Re: Asperger Daughter with MR has yet another dx

[Guest guest]

In a message dated 2/14/2007 6:00:38 AM Pacific Standard Time,

mkisses@... writes:

My husband is tired (hubby two) of dealing with me being upset and

trying to get Lily as far as she can go ( " accept her as she is and

let her be...you're neglecting the rest of us. Do it or it's

over " ...his words)....what am I suppose to do?

I think you're doing all you can

your husband is the one who should be doing more

im sorryhes so insensitive

JOANNE

[Guest guest]

, is there anyone near you that you can reach out to for help?

Your husband is the one supposed to help you but it sounds to me like he is just

another baby crying in his crib and awaiting his own turn at your services. You

need time for yourself. After that, your time goes to your children. If you

don't get time for you first, you will have nothing to give your children.

Reach out to a friend, to a relative, someone who is sincere, and tell them

you are exhausted and need rest. And take some rest.

Don't feel guilty. You are like a car out of gas, and you need a refill or you

can't go on.there is no guilt in that. Take it for your children's sake.

tanna

( ) Asperger Daughter with MR has yet another dx

I am nearly distraught at this point. Everytime I think I have

accepted and learned/researched enough, now we have epilepsy. She

started having seizures when she turned twelve last summer. The EEG

was so bad that they made me wait to see neuro instead of having

results read ina couple days and then be called like it was suppose

to be.

He only did a quick scan of the EEG but said he wanted her on meds

immediately...wrote a script and told me to call him today to find

out more. I'm so upset. My poor girl, how much should she have to

cope with? She has autism, is a 7 yo trapped in a growing body, now

has epilepsy and had a heart syndrome that was corrected by surgery

at 18 mos old.

My husband is tired (hubby two) of dealing with me being upset and

trying to get Lily as far as she can go ( " accept her as she is and

let her be...you're neglecting the rest of us. Do it or it's

over " ...his words)....what am I suppose to do? Just let her stew at

a seven year old level and never challenge her? Just say, oh well,

throw my hands in air and take care of her as maintainence? I don't

think so.

When does it end??? I have a son with mental illness, another with

PDD-NOS and mild MR. I'm dx'd with MS and not doing great, what do

people expect of me?

My kids DO come first, and I am whipped by the time I deal with that.

Thanks for letting me vent, I feel overwhelmed and like I'm drowning.

S

[Guest guest]

First, I'm sorry to hear about the epilepsy diagnosis. I suppose the up side is

that now

you'll be able to do something about the seizures, and that has to be a good

thing.

Mostly, though, I'm writing because I can very much relate to your sense of

being

overwhelmed by all of the demands. I felt that way too a few years ago. I have

kids with

AS, ADHD, BD, OCD, and just a general alphabet soup of disorders. They do suck

the

energy right out of you.

What helped me was three things. First, my dh was telling me that I was " no fun

anymore " ,

but not really pulling his weight with the kids. We went to couples therapy for

about six

sessions. He heard me about how overwhelmed I was and how much I needed his

help,

and started pitching in. I heard how frustrated he was with where he sat on my

priority

list, and determined to make our relationship stronger. Somehow.

Second, I was seeing a therapist on my own behalf (I have BD too). She pointed

out that,

like a battery, I was the source of energy driving all the theraputic stuff we

were doing with

the kids. She said, " If you don't recharge a battery, it goes dead, and then

who's going to

manage everything that needs to be done? " That made sense to me.

Finally, one day I realized that somehow I always managed to find time for all

those

appointments and school meetings and doctors and therapists and all that

one-on-one

time with the kids. No matter what was going on in my life, if the school

called, I was

there. If somebody needed to see a doctor, I was there. If somebody melted

down (which

happened about every 15 minutes it seemed) I was there to handle it. I finally

realized

that I *could* make time for stuff. I was doing it all the time. For everybody

except me.

The day I decided *I* was at least as much of a priority to myself as the vice

principal over

at the school, was the day I realized I *did* have time to recharge me. I just

had to take it

instead of thinking that everything else had a higher priority than I did. One

of the things

I did with my newly discovered/created free time was get out with my dh. I

highly

recommend it.

You *have* to take care of you if you're going to be *able* to take care of

everybody else.

Sue C.

<snip>

> When does it end??? I have a son with mental illness, another with

> PDD-NOS and mild MR. I'm dx'd with MS and not doing great, what do

> people expect of me?

> My kids DO come first, and I am whipped by the time I deal with that.

> Thanks for letting me vent, I feel overwhelmed and like I'm drowning.

> S

>

[Guest guest]

,

I'm part of a Sjogren's Syndrome listserv, (SS is an autoimmune

disease that mostly affects eyes and salivary ducts, but people can

also have it in their central nervous system), and lots of people

report that their husbands get sick (ha) of having a sick wife. Like

it's something we can control. My dh is always telling me that I'll

feel better if I exercise more. Mostly that's true, but not always.

Sometimes all I want is an appointment with my bed. Could you get

funds from the county for someone to help you with the kids a certain

number of hours per week? That's the only thing I can think of. I

wish I had a better answer.

Take care,

Liz

On Feb 14, 2007, at 8:59 AM, wrote:

> I am nearly distraught at this point. Everytime I think I have

> accepted and learned/researched enough, now we have epilepsy. She

> started having seizures when she turned twelve last summer. The EEG

> was so bad that they made me wait to see neuro instead of having

> results read ina couple days and then be called like it was suppose

> to be.

> He only did a quick scan of the EEG but said he wanted her on meds

> immediately...wrote a script and told me to call him today to find

> out more. I'm so upset. My poor girl, how much should she have to

> cope with? She has autism, is a 7 yo trapped in a growing body, now

> has epilepsy and had a heart syndrome that was corrected by surgery

> at 18 mos old.

> My husband is tired (hubby two) of dealing with me being upset and

> trying to get Lily as far as she can go ( " accept her as she is and

> let her be...you're neglecting the rest of us. Do it or it's

> over " ...his words)....what am I suppose to do? Just let her stew at

> a seven year old level and never challenge her? Just say, oh well,

> throw my hands in air and take care of her as maintainence? I don't

> think so.

> When does it end??? I have a son with mental illness, another with

> PDD-NOS and mild MR. I'm dx'd with MS and not doing great, what do

> people expect of me?

> My kids DO come first, and I am whipped by the time I deal with that.

> Thanks for letting me vent, I feel overwhelmed and like I'm drowning.

> S

>

>

>

[Guest guest]

I feel ya, my (hubby2), this morning of all days (valentine's day), decides to

get upset over the smallest thing and said he's tired of " not getting anywhere "

with us. Really put a damper on my day!

momwithattitude2@... wrote:

In a message dated 2/14/2007 6:00:38 AM Pacific Standard Time,

mkisses@... writes:

My husband is tired (hubby two) of dealing with me being upset and

trying to get Lily as far as she can go ( " accept her as she is and

let her be...you're neglecting the rest of us. Do it or it's

over " ...his words)....what am I suppose to do?

I think you're doing all you can

your husband is the one who should be doing more

im sorryhes so insensitive

JOANNE

[Guest guest]

SUSAN HUGGS!!!!!! You are so supportive and helpful with everyone here..

You are sure going through

A rough time now. I cannot relate to having a child with epilepsy.. I did

have grand mals when I was a child.. And remember how miserable I felt

afterwards.. ( medically caused.. Long story. Now cured) now.. I do have a

dog with seizures and its the scariest thing I have ever seen.

I know that doesn't' compare to having a child with them... Not at all....

The thing with being a parent is you would take their place in a second if

it meant they wouldn't have to go through it again.

If its any consolation.. I work with a girl who has had seizures.. And the

medications she uses.. Have worked very well once they were tweaked.. She

hasn't had one in almost 6 years. So

Chin up and vent here any time Hon..

We're here to listen too

for awesome autism gear look HERE!

http://www.cafepress.com/autismawarenes

For Fun Fashion gear look HERE!

http://www.cafepress.com/stronggear

For Fun Animal Activist Gear go HERE!

http://www.cafepress.com/vegetarianrus

and don't forget Ribbons of hope! Show your support

and show your ribbon.

http://www.cafepress.com/ribbonsofhope

-- ( ) Asperger Daughter with MR has yet another dx

I am nearly distraught at this point. Everytime I think I have

accepted and learned/researched enough, now we have epilepsy. She

started having seizures when she turned twelve last summer. The EEG

was so bad that they made me wait to see neuro instead of having

results read ina couple days and then be called like it was suppose

to be.

He only did a quick scan of the EEG but said he wanted her on meds

immediately...wrote a script and told me to call him today to find

out more. I'm so upset. My poor girl, how much should she have to

cope with? She has autism, is a 7 yo trapped in a growing body, now

has epilepsy and had a heart syndrome that was corrected by surgery

at 18 mos old.

My husband is tired (hubby two) of dealing with me being upset and

trying to get Lily as far as she can go ( " accept her as she is and

let her be...you're neglecting the rest of us. Do it or it's

over " ...his words)....what am I suppose to do? Just let her stew at

a seven year old level and never challenge her? Just say, oh well,

throw my hands in air and take care of her as maintainence? I don't

think so.

When does it end??? I have a son with mental illness, another with

PDD-NOS and mild MR. I'm dx'd with MS and not doing great, what do

people expect of me?

My kids DO come first, and I am whipped by the time I deal with that.

Thanks for letting me vent, I feel overwhelmed and like I'm drowning.

S

[Guest guest]

Sue C.

You have a wonderful way of putting things in perspective. I really needed to

hear that today, even if it wasn't intended for me :-)

- C.

Mom to Cassie 15 PCOS, Austin 13 ADHD and a 3 HFA/AS & SPD/SID

( ) Re: Asperger Daughter with MR has yet another dx

First, I'm sorry to hear about the epilepsy diagnosis. I suppose the up side

is that now

you'll be able to do something about the seizures, and that has to be a good

thing.

Mostly, though, I'm writing because I can very much relate to your sense of

being

overwhelmed by all of the demands. I felt that way too a few years ago. I have

kids with

AS, ADHD, BD, OCD, and just a general alphabet soup of disorders. They do suck

the

energy right out of you.

What helped me was three things. First, my dh was telling me that I was " no

fun anymore " ,

but not really pulling his weight with the kids. We went to couples therapy

for about six

sessions. He heard me about how overwhelmed I was and how much I needed his

help,

and started pitching in. I heard how frustrated he was with where he sat on my

priority

list, and determined to make our relationship stronger. Somehow.

Second, I was seeing a therapist on my own behalf (I have BD too). She pointed

out that,

like a battery, I was the source of energy driving all the theraputic stuff we

were doing with

the kids. She said, " If you don't recharge a battery, it goes dead, and then

who's going to

manage everything that needs to be done? " That made sense to me.

Finally, one day I realized that somehow I always managed to find time for all

those

appointments and school meetings and doctors and therapists and all that

one-on-one

time with the kids. No matter what was going on in my life, if the school

called, I was

there. If somebody needed to see a doctor, I was there. If somebody melted

down (which

happened about every 15 minutes it seemed) I was there to handle it. I finally

realized

that I *could* make time for stuff. I was doing it all the time. For everybody

except me.

The day I decided *I* was at least as much of a priority to myself as the vice

principal over

at the school, was the day I realized I *did* have time to recharge me. I just

had to take it

instead of thinking that everything else had a higher priority than I did. One

of the things

I did with my newly discovered/created free time was get out with my dh. I

highly

recommend it.

You *have* to take care of you if you're going to be *able* to take care of

everybody else.

Sue C.

Recent Activity

a.. 30New Members

b.. 6New Photos

Visit Your Group

TV

See bios & photos

Get to know The

Apprentice teams.

Search Ads

Get new customers.

List your web site

in Search.

Start a group

in 3 easy steps.

Connect with others.

.

[Guest guest]

Seems like you wouldn't be so stressed out if hubby bothered to shoulder some of

the problems. You can only do so much. I think you have a huge huge amount on

your plate! Of course you can't give up on your Lily. I'm not sure what

" accept her as she is " means. Of course, you can't expect she will be " NT " so

in that sense, you have to accept she has these challenges in her life. But

seeing that she has what she needs and is learning to the best of her ability is

something you do because you are her mother. I would never stop doing that. Is

there a church in your area you can start attending? Other family in your

area? Have you connected with your state's disability organization? You must

work to find connections and get some respite care going so you can recharge

yourself. I know that is not easy to do - but look around and try please! And

hang in there!

Roxanna

( ) Asperger Daughter with MR has yet another dx

I am nearly distraught at this point. Everytime I think I have

accepted and learned/researched enough, now we have epilepsy. She

started having seizures when she turned twelve last summer. The EEG

was so bad that they made me wait to see neuro instead of having

results read ina couple days and then be called like it was suppose

to be.

He only did a quick scan of the EEG but said he wanted her on meds

immediately...wrote a script and told me to call him today to find

out more. I'm so upset. My poor girl, how much should she have to

cope with? She has autism, is a 7 yo trapped in a growing body, now

has epilepsy and had a heart syndrome that was corrected by surgery

at 18 mos old.

My husband is tired (hubby two) of dealing with me being upset and

trying to get Lily as far as she can go ( " accept her as she is and

let her be...you're neglecting the rest of us. Do it or it's

over " ...his words)....what am I suppose to do? Just let her stew at

a seven year old level and never challenge her? Just say, oh well,

throw my hands in air and take care of her as maintainence? I don't

think so.

When does it end??? I have a son with mental illness, another with

PDD-NOS and mild MR. I'm dx'd with MS and not doing great, what do

people expect of me?

My kids DO come first, and I am whipped by the time I deal with that.

Thanks for letting me vent, I feel overwhelmed and like I'm drowning.

S

------------------------------------------------------------------------------

No virus found in this incoming message.

Checked by AVG Free Edition.

Version: 7.1.411 / Virus Database: 268.17.39/686 - Release Date: 2/14/2007