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

[Guest guest]

Hey Marcia,

So true.  I don't always spend much time obessing about or being hurt (much) by

other's assumptions, since it seems so common among families.  As you know, I

prefer to do it to myself, lol! 

I was actually a bit surprised with myself to feel sensitive, but really it was

mainly making me aware of how I do isolate because of my awareness of others'

lack of understanding, that I learned that I can't be comfortable dropping in on

even my closest people (my siblings) because of it - people who really should

have some of a clue but once in a while get really upset if one of the kids are

rude, or keep forgetting to not stand on the couch, and then if she yells at

them (only happened once), they yell right back - none of that 'respect your

elders' crap out of my kids, I'll assure you.  (Personally, I don't think

yelling is acceptable in very many situations at all, so I don't really give a

rip if it ticks off someone when my kids yellled back, because the adult

shouldn't have yelled in the first place.  It also reinforces how wierd people

sometimes think I am, too - even my extended family - that sucks too, but I'm

not always wierd, and some people have loved it.  I used to enjoy it

before I understood that the 'way I was' was an illness beyond just

an anxiety

disorder I guess, or at least until I passed it on to my children and then

found

myself feeling less up to the task of providing them more social involvement,

more structure, more ... oh perfection I guess. 

We went to the psychologist for the 2nd visit today.  (There's probably

something inappropriate about sharing what you interpreted at the therapist

visit, but I will anyway!)  Today, he asked me if I sometimes felt that if my

kids were moved to a different home and given a couple of years with really

awesome parents, do I think they'd be doing better?  Well, of course that

slammed into a nerve, and I nodded & teared up, and he said " I thought you might

feel that way ... but research (and he listed several examples) show that this

isn't really true. "   (You know me, I need research, even if sometimes it is

psychological).  He said  " This is autism "   (and my brian quickly replaced the

word with and illness).  And you know, I really do see this, because I

work

in this field and see all sorts of parents coming in, and some just seem so

awesome I wish I were them ... but .. their kid isn't fixed yet, either. 

I was

preparing tax records for a family where over $45k had been spent on therapy

and

school visits and home visits etc with a mom I knew was great, in a school I

knew was the 2nd best around.  There certainly was improvement, but the same

problems existed as they did a year before ... just a little less frequently. 

I

just sat and sat for a while, reading the chart.  I remember how much that

impacted me then, because I was comfortable talking to his Mom about it.  Even

though her financial resources were dramatically different than hours, the

amount of improvement they saw - it was nowhere near what we saw in a year under

Dr 's care (and even a fraction of what we saw the first time around when

they took meds for the first year).   Naturally, I forgot it all and my ugly

self-talk picks up again and tells me I'm all at fault - probably as much my

ocd/anxiety/isolation as anything.

And then I had to realize that even if they had been plopped into the home of

awesome energetic joyful parents, but they didn't know about , and didn't

know about diet, well then hell no, my kids wouldn't be any better today -

they'd possibly evne be worse, and those awesome fabulous parents might even

have a little PTSD and self esteem problems by then lol.

So, anyway, he (the dr) remembers to make sure that I keep talking about how

bad

it was back when ... pointing out how even though we're struggling with this

right now, it sounds like it's no where near what it used to be, except that

anger out of my son - being such an intense emotion - FEELS worse than some of

the other stuff.  And it just dawned on me - yeah, the pissy yelling bad

attitude really really sucks, but omg the fact that we can get in each other's

faces and argue, and he can tell me off and be so snotty, or know just what kind

of crack to make - he's only 11, but he acts like a teenager.  But my god, this

child can go toe-to-toe with me ... he doesn't cow down, he fights back, and

once in a while he's even right.  In fact, he never seems more normal than when

in an argument with me - I'm just usually too pissed off to appreciate it.  

The

arguments may not be the typical stuff that people deal with - in our house,

it's about whether or not you're going to transition from this to that, whether

you're going to eat this or that, or say that to your brother, or yell like

that, or use that tone... lol.  Wait - that still sounds like some typical

households.  They're complicated by the spectrum fixations, the sensitivites,

the isolation from not having normal peer friendships (yet - the worst part),

the intolerance for noise and change. 

And then he dropped the real bomb after spending his second time with G.  Our

huge problem right now is his hateful treatment and attitude about his brother -

every sound he makes, just about any time he speaks, G is just flipping out on

him, constantly calling him names, and occasionally hitting or kicking him. 

(You know, when assault is involved, " Siblings Without Rivalry " tools just go

out the window.)  And the intensity of all this has been wearing me down

sooooooooooooo badly that I've been reduced to going toe-to-toe with him.  A

lot

occured during his soy-monster year. Naturally I assume that since it's not all

better now, it's all because I didn't handle it well.  (Well, I didn't, not

always, maybe not even often.)  But the bomb that put it all into perspective -

and I knew he was right as soon as he said it - was that he felt like the level

of fixation/obsession G was displaying in his talking constantly about his

brother was an autistic fixation - a kind of wierd OCD.  Well omg duh!  His

behavior was so far over the top of sibling rivalry that I knew something was so

very wrong with it.  But the emotional trauma of it all (seeing my youngest

child so mistreated by his brother so frequently) was blocking that fact.

Now I have something to work with, something to talk about.  And he gave them

both tools to use - Garrett gets a point when his brother aggrevates him with

his own problems (his too frequent verbal behavior problems, his picking back

and sniping at his brother since his feelings are hurt, his talking to him about

Pokemon which G hates, etc), and his brother gets a point when G yells at him or

calls him names.  Now, this is giving little brother a little too much power -

because he might eventually figure out he can provoke him for points, which I'll

watch carefully for.  But already, in one day, I see an improvement.  (A lot

of

things wear off, but then we can move on to another tactic.)

So I'll hush now.  It's quite simply - you guys (gals and a few guys) are the

ones who understand.  I know some of you even feel the same way.  Some of you

have even already figured it out and are pulling us who haven't back from the

ledges (Marcia...).

I can be so miserable.  I can get so focused on how poorly I'm functioning, or

how much still needs to happen at home.  I certainly don't know how to have

much

of a life outside of autism - especially since a lot of that prior life involved

motorcycles and fun cars and loud music ... Then I can start feeling

dramatically better (ooh amantadine), functioning so much better, and so can my

kids, but I need help sometimes to be able to see it.  I need help to live a

life outside of being ill. 

Before kids and autism, I had adapted quite well to having CFS. I loved cars

and

bikes and even if I was coming apart from my ocd or anxiety or was exhausted, I

could get in my Supra, or I could hop on my bike, and I could feel pure

joy. There was only one point in my life when I was too tired to shift gears. 

I'm such a gearhead girl.  So I'm gonna sell this freakin stupid boring

automatic car.  I'm going to buy a few dirtbikes (soon as I save up for

them (but I will remain off a streetbike for as long as the kids need me, or at

least until I'm 50 or get cancer).  I'm always saying I want my children to be

able to learn to live with joy in spite of their struggles, because I remember a

lot of hell and insanity from childhood, but I also remember so much joy - as a

gearhead lol.  Why am I not doing at least a little of what I love???  (Oh,

well

maybe they were a wee bit too young before, but not now.) 

It's also been a few years, struggling with PANDAS or whatever the heck it is,

that I've actually felt even close to being able to do something like that....

Never give up hope!! 

I apologize for the length of that... It's therapy for me, and maybe one of my

peeps here feels the same way...

________________________________

From: and Marcia Hinds <hindssite@...>

thecolemans4@...;

Sent: Mon, December 27, 2010 7:45:44 AM

Subject: Re: Autism Poem

 

,

You are right, there isn't anyone except a parent who lives this that that

understands just how hard it is to have a child with this thing we call

autism. We had the same issues with . Don't you love how your

well-meaning relatives can't wait to tell you all the reasons your child is

out of control? They are convinced the problem is your parenting. You are

not strict enough and don't set clear limits. We all know " good parenting "

involves consistency but we know this is more than that.

And dealing with your family is a whole other story, so I won't go there.

But don't you just love how this is all your fault and you are spoiling your

child? Like we don't have enough on our plates without their observations

and HELP!!! Put their comments out of your head and realize it is their

ignorance and total lack of compassion that makes them more awful than our

kids. Now who has trouble with empathy? Just always just do what your

kiddo needs. I had to learn early on not to get embarrassed by anything and

not to worry about what anyone thinks.

Marcia

P.S. I loved the poem.

[Guest guest]

,

Your post was almost like reading my biography. I know what you mean about the

PANDAS stuff, the constant doubts, the recriminations...it can be so

overwhelming and disheartening. Veterans, such as Marcia, are definitely a

lifeline. We are not alone and we all fight with the ammo God gave us--love,

perseverance, tenaciousness, obnoxiousness (when warranted ;-)), money, blood,

sweat, tears, and hopefully, a sense of humor.

In all my years before having my kids, I don't think I have grown so much as I

have since becoming a parent--a parent of three boys who've taught me more than

I can say about patience, love, devotion and the power of parental

ferociousness. I can definitely say I wouldn't be the same person I am today if

I had three " normal " children (that's a good thing by the way, LOL). Besides,

like I tell the boys, " normal " is overrated! That being said, my goal is to get

them as functional and independent while retaining their marvelous uniqueness.

Anyway, every little bit of sharing--the pain and the joy--that all of you brave

souls do here and in the world, makes the journey just a little bit easier for

the rest of us.

Thanks again, and Marcia. We love you!!

Robyn

From: <thecolemans4@...>

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

living with autism

Date: Monday, December 27, 2010, 5:11 PM

 

Hey Marcia,

So true.  I don't always spend much time obessing about or being hurt (much) by

other's assumptions, since it seems so common among families.  As you know, I

prefer to do it to myself, lol! 

I was actually a bit surprised with myself to feel sensitive, but really it was

mainly making me aware of how I do isolate because of my awareness of others'

lack of understanding, that I learned that I can't be comfortable dropping in on

even my closest people (my siblings) because of it - people who really should

have some of a clue but once in a while get really upset if one of the kids are

rude, or keep forgetting to not stand on the couch, and then if she yells at

them (only happened once), they yell right back - none of that 'respect your

elders' crap out of my kids, I'll assure you.  (Personally, I don't think

yelling is acceptable in very many situations at all, so I don't really give a

rip if it ticks off someone when my kids yellled back, because the adult

shouldn't have yelled in the first place.  It also reinforces how wierd people

sometimes think I am, too - even my extended family - that sucks too, but I'm

not always wierd, and some people have loved it.  I used to enjoy it

before I understood that the 'way I was' was an illness beyond just

an anxiety

disorder I guess, or at least until I passed it on to my children and then

found

myself feeling less up to the task of providing them more social involvement,

more structure, more ... oh perfection I guess. 

We went to the psychologist for the 2nd visit today.  (There's probably

something inappropriate about sharing what you interpreted at the therapist

visit, but I will anyway!)  Today, he asked me if I sometimes felt that if my

kids were moved to a different home and given a couple of years with really

awesome parents, do I think they'd be doing better?  Well, of course that

slammed into a nerve, and I nodded & teared up, and he said " I thought you might

feel that way ... but research (and he listed several examples) show that this

isn't really true. "   (You know me, I need research, even if sometimes it is

psychological).  He said  " This is autism "   (and my brian quickly replaced the

word with and illness).  And you know, I really do see this, because I

work

in this field and see all sorts of parents coming in, and some just seem so

awesome I wish I were them ... but .. their kid isn't fixed yet, either. 

I was

preparing tax records for a family where over $45k had been spent on therapy

and

school visits and home visits etc with a mom I knew was great, in a school I

knew was the 2nd best around.  There certainly was improvement, but the same

problems existed as they did a year before ... just a little less frequently. 

I

just sat and sat for a while, reading the chart.  I remember how much that

impacted me then, because I was comfortable talking to his Mom about it.  Even

though her financial resources were dramatically different than hours, the

amount of improvement they saw - it was nowhere near what we saw in a year under

Dr 's care (and even a fraction of what we saw the first time around when

they took meds for the first year).   Naturally, I forgot it all and my ugly

self-talk picks up again and tells me I'm all at fault - probably as much my

ocd/anxiety/isolation as anything.

And then I had to realize that even if they had been plopped into the home of

awesome energetic joyful parents, but they didn't know about , and didn't

know about diet, well then hell no, my kids wouldn't be any better today -

they'd possibly evne be worse, and those awesome fabulous parents might even

have a little PTSD and self esteem problems by then lol.

So, anyway, he (the dr) remembers to make sure that I keep talking about how

bad

it was back when ... pointing out how even though we're struggling with this

right now, it sounds like it's no where near what it used to be, except that

anger out of my son - being such an intense emotion - FEELS worse than some of

the other stuff.  And it just dawned on me - yeah, the pissy yelling bad

attitude really really sucks, but omg the fact that we can get in each other's

faces and argue, and he can tell me off and be so snotty, or know just what kind

of crack to make - he's only 11, but he acts like a teenager.  But my god, this

child can go toe-to-toe with me ... he doesn't cow down, he fights back, and

once in a while he's even right.  In fact, he never seems more normal than when

in an argument with me - I'm just usually too pissed off to appreciate it.  

The

arguments may not be the typical stuff that people deal with - in our house,

it's about whether or not you're going to transition from this to that, whether

you're going to eat this or that, or say that to your brother, or yell like

that, or use that tone... lol.  Wait - that still sounds like some typical

households.  They're complicated by the spectrum fixations, the sensitivites,

the isolation from not having normal peer friendships (yet - the worst part),

the intolerance for noise and change. 

And then he dropped the real bomb after spending his second time with G.  Our

huge problem right now is his hateful treatment and attitude about his brother -

every sound he makes, just about any time he speaks, G is just flipping out on

him, constantly calling him names, and occasionally hitting or kicking him. 

(You know, when assault is involved, " Siblings Without Rivalry " tools just go

out the window.)  And the intensity of all this has been wearing me down

sooooooooooooo badly that I've been reduced to going toe-to-toe with him.  A

lot

occured during his soy-monster year. Naturally I assume that since it's not all

better now, it's all because I didn't handle it well.  (Well, I didn't, not

always, maybe not even often.)  But the bomb that put it all into perspective -

and I knew he was right as soon as he said it - was that he felt like the level

of fixation/obsession G was displaying in his talking constantly about his

brother was an autistic fixation - a kind of wierd OCD.  Well omg duh!  His

behavior was so far over the top of sibling rivalry that I knew something was so

very wrong with it.  But the emotional trauma of it all (seeing my youngest

child so mistreated by his brother so frequently) was blocking that fact.

Now I have something to work with, something to talk about.  And he gave them

both tools to use - Garrett gets a point when his brother aggrevates him with

his own problems (his too frequent verbal behavior problems, his picking back

and sniping at his brother since his feelings are hurt, his talking to him about

Pokemon which G hates, etc), and his brother gets a point when G yells at him or

calls him names.  Now, this is giving little brother a little too much power -

because he might eventually figure out he can provoke him for points, which I'll

watch carefully for.  But already, in one day, I see an improvement.  (A lot

of

things wear off, but then we can move on to another tactic.)

So I'll hush now.  It's quite simply - you guys (gals and a few guys) are the

ones who understand.  I know some of you even feel the same way.  Some of you

have even already figured it out and are pulling us who haven't back from the

ledges (Marcia...).

I can be so miserable.  I can get so focused on how poorly I'm functioning, or

how much still needs to happen at home.  I certainly don't know how to have

much

of a life outside of autism - especially since a lot of that prior life involved

motorcycles and fun cars and loud music ... Then I can start feeling

dramatically better (ooh amantadine), functioning so much better, and so can my

kids, but I need help sometimes to be able to see it.  I need help to live a

life outside of being ill. 

Before kids and autism, I had adapted quite well to having CFS. I loved cars

and

bikes and even if I was coming apart from my ocd or anxiety or was exhausted, I

could get in my Supra, or I could hop on my bike, and I could feel pure

joy. There was only one point in my life when I was too tired to shift gears. 

I'm such a gearhead girl.  So I'm gonna sell this freakin stupid boring

automatic car.  I'm going to buy a few dirtbikes (soon as I save up for

them (but I will remain off a streetbike for as long as the kids need me, or at

least until I'm 50 or get cancer).  I'm always saying I want my children to be

able to learn to live with joy in spite of their struggles, because I remember a

lot of hell and insanity from childhood, but I also remember so much joy - as a

gearhead lol.  Why am I not doing at least a little of what I love???  (Oh,

well

maybe they were a wee bit too young before, but not now.) 

It's also been a few years, struggling with PANDAS or whatever the heck it is,

that I've actually felt even close to being able to do something like that....

Never give up hope!! 

I apologize for the length of that... It's therapy for me, and maybe one of my

peeps here feels the same way...

________________________________

From: and Marcia Hinds <hindssite@...>

thecolemans4@...;

Sent: Mon, December 27, 2010 7:45:44 AM

Subject: Re: Autism Poem

 

,

You are right, there isn't anyone except a parent who lives this that that

understands just how hard it is to have a child with this thing we call

autism. We had the same issues with . Don't you love how your

well-meaning relatives can't wait to tell you all the reasons your child is

out of control? They are convinced the problem is your parenting. You are

not strict enough and don't set clear limits. We all know " good parenting "

involves consistency but we know this is more than that.

And dealing with your family is a whole other story, so I won't go there.

But don't you just love how this is all your fault and you are spoiling your

child? Like we don't have enough on our plates without their observations

and HELP!!! Put their comments out of your head and realize it is their

ignorance and total lack of compassion that makes them more awful than our

kids. Now who has trouble with empathy? Just always just do what your

kiddo needs. I had to learn early on not to get embarrassed by anything and

not to worry about what anyone thinks.

Marcia

P.S. I loved the poem.

[Guest guest]

, thank you for your post, it helped me so much! I have been so depressed

today and your post made me feel so much better. I needed to hear that!

Rhonda Masengale

On Dec 27, 2010, at 8:22 PM, Robyn & Greg Coggins <rngcoggs@...>

wrote:

> ,

>

> Your post was almost like reading my biography. I know what you mean about the

PANDAS stuff, the constant doubts, the recriminations...it can be so

overwhelming and disheartening. Veterans, such as Marcia, are definitely a

lifeline. We are not alone and we all fight with the ammo God gave us--love,

perseverance, tenaciousness, obnoxiousness (when warranted ;-)), money, blood,

sweat, tears, and hopefully, a sense of humor.

>

> In all my years before having my kids, I don't think I have grown so much as I

have since becoming a parent--a parent of three boys who've taught me more than

I can say about patience, love, devotion and the power of parental

ferociousness. I can definitely say I wouldn't be the same person I am today if

I had three " normal " children (that's a good thing by the way, LOL). Besides,

like I tell the boys, " normal " is overrated! That being said, my goal is to get

them as functional and independent while retaining their marvelous uniqueness.

>

> Anyway, every little bit of sharing--the pain and the joy--that all of you

brave souls do here and in the world, makes the journey just a little bit easier

for the rest of us.

>

> Thanks again, and Marcia. We love you!!

>

> Robyn

>

>

>

> From: <thecolemans4@...>

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

living with autism

>

> Date: Monday, December 27, 2010, 5:11 PM

>

>

>

> Hey Marcia,

>

> So true. I don't always spend much time obessing about or being hurt (much)

by

>

> other's assumptions, since it seems so common among families. As you know, I

>

> prefer to do it to myself, lol!

>

> I was actually a bit surprised with myself to feel sensitive, but really it

was

>

> mainly making me aware of how I do isolate because of my awareness of others'

>

> lack of understanding, that I learned that I can't be comfortable dropping in

on

>

> even my closest people (my siblings) because of it - people who really should

>

> have some of a clue but once in a while get really upset if one of the kids

are

>

> rude, or keep forgetting to not stand on the couch, and then if she yells at

>

> them (only happened once), they yell right back - none of that 'respect your

>

> elders' crap out of my kids, I'll assure you. (Personally, I don't think

>

> yelling is acceptable in very many situations at all, so I don't really give a

>

> rip if it ticks off someone when my kids yellled back, because the adult

>

> shouldn't have yelled in the first place. It also reinforces how wierd people

>

> sometimes think I am, too - even my extended family - that sucks too, but I'm

>

> not always wierd, and some people have loved it. I used to enjoy it

>

> before I understood that the 'way I was' was an illness beyond just an anxiety

>

> disorder I guess, or at least until I passed it on to my children and then

found

>

> myself feeling less up to the task of providing them more social involvement,

>

> more structure, more ... oh perfection I guess.

>

> We went to the psychologist for the 2nd visit today. (There's probably

>

> something inappropriate about sharing what you interpreted at the therapist

>

> visit, but I will anyway!) Today, he asked me if I sometimes felt that if my

>

> kids were moved to a different home and given a couple of years with really

>

> awesome parents, do I think they'd be doing better? Well, of course that

>

> slammed into a nerve, and I nodded & teared up, and he said " I thought you

might

>

> feel that way ... but research (and he listed several examples) show that this

>

> isn't really true. " (You know me, I need research, even if sometimes it is

>

> psychological). He said " This is autism " (and my brian quickly replaced the

>

> word with and illness). And you know, I really do see this, because I

work

>

> in this field and see all sorts of parents coming in, and some just seem so

>

> awesome I wish I were them ... but .. their kid isn't fixed yet, either. I

was

>

> preparing tax records for a family where over $45k had been spent on therapy

and

>

> school visits and home visits etc with a mom I knew was great, in a school I

>

> knew was the 2nd best around. There certainly was improvement, but the same

>

> problems existed as they did a year before ... just a little less frequently.

I

>

> just sat and sat for a while, reading the chart. I remember how much that

>

> impacted me then, because I was comfortable talking to his Mom about it. Even

>

> though her financial resources were dramatically different than hours, the

>

> amount of improvement they saw - it was nowhere near what we saw in a year

under

>

> Dr 's care (and even a fraction of what we saw the first time around

when

>

> they took meds for the first year). Naturally, I forgot it all and my ugly

>

> self-talk picks up again and tells me I'm all at fault - probably as much my

>

> ocd/anxiety/isolation as anything.

>

> And then I had to realize that even if they had been plopped into the home of

>

> awesome energetic joyful parents, but they didn't know about , and didn't

>

> know about diet, well then hell no, my kids wouldn't be any better today -

>

> they'd possibly evne be worse, and those awesome fabulous parents might even

>

> have a little PTSD and self esteem problems by then lol.

>

> So, anyway, he (the dr) remembers to make sure that I keep talking about how

bad

>

> it was back when ... pointing out how even though we're struggling with this

>

> right now, it sounds like it's no where near what it used to be, except that

>

> anger out of my son - being such an intense emotion - FEELS worse than some of

>

> the other stuff. And it just dawned on me - yeah, the pissy yelling bad

>

> attitude really really sucks, but omg the fact that we can get in each other's

>

> faces and argue, and he can tell me off and be so snotty, or know just what

kind

>

> of crack to make - he's only 11, but he acts like a teenager. But my god,

this

>

> child can go toe-to-toe with me ... he doesn't cow down, he fights back, and

>

> once in a while he's even right. In fact, he never seems more normal than

when

>

> in an argument with me - I'm just usually too pissed off to appreciate it.

The

>

> arguments may not be the typical stuff that people deal with - in our house,

>

> it's about whether or not you're going to transition from this to that,

whether

>

> you're going to eat this or that, or say that to your brother, or yell like

>

> that, or use that tone... lol. Wait - that still sounds like some typical

>

> households. They're complicated by the spectrum fixations, the sensitivites,

>

> the isolation from not having normal peer friendships (yet - the worst part),

>

> the intolerance for noise and change.

>

> And then he dropped the real bomb after spending his second time with G. Our

>

> huge problem right now is his hateful treatment and attitude about his brother

-

>

> every sound he makes, just about any time he speaks, G is just flipping out on

>

> him, constantly calling him names, and occasionally hitting or kicking him.

>

> (You know, when assault is involved, " Siblings Without Rivalry " tools just go

>

> out the window.) And the intensity of all this has been wearing me down

>

> sooooooooooooo badly that I've been reduced to going toe-to-toe with him. A

lot

>

> occured during his soy-monster year. Naturally I assume that since it's not

all

>

> better now, it's all because I didn't handle it well. (Well, I didn't, not

>

> always, maybe not even often.) But the bomb that put it all into perspective

-

>

> and I knew he was right as soon as he said it - was that he felt like the

level

>

> of fixation/obsession G was displaying in his talking constantly about his

>

> brother was an autistic fixation - a kind of wierd OCD. Well omg duh! His

>

> behavior was so far over the top of sibling rivalry that I knew something was

so

>

> very wrong with it. But the emotional trauma of it all (seeing my youngest

>

> child so mistreated by his brother so frequently) was blocking that fact.

>

> Now I have something to work with, something to talk about. And he gave them

>

> both tools to use - Garrett gets a point when his brother aggrevates him with

>

> his own problems (his too frequent verbal behavior problems, his picking back

>

> and sniping at his brother since his feelings are hurt, his talking to him

about

>

> Pokemon which G hates, etc), and his brother gets a point when G yells at him

or

>

> calls him names. Now, this is giving little brother a little too much power -

>

> because he might eventually figure out he can provoke him for points, which

I'll

>

> watch carefully for. But already, in one day, I see an improvement. (A lot

of

>

> things wear off, but then we can move on to another tactic.)

>

> So I'll hush now. It's quite simply - you guys (gals and a few guys) are the

>

> ones who understand. I know some of you even feel the same way. Some of you

>

> have even already figured it out and are pulling us who haven't back from the

>

> ledges (Marcia...).

>

> I can be so miserable. I can get so focused on how poorly I'm functioning, or

>

> how much still needs to happen at home. I certainly don't know how to have

much

>

> of a life outside of autism - especially since a lot of that prior life

involved

>

> motorcycles and fun cars and loud music ... Then I can start feeling

>

> dramatically better (ooh amantadine), functioning so much better, and so can

my

>

> kids, but I need help sometimes to be able to see it. I need help to live a

>

> life outside of being ill.

>

> Before kids and autism, I had adapted quite well to having CFS. I loved cars

and

>

> bikes and even if I was coming apart from my ocd or anxiety or was exhausted,

I

>

> could get in my Supra, or I could hop on my bike, and I could feel pure

>

> joy. There was only one point in my life when I was too tired to shift gears.

>

> I'm such a gearhead girl. So I'm gonna sell this freakin stupid boring

>

> automatic car. I'm going to buy a few dirtbikes (soon as I save up for

>

> them (but I will remain off a streetbike for as long as the kids need me, or

at

>

> least until I'm 50 or get cancer). I'm always saying I want my children to be

>

> able to learn to live with joy in spite of their struggles, because I remember

a

>

> lot of hell and insanity from childhood, but I also remember so much joy - as

a

>

> gearhead lol. Why am I not doing at least a little of what I love??? (Oh,

well

>

> maybe they were a wee bit too young before, but not now.)

>

> It's also been a few years, struggling with PANDAS or whatever the heck it is,

>

> that I've actually felt even close to being able to do something like that....

>

> Never give up hope!!

>

> I apologize for the length of that... It's therapy for me, and maybe one of my

>

> peeps here feels the same way...

>

>

>

> ________________________________

>

> From: and Marcia Hinds <hindssite@...>

>

> thecolemans4@...;

>

> Sent: Mon, December 27, 2010 7:45:44 AM

>

> Subject: Re: Autism Poem

>

>

>

> ,

>

> You are right, there isn't anyone except a parent who lives this that that

>

> understands just how hard it is to have a child with this thing we call

>

> autism. We had the same issues with . Don't you love how your

>

> well-meaning relatives can't wait to tell you all the reasons your child is

>

> out of control? They are convinced the problem is your parenting. You are

>

> not strict enough and don't set clear limits. We all know " good parenting "

>

> involves consistency but we know this is more than that.

>

> And dealing with your family is a whole other story, so I won't go there.

>

> But don't you just love how this is all your fault and you are spoiling your

>

> child? Like we don't have enough on our plates without their observations

>

> and HELP!!! Put their comments out of your head and realize it is their

>

> ignorance and total lack of compassion that makes them more awful than our

>

> kids. Now who has trouble with empathy? Just always just do what your

>

> kiddo needs. I had to learn early on not to get embarrassed by anything and

>

> not to worry about what anyone thinks.

>

> Marcia

>

> P.S. I loved the poem.

>

>

[Guest guest]

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