Re: CYNTHIA'S RESPONSE

[Guest guest]

Thank you so much for a response, you reconfirmed things I already know but am

having a hard time doing, gave me new info to add to my never ending reading

list for personal growth, and gave some options I just flat haven't thought

about!

I responded in line and in caps to keep the train of thought...no screaming,

promise.

>

> Oh Robin -

> Eight years is right about that breaking point! Bless your heart.

> It took me a loooong time to figure out how in the world to enjoy anything. 

THAT'S WHERE I AM NOW. SITTING ON AN EXOTIC WHITE SAND BEACH AS WE SPEAK AND I

CAN'T EVEN ENJOY IT.

I'm

> really still struggling with it.  As soon as the kids went back to school, I

> went back to work part time - in an autism environment of course, and doing

one

> of the most stressfull things I could have chosen lol! (mental health medical

> billing - which I swore I'd never go back to but I'm so dang good at it thanks

> to OCD).

IN OUR CASE I'M A PERPETUAL STUDENT, AN ORGANIZATION GURU/FREAK, AND STAY AT

HOME MOM BUT IT'S A CHOICE WE MADE AS A FAMILY

>

> First, join Flylady's website or email group.  She helps us rethink our homes

> and our routines and our lives, and constantly reminds us to take care of

> ourselves and schedule that time in.  I'm not kidding - this is important. 

Go

> ahead and sign up, and just see.  Warm messages, positive thing, rethinking

your

> day to day behavior... good.

I'M FAMILIAR WITH THE SITE BUT DIDN'T KNOW IT SENT POSITIVE VIBES TOO...WILL

CHECK IT OUT!

>

> Then you have to figure what in the world you actually want to do.  Then you

> have to do it a few times and gain absolutely no pleasure from the effort. 

NOT SURE I KNOW WHAT YOU MEAN, I ALREADY DO THINGS WITHOUT THE GRATIFICATION OF

PLEASURE...CAN YOU TELL ME MORE?

One

> of the only outings I actually enjoyed was one day I left straight from work

and

> watched a movie at the dollar theater - I parked on the side of the road half

an

> hour a mile from my work struggling with whether to go, or go home to a messy

> house and fighting kids.  (Why in the WORLD was that a hard choice?? lol -

> 'cause I'm nuts, that's why.)

>

> Maybe start w/some local autism support groups, and find out if they do

> activities that have nothing to do with autism.  By starting there, you get

> around a few other women, and maybe some of them can show you where to start,

> because surely some are in the same situation.

I DO TAKE PART IN A COUPLE OF GROUPS LIKE THAT BUT BECAUSE OF OUR LIVING

ARRANGEMENTS, I'M PRETTY MUCH THE ONLY CONSTANT...EVERYONE ELSE MOVES EVERY 3

YEARS SO IT KIND OF JUST SUCKS ME DRY.

>

> We really need a 12-step type program for us moms (and Dads of course - a

rare

> few), something like Al-Anon.  It's too hard to find a place to go when we

> suddenly wake up and realize our vessells are empty and we have to figure out

> how to fill them up.  When we've given our whole lives over to the care of

> someone else and depleted ourselves, we've reached the same type

of emptiness

> that co-dependence brings. We're not supposed to do that, and it's distorted

> thinking when we do, even though it makes total sense, even when the

> obstacles are overwhelming.  I believe we get in that position because maybe

we

> were already having some difficulty caring for ourselves before that.  If you

> have a single qualifier for that program, then I would absolutely recommend

> starting there. 

VERY PERCEPTIVE AND SOMETHING I NEVER THOUGHT ABOUT. I THINK YOU ARE VERY RIGHT

IN THAT I AM MAKING MY NEURO-TYPICAL CHILD AND HUBBY DEPENDENT BY SMOOTHING TOO

MANY EDGES. HARD HABIT TO BREAK I THINK BUT WILL WORK ON IT. I KEEP TELLING

THEM I CAN'T BE EVERYTHING TO EVERYONE BUT CONTINUE IN THE SAME PATH...I'VE GOT

TO DO SOMETHING HERE.

You don't have to have anyone immediately in active

> addiction or alocoholism - just have a friend or family member that is.  Our

> thinking, when we have descended into this world without taking out time for

> ourselves, is absolutely no different than those trapped in families of

> addictions, and our thinking and ability to focus into ourselves and feel who

we

> are is just as damaged.  I can't move forward in any direction until I

address

> some type of spiritual health (I don't mean religion).  There has to be

support

> groups around for care givers.  If you can't find good ones you like for

autism,

> then find the ones for kids taking care of their parents.  Just find another

> group of people who are getting together and talking about how to help

> themselves live a life while caring for another person's.  We can't just

decide

> to go shopping and lalalala we're all good.  Doesn't work that way.

>

> There are also counseling programs - I cannot emphasize how beneficial they

> could be.  Here in Alabama, we have a phone-in support line for parents.  I

> don't remember to use it, but I'm gonna try to one day when I'm about ready to

> blow, because I know they have resources they can recommend that maybe would

be

> affordable if not free. 

WE HAVE AN APPOINTMENT WITH A THERAPIST WHEN WE RETURN TO TOKYO IN JANUARY.

FAMILY AND INDIVIDUAL CBT FOR CAMERON. HOPEFULLY GOOD WILL FOLLOW!

Sometimes we don't KNOW how to play anymore.  Sometimes

> we can't just go be around normal people (yet), because it just makes us feel

> more alone, because you know they don't comprehend what your existence is.

WOW, I'M SO GLAD TO SEE SOMEONE ELSE SAY IT...MY HUBBY TELLS ME I'M PARANOID AND

WANTING TO WALLOW IN SELF-PITY BUT I DON'T THINK HE EVEN REALLY GRASPS WHAT MY

EXISTENCE IS.

>

> Oooh oooh... great book recommendation.  It'll also give a very clear view

why

> we can't just switch on the lalalala's when we realize we need to make

changes. 

> Changed my world.  Boundaries, by Dr.'s Cloud and Townsend. 

> They're psychologists and maybe some kind of christian group speakers as

well. 

> I've never bought a religious type book (I wouldn't really call it religious

> outright, either) EVER - but this book was the very best thing I had ever

read. 

> It certainly wasn't anything I heard at church.  After that, I

read everything

> else by them that I could get my hands on.  It's basic psychology.  Really

> incredible book.  I've never been more optimistic about life - and more

free as

> I learned boundaries with very stressful people in my life.  I've also never

> held myself more responsible for taking care of myself, either, and it taught

me

> how important it is to reach out for help.  It also helped fill a little of

that

> gaping hole of need that can be so intense that you're terrified another

person

> will feel your desperate lonliness and run the other way!  My biggest excuse

for

> being a hermit when I'm not feeling well is to say that I don't want to

inflict

> myself on others.

I COULDN'T DESCRIBE MYSELF BETTER THAN THAT, WILL GO TO AMAZON.COM NEXT.

>

> You may also want to check with a doctor to see if depression is present. 

Most

> of us moms are struggling with some neuroimmune issues, and even

depression

> can be neuroimmune.  But that's not what will fix the emptiness.  Support. 

> Friendships.  How do we find them?  I completely lost my social skills after

> autism entered my world, and then after I got strep and went downhill from

> there.  Maybe I never had any - I was a weird kid.

>

THIS IS COVERED....ACKNOWLEDGED....AND ADDRESSED. BETWEEN MY CVID AND ITS

INFLUENCE ON OUR FAMILY MOTHER'S LITTLE HELPER IS WHAT MAKES ME ABLE TO EVEN GET

OUT OF BED. I WAS A WEIRD KID TOO....MILITARY BRAT WHO LEARNED EARLY TO KEEP

PEOPLE AT A DISTANCE...THE MOVES WERE EASIER THAT WAY. NOW I'M JUST A WIERD

ADULT THAT CAN'T DO THE CHATTY CATHY BIT FOR THE LIFE OF ME...WITH EVERYTHING

ELSE GOING ON IN MY LIFE I FIND IT IRRELEVANT AND VERY PAINFUL TO TAKE PART IN.

GUESS I SHOULD BE TAKING SOME OF THOSE GARCIA-WINNER LESSONS I DO WITH CAM A

LITTLE CLOSER TO HEART.

> Hang in there Robin, and start somewhere.  Find support, find counseling even

if

> it's by the phone.  Because it's not easy, but it's worth dragging yourself

> every step of the way.  In fact, it's imperitive, because once we feel this

bad,

> we begin to lose our effectiveness.  We have more to give when we care for

us,

> so it's a responsibility.

I KNOW THIS AND THAT'S WHY I'M FINALLY BREAKING DOWN AND ADMITTING MY WELL HAS

JUST ABOUT RUN DRY...YOU HAVE NO IDEA HOW HARD THAT IS FOR ME TO DO.

>

> And don't make anyone's life normal.  Normal is boring.  It's not your job

to

> make their life.  It's not your job to adapt the environment to what everyone

> else wants. You provide food, clean underwear, make sure teethies get

brushed...

> I'm just wondering, because you said " Everyone " - not just an autistic

> child's....  Boundaries  - read it.   

THIS ALL STARTED THIS SUMMER....HAULING THE KIDS BACK TO THE US, DOWN TO DR.

RUSSELL, DOING MY OWN ANNUAL CHECK-UPS (I GIVE MYSELF WEEKLY SUB-Q INJECTIONS

FOR MY CVID), LOADED UP ON GF/DF STUFF TO SHIP BACK (BOTH KIDS HAVE CELIAC FROM

ME), CAIT HAD TO HAVE KIDNEY SURGERY (HEALED BEAUTIFULLY AND PROBLEMS FIXED

NOW), AND HAND HELD FOR MY MOTHER BECAUSE DADDY HAD A STROKE WHILE WE WERE THERE

AND CAIT FOUND HIM ON THE FLOOR. I'M THE OLDEST AND THE ONLY DAUGHTER...NEVER

USED TO BE AN ISSUE BUT IT WEIGHS ON ME MORE NOW THEY ARE GETTING OLDER.

FORTUNATELY TECHNOLOGY ALLOWS ME TO SUPPORT THEM IN SO MANY WAYS THAT JUST

WEREN'T POSSIBLE 5 YEARS AGO AND TECHNOLOGY IS ONE OF THE FEW THINGS I GET SOME

GRATIFICATION FROM.

AMAZON...NEXT STOP!

>

>

> Doesn't mean I'm all hunky dory.  I have a LOT more tools now, though, and

when

> I remember to pick them up and use them, I'm always glad I did.

>

> Email me privately anytime and we'll talk.  I'll share phone#s if you need a

> voice.

SKYPE?

>

THAT'S WHAT I'M LOOKING FOR....TOOLS! I'LL BE BOB THE BUILDER. INTERESTING

THAT THE VERY TERM I USE WHEN DISCUSSING CAMERON'S NEEDS...THEY ARE TOOLS TO

ALLOW HIM A PRODUCTIVE AND GRATIFYING LIFE.

I GET SO UPSET WITH MYSELF BECAUSE OF THIS WEAKNESS IN MYSELF BUT IT'S VERY

HELPFUL TO BE ABLE TO RELATE TO OTHERS. IT MAKES ME REALIZE I'M NOT ALONE,

NEVER WAS. FAITH IS WHAT'S GOTTEN ME THIS FAR, NOW IT'S TIME TO USE SOME GOD

GIVEN INTELLIGENCE TO REFILL MY CUP.

THANKS EVER SO MUCH!

> HTH

>

>

>

>

>

> ________________________________

> From: RobinW <thelancienfamily@...>

>

> Sent: Wed, December 29, 2010 3:39:09 AM

> Subject: Re: One of 's too loooong ramblings about isolation &

> living with autism

>

>  

> I'm not exactly new to the board, but I'm very much a lurker...don't seem to

> have the words to express my feelings the last six months or so but when I

read

> another person's ramblings, my own kept showing in in the text. Cam has

> progressed so much since first seeing Dr. in July, but those

> improvements have at the same time kept me so busy trying to keep up with his

> new found understanding that I'm just overwhelmed, or so I thought. I finally

> just broke down and cried yesterday...I'm not overwhelmed, I'm lonely. I've

been

> bending over backward trying to make everyone else's life as normal as

possible

> and it's left me empty. The problem is I've been doing it for 8 years..I don't

> know where to start the care and feeding of Mom. I know what I should be

doing,

> I just don't have the energy to make myself do it, any suggestions?

>

> Robin

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