Re: Blogs?

[Guest guest]

In true I to lack what is a blog in regards to what is of a e list

such as this? I to lack what the differneces are to be although I to

hear of blogs and such and even looked at a few with links but I to

lack thier functions and or differnces. I to have a few e lists that

I to be owner of , and many more I to be member of. Is a blog a web

site? if so am building one for my work at OSU in the LEND program.

I to work as part of a team who evaluates and dx young children of

spectrum and then gives of parents begin start resources. The team

is aware of my autism and so it makes it a better work environment

for me at times.

But thank you for thinking of us here who do work to teach and help

parents from our own perspectives. A few others that are here and

are often not as vocal are anastasia, Lilly, Lorna. there are a few

more buut memory isnot coming to remind me ofnames but wanted to add

there are more here, just not as vocal meaning they come in and out

occassionally. But their advice and words are just as valaubale when

they come here too.

Sondra

In Autism_in_Girls , EbuyerMTC@... wrote:

>

> Kassianne,Sondra, , any others on the spectrum,

> Do any of you have a blog ( that you would like to share with

us)? I am

> so grateful for your perspectives, all of you, and would love more

of them.

> Sondra, I've viewed your DVD and read your book--they are

wonderful.

> I'm evolving as a parent and as a person on this journey, and

I

> appreciate all the incredible information, opinion, and stories

from all members of

> this group. Special and deep appreciation to our members on the

spectrum for

> being so generous with their insights and suggestions.

> Melinda

>

>

>

[Guest guest]

I to not have of a blog either. it will be hard for me to do because

i to lack how thye work but did explore some you to posted. I to not

be of the neurodiversity group at all. Have been worried of it being

a new formed hate group and so from hearing this it fears me and so

I to avoid and stay much far from the works of that group.

I to be to want more awareness, i to be to want more acceptance, and

such. and some of the words I to agree too. many including self were

not fo where we are now as childrens. My world began much like that

of classic and it has been of slow progress for much years in many

areas of my life especially in areas of langauge. Many can be to see

of my life now and not understand the past challenges i to be to had

to over come and learn to get where i to be now. I to not be cured

or fixed but more functional than was in past and every 10 years i

to look at self gains and see of progress. But some not knowing of

my past think my world has always been of this level of being and it

is not of true it has been a process over the life of me.

I to be very much smart in some areas of interest and other areas I

to be much lagging and behind and or so called different but this is

who i to be this day and this way will be different in 5 -10 years.

Autism is not a stagnent palce of beinmg but an ever changing and

like a forever transition to different places of being.

Those who do have awareness and accept of the whole of me find of

me, sondra. Many often do not look past the shell of me and see of

my presentations and never try ot get to know of me because the

differences cause them a barricaded need to self preserve. They

avoid trying to know me they simply walk away. I to nto be of

stupid to this and feel the impact of it and often it is of hard to

understand why and so take it of personal flaws to self. it is hard

for a self image and esteem to be when much of life people treated

you as though you are of disease and or broken. But thus is the life

of many with spectrum. many thing we are not aware ..... we are ....

ever so much ever aware that we are not like others and are not

fitting in to the norms.... So I to guess this is why some would be

to create the neurodiversity groups.

Sondra

[Guest guest]

Melinda cant really be to say as will not defile of names in this

but will say my exposure to it from the few people I to know within

it to me is not of a place want to explore. It does not mean I to

not respect of thier views to it or their want to be part of it.

I to also read from other autistics who shared it is of true a hate

group and so it fears me. I to only have knowings of a few hate

groups and they cause me great unsettled feelings.

I to not have any real personal reasons of the thinking behind it

just get a sense of unsettled. i to also be to have personal feels

that many who speak out are of very abled peoples in the sense of

functioning and speak for all instead of oneself. I to feel they

leave out many who are of not as abled yet. I to feel they want to

rid all interventions or most all of them and they fight much hard

in protests to eliminate of them programs. this is of not a good

move I to be to want to be a part of. I to also not be as abled as

many of them and some of them to speak as if autism is just a

differnet way of thinking or personality, i to have personal feels

for self that is is mucn more and much a pervasive challenge that

causes me great barriers inlife. I to feel my autism can be both a

challenge and a great one for me to obtain access to l;ife as

others, but at same it brings me ability and the auitsm has molded

me to be of who i to be this day.

I to not be to disagree with all their thinking but to the extremes

some of them voice things is to me not a safe feeling within me. I

to just not feel the same. I to feel that if one is to speak they

need to speak for whole spectrum and for some kids/adults who are

more invloved their autism is a huge barrier in life and a great

challenge. to say that autism is not of a disability does injustice

to them as this can back lash against government and state funding

for such programs and supports. If i to be to go around saying my

autism is just a different personality style it does not create room

for outside legistlations to see the need to fund and support

programs and funds to help of me in life. Yes awareness is of key

and acceptance is an ultimate goal but reality tells me not all will

be aware and not all will accept ever in life and to disclaim autism

as a disability willonly bring unwatned awareness to those who are

of real need for services still. If one is to speak for autism they

need to have a borad open mind to spectrum from what is felt to be

the most severe cases to the most highest ables beigns on spectrum.

I to often speak most for those in the middle to the lower ends

because I to find the need is mostly there.

Again this is from my own perspectives and my own thinkings and it

does not discredit the work the neurodiversity group is doing as I

to respect where they are at in thier own autism but for me not

there yet and so will speak out differently than they but both views

have good and both veiws bring bad.

Sondra

In Autism_in_Girls , EbuyerMTC@... wrote:

>

> Thanks, Sondra. Could you tell me more abut why neurodiversity

stuff

> seems like a hate group to you? I admit I kind of thought it was

the opposite-- I

> got the impression is was about acceptance of the differences in

people with

> autism, not about hating at all. I am just beginning to read more

about this

> and would love to hear more of your thoughts on this if you are

willing.

> Does anyone else have any input on neurodiversity websites,

blogs, etc?

> Thanks,

> Melinda.

>

>

>

[Guest guest]

Melinda, I to also share that in past had tried of an all autistic

group and felt isolated and alienated due to my challenged in autism

and words. I to felt as though could not even fit in among my own and

was casted out because of the lower ability and such in langauge.

Many were by far much more able and verbal and had good ways of words

where I to be at the disadvantage because of my language issues, and

those that were of autisitcs there claimed to speaked out for want of

acceptance and want of to speak in awareness were unable to accept

different presentaions of the autism they were voicing out for. this

caused me an alarm and thus some of my work speaks out on this in

regards to not even fitting in among my own.

While I to be with autism and my presentation at times appears very

different from others it makes me still feel as though I to come from

a different undiscovered planet trying to survive among this worlds

people and the autistic world and not finding a place that allows me

to fit in on either side. I to learned to stay where life is safe for

me and that is usually being among people in words on ists where i to

be safe and can interact if want and or retreat if need.

But sadly I to feel more acceptance from parents of kids on spectrum

than other spectrum peoples . although, have met and admire and enjoy

being in words with many autistics too. Some I to connect to strongly

by thier views and thinking and some simply by the pattern of hte way

in which they might use words. I to ahve met many accepting and gentle

autistics who bring me a sense of being in life too.

Sondra

[Guest guest]

My experience has been that it's about accepting those with different

wiring...but

sometimes in the process of trying to persuade others to be

accepting...ah...those who

refuse acceptance get run over. A lot of the blogs dissect autism research,

especially the

mercury stuff and the testosterone sheets thing (anyone who wants to know my

opinion

can ask anytime and I'll tell you in no uncertain terms, but I also believe the

majority of

parents are just trying to do what's best for their kids).

That's how I see it. I made shirts that said " Celebrate Neurodiversity " long

before blogging

was cool.

Kassiane

website: www.rettdevil.com

blog: rettdevil.blogspot.com , has all of 2 messages

>

> Thanks, Sondra. Could you tell me more abut why neurodiversity stuff

> seems like a hate group to you? I admit I kind of thought it was the

opposite-- I

> got the impression is was about acceptance of the differences in people with

> autism, not about hating at all. I am just beginning to read more about this

> and would love to hear more of your thoughts on this if you are willing.

> Does anyone else have any input on neurodiversity websites, blogs, etc?

> Thanks,

> Melinda.

>

>

>

[Guest guest]

>

> Melinda, I to also share that in past had tried of an all autistic

> group and felt isolated and alienated due to my challenged in autism

> and words. I to felt as though could not even fit in among my own and

> was casted out because of the lower ability and such in langauge.

I have a friend who feels this way with other autistic people, because so many

are

hyperlexic. Recently I've started feeling out of place because a genetic

analysis revealed I

have the gene mutation for Rett Syndrome, so I feel different even if in most

ways I am

more like a " very verbal autistic " than someone with Rett.

Personally, I think autism groups are for all autistics and allies, and that we

really need to

be aware of the WHOLE SPECTRUM, but I can't speak for everyone. I believe in

celebrating

strengths, too-of everyone. Nothing makes me smile harder than hearing the gains

people

on the spectrum have made--even really little ones.

I think one of your strengths is that you're very good at explaining things, in

your voice,

without being a confrontational butthead like I am (that's the bipolar, I

think...). Maybe

there needs to be an " acceptance " movement, in your gentle style, instead of the

harder

hitting folks who are now called the Neurodiversity movement. You bring much

understanding to parents, and to people on the spectrum with different strenghts

and

weaknesses. I am glad to be able to call you " friend " .

Earlier you asked if I am going to ASA this year, and I am...I'm speaking on a

panel and

with the Autistic Space workshop. As I recall we're on the same panel? It'll be

good for

people to hear your voice.

Kassiane

[Guest guest]

Kassi, do you have a form of Rett, or are a carrier? Am I even asking

that correctly? We saw a geneticist Friday with Allie Kat, we're

wanting to rule out known metabolic disorders. I've overall been

against genetic testing for the very reason that I don't want to

obsess over carrier issues my girls might have. I read about it on the

fragile X site, according to them we all have genetic " issues " and

when you get genetic testing, you learn about it all, whereas the

average Jane hasn't learned about it.

I've been critical of ASA over the years, but one thing I think they

are very good about it trying to include a little of all segments of

the autism society, from parents to people with autism and everyone in

between. That's certainly not an easy thing to do! I like it that the

national assoc welcomes people with autism on the board.

Debi

[Guest guest]

I have signs of Rett (handwringing, little head, poor

fine motor skills, seizures), but technically I've got

what I call a " quiet not silent " mutation. Some women

have the mutation and never know.

I'm a carrier because of this. There might be other

stuff, I'm not sure, but that I know about because

they thought I had something ELSE on my X and it

wasn't there but the MECP2 mutation was.

I might do the more advanced genetic testing thing

some time, but it wouldnt EVER encourage me to delete

an already growing baby. I'm weird in the way that I'd

use it to adopt an unwanted kid with similar issues.

ASA is trying. They're getting there. That's why I

will continue to work with them, even as I oppose some

of their policies. One of my best friends is on the

board. I'm glad they are open to that, and to

educators, and even have been known to ban people with

abusive treatment policies from advertising at their

conferences.

Kassiane

who is kind of the reason MOMA can't go there anymore,

but thinks the woman who sent her 300 pound husband

after an autistic teenager played a bigger part

--- Debi wrote:

> Kassi, do you have a form of Rett, or are a carrier?

> Am I even asking

> that correctly? We saw a geneticist Friday with

> Allie Kat, we're

> wanting to rule out known metabolic disorders. I've

> overall been

> against genetic testing for the very reason that I

> don't want to

> obsess over carrier issues my girls might have. I

> read about it on the

> fragile X site, according to them we all have

> genetic " issues " and

> when you get genetic testing, you learn about it

> all, whereas the

> average Jane hasn't learned about it.

>

> I've been critical of ASA over the years, but one

> thing I think they

> are very good about it trying to include a little of

> all segments of

> the autism society, from parents to people with

> autism and everyone in

> between. That's certainly not an easy thing to do! I

> like it that the

> national assoc welcomes people with autism on the

> board.

>

> Debi

>

>

>

>

>

>

>

>

__________________________________________________

[Guest guest]

Kassi, you words to me this day were of greatly cherished. It maked

my morning be with a good start.

About my words it took years to figure out how to do them in ways

that are of what I to hope are of respectful, but yet inside of me

have always been much senstitive and gentle it was just trying to

find ways to do words that reflected of me inside. Once I to be to

learned how words can hurt or be seen by others and or interpreted

it becomed of a strong rule for me to try to always think much aobut

the words in the ways in which i to want them to come from me. It is

not always so though, as in some times impulsviely I to still say my

words and often can offend and or be to appear rude but in true it

was not with intent but lacking a social boundary and or the social

awareness that should not say certain words as they are meant for

private ways among people. If my words come out rude it is because

trying too hard to just get out my thinking in regards to surging

emotions and or lack of feeling heared by others. I to also have

loud speaking words if overwhelmed by the words and or excited to be

in words with people and feel connected to them and or if I to feel

my words are being ignored in a group tend to speak much louder not

even aware am of doing it but the children of me say to me MOM you

are of shouting too loudly you words. that cues me to calm self and

be to take deep breathes and try again.

I to be speaking on 2-3 panels and was asked to help co present of

one of the work shops but lack which one yet.

I to be bringing my daughters and my new grand daughter to the

conference this year/My oldest is by far very high functioning in

some areas and lagging much in others but as we to say she sits on

the fence of so called normalacy and spectrum but is dx with

aspergers syndrome. My youngest one was dx as autistic but now at

age of 12 is hard to always see of the spectrum in her but she is

with many LD issues and such too. She is a much milder version of me

in many areas of my challenges. The areas of my challenges are more

pronounced and hers is like me but with more function than me. Her

development is all over the board. So it will be fun but we tease

and say much if the baby is of born typical we may need supports to

understand how to raise her LOL. Opposite of typical parents trying

to raise of spectrum kids, well spectrum families who try to raise

of a NT will be complex and hard to understand and so we joke in

this. I to be feared if she is a strong eye looker and social baby

it will be hard because it will be too much informations and too

much overwhelming for me to keep up to her level of development LOL.

We have of 10 more days to go so really any time now I to be of a

grandma person . I to be to call self the nanna.

Sondra

[Guest guest]

I share your views on the genetic thing, that's the main reason why I

refused alpha fetal protein testing and genetic testing prior to

conceiving Dinah. As I told doc, once I'm pregnant I'm a mamma and if

they can't treat any issues found during pregnancy, I don't wanna know

about it. My cousin's cousin just had a baby 3 days ago. While

pregnant they thought one of the feet looked like Down Syndrome, so

they did an amnio (the mom had not planned on doing anything, they

were just investigating) and it came back neg. As soon as baby was

born they began suspecting Down Syndrome again because of the foot and

hands. Sounds like Mosaic to me, but I think it's crappy what she's

had to endure for months and in the end it hasn't benefitted them 1 iota.

Debi