Re: Re: One of 's too loooong ramblings about isolation & living with autism

[Guest guest]

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. 

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).

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.

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.  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.

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.  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.  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.

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.

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.

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.

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.   

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.

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

[Guest guest]

Thanks so much, . I really appreciate the advice. You always have such

great insight into this life we lead. Actually, I'm a patient of Dr. G's along

with the three boys. I've made great strides along with each of the boys. I'm

coping better unless my strep titers are up. Otherwise, I do ok. I also have a

fantastic husband who is a rock! My mother is great support as well, but my

father was recently diagnosed with ALS and is in a skilled nursing facility. We

are all trying to be there for my dad and for her.

Thanks again for everything, and most of all for listening.

Take care,

Robyn

From: <thecolemans4@...>

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

& living with autism

Date: Thursday, December 30, 2010, 10:14 PM

 

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. 

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).

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.

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.  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.

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.  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.  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.

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.

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.

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.

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.   

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.

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

[Guest guest]

,

I know you meant this for Robin . . . but wow . . . this is really where I

am too. I have completely lost myself in caring for my family . . . and have

made recovering my son my top priority. I needed this so much. Can't wait to

get the book and arm myself with those tools.

Thank you for taking the time to write this.

Looking forward to a fresh start in 2011.

Happy New Year.

Gratefully,

Martha

On Fri, Dec 31, 2010 at 12:14 AM, <thecolemans4@...>wrote:

>

>

> 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. 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).

>

> 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.

>

> 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.

> 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.

>

> 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. 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. 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.

>

> 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.

>

> 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.

>

> 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.

>

> 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.

>

> 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.

>

> HTH

>

>

> ________________________________

> From: RobinW <thelancienfamily@... <thelancienfamily%40gmail.com>>

> <%40>

> 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

>

>

[Guest guest]

Amazing how similar we are!

________________________________

From: Robyn & Greg Coggins <rngcoggs@...>

Sent: Fri, December 31, 2010 12:54:54 AM

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

living with autism

 

Thanks so much, . I really appreciate the advice. You always have such

great insight into this life we lead. Actually, I'm a patient of Dr. G's along

with the three boys. I've made great strides along with each of the boys. I'm

coping better unless my strep titers are up. Otherwise, I do ok. I also have a

fantastic husband who is a rock! My mother is great support as well, but my

father was recently diagnosed with ALS and is in a skilled nursing facility. We

are all trying to be there for my dad and for her.

Thanks again for everything, and most of all for listening.

Take care,

Robyn

From: <thecolemans4@...>

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

living with autism

Date: Thursday, December 30, 2010, 10:14 PM

 

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. 

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).

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.

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.  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.

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.  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.  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.

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.

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.

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.

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.   

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.

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

[Guest guest]

Yes, it is!!

From: <thecolemans4@...>

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

living with autism

Date: Thursday, December 30, 2010, 10:14 PM

 

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. 

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).

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.

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.  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.

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.  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.  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.

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.

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.

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.

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.   

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.

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

[Guest guest]

________________________________

From: Robyn & Greg Coggins <rngcoggs@...>

Sent: Fri, December 31, 2010 12:54:54 AM

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

living with autism

 

Thanks so much, . I really appreciate the advice. You always have such

great insight into this life we lead. Actually, I'm a patient of Dr. G's along

with the three boys. I've made great strides along with each of the boys. I'm

coping better unless my strep titers are up. Otherwise, I do ok. I also have a

fantastic husband who is a rock! My mother is great support as well, but my

father was recently diagnosed with ALS and is in a skilled nursing facility. We

are all trying to be there for my dad and for her.

Thanks again for everything, and most of all for listening.

Take care,

Robyn

From: <thecolemans4@...>

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

living with autism

Date: Thursday, December 30, 2010, 10:14 PM

 

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. 

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).

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.

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.  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.

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.  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.  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.

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.

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.

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.

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.   

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.

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