begin to learn or discern the differnece

> between the two. I

> to be to have of autism and yet no cure for me not

> sure if want one

> always because have learend to be okay with the

> person I to be-coming

> of. Have not " become " as we only become when life is

> of over but while

> we live we have chances to change and alter and

> modify and learn and

> mold selves as a never ending piece of art . so in

> life i to be simply

> just becoming.

>

> And so is all peoples who live and breathe and so

> all humans need to be

> embraced for the good in their very existance even

> when we cant see any

> good there is some there somewhere we have to just

> look harder for it

> but it exists. And we have to patient because all

> people are simply be-

> coming and have not become anythings until they are

> no longer of

> breathing.

>

> I to know some do not like of the autism speaks

> video and they have of

> rights to this but in reality from the many families

> I to adviocate for

> or have been in roles to meet or see much of thier

> lives is like the

> video. not all are calm highly academic like kids ,

> some bolt amny

> times a day into busy streets and are killed by on

> coming cars, many

> wander and are drowned, many destroy the home in

> minutes or smear of

> feces and or urinate all over the home making it not

> a sanitary home

> for all to exist safely and they try , parents try

> and get no answers

> of how to help them develop some functional skills

> such as using the

> tolite not the rgister vents to urinate in or to

> smear of feces or eat

> of it. this is of the side of autism others do need

> exposed to as well.

> if we portray of selves always as able and gifted or

> only the blessing

> sides we are leaving out families who have not had

> the time to see of

> the blessings yet because they are on thier knees

> cleaning feces off

> the walls or bed frames and out of thier childs

> mouth and or chasing

> them and or not ever really sleeping for fearing of

> the child escaping.

> So to me the video shouts of the reality of the ugly

> side of autism and

> so it lets the world see a more balanced side of

> autism.

>

> Yet i to agree to you words about it leaving a

> negative to autism but I

> to think not with all the positive stories and

> things on autism that

> ahve been in the news latley I to think it just

> balances out the

> spectrumn of its ability and its challenges.

>

> I to feel bad that the one mom shared her deepest

> feelings of guilt

> ansd shame in not being able to understand or cope

> her daugher and

> quickly voiced it out in public TV and her words

> shoukd not be so

> easily jusdged but the media who allowed it to be

> publically shared

> instead of editing it out is of fault here. there

> were of time in my

> own parenting felt would have to palce a child of me

> out because he was

> ever so much challenge and feared fro hims safe and

> development. I to

> loved him but feared of my inability to cope and

> parent of him and

> parent the rest too. There was of times i to had to

> walk away and walk

> outside and leave him in hims play pen or crib for

> safety but had to

> get away from him because of my frustrations were so

> great. Such as the

> day i to spended the whole day cleaning and moping

> and doing much hard

> work in the home and so went to take of shower and

> comed down stairs to

> eggs throwed all over and pickle jar broken on the

> floor and mikey on

> the table eating butter. I to simply feared he would

> be to get cut or

> sick and worked out of logic but soon the anger to

> comed to me from

> overwhelm and so ahd to take him to hims room as I

> to be to went to

> quick tears because the husband was of due home any

> time and the home

> was destroyed .

>

> Or the day mikey and missy got up early and opened

> several boxes of

> ceral and threw of them all over the floor in the

> living roon and the

> list of messes can be for ever to be to explain.

>

> the fears of tryng to make of the beds in the AM

> because of the litle

> ones wandering off and one day my mikey escaped and

> found him outside

> in a small pool but he was of a very young and was

> sitting in the

> nighbors pool wioth water up to hims neck in it and

> he as of naked. he

> to did this in the matter of minutes for me to be to

> do somethings else

> in the home work things. Or the day he waneded off

> at age of 4 and

> found him 3 blocks way where he had crossed busy

> intersections to get

> access to a park. in not so good of areas to live in

> and so the dangers

> and fears are of great.

>

> Not disputing what you share kassi but adding to it

> from my own

> perspectives.

>

> But in same sense do not want cure alls to take of

> place as in

> infantcides and such things as that. not want of

> kids to be in danger

> for pursuit of seeking cures, nor do I to condone

> taking of thems

> childs life due to autism for not being able to cope

> but until we can

> be to learn how to alter our thinking to understand

> what makes of

> people do such things as take the life of thems own

> is

=== message truncated ===

__________________________________________________

[Guest guest]

Thank you for your thoughts and comments Sondra. They

are beautiful and it is a joy to read your writing,

because though you may have little spelling errors and

such, the meaning behind your words is so deep and the

posative and kind and understanding look you have on

life is refreshing to read. I laugh so much when I

read the part about Mikey eating the butter and

throwing the eggs and stuff. I laugh, because I have

been at that point so many times with my cute little

angels. All three of them. Even today as they splashed

so much water out of the tub even while I was right

there saying " No please stop, you guys wait and trying

to drain the tub, and they were not being bad, they

were having fun and they were cute, but still they

splashed all the water out onto the floor and then got

out and tried swimming on the floor as I was trying to

mop it up. just sat there saying Waaaa

waaaaaaaaaa waaaaaaaaaa waaaaaaaa over and over again,

and though I was proud of her because she is learning

the sound to begin the word water, it became

irritating very fast and she kept doing it and then

the baby was happily shrieking at the top of his lungs

and my Chantelle was saying Lets take a bath, lets

take a bath lets take a bath over and over and over

and then they ran out of the bathroom naked and were

all running around the house and then because they are

doing construction right behind our house, I mean like

4 feet from it they are building a new house then the

noise was almost intollerable for me, I have my

sensory overload issues to you know, and then because

of this construction we have had a lot of bugs wich I

am scared of, but try really hard to be brave, but

Chantelle can not be brave, she screams and shakes and

stops breathing and almost has a heart atach over even

ants or flies. And we had ants out in the living room

that I didn't see yet, and she found them first while

she ran out there naked, so I hear the screaming of

bloody murder and she comes running to me speechless

and I didn't know what happened and then slipped on

the floor and started crying then they were all

slipping on the floor and the baby was crawling naked

in the ants and was dipping the roll of toilet

paper in the toilet and Chantelle was still shaking

and screaming and climbing on me all wet and naked and

I almost broke down and had my own temper tantrum. The

drilling and sawing in the background and everybody

making noise and grabbing at me and I felt like I was

choking, but I just pushed myself through and got the

baby back in the tub and everybody rinsed off again

and mopped up the floor and turned on the Train

and finally got things under control, but I really

thought it was funny to hear I am not the only one and

that you've even had to deal with this kind of stuff

too. You still keep such a happy posative attitude and

outlook and I really appreciate you and everyone

sharing your opinions so that we can all try and see

everyone's side.

Thanks Sondra, Esther

And Kassiane I also listened to your interview. You

did a good job and I am proud of you. I never even

knew of Retts before, so it was good to learn some

more. You are very well educated and you have a nice

voice and I am glad you are able to share your view

and opinion

--- sondra wrote:

> Kassi I to not be to fully understand of the words

> to the interview but

> now seem to understand you have of retts and so this

> is what caused of

> you autism and such? The girls I to know with retts

> are of very much

> severely impaired so lack the connection but not

> know that Retts is of

> like spectrum it can be of spectrum degrees of

> ability and or

> challenges. I to read of you blog and such and be to

> hear of you words

> over it but did not make full connection until this

> day of what you

> were of sharing of it.

>

> I to be also to not know you go non verbal under

> certain stresses too.

> I to be of learning much about you over time.

>

> Happy you do not rage as much on the net, as it use

> to fear me greatly

> but find you are of maturing and able to be more

> calm in trigger words.

>

> this is good.

>

> I to be to not have the same thinkings to cures as

> some and yet this is

> of okay as we all ahve of rights to be to think on

> it as we do. I to

> ahve some thinkings as you but not in complete on

> the cure things. I to

> feel there is not cure for autism in complete, and

> parents should not

> be given false hopes that the cure is obtainable to

> all childrens of

> spectrum. It is simply not fact and this the part we

> both some what

> agree to .

>

> To me I to not think of " autism " as a beautiful

> things to embrace at

> all, but feel that coming to terms with the life one

> is given ,

> learning to embrace who we are in life, weather

> autism , or not autism

> and or blind or deaf or not we need to embrace life

> and learn to find

> peace with who we are and who others are in life.

>

> Some things can be changed and some things cannot

> not be changed and

> we have to begin to learn or discern the differnece

> between the two. I

> to be to have of autism and yet no cure for me not

> sure if want one

> always because have learend to be okay with the

> person I to be-coming

> of. Have not " become " as we only become when life is

> of over but while

> we live we have chances to change and alter and

> modify and learn and

> mold selves as a never ending piece of art . so in

> life i to be simply

> just becoming.

>

> And so is all peoples who live and breathe and so

> all humans need to be

> embraced for the good in their very existance even

> when we cant see any

> good there is some there somewhere we have to just

> look harder for it

> but it exists. And we have to patient because all

> people are simply be-

> coming and have not become anythings until they are

> no longer of

> breathing.

>

> I to know some do not like of the autism speaks

> video and they have of

> rights to this but in reality from the many families

> I to adviocate for

> or have been in roles to meet or see much of thier

> lives is like the

> video. not all are calm highly academic like kids ,

> some bolt amny

> times a day into busy streets and are killed by on

> coming cars, many

> wander and are drowned, many destroy the home in

> minutes or smear of

> feces and or urinate all over the home making it not

> a sanitary home

> for all to exist safely and they try , parents try

> and get no answers

> of how to help them develop some functional skills

> such as using the

> tolite not the rgister vents to urinate in or to

> smear of feces or eat

> of it. this is of the side of autism others do need

> exposed to as well.

> if we portray of selves always as able and gifted or

> only the blessing

> sides we are leaving out families who have not had

> the time to see of

> the blessings yet because they are on thier knees

> cleaning feces off

> the walls or bed frames and out of thier childs

> mouth and or chasing

> them and or not ever really sleeping for fearing of

> the child escaping.

> So to me the video shouts of the reality of the ugly

> side of autism and

> so it lets the world see a more balanced side of

> autism.

>

> Yet i to agree to you words about it leaving a

> negative to autism but I

> to think not with all the positive stories and

> things on autism that

> ahve been in the news latley I to think it just

> balances out the

> spectrumn of its ability and its challenges.

>

> I to feel bad that the one mom shared her deepest

> feelings of guilt

> ansd shame in not being able to understand or cope

> her daugher and

> quickly voiced it out in public TV and her words

> shoukd not be so

> easily jusdged but the media who allowed it to be

> publically shared

> instead of editing it out is of fault here. there

> were of time in my

> own parenting felt would have to palce a child of me

> out because he was

> ever so much challenge and feared fro hims safe and

> development. I to

> loved him but feared of my inability to cope and

> parent of him and

> parent the rest too. There was of times i to had to

> walk away and walk

> outside and leave him in hims play pen or crib for

> safety but had to

> get away from him because of my frustrations were so

> great. Such as the

> day i to spended the whole day cleaning and moping

> and doing much hard

> work in the home and so went to take of shower and

> comed down stairs to

> eggs throwed all over and pickle jar broken on the

> floor and mikey on

> the table eating butter. I to simply feared he would

> be to get cut or

> sick and worked out of logic but soon the anger to

> comed to me from

> overwhelm and so ahd to take him to hims room as I

> to be to went to

> quick tears because the husband was of due home any

> time and the home

> was destroyed .

>

> Or the day mikey and missy got up early and opened

> several boxes of

> ceral and threw of them all over the floor in the

> living roon and the

> list of messes can be for ever to be to explain.

>

> the fears of tryng to make of the beds in the AM

> because of the litle

> ones wandering off and one day my mikey escaped and

> found him outside

> in a small pool but he was of a very young and was

> sitting in the

> nighbors pool wioth water up to hims neck in it and

> he as of naked. he

> to did this in the matter of minutes for me to be to

> do somethings else

> in the home work things. Or the day he waneded off

> at age of 4 and

> found him 3 blocks way where he had crossed busy

> intersections to get

> access to a park. in not so good of areas to live in

> and so the dangers

> and fears are of great.

>

> Not disputing what you share kassi but adding to it

> from my own

> perspectives.

>

> But in same sense do not want cure alls to take of

> place as in

> infantcides and such things as that. not want of

> kids to be in danger

> for pursuit of seeking cures, nor do I to condone

> taking of thems

> childs life due to autism for not being able to cope

> but until we can

> be to learn how to alter our thinking to understand

> what makes of

> people do such things as take the life of thems own

> is

=== message truncated ===

__________________________________________________

[Guest guest]

--- sondra wrote:

> Kassi I to not be to fully understand of the words

> to the interview but

> now seem to understand you have of retts and so this

> is what caused of

> you autism and such? The girls I to know with retts

> are of very much

> severely impaired so lack the connection but not

> know that Retts is of

> like spectrum it can be of spectrum degrees of

> ability and or

> challenges. I to read of you blog and such and be to

> hear of you words

> over it but did not make full connection until this

> day of what you

> were of sharing of it.

I didn't know I have Rett's either until REALLY

recently. Or I have the mutation, and the doctor who

looked at the results (again...they're old results...)

said " well that explains a lot " and just recently 2

studies of girls with Rett who are very much like me

were published. It made me feel better to know I

wasn't the only one with 'quiet' Rett, as I call it.

> I to be also to not know you go non verbal under

> certain stresses too.

> I to be of learning much about you over time.

Stress really gets to my verbal skills. And my motor

skills. And most of my skills. My coach always said it

was a good thing that competing was FUN for me or I'd

not be able to do a single cartwheel.

<snip>

> Not disputing what you share kassi but adding to it

> from my own

> perspectives.

And knowing your perspective is valuable. Especially

since you have kids on the spectrum, and ARE on the

spectrum, you know both sides of the story.

<snip>

> Kassianne I to hope you to understand my words are

> not of condemning of

> you words or discounting of them but adding another

> perspective from

> parenting and from living and the exposure of the

> kids i to work for.

> Yes like yo ahve seen some poor quality parenting

> over autistic

> childrens and yet see this in typical populations

> too. some parents

> grwo with little to no skills in how to nurture or

> parent, some have

> littel coping and or have low tolerance levels and

> so the list can be

> of long in reasons for poor parenting but I to feel

> there is of many

> good parents trying to understand and to better life

> for us and yet

> they are of as human as we are and suseptable

> multiple mistakes.

>

> Not saying you words are of a mistake or you

> perception is of wrong and

> mine is to be of right but saying that two

> perspecitves can add and

> enahce any thinking on any topic. So I to decided to

> add of mine too.

> Sondra

Your words are always welcome. And you have a MUCH

more balanced view of things than I do. I think it's

one of your strengths, to be able to be moderate in

your views instead of an extremist on one side or the

others. I hope to mature to that. You're a great role

model in seeing both sides of many situations. Thanks

for adding your thoughts to mine.

Kassiane

(ps: <snip> means I cut some out that I read to save

room for the people on digest mode)

__________________________________________________

[Guest guest]

--- Esther <mike_es> And Kassiane I also

listened to your interview. You

> did a good job and I am proud of you. I never even

> knew of Retts before, so it was good to learn some

> more. You are very well educated and you have a nice

> voice and I am glad you are able to share your view

> and opinion

Aw thanks. I was soooo nervous, and had been sick! But

I had a lot of fun, the interviewer guy is

really nice.

*insert disclaimer about how I am WAY not typical for

Rett's here*

Kassiane

__________________________________________________

[Guest guest]

I'm pretty sure more autistic girls (especially the

extraverted but definately NOT Aspie girls) have the

mutation, either mosaic or with skewed x inactivation

or whatever (I know too much genetics at this point).

In addition to having an answer, it also tied together

the seizures, the looking like a blinkin' shrimpy

pixiechild when compared to the rest of my family, the

child size hats, the really BAD fine motor skills, and

doing things better when I don't think about them. And

why I am NOT high functioning because of essentially

praxis problems (initiation of activities is praxis,

after all) but SOUND high functioning. A lot of girls

with Rett are WAY smarter than people think.

And there was some autonomic stuff, like there's some

funky breathing in girls w/Rett that I have-next time

someone has to remind me to breathe I think I'm going

to cry-and there are 2 anticonvulsants that happen to

help with the forgetting to breathe thing, so it

effected that...and knowing carnitine helps certain

aspects REALLY helped, that amino acid has been a

Godsend.

It also might get me a grant for something I've wanted

to do FOREVER, since I was my own research subject. So

that's cool. And it's really neat to be on a message

list of parents of girls with Rett (and the occasional

silent/quiet carrier or girl who types with FC or a

headpointer or whatever she can handle) and to know

the LOVE these parents have for their daughters.

Oh. And it was cool to look at the Rett Syndrome

Association photo gallary and see about 20-30 little

girls who look more like me than my family does. Big

eyes, slim face, slim fingers, feet that turn purple

for no good reason...yeah...

Longer answer than you wanted I bet *grin*

Kassiane

--- Debi wrote:

> I wonder if a lot more girls with autism might have

> Rett's mutation. I

> don't think it was one of the things tested for

> Allie because she

> doesn't display classic characteristics.

>

> Has knowing made any difference, other than not

> feeling so isolated?

>

>

> >

> > > Kassi I to not be to fully understand of the

> words

> > > to the interview but

> > > now seem to understand you have of retts and so

> this

> > > is what caused of

>

> > I didn't know I have Rett's either until REALLY

> > recently. Or I have the mutation, and the doctor

> who

> > looked at the results (again...they're old

> results...)

> > said " well that explains a lot " and just recently

> 2

> > studies of girls with Rett who are very much like

> me

> > were published. It made me feel better to know I

> > wasn't the only one with 'quiet' Rett, as I call

> it.

> >

> >

>

>

>

>

__________________________________________________

[Guest guest]

Almost all girls with Rett have seizure disorders,yeah

or weird autonomic things that LOOK like seizures.

Kassiane

--- Debi wrote:

> Allie is very small for her age, but her sisters are

> all slightly

> short for their age. She has a big head, though not

> *that*, the same

> size as her sister 2 yrs older. Do all girls with

> Rett virtually all

> have seizure disorder? I'm trying to get carnitine

> into Allie, that

> blamed old food thing...

>

> Thanks for the info, enjoyed it all.

>

> Debi

>

>

>

>

>

>

__________________________________________________

[Guest guest]

Could someone please send me the link to Kassi's interview?

Thanks

Melinda