Re:Melinda

[Guest guest]

Melinda,

The obstacles were amazing but nothing that can not be overcome with the

persistence of moms like ourselves. We would love to have you come and

visit any time you would like. We all have so much in common and seem so

spread out.

If you are interested I have put together a " think about " list for parents

who might want to start their own place. The editors of the Advocate asked

me to do this several years ago as part of an edition devoted to moms. If

you would like it let me know and I can get it to you.

Ruthie

[Guest guest]

Ruthie,

I'd love to have your list and any info you'd be willing to share . Thank

you!

Sondra, a " think-about list " is just a listing of the different things

that need to be considered or thought about in order to accomplish something.

It's kind of another way of saying " To-do list. " So, before your conference, you

were probably thinking about al the things you needed to remember to bring

and plan for in order to be as comfortable as you could and make your family

feel comfortable too. What clothes to bring, what notes to have with you, what

supplements or medications to have, what phone numbers you would need. You could

call that a " think-about list " if you wanted to, or a " Mental To-Do list " .

Does that make sense? So, in this case, Ruthie just means that here are lots of

things to know and consider when trying to plan and create a place for our

daughters to live their lives and work. She has experienced this when creating

Mandy's Special Farm, and she is willing to share her list of things that need

to be considered.

I'm sure you are exhausted, Sondra, with all you had to do and think

about and adjust to during your trip. I think it is only natural.

Thanks,

Melinda

[Guest guest]

Ruthie what is of a think about list? It brings me no visual of a

image to build a memory on.

I to still be in my usual numb like feelings after a long conference

and so finding self still in bed after the 10 AM time which is rare

and when it happens it tells me the body is over stressed from too

much and too long of over load states and trying hard to be to do good

and right things while in public settings. the whole being of me is

exhausted mentally emtoionally socially and physically. even the limbs

of me feel weighted down when not but it is of a metaphor of physical

state to me right not.

Sondra

[Guest guest]

yes this to do list is of to make sense to me as understand of that

and you are of right it takes ofme months to prepare things such as

a trip. I to have to find comfort clothings and make of sure they

match and are of clean and to make of the extra clothes incase I to

make a mess. then have to have of list of all the medications and

supplements to take. all the hygeine things too. so the list can be

extensive for to go to long conference places then have to ahve of

list for stimmy and sensory calming things so the van is of usually

packed much so full no room to move about the kids to not complain

because they too have of much needs and this year it was of added

because we had of delaney too and so that was of new list and

thinking that took much time to prepare but between of me and my

Aimee we did not forget anythings for the baby.

Ususally I to have so many words consuming me after a conference and

little places to let them out to gain insight to all the new

experiences and such. so many words dancing and littel ability to

sort of them and share them but this state usually cycles me to a

very low state of emotional connect and affect and so it causes me

anxiety because i to lack why or what is happening to me after such

long events within me. i to feel as if a deep sense of grief is to

me when none to be to passed to the death places in the life of me

but it feels as if it had and lack why i to think it is because of

the want to understand and connect at levels I to see others and yet

cant seem to gain from the same things others to seem to gain in. In

true I to often feel much stupid in compare to others in life even

those on spectrum.

People shared words to me while at confernece but it to me does not

register to me of what it means or that I to ahve ability to follow

through with the words or sharing. Such as the dinner of champions

much of my spectrum friends to went and were dressed like

prinicesses and yet to me know sensory wise could never wear of

those things and nor do I to have a understand of how or what to do

in such things as that. i to lack skill to do hair up in the

beautiful ways some could be to do them. cant wear of heals or shoes

or beautiful jewelry and it makes of me feel stupid because since

being born of female should be to have some sense of all this and

dont. I to like to try but again never had any to support that or to

expose me to such grily things as that. i to be to see it and admire

it and feel the womans and mens bothj look so much beautiful and yet

want for self to be of that and no clue how to begin of such a

things. when to try of dresses that are in stores I to have to take

them off quick and if any to polish my nails it makes me go to

agitations quick because something is on me that is not to be there

and can feel it and it agitates of me all the time so have of tears

to get it off of me. I to try to have hair put up and when to look

in mirror I to panic because cant recognize the reflection and it

fears me and so rip it back out and down and so all this builds in

me making me feel as if crazy and not right even among other

autistics. I to seen of the one I to spoke with walk and speak with

much grace and almost the typical flavor of the NT worlds and

professional world I to be to admired that in her but also is

shouted to me how much differnet and not able I to be in compare to

this all.

I to often feel as cant be among the NT world because dont fit in

and or understand of it and feel this when among aspergers too as

they are all so much advanced in thier presentations and I to feel

cant compete with that ability to where my own ability is to be.

Yet in true I to just be of Sondra and have to learn that being me

isnot a bad things just a different place in life and some like of

me are in the world too and someday will find them and find a place

of comfort and being that is of true a reflection of me and my place

of ability too.

I to not resent of the places of others it is not of that it is of

my own self awareness of my challenges and wanting but not having

ability to gain to such levels of being. It makes of me sad and

frustrated and causes me to try harder to be like others and yet all

this imiation of me to be like others is also crushing the very soul

of me to be to not have a place where can simply be of me and be

okay to that.

Even when the speaking part and was on panels both times a loud

sound came and i to reacted much quick with a fight or flight

response of grabbing my ears in total fear of not understaning what

was happening and the rest of the panel people just sat unaffected

by the noise and appeared as if they not even hear of it. Because of

the fear I to searched out each of them visually to see if any cues

were to come to me to get out of the place or areas and yet all

appeared calm and this then calmed of me too. this is why I to

wonder of my dx all the time. I to wonder if the dx is of correct to

me or is my dx presentations so different due to the traumas and

abuse mixed in it all. it is of painful to be fearful of so much in

life and not have ability to prcess or interpret it and it builds

over and over and keeps you into the fight and flight responses and

not ever seem to find a calm in life and so to me because of this

can say Autism and abuse mixed is of a cruel life that never lets

this soul have of a place of safe for long. this is hwy I to say

while I to know there is not a cure for autism that can hope for ,

for self but if there were I to be to have much thinking of maybe to

pursue of it for self. because for me a cure is of a hope of maybe

having life but to live in fear leaves one to be in cosntant relams

of thinking life isnot worth the living because it causes too much

pains and fears to me.

Sorry to be vent out so much but as I to shared the words in me are

consuming me and I to need a chance to get of them out.

I to need to make a list of what can do and cant do for self so can

be to then base of reality to self. the best things is to me in life

is having a place to go to be to ahve words among a sdafe haven of

people who will be to support and not judge and condemn of me.

Sondra