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In a message dated 10/03/05 2:14:00 P.M. Pacific Daylight Time,

adnan_rafiq@... writes:

Am I the only father here?

My husband reads the posts to my email occasionally.

~ Dawn

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Not too many stay at home dads,

Aye

Dave!

natesmama2000@... wrote:

In a message dated 10/03/05 2:14:00 P.M. Pacific Daylight Time,

adnan_rafiq@... writes:

Am I the only father here?

My husband reads the posts to my email occasionally.

~ Dawn

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I could use a " stay at home dad " lol,

Dave F <davemarineveteran@...> wrote:Not too many stay at home dads,

Aye

Dave!

natesmama2000@... wrote:

In a message dated 10/03/05 2:14:00 P.M. Pacific Daylight Time,

adnan_rafiq@... writes:

Am I the only father here?

My husband reads the posts to my email occasionally.

~ Dawn

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Share on other sites

i work ten hours every day. but other than that, every

waking moment that I have I spend it working with my

son (trying to incorporate some floor time)

however, i do admit that my wife does the bulk of the

work when it comes to his therapy.

--- Rose <beachbodytan2002@...> wrote:

> I could use a " stay at home dad " lol,

>

> Dave F <davemarineveteran@...> wrote:Not too

> many stay at home dads,

> Aye

> Dave!

>

>

> natesmama2000@... wrote:

>

> In a message dated 10/03/05 2:14:00 P.M. Pacific

> Daylight Time,

> adnan_rafiq@... writes:

>

> Am I the only father here?

>

>

>

> My husband reads the posts to my email occasionally.

>

>

> ~ Dawn

>

>

> [Non-text portions of this message have been

> removed]

>

>

>

>

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Great going all you dads! My husband does not get involved at all.

He has never met my son's Psychologist (he has had 2), has never met

my son's Psychiatrist (he has had 2), has never been to an IEP

meeting, has never been to parent group at my son's school (there are

3 a month all school year), has never been to any conferences or

testings, I think has no idea what meds my son takes. (I have to put

it all in a container for morning if I'm not there). He does spend

time with him, but will not read anything about AS. I tell him ways

to handle him, he listens maybe sometimes. I had my boss at work tell

me once that it is very hard for a man to accept the fact that

something is wrong with their son. Much more so than a MOM. Any tips

on getting him more involved? -Sara

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I thought you were a stay at home dad? Now you wrote that you work 10hrs.

every day. Do you mean you work with your son for 10 hrs a day? if yes, do you

home school him, do social skills with him? what type of therapy does your wife

do with him? do you and your wife do all the teaching for your son instead of

services from schools and doctors? if yes, do you see any progress with your

son? what kind? thank you

Adnan Rafiq <adnan_rafiq@...> wrote: i work ten hours every day. but other

than that, every

waking moment that I have I spend it working with my

son (trying to incorporate some floor time)

however, i do admit that my wife does the bulk of the

work when it comes to his therapy.

--- Rose <beachbodytan2002@...> wrote:

> I could use a " stay at home dad " lol,

>

> Dave F <davemarineveteran@...> wrote:Not too

> many stay at home dads,

> Aye

> Dave!

>

>

> natesmama2000@... wrote:

>

> In a message dated 10/03/05 2:14:00 P.M. Pacific

> Daylight Time,

> adnan_rafiq@... writes:

>

> Am I the only father here?

>

>

>

> My husband reads the posts to my email occasionally.

>

>

> ~ Dawn

>

>

> [Non-text portions of this message have been

> removed]

>

>

>

>

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Just make sure you get some time off for your wife. Let her go to the movies or

call a girlfriend to go with. Something as simple as that means a lot and can

go a long way in revitalizing her and your relationship!

Dave

Adnan Rafiq <adnan_rafiq@...> wrote:

i work ten hours every day. but other than that, every

waking moment that I have I spend it working with my

son (trying to incorporate some floor time)

however, i do admit that my wife does the bulk of the

work when it comes to his therapy.

--- Rose <beachbodytan2002@...> wrote:

> I could use a " stay at home dad " lol,

>

> Dave F <davemarineveteran@...> wrote:Not too

> many stay at home dads,

> Aye

> Dave!

>

>

> natesmama2000@... wrote:

>

> In a message dated 10/03/05 2:14:00 P.M. Pacific

> Daylight Time,

> adnan_rafiq@... writes:

>

> Am I the only father here?

>

>

>

> My husband reads the posts to my email occasionally.

>

>

> ~ Dawn

>

>

> [Non-text portions of this message have been

> removed]

>

>

>

>

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As a dad, I find it difficult to understand how a dad " cannot " get involved.

Maybe it's because I was a single dad and had to be the mom too, but I was

always involved. If there is denial, that's one thing, but sharing the duties

is another, and doing it for the children is the meaning of parenthood, in my

opinion!

Dave

Have you asked him why he doesn't read AS material? Or why he doesn't attend Dr

visits?

sara11alex77 <sara61145@...> wrote:

Great going all you dads! My husband does not get involved at all.

He has never met my son's Psychologist (he has had 2), has never met

my son's Psychiatrist (he has had 2), has never been to an IEP

meeting, has never been to parent group at my son's school (there are

3 a month all school year), has never been to any conferences or

testings, I think has no idea what meds my son takes. (I have to put

it all in a container for morning if I'm not there). He does spend

time with him, but will not read anything about AS. I tell him ways

to handle him, he listens maybe sometimes. I had my boss at work tell

me once that it is very hard for a man to accept the fact that

something is wrong with their son. Much more so than a MOM. Any tips

on getting him more involved? -Sara

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No, I actually work as a software architect for

corporate America. But, I have given up TV, sports and

other forms of entertainment to concentrate for the

times I am not working. To be honest, I really don't

miss the other activities that I mentioned before. My

son is a pure joy! And every moment I spend with him

is woth it. I have zero regrets.

He is going to school (special education) where they

are also starting to mainstream him with regular pre-k

children for 30 mins daily. He is also getting speech

therapy thrice a week. So far, we have been very

pleased, albeit, there are a few major concerns ..

more on that later.

Except for vitamis and fish oil, we don't give him any

medication. We have seen a tremendous improvement in

his anxiety. I can now take him to Chuck-e-Cheese,

grocery store, malls etc. and the noise doesn't bother

him anymore. His motor skills have also improved quite

a bit. Just the other day he climbed up on this

" alligator tail " structure at the park. Now, it is

really steep and long, even for an adult, but he made

it up there all by himself. I almost cried!

What concerns me still is his language. Its just not

improving at a rate that I would like to see. He is 4

now and still talks like a 2-1/2 year old. Also, his

understanding and pragmatics are a bit immature. Still

now peer play. He can tolerate other kids as long as

they are not loud.

As for therapy, we are trying techniques from floor

time. I get down on the floor with him and play with

his toys while talking to him and making him do stuff.

He has already stopped spinning the wheels on his

truck and now moves it back and forth, open its little

doors, and blows its imaginary horn. Another thing is

that we don't listen to him unless he verbally asks

for something in more than one word. My wife has quit

her job so she now takes her to school, speech,

swimming lessons and to the park.

Hope this helps.

--- Rose <beachbodytan2002@...> wrote:

> I thought you were a stay at home dad? Now you

> wrote that you work 10hrs. every day. Do you mean

> you work with your son for 10 hrs a day? if yes, do

> you home school him, do social skills with him?

> what type of therapy does your wife do with him? do

> you and your wife do all the teaching for your son

> instead of services from schools and doctors? if

> yes, do you see any progress with your son? what

> kind? thank you

> Adnan Rafiq <adnan_rafiq@...> wrote: i work

> ten hours every day. but other than that, every

> waking moment that I have I spend it working with my

> son (trying to incorporate some floor time)

>

> however, i do admit that my wife does the bulk of

> the

> work when it comes to his therapy.

>

> --- Rose <beachbodytan2002@...> wrote:

>

> > I could use a " stay at home dad " lol,

> >

> > Dave F <davemarineveteran@...> wrote:Not too

> > many stay at home dads,

> > Aye

> > Dave!

> >

> >

> > natesmama2000@... wrote:

> >

> > In a message dated 10/03/05 2:14:00 P.M. Pacific

> > Daylight Time,

> > adnan_rafiq@... writes:

> >

> > Am I the only father here?

> >

> >

> >

> > My husband reads the posts to my email

> occasionally.

> >

> >

> > ~ Dawn

> >

> >

> > [Non-text portions of this message have been

> > removed]

> >

> >

> >

> >

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My husband is a stay at home dad, but he doesn't read this list.

Meredith

>

> In a message dated 10/03/05 2:14:00 P.M. Pacific Daylight Time,

> adnan_rafiq@y... writes:

>

> Am I the only father here?

>

>

>

> My husband reads the posts to my email occasionally.

>

> ~ Dawn

>

>

>

Link to comment
Share on other sites

Yes, it does help. you both are doing everything I did. My son at 18 months

started in early interventions. with O.T, speech, PT (low muscle tone) social

skills one on one training. at 8 years old he still gets speech. he didn't

start speaking till almost 3 using complete sentences. receives speech to help

with pragmatics and social skills. he is in a regular classroom. still have lots

of trouble with reading/journal writing. needs constant redirecting. (with

prompts) and if told things he can't do, I immediately correct him with the

right way to do it, or the things he can't do, I will show him how he " can " do

them. so the next time he will do it right and not get into trouble. My son

will not figure this out on his own. I also get him very involved in the

community, swimming, karate, horses, lakes, parks. The more I involve him in

social activities the harder it is for people to tell he has aspergers. He was

never on any medications. instead, I just drank an energy

drink and off we went. I told him he has aspergers when he was ready (last

year). His therapist also explained it to him. He also understands every body

is different, not just him. He is basically a very happy boy with a lot of

questions. sometimes I or his teachers will tell him, I have to find out that

answer for you. I don't treat him like he has a disability but I'm also aware

of all concerns. I still supervise him while crossing a street. riding a bike.

He would not think about a car backing out of a driveway while riding his bike

on the sidewalk. I will have to go over safety first. each and every time. He

also has very little (life skills) common sense. He had to be taught each one.

(when he goes into the shower, I tell him to use soap) then show him how to

wash. He would just let the water run over his body, and not use soap. the

milk goes back into the icebox not with the cereal on the shelf. close the

freezer or the food would defrost. exec..He is also

very literal. I have my own way of working with that.

Adnan Rafiq <adnan_rafiq@...> wrote: No, I actually work as a software

architect for

corporate America. But, I have given up TV, sports and

other forms of entertainment to concentrate for the

times I am not working. To be honest, I really don't

miss the other activities that I mentioned before. My

son is a pure joy! And every moment I spend with him

is woth it. I have zero regrets.

He is going to school (special education) where they

are also starting to mainstream him with regular pre-k

children for 30 mins daily. He is also getting speech

therapy thrice a week. So far, we have been very

pleased, albeit, there are a few major concerns ..

more on that later.

Except for vitamis and fish oil, we don't give him any

medication. We have seen a tremendous improvement in

his anxiety. I can now take him to Chuck-e-Cheese,

grocery store, malls etc. and the noise doesn't bother

him anymore. His motor skills have also improved quite

a bit. Just the other day he climbed up on this

" alligator tail " structure at the park. Now, it is

really steep and long, even for an adult, but he made

it up there all by himself. I almost cried!

What concerns me still is his language. Its just not

improving at a rate that I would like to see. He is 4

now and still talks like a 2-1/2 year old. Also, his

understanding and pragmatics are a bit immature. Still

now peer play. He can tolerate other kids as long as

they are not loud.

As for therapy, we are trying techniques from floor

time. I get down on the floor with him and play with

his toys while talking to him and making him do stuff.

He has already stopped spinning the wheels on his

truck and now moves it back and forth, open its little

doors, and blows its imaginary horn. Another thing is

that we don't listen to him unless he verbally asks

for something in more than one word. My wife has quit

her job so she now takes her to school, speech,

swimming lessons and to the park.

Hope this helps.

--- Rose <beachbodytan2002@...> wrote:

> I thought you were a stay at home dad? Now you

> wrote that you work 10hrs. every day. Do you mean

> you work with your son for 10 hrs a day? if yes, do

> you home school him, do social skills with him?

> what type of therapy does your wife do with him? do

> you and your wife do all the teaching for your son

> instead of services from schools and doctors? if

> yes, do you see any progress with your son? what

> kind? thank you

> Adnan Rafiq <adnan_rafiq@...> wrote: i work

> ten hours every day. but other than that, every

> waking moment that I have I spend it working with my

> son (trying to incorporate some floor time)

>

> however, i do admit that my wife does the bulk of

> the

> work when it comes to his therapy.

>

> --- Rose <beachbodytan2002@...> wrote:

>

> > I could use a " stay at home dad " lol,

> >

> > Dave F <davemarineveteran@...> wrote:Not too

> > many stay at home dads,

> > Aye

> > Dave!

> >

> >

> > natesmama2000@... wrote:

> >

> > In a message dated 10/03/05 2:14:00 P.M. Pacific

> > Daylight Time,

> > adnan_rafiq@... writes:

> >

> > Am I the only father here?

> >

> >

> >

> > My husband reads the posts to my email

> occasionally.

> >

> >

> > ~ Dawn

> >

> >

> > [Non-text portions of this message have been

> > removed]

> >

> >

> >

> >

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>

> In a message dated 10/03/05 2:14:00 P.M. Pacific Daylight Time,

> adnan_rafiq@y... writes:

>

> Am I the only father here?

*********

I read the post almost every other day. I admit that my wife does

the lion's share of the work with my son during the week. When I

come home from work, I try to jump right in. On weekends, she knows

that I take over with him. I give her that " time-off " . It was

especially needed during his earlier years when he did not respond

well socially. As for IEPs, meeting teachers (he is in first grade

regular class with a para)and doctors visits, I go unless there is

a really good reason not to go. I let my bosses know upfront what my

situation was, and that I would have to make these meetings. I think

it is really important that both parents go to the meeting. Each

person has a slightly different perspective on their child and the

more input the better the outcome.

Rich D

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Dave:

Thanks for the advice. I have tried talking to my wife

to get some time off for herself but she (we suspect

that she also might be an aspie) is just obsessed with

him to the point that sometimes I worry about her

health. She has gained 40 lbs. since we found out

about my son's PDD (about 10 months ago). Finally, I

have asked her mother to come and stay with us for a

while (am I a great guy or what ;) ) so she can take

care of her.

When he was diagnosed we were told that autism causes

wrecked marriages. So far, my experience has just been

the opposite.

Good to know there is a dedicated dad out there. I

sincerely hope we can give these kids the best

possible future.

- Adnan

--- Dave F <davemarineveteran@...> wrote:

> Just make sure you get some time off for your wife.

> Let her go to the movies or call a girlfriend to go

> with. Something as simple as that means a lot and

> can go a long way in revitalizing her and your

> relationship!

> Dave

>

> Adnan Rafiq <adnan_rafiq@...> wrote:

> i work ten hours every day. but other than that,

> every

> waking moment that I have I spend it working with my

> son (trying to incorporate some floor time)

>

> however, i do admit that my wife does the bulk of

> the

> work when it comes to his therapy.

>

> --- Rose <beachbodytan2002@...> wrote:

>

> > I could use a " stay at home dad " lol,

> >

> > Dave F <davemarineveteran@...> wrote:Not too

> > many stay at home dads,

> > Aye

> > Dave!

> >

> >

> > natesmama2000@... wrote:

> >

> > In a message dated 10/03/05 2:14:00 P.M. Pacific

> > Daylight Time,

> > adnan_rafiq@... writes:

> >

> > Am I the only father here?

> >

> >

> >

> > My husband reads the posts to my email

> occasionally.

> >

> >

> > ~ Dawn

> >

> >

> > [Non-text portions of this message have been

> > removed]

> >

> >

> >

> >

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I have been trying for 6 years to get my husband more involved. I

finally think I just take the attitude - I'll handle everything - it's

much simpler that way and actually less stressful for me, accept when

my husband gets my son riled because he just doesn't understand AS.

I think my husband has a little bit of AS. He talks constantly,

whether anyone is listening or not. Sometimes he and my son have a

discussion where they are both talking endlessly, except they are

talking about 2 different things - LOL! That's something to see! My

husband also has that attitude that if he's not interested in it, he's

not doing it.

-Sara

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Adnan Rafiq <adnan_rafiq@...> wrote:

Am I the only father here?

We usually have one or two resident fathers on the list. But the number never

increases. odd, but one will leave, then we will get a new one. lol. You may

stick around longer than that, of course!

Roxanna

Always Remember You're Unique

Just Like Everyone Else

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

Music Unlimited - Access over 1 million songs. Try it free.

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I'm a dad too. I'm just lurking at this point.

> Am I the only father here?

>

>

>

> We usually have one or two resident fathers on the list. But the

number never increases. odd, but one will leave, then we will get a

new one. lol. You may stick around longer than that, of course!

>

>

>

>

> Roxanna

> Always Remember You're Unique

> Just Like Everyone Else

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> ---------------------------------

> Music Unlimited - Access over 1 million songs. Try it free.

>

>

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Duck <erduckjr@...> wrote:

>

> In a message dated 10/03/05 2:14:00 P.M. Pacific Daylight Time,

> adnan_rafiq@y... writes:

>

> Am I the only father here?

*********

I read the post almost every other day. I admit that my wife does

the lion's share of the work with my son during the week. When I

come home from work, I try to jump right in. On weekends, she knows

that I take over with him. I give her that " time-off " . It was

especially needed during his earlier years when he did not respond

well socially. As for IEPs, meeting teachers (he is in first grade

regular class with a para)and doctors visits, I go unless there is

a really good reason not to go. I let my bosses know upfront what my

situation was, and that I would have to make these meetings. I think

it is really important that both parents go to the meeting. Each

person has a slightly different perspective on their child and the

more input the better the outcome.

Rich D

Hi Rich! I agree about going to meetings with your wife. It does help.

Especially at school meetings, I have found that they listen to my dh much more

than to me. We had one really awful sped lady to deal with once and I used to

tell my dh what I wanted said before a meeting so he could say it. She agreed

with him a lot but never agreed to anything I said!

Roxanna

Always Remember You're Unique

Just Like Everyone Else

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

Music Unlimited - Access over 1 million songs. Try it free.

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Share on other sites

  • 5 years later...

Dear Diane,

Fathers can be a challenge for us Moms when it comes to our ill

children. I had two children who were ill, at the time diagnosed with

CFS. My husband, like yours, just thought if he could make them get to

school, they could start turning around and get better. I was so

frustrated because it seemed that I would comfort them and all he wanted

to do was push them. I couldn't believe he could be so unsympathetic.

Then we talked to our doctor and he had some wonderful words of wisdom,

as a doctor and a father. He explained to us both that the way men and

woman face this kind of illness is different. He said in general Moms

are the soft and fuzzy comforter who looks out for kids emotions as well

as physical needs and the Dads are the ones who rough and tumble on the

floor, and have a different relationship with their kids. When our kids

get sick it is the Mom's job to take care of the child's needs, make

sure they are comfortable and emotionally and physically ok. We are the

" hands on " comforters. But the Dad's role is to take the secondary

approach of being sure the medical expenses are paid, and that things

are done that need to be done. They are the doers, the movers and

shakers and the fixers. He said Dads like to " fix " things and they see a

sick kid they want a quick fix and if they can just get them to act

normal their hope is they will feel better.

This really made sense to me and it made me understand a bit more of

where my husband was coming from. I realized that illness requires men

to take on a different role than they are used to doing. I tried to be

more patient with him, and explain to him more about this illness. I

explained that how our kids were feeling were out of their control, and

if we pushed them to do more than they could, they would pay the price.

I read alot and I would highlight or mark passages that explained the

issues that my husband did not understand. Over time, he became as much

of an advocate for our kids as I was. It took time though. My son was

ill from age 6-16 and never diagnosed with Lyme. My daughter was ill

from age 2 on, and we realized it was Lyme at age 14. She has been in

treatment for the past 6 years.

It is so hard as a Mom because so much of this illness falls our our

shoulders. We make the appts., prepare for them, handle the meds, do the

research, take care of our kids day to day needs, emotional and

physical, deal with family, schools, homework, everything. And it can

leave little room for their Dads to help out. We have so little energy

left over at the end of the day, that there may be little left over to

understand why their Dad doesn't get it. But in our family, I was able

to help him to understand what was going on, and we got him to support

us both instead of fight us. We were lucky, I realize and I hope that

you can be too. It is no wonder a lot of marriages do not survive

chronic illness.

hugs,

On 2/13/2011 9:44 PM, Diane Biel wrote:

>

> I need to be with parents that understand .... my husband just told my

> 12 yr daughter that's he is taking her to school in the morning,and

> she has to go....this poor girl has only been able to make it about

> five days this school year...I am so sick of living with someone who

> refuses to understand .... wish we could pack up and leave... ugggg.

> Sorry....bless you all!!

> Diane

>

>

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Thanks so much for sharing your experience.......I wish my husband would

have some interest in learning about what we are going though...I have three

girls that I have given this to and I am ill myself........are your kids doing

better with treatment?  I pray so.......

Bless you :)  Diane

________________________________

From: Faces <faces@...>

Sent: Tue, February 15, 2011 8:59:45 AM

Subject: Re: [ ] fathers

 

Dear Diane,

Fathers can be a challenge for us Moms when it comes to our ill

children. I had two children who were ill, at the time diagnosed with

CFS. My husband, like yours, just thought if he could make them get to

school, they could start turning around and get better. I was so

frustrated because it seemed that I would comfort them and all he wanted

to do was push them. I couldn't believe he could be so unsympathetic.

Then we talked to our doctor and he had some wonderful words of wisdom,

as a doctor and a father. He explained to us both that the way men and

woman face this kind of illness is different. He said in general Moms

are the soft and fuzzy comforter who looks out for kids emotions as well

as physical needs and the Dads are the ones who rough and tumble on the

floor, and have a different relationship with their kids. When our kids

get sick it is the Mom's job to take care of the child's needs, make

sure they are comfortable and emotionally and physically ok. We are the

" hands on " comforters. But the Dad's role is to take the secondary

approach of being sure the medical expenses are paid, and that things

are done that need to be done. They are the doers, the movers and

shakers and the fixers. He said Dads like to " fix " things and they see a

sick kid they want a quick fix and if they can just get them to act

normal their hope is they will feel better.

This really made sense to me and it made me understand a bit more of

where my husband was coming from. I realized that illness requires men

to take on a different role than they are used to doing. I tried to be

more patient with him, and explain to him more about this illness. I

explained that how our kids were feeling were out of their control, and

if we pushed them to do more than they could, they would pay the price.

I read alot and I would highlight or mark passages that explained the

issues that my husband did not understand. Over time, he became as much

of an advocate for our kids as I was. It took time though. My son was

ill from age 6-16 and never diagnosed with Lyme. My daughter was ill

from age 2 on, and we realized it was Lyme at age 14. She has been in

treatment for the past 6 years.

It is so hard as a Mom because so much of this illness falls our our

shoulders. We make the appts., prepare for them, handle the meds, do the

research, take care of our kids day to day needs, emotional and

physical, deal with family, schools, homework, everything. And it can

leave little room for their Dads to help out. We have so little energy

left over at the end of the day, that there may be little left over to

understand why their Dad doesn't get it. But in our family, I was able

to help him to understand what was going on, and we got him to support

us both instead of fight us. We were lucky, I realize and I hope that

you can be too. It is no wonder a lot of marriages do not survive

chronic illness.

hugs,

On 2/13/2011 9:44 PM, Diane Biel wrote:

>

> I need to be with parents that understand .... my husband just told my

> 12 yr daughter that's he is taking her to school in the morning,and

> she has to go....this poor girl has only been able to make it about

> five days this school year...I am so sick of living with someone who

> refuses to understand .... wish we could pack up and leave... ugggg.

> Sorry....bless you all!!

> Diane

>

>

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My husband has no interest either.. he never wants to hear anything..everythings

all in my head with and I get yelled and screamed at..

>

> I need to be with parents that understand .... my husband just told my

> 12 yr daughter that's he is taking her to school in the morning,and

> she has to go....this poor girl has only been able to make it about

> five days this school year...I am so sick of living with someone who

> refuses to understand .... wish we could pack up and leave... ugggg.

> Sorry....bless you all!!

> Diane

>

>

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I agree with you - many in the household go undiagnosed.......and how many kids

out there are undiagnosed pumped up with meds for all the symptoms......and all

the harsh words they must have to endure daily.

I have made my husband a few appointments to our llmd in the past......always an

excuse not to go - but did go once with the girls and I.....he tells me that he

doesn't have time to be sick like us...........he has many of the

symptoms......and the bart rage......but you cant force him into

anything.......my guess is that he also suffers from this but you can lead a

horse to water but you cant make them drink.......no one has a right to abuse

anyone....and then to abuse someone who cant just get up and leave is

horrid.......my girls and I hear all the time time that we are welcome to leave

at any time........just said to us last night that he is sick of living like

this....like its our choice to be sick and not be working or going to

school...........none of this is fair - to anyone.......if it would make him

happy I wish he would just walk away.....dont know how we would survive but when

is the point where enough is enough.......its like he only likes us if we are

" normal " or can do things.....his parents are the same way - I feel they look

down on us because we are ill....what a shame.....why cant people that love

eachother just understand.......its a lonely world but thank God I have you guys

:) 

I also have my mother and step-father and my father....God is good :)

thanks for all your thoughts.......its just one more of those things we have to

endure with this disease.........

Bless you - Diane

________________________________

From: Kaethe <batikquilt@...>

Sent: Tue, February 15, 2011 9:27:54 AM

Subject: Re:[ ] fathers

 

,

Thank you so much for your awesome letter. Your explanation was brilliant and

it will help so many to read that. Diane and Tiffanie, I am wondering....is it

possible your husbands have Lyme? It's stressful enough to have sick children

whether you are the mom or the dad. But if you are ill yourself, Diane as you

well must know, the stress could be unbearable. I wonder how many of the

members of our Lyme households out there are walking around undiagnosed.

The best to everyone out there who is ill, and may your healing go well,

Kaethe

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Very well said, .  My situation has been very similar.  The first year my

son went undiagnosed, my husband went through the tough-love, " he's going to

school today " , he needs a psychiatrist phase.  It was a rough year and he

learned to finally back-off and let me handle things my way.  " Mamma Bear " had

to take over.  Long story short, when we finally got a diagnosis, I did tons of

reading, showed him things that really pertained to our son, he watched the

movie and I kept him informed of many of the things said in our local support

group.  He has gradually come around but it is still hard for him to

understand.  He too wants a black and white situation w/ a quick fix.

Stay with it moms who are also facing this.  It doubles the pain and

difficulty

when you are fighting your husband as well as the medical society!  It is so

hard to go at it alone but take pride in the fact that YOU are fighting for your

child's life.  Hopefully when your husbands start seeing improvement in your

children (this also helped my husband), then dads will start accepting this. 

Take care, Elaine 

________________________________

From: Faces <faces@...>

Sent: Tue, February 15, 2011 6:59:45 AM

Subject: Re: [ ] fathers

 

Dear Diane,

Fathers can be a challenge for us Moms when it comes to our ill

children. I had two children who were ill, at the time diagnosed with

CFS. My husband, like yours, just thought if he could make them get to

school, they could start turning around and get better. I was so

frustrated because it seemed that I would comfort them and all he wanted

to do was push them. I couldn't believe he could be so unsympathetic.

Then we talked to our doctor and he had some wonderful words of wisdom,

as a doctor and a father. He explained to us both that the way men and

woman face this kind of illness is different. He said in general Moms

are the soft and fuzzy comforter who looks out for kids emotions as well

as physical needs and the Dads are the ones who rough and tumble on the

floor, and have a different relationship with their kids. When our kids

get sick it is the Mom's job to take care of the child's needs, make

sure they are comfortable and emotionally and physically ok. We are the

" hands on " comforters. But the Dad's role is to take the secondary

approach of being sure the medical expenses are paid, and that things

are done that need to be done. They are the doers, the movers and

shakers and the fixers. He said Dads like to " fix " things and they see a

sick kid they want a quick fix and if they can just get them to act

normal their hope is they will feel better.

This really made sense to me and it made me understand a bit more of

where my husband was coming from. I realized that illness requires men

to take on a different role than they are used to doing. I tried to be

more patient with him, and explain to him more about this illness. I

explained that how our kids were feeling were out of their control, and

if we pushed them to do more than they could, they would pay the price.

I read alot and I would highlight or mark passages that explained the

issues that my husband did not understand. Over time, he became as much

of an advocate for our kids as I was. It took time though. My son was

ill from age 6-16 and never diagnosed with Lyme. My daughter was ill

from age 2 on, and we realized it was Lyme at age 14. She has been in

treatment for the past 6 years.

It is so hard as a Mom because so much of this illness falls our our

shoulders. We make the appts., prepare for them, handle the meds, do the

research, take care of our kids day to day needs, emotional and

physical, deal with family, schools, homework, everything. And it can

leave little room for their Dads to help out. We have so little energy

left over at the end of the day, that there may be little left over to

understand why their Dad doesn't get it. But in our family, I was able

to help him to understand what was going on, and we got him to support

us both instead of fight us. We were lucky, I realize and I hope that

you can be too. It is no wonder a lot of marriages do not survive

chronic illness.

hugs,

On 2/13/2011 9:44 PM, Diane Biel wrote:

>

> I need to be with parents that understand .... my husband just told my

> 12 yr daughter that's he is taking her to school in the morning,and

> she has to go....this poor girl has only been able to make it about

> five days this school year...I am so sick of living with someone who

> refuses to understand .... wish we could pack up and leave... ugggg.

> Sorry....bless you all!!

> Diane

>

>

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