Re: spouses

[Guest guest]

vicki....ant does sound wonderful.....me and my wife are coming along way

with conselling......even the shrink says she is suprised that we have

survived so much adn are still in love.......we just have to get our shit

together......god this disesaes can rob u of so much ......every morning when

all the activity is going on i remember what i " use to do " in the morning i

use to be up and out befor e everything 7 days a week ....working my asss

off.....now somedqays its 10 before i get the energy to go a block and get

the newspqapers.....then read for 2 hours and take a nap.......i now force my

self to go to a store......or out to lunch just to get out of the same 4

walls i have seen for 4 years.......hell of a way to live.........but i will

survive my mental ad physical demons.......we all must......Reid

[Guest guest]

Sharon,

MEN!! I think you are right, Ant is afraid it might be positive. He told me

not to worry about it. Wouldn't that be nice! I know I'm lucky to have such

a supportive husband, now if only I could get him to dust and vacuum, or

something around the house like that!

I guess I shouldn't complain, since he is so wonderful in all other ways.

Vicki

[ ] spouses

>From: " melillo " <mellillo1@...>

>

>Dear Vicki,

>I think it is wonderful that Ant is so involveed and searching. His ideas

>sounded good but were a little beyond my reasoning right now.

>I think that our spouses don't want to be tested because they see what the

>disease is all about. I have been after for years to get tested. He

>did the WB last year and it was negative but he is also so tired. He says

>it is because of work pressure and the fact that he is almost 50. But I

>want him to do the LUAT and he won't. I think it is the ostrich in the

sand

>approach. He says, what would happen to the family if he got sick. So, if

>he doesn't know that he has lyme then it will be OK?! what convoluted

>thinking but can't make him do it. I just pray he doesn't have it.

>At least Ant is learning, like . It is wonderful and want to say

>hurrah to them both. Lucky ladies you are!

>Sharon

>

>>Send to -Offtopiconelist messages unrelated to lyme, please.

>/archive/lyme-aid

>/archives.cgi/Lyme-Documents

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>You may substitute " subscribe " , or " digest " or " normal " for

>the word " unsubscribe " ( " normal " is the opposite of " digest " ). Leave blank

both the message and subject header.

>

[Guest guest]

Reid,

I'm so happy to see you say you and your wife are still in love, that will

go a long way. But, although Ant is wonderful, he has his days and isn't so

wonderful, but I know it because he is stressed about me, and of course I

don't do much for him anymore, if you know what I mean. I told him most of

the time I feel like I live in a bubble, and when I look out side of it, I

see Life, and I know I'm not part of it. So I have to force myself out every

now and then to. Today my daughter needed help with her baby 'cause she had

a lawyer's appt. So I went with her and then lunch, and of course came home

and collapsed for a few hours. But it was nice to get out and do something

normal and spend time with family. Talk to you soon.

Vicki

Re: [ ] spouses

>From: RMcmur3194@...

>

>vicki....ant does sound wonderful.....me and my wife are coming along way

>with conselling......even the shrink says she is suprised that we have

>survived so much adn are still in love.......we just have to get our shit

>together......god this disesaes can rob u of so much ......every morning

when

>all the activity is going on i remember what i " use to do " in the morning

i

>use to be up and out befor e everything 7 days a week ....working my asss

>off.....now somedqays its 10 before i get the energy to go a block and get

>the newspqapers.....then read for 2 hours and take a nap.......i now force

my

>self to go to a store......or out to lunch just to get out of the same 4

>walls i have seen for 4 years.......hell of a way to live.........but i

will

>survive my mental ad physical demons.......we all must......Reid

>

[Guest guest]

Thanks for your advice. It worked! My wife started the program

today. We did a cardio session at the track. She really enjoyed

doing it together. She says the year 2001 is the year for

togetherness. She still has her doubts on how long she can hang with

it. I'm trying to be super supportive.

[Guest guest]

At 06:36 PM 03/14/2001 -0500, Kathy R. wrote:

>|Judging by the many posts about this to the list these past two years,

it is

>|very common for one spouse to take the reins regarding the child's

>|treatment, and the other to remain in denial for (sometimes a very long)

>|period of time. This is the situation in our home and in many others as

>|well.

My husband has been interesting, in that he totally embraces the possible

OCD diagnosis, but is still in denial about the eating disorder! The

anorexia was the first thing we noticed in (13), and just started

getting treatment for that this fall. Even during SEVEN WEEKS of

hospitalization, my husband still thinks is " not like most anorexics "

or " doesn't have a bad case. " When the OCD diagnosis was mentioned to us

during the hospitalization for anorexia, it was like a lightbulb went off

in both of our tiny-little-brains! Ah-ha! We really think that OCD is the

" umbrella issue " and that the anorexia is a direct result of the OCD.

Because of this, I'm a little worried about using up too many of our

" mental health benefits " (insurance) for the anorexia. I know her

treatment is important, and I'm sure it saved her life. But, she's doing

so well, that I don't want all our benefits used up on that, when we are

just starting the OCD therapy in April!

Jeanie

near Portland, Oregon

[Guest guest]

Ks Di.....

Great post ! It took many months before I could see outside of

myself to what my illness might be doing to my husband. This

illness sends shockwaves to all who know and love us. Once I spoke

clearly (and with raw emotion) about every aspect of what I was

feeling, he really got it. In return, I was able to see the fear

and sadness he was feeling. Just as we get bummed about the life

which was " taken " from us, our spouses wouldn't be human to not miss

the way things " were supposed to be " .

>

> My husband came from a long line of " if you ignore it, it isn't a

problem. "

> During the time I had cancer, I accused him of having an affair.

He was

> shocked. He was just so distant and I was having to adjust to

being totally

> helpless as well as not fulfilling any aspect of being a wife and

mother.

> Years later, I understand that in order to deal with my cancer, he

pretended

> I didn't have it. In turn, he just ignored the fact that I could

not

> function. I viewed it as totally not caring or taking care of me.

>

> He really isn't much different with PA. When I groan going up and

down the

> stairs, he asks what is wrong. We can repeat that conversation

three times

> per day, and he acts like it is new information each time. Yet,

he never

> complains and does anything for me when I ask. I have printed off

postings

> from this list and well as tried to educate him about the disease.

>

> It is because of his income that I could go part-time instead of

full-time.

> It is his income that allowed me my holistic treatment not covered

by

> insurance.

>

> He does not give any sympathy or try to take care of me, he still

lives in

> the world where I was independent and capable. Although it is not

an ideal

> situation, our love and commitment to our family leaves us with a

stable

> environment. I know I will never change him and our life together

is very

> good.

>

> Sometimes your depression might cloud your relationships. I am not

> advocating for anyone to stay in an abusive relationship, but if

your

> marriage was good before PA, perhaps your spouse is having as much

trouble

> dealing with the loss of your previous life as you are. Both of

you deserve

> some tender loving care.

>

> Ks Di

[Guest guest]

thanks mary,

point very well taken... it is hard to see the proverbial forest

for the trees sometimes and become self-asborbed.

karen

>

>

> Ks Di.....

> Great post ! It took many months before I could see outside of

> myself to what my illness might be doing to my husband. This

> illness sends shockwaves to all who know and love us. Once I

spoke

> clearly (and with raw emotion) about every aspect of what I was

> feeling, he really got it. In return, I was able to see the fear

> and sadness he was feeling. Just as we get bummed about the life

> which was " taken " from us, our spouses wouldn't be human to not

miss

> the way things " were supposed to be " .

>

>

>

[Guest guest]

Hi KS DI,

My husband is very supportive of me but at the same time says things

that are very hurtful " in a joking manner " . Not only to me but to my

kids. He has no clue they are hurtful usnless we point them out and

it ussually only happens if he is around other people.

I know my husband is mourning the loss of the old me. I know he is

stressed over finances becuase I had to leave my job. I know the

extra chores are sometimes very tiring for him. I know he cannot walk

in my shoes nor would I wish him too. I love him too much. So I try

to step into his shoes. At first I was jealous that he was making

friends at work, both male and female. I have asked him straight out

if he has someone else in his life. He has assured me over and over

that is not the case. In talking with him, I found he needs friends

to talk to about alot of things, work sports politics and to just be

himself. He told me he sees me as disintigrating right before his

eyes and there is nothing he can do to stop it. So I know he feels

helpless.

I try not to constantly talk about how i feel, but without even

speaking he said my eyes tell him everything. I think he needs to

escape from that every so often so he can be there with his heart and

soul. Everyone needs a mental health break to recoup and our loved

ones need it most.

Everyone deals with it differently. As the pain and deformities

increase the more reassurance we need that we are still loved and

needed. But I also know he needs to escape form my pain. He needs to

live and recoup his mental and physical health so that he stays

healthy and so does our relationship.

I hope some of this makes sense

Pat

>

> My husband came from a long line of " if you ignore it, it isn't a

problem. "

> During the time I had cancer, I accused him of having an affair.

He was

> shocked. He was just so distant and I was having to adjust to

being totally

> helpless as well as not fulfilling any aspect of being a wife and

mother.

> Years later, I understand that in order to deal with my cancer, he

pretended

> I didn't have it. In turn, he just ignored the fact that I could

not

> function. I viewed it as totally not caring or taking care of me.

>

> He really isn't much different with PA. When I groan going up and

down the

> stairs, he asks what is wrong. We can repeat that conversation

three times

> per day, and he acts like it is new information each time. Yet, he

never

> complains and does anything for me when I ask. I have printed off

postings

> from this list and well as tried to educate him about the disease.

>

> It is because of his income that I could go part-time instead of

full-time.

> It is his income that allowed me my holistic treatment not covered

by

> insurance.

>

> He does not give any sympathy or try to take care of me, he still

lives in

> the world where I was independent and capable. Although it is not

an ideal

> situation, our love and commitment to our family leaves us with a

stable

> environment. I know I will never change him and our life together

is very

> good.

>

> Sometimes your depression might cloud your relationships. I am not

> advocating for anyone to stay in an abusive relationship, but if

your

> marriage was good before PA, perhaps your spouse is having as much

trouble

> dealing with the loss of your previous life as you are. Both of

you deserve

> some tender loving care.

>

> Ks Di

[Guest guest]

hi everyone,

My boyfriend is very supportive and understanding of my condition.

Where ever he can step in with something he does, laundry, dishes,

taking the kids to school, etc he does it. I've done so much personal

care at my previous job that it has probably done damage to my body, so

he always herds the kids into the shower, or takes the trash out, or

even takes the dogs out for me. When I feel well I always step in and

give him a break as he works a 40 hour job and I don't right now. I

always enjoy it when his kids are around because they like to help me

out when ever they can, just doing little things too. The only thing

sometimes is that the kids tear the place up so much and I can't pick up

after them all the time. We do have someone that comes and cleans for

us b/c of my situation and he also has arthritis too in his knees. He

has always told me that he doesn't care he'll do what ever he has to do

or if he can't he'll get someone to help us, and that is why we got

someone to come in and clean etc. He says when you feel well enough you

go ahead and do what ever it is you can, and don't feel bad if you

can't. I told him that my doing the kids laundry was something I felt I

could still do and with minimal pain and discomfort. I'm greatful that

he lets me contribute when I can, and that he is there for me when I am

not able. We will be getting married but we just haven't set a date

yet.

Remember to look at your relationship as a team, and a uniform one at

that. Where one of you can't fill in, the other will step in,

respectively.

Hugs

Carla

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[Guest guest]

Hi Carla,

I almost didn't answer your message because i didn't want you to be

hurt by what i'm going to say, nor take it the wrong way. i know

your message had nothing but good intentions, and it is exactly how

it was received. it is somewhat naive, unfortunately, and it is for

this reason i changed my mind and decided to answer it after all.

first of all, may i please say, in all sincerity, how happy i am for

you that your partner is so supportive - that is wonderful news, and

for all of you that have this support, i couldn't be more pleased.

it is unfortunate, however, that we don't live in a perfect world.

sometimes, no matter how much one wants it to be so, it just is

not. carla, you mentioned that a couple needs to be a team.

absolutely, i could not agree with you more. but what if one of the

members of the team is not a team player? what if one member of the

team is so distressed by the illness of their mate, so stressed out

about it along with all the other stresses in life, that instead of

trying to help, instead of thinking about the other person, instead

they blame that person for not being 'who they married' - like that

person had any control over it... what if the non-team player drank

all the time to deal with the stress and was a nasty raging drunk,

called you a cripple, said you were lazy, was jealous because you no

longer worked and he still had to, criticized you constantly and

used guilt trips to make sure you still 'pulled your weight'?

this is unfortunately what i am living with. i am not writing this

for sympathy of any sort - i take responsibility for staying - i

have my reasons and am simply biding my time until i walk away. i

am just writing this because for some of us, this is, unfortunately,

our reality. the old adage, you can take a horse to water, but

can't make him drink comes to mind....

2 years before my dad passed away he had two serious operations - a

hip replacement and back surgery. my parents always had a wonderful

loving and working marriage but when dad got ill, they became even

more of a team. my parents were more in love in their twilight

years than in their youth. my mom couldn't do enough to help dad.

they would hold hands in bed each night before going to sleep. it

was simply beautiful to watch. the day before he died, i dropped in

a second time to see him in the hospital and mom had just left to

run an errand. dad was asleep and on his little table was a love

note my mom had written to him... (i actually added a p.s. to the

note as i didn't want to wake him - i'm very glad i did as this was

the last time i saw him alive... but i digress...)

the reason i am saying this is because this is how marriage should

be, how, thankfully, yours obviously is, and what i wish each and

every single one of us had as a support system. it is what everyone

on earth deserves. unfortunately this is not a perfect world, and

i'm not one of the lucky ones. i am very tough though and very much

a survivor. i'm ok. i'm writing this only as a means of

communication as this is a very safe place to be honest.

i hope, carla, that you take this message in the way it is

intended. i am so very very happy you have a loving man by your

side. (don't let him out of your sight!)

take care and God bless,

karen

>

> hi everyone,

>

> My boyfriend is very supportive and understanding of my condition.

> Where ever he can step in with something he does, laundry, dishes,

> taking the kids to school, etc he does it. I've done so much

personal

> care at my previous job that it has probably done damage to my

body, so

> he always herds the kids into the shower, or takes the trash out,

or

> even takes the dogs out for me. When I feel well I always step in

and

> give him a break as he works a 40 hour job and I don't right now.

I

> always enjoy it when his kids are around because they like to help

me

> out when ever they can, just doing little things too. The only

thing

> sometimes is that the kids tear the place up so much and I can't

pick up

> after them all the time. We do have someone that comes and cleans

for

> us b/c of my situation and he also has arthritis too in his

knees. He

> has always told me that he doesn't care he'll do what ever he has

to do

> or if he can't he'll get someone to help us, and that is why we got

> someone to come in and clean etc. He says when you feel well

enough you

> go ahead and do what ever it is you can, and don't feel bad if you

> can't. I told him that my doing the kids laundry was something I

felt I

> could still do and with minimal pain and discomfort. I'm greatful

that

> he lets me contribute when I can, and that he is there for me when

I am

> not able. We will be getting married but we just haven't set a

date

> yet.

>

> Remember to look at your relationship as a team, and a uniform one

at

> that. Where one of you can't fill in, the other will step in,

> respectively.

>

> Hugs

> Carla

>

>

> ---

> Outgoing mail is certified Virus Free.

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> Version: 6.0.799 / Virus Database: 543 - Release Date: 11/19/2004

>

>

>

>

[Guest guest]

Hi ,

I did not take any offense to your message. In fact, I understood every

bit of it that you wrote. You actually said more of what I wanted to

write about but couldn't compose the way I wanted. No the world is not

perfect, and their is not always a perfect marriage. My boyfriend went

through a horrible previous marraige of abuse and in many ways and

stayed for his kids until he just couldn't any longer. You have a good

reason of course, and when it's time you'll do what you need to do. I'm

so sorry you've had the problems you've had, being called cripple, and

having to deal with a drunk. Believe me, we have our moments too. My

boyfriend sometimes yells at me and I've actually yelled at him and when

I have forgotten to take my psych meds I've actually hit him. So their

is always another side to the positive marraige. I am sending prayers

your way that things will get better for you, for your pa and your

situation with your marraige. Again, I didn't take any offense to

anything you wrote.

Hugs

carla

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[Guest guest]

Maybe he should go to the doctor with you. I was diagnosed in December 2004,

and my hubby has been supportive. We've researched the illness together. You

can't catch a genetic disorder. I have no children, and my hubby is all I have

besides my mother and my brother. There is reason to go on, is for your son,

whether he is at colege or at home.

[ ] Spouses

Since my AIH diagnosis in Dec. '05 my husband hasn't wanted to have

much to do with me. Tonight I found out it's because he thinks I'm

contagious and he's afraid he'll catch hepatitis from me. I went from

thinking we were in this together to feeling like a disease. What he

said makes me feel dirty. I haven't stopped crying since.

My son is 14 and will be off to college after that which lives my

husband and me. Now I don't feel I have that relationship to lean on

anymore. It's hard right now to find a reason to go on. I've never

felt so alone in all my life. There's absolutely no one I can turn to

for support.

Has anyone else experienced issues like this with their spouses or

significant others?

[Guest guest]

I am sure your husband is going through a difficult time also. One of the

hardest things to understand is diseases. You need to seek out support groups

and attend meetings together, plus you need to get your doctor or his PA

[physicians assistant ( they all have them now)] take the time explaining what

all this means. You could also give him some literature to read, right off the

internet first and then from the Liver Disease Foundation.

AIH is not a communicable disease, he cannot catch it! But do not cry, it has

to be a temporary misunderstanding on his part. You must give him and yourself

time to understand this mess of Liver conditions that are bound to come with

AIH. There are many wise folks on this list and they will provide you with

appropriate web sites, etc. I just wanted you to know you are not alone no

matter what. Be Strong, you CAN do it!

Clara from OR.

http://pbcers.org/

This is a site for people with Primary Biliary Cirrhosis - and other Autoimmune

Liver Diseases

Another site is great at explaining in straight forward manner the AIH problem:

http://www.autoimmunehepatitis.co.uk/AIHquestions.htm#2

It States:

2. What is Auto-Immune Hepatitis exactly?

In a sense, it is a disease in which the body is " rejecting " its own liver. The

body's immune system is designed normally to fight infection. When we are

infected by, say, a virus, special white blood cells attack the infecting

organism and either eliminate it directly or produce proteins known as

antibodies that specifically recognise and help to destroy the organism. Quite

often, infections are accompanied by some (usually fairly minor) " accidental "

damage to healthy tissues, either by the white blood cells themselves or through

the production of antibodies (known as auto antibodies) against the bodies own

tissues. The same sort of thing can happen when tissues are damaged by chemical

substances (such as some types of drugs). In other words, we are all in a state

of " autoimmunity " , but in most people there is a mechanism which switches off

(or controls) autoimmune reactions by our immune systems against our own

tissues. In people with AIH, it seems that they are born with (or develop)

defects in this control system such that they cannot switch off an autoimmune

attack against their own livers. Similar defects seem to be present in people

with autoimmune diseases of other organs, such as autoimmune thyroid disease,

myasthenia gravis (which affects the nerves and muscles), rheumatoid arthritis

(affecting the joints), and some forms of diabetes.

Why are only some tissues affected, e.g. the liver in AIH, and not others? This

is because the control mechanism is extremely complex. It seems that it has

several components, some that have a general " dampening down " effect on the

immune system and others that control reactions separately against each of the

different tissues in the body. To develop an autoimmune disease affecting only

(or mainly) one organ, it is likely that the general control parts are not

working properly and that there are additional defects in one of the parts that

control reactions against each tissue separ

[ ] Spouses

Since my AIH diagnosis in Dec. '05 my husband hasn't wanted to have

much to do with me. Tonight I found out it's because he thinks I'm

contagious and he's afraid he'll catch hepatitis from me. I went from

thinking we were in this together to feeling like a disease. What he

said makes me feel dirty. I haven't stopped crying since.

My son is 14 and will be off to college after that which lives my

husband and me. Now I don't feel I have that relationship to lean on

anymore. It's hard right now to find a reason to go on. I've never

felt so alone in all my life. There's absolutely no one I can turn to

for support.

Has anyone else experienced issues like this with their spouses or

significant others?

[Guest guest]

Thanks for the words of encouragement. My husband has been to the

Dr.'s office with me several times. He heard the Dr. say I have AIH

and that it's not contagious. My husband suspects the Dr. may be

wrong and that it could be viral. Why I have no idea. I have

ankylosing spondylitis as well that I've had for years so I have a

history of autoimmune disorders. I was on Remicade for a few months

and had to get off it after 4 treatments because it made me feel so

bad. A couple of months after that is when my liver enzymes went

nuts. Personally, I think it was the remicade that did this, even

so, drug induced hepatitis isn't contagious either.

This is very depressing.

>

> Maybe he should go to the doctor with you. I was diagnosed in

December 2004, and my hubby has been supportive. We've researched

the illness together. You can't catch a genetic disorder. I have no

children, and my hubby is all I have besides my mother and my

brother. There is reason to go on, is for your son, whether he is at

colege or at home.

> [ ] Spouses

>

>

> Since my AIH diagnosis in Dec. '05 my husband hasn't wanted to

have

> much to do with me. Tonight I found out it's because he thinks

I'm

> contagious and he's afraid he'll catch hepatitis from me. I went

from

> thinking we were in this together to feeling like a disease.

What he

> said makes me feel dirty. I haven't stopped crying since.

>

> My son is 14 and will be off to college after that which lives my

> husband and me. Now I don't feel I have that relationship to

lean on

> anymore. It's hard right now to find a reason to go on. I've

never

> felt so alone in all my life. There's absolutely no one I can

turn to

> for support.

>

> Has anyone else experienced issues like this with their spouses

or

> significant others?

>

>

>

>

>

>

[Guest guest]

My grandmother had ankylosis spondylitis also. Auto Immune diseases are very

common in my family.

My husband has been very suportive but it did take awhile for his brain to

wrap around the concept. We always here about hepitits and automatically think

" contagious " it sometimes takes people time to really understand that this type

is a totally different kind.

I found it was easier for some people if I explained it was a type of Lupus.

At one time it was called Lupoidhepitits. For some reason people understand

and accept the fact it is non contagious when I explain it this way.

I hope this helps. All of us have at one time or another had this reaction to

AIH.

You definitly have a reason to go on and be strong. If he has a problem then

he should find someone to talk to.

Don't give up on him just give him time.

AIH

the WV hillbilly

[Guest guest]

I think everyone else in this world always think they have better

ideas on how to raise my child than I do, whether she is AS or not

lol. Like my parents for instance: " Why don't you smack her when she

cusses at you?! " Ahmmm, excuse me, but that didn't necessarily work

for my parents when they were raising their children.In any rate,

about your child's records. Consider it this way - You are trying to

enhance her strengths and aid her weaknesses. I think special needs

assistance to a child is conformity to society in a way. She may have

a very very hard time getting through high school and getting a

diploma without some side help working in her favor. As far as on her

record goes, I " d establish her special needs now, so they can be met

now and in the future grades, instead of waiting for some old-school

type of teacher to flunk her first. Did you know that in college,

they only provide a note taker or special equipment for a AS student?

If even that, depending on where she may go. Schooling prior to

college is to help prepare a student, academically. I don't know

about your AS child but, mine gets special help emotionally and

socially too. In fact, my child is so smart, at the start of 9th

grade at this school she tested out to 2-3yr college level in all

subjects, and is barely pulling C's and the occasional B now, with

her IEP enforced and alot of special need help. I honestly am not

concerned with her academically, its all about helping her socially

and emotionally in school setting, public, and transitional services

for when shes out of HS. And btw, she'll graduate highschool with a

full, normal diploma next year. Well these are my thoughts on the

matter, hope some of them made sense lol.

ps: they dont do IEPs in college, not around here at least. That is

why I get her all the help I can, now.

[Guest guest]

My ex husband could not handle being a full tiem dad to our spec kids but my

current husband has nothing but support for anything I suggest or ask to

implement.

( ) spouses

hi! so my nearly 2 year old has been given the diagnosis of pdd-nos, which

we suspect will become an as diagnosis in the next year or so. i am writing

today to see if anyone else meets with resistance from their spouse, parents

or inlaws for any treatment?

my daughter is very much like my husband, and in fact we believe he is

undiagnosed as. hes afraid my worj with her school and the social training

will try and 'change' our interesting, brilliant and unique little girl.

his parents think she will now be 'labeled' mrdd and wont have any

opportunity to foster what intelligence she has.

my husband has also gone as far to say that while its ok for her to now be

in early intervention classes and therapies, once she hits elemantary school

age he wants her completely mainstreamed and with none of 'this' on her

record. i try and point out that school was a nightmare for him (though hes

a scientist now) and ask wouldnt he want things to be easier for our

daughter? he just keep going back to the idea that i cant change her

without ruining her and i feel we are at an impasse with this.

any tips??

[Guest guest]

I have to admit I was alot like your spouse. I was very reluctant

for a diagnoses. And once we did I really didn't want him or others

to know. I didn't want anyone to think there was something " wrong "

with him. I felt like that was who he was and I've always thought

he was wonderful. Since he is getting a little older (almost 5) I

am seeing more qualities in him that are going to make it so hard

for him to fit in to society and I see how others, including family,

look at him. So now I want to do what I can to help. So maybe in

time your husband will feel the same,

-- In , " megan kerns "

<megan7876@...> wrote:

>

> hi! so my nearly 2 year old has been given the diagnosis of pdd-

nos, which

> we suspect will become an as diagnosis in the next year or so. i

am writing

> today to see if anyone else meets with resistance from their

spouse, parents

> or inlaws for any treatment?

>

> my daughter is very much like my husband, and in fact we believe

he is

> undiagnosed as. hes afraid my worj with her school and the social

training

> will try and 'change' our interesting, brilliant and unique little

girl.

> his parents think she will now be 'labeled' mrdd and wont have any

> opportunity to foster what intelligence she has.

>

> my husband has also gone as far to say that while its ok for her

to now be

> in early intervention classes and therapies, once she hits

elemantary school

> age he wants her completely mainstreamed and with none of 'this'

on her

> record. i try and point out that school was a nightmare for him

(though hes

> a scientist now) and ask wouldnt he want things to be easier for

our

> daughter? he just keep going back to the idea that i cant change

her

> without ruining her and i feel we are at an impasse with this.

>

> any tips??

>

[Guest guest]

One thing I can say about Men is that they do not ever want to think

that something could be " wrong " with their child. My husband debated

me at every turn when I told him I wanted to get Chauncey evaluated.

Another factor that came into play is African American curtural(sp)

issues. To admit that my Son had some challanges would make us bad

parents in some friends and family members eyes. Thankfully, I was

able to provide my husband with enough evidence to show him that

Chauncey was very high functioning and with the proper treatment, he

could possibly live the same lifestyle as our older sons.

It was the Newsweek article, earlier this month, that made my

husband's thinking turn the corner. He saw the issue first and called

me reciting the information in the mag. He then surprised me by saying

that he thinks that he is AS. He said that the information in the

article put the peicesof his 36 year old puzzle more closely together.

As a child, he had been diagnosed as dyslexic but he said he never

felt he fit by definition. I was so impressed that not only did he get

right on board with me to help Chunk but he started to approach his

personal challanges much differently.

Nichole

>

> My ex husband could not handle being a full tiem dad to our spec

kids but my current husband has nothing but support for anything I

suggest or ask to implement.

> ( ) spouses

>

>

> hi! so my nearly 2 year old has been given the diagnosis of

pdd-nos, which

> we suspect will become an as diagnosis in the next year or so. i

am writing

> today to see if anyone else meets with resistance from their

spouse, parents

> or inlaws for any treatment?

>

> my daughter is very much like my husband, and in fact we believe

he is

> undiagnosed as. hes afraid my worj with her school and the social

training

> will try and 'change' our interesting, brilliant and unique little

girl.

> his parents think she will now be 'labeled' mrdd and wont have any

> opportunity to foster what intelligence she has.

>

> my husband has also gone as far to say that while its ok for her

to now be

> in early intervention classes and therapies, once she hits

elemantary school

> age he wants her completely mainstreamed and with none of 'this'

on her

> record. i try and point out that school was a nightmare for him

(though hes

> a scientist now) and ask wouldnt he want things to be easier for our

> daughter? he just keep going back to the idea that i cant change her

> without ruining her and i feel we are at an impasse with this.

>

> any tips??

>

>

>

>

>

[Guest guest]

I know this is hard, but I would take your husband's advice

seriously. Don't worry about things, until a problem arises. If

she is in Kindergarten or 1st grade, and she encounters a problem,

then talk about it then. My husband is probably an aspie too. He

gives very sound advice. Aspies are special. Don't let this get

between you and your husband. Stay close. Things will work out.

(this is my first post)

I have an aspie daughter, 13 years old.

-- In , " megan kerns "

<megan7876@...> wrote:

>

> hi! so my nearly 2 year old has been given the diagnosis of pdd-

nos, which

> we suspect will become an as diagnosis in the next year or so. i

am writing

> today to see if anyone else meets with resistance from their

spouse, parents

> or inlaws for any treatment?

>

> my daughter is very much like my husband, and in fact we believe

he is

> undiagnosed as. hes afraid my worj with her school and the social

training

> will try and 'change' our interesting, brilliant and unique little

girl.

> his parents think she will now be 'labeled' mrdd and wont have any

> opportunity to foster what intelligence she has.

>

> my husband has also gone as far to say that while its ok for her

to now be

> in early intervention classes and therapies, once she hits

elemantary school

> age he wants her completely mainstreamed and with none of 'this'

on her

> record. i try and point out that school was a nightmare for him

(though hes

> a scientist now) and ask wouldnt he want things to be easier for

our

> daughter? he just keep going back to the idea that i cant change

her

> without ruining her and i feel we are at an impasse with this.

>

> any tips??

>

[Guest guest]

I'd recommend hauling him off to a family therapist to go over the

pros and cons of each approach. That's what we did when we found

ourselves in a similar situation. Dh eventually backed down, as he

realized that wouldn't be able to function well without t he

help. Just my two cents. Worth what you pay for it. :-)

Liz

On May 31, 2006, at 5:57 AM, megan kerns wrote:

> hi! so my nearly 2 year old has been given the diagnosis of pdd-

> nos, which

> we suspect will become an as diagnosis in the next year or so. i

> am writing

> today to see if anyone else meets with resistance from their

> spouse, parents

> or inlaws for any treatment?

>

> my daughter is very much like my husband, and in fact we believe he is

> undiagnosed as. hes afraid my worj with her school and the social

> training

> will try and 'change' our interesting, brilliant and unique little

> girl.

> his parents think she will now be 'labeled' mrdd and wont have any

> opportunity to foster what intelligence she has.

>

> my husband has also gone as far to say that while its ok for her to

> now be

> in early intervention classes and therapies, once she hits

> elemantary school

> age he wants her completely mainstreamed and with none of 'this' on

> her

> record. i try and point out that school was a nightmare for him

> (though hes

> a scientist now) and ask wouldnt he want things to be easier for our

> daughter? he just keep going back to the idea that i cant change her

> without ruining her and i feel we are at an impasse with this.

>

> any tips??

>

>

>

>

>

[Guest guest]

Great advice .. I agree..its hard...but I agree..

-- ( ) Re: spouses

I know this is hard, but I would take your husband's advice

seriously. Don't worry about things, until a problem arises. If

she is in Kindergarten or 1st grade, and she encounters a problem,

then talk about it then. My husband is probably an aspie too. He

gives very sound advice. Aspies are special. Don't let this get

between you and your husband. Stay close. Things will work out.

(this is my first post)

I have an aspie daughter, 13 years old.

-- In , " megan kerns "

<megan7876@...> wrote:

>

> hi! so my nearly 2 year old has been given the diagnosis of pdd-

nos, which

> we suspect will become an as diagnosis in the next year or so. i

am writing

> today to see if anyone else meets with resistance from their

spouse, parents

> or inlaws for any treatment?

>

> my daughter is very much like my husband, and in fact we believe

he is

> undiagnosed as. hes afraid my worj with her school and the social

training

> will try and 'change' our interesting, brilliant and unique little

girl.

> his parents think she will now be 'labeled' mrdd and wont have any

> opportunity to foster what intelligence she has.

>

> my husband has also gone as far to say that while its ok for her

to now be

> in early intervention classes and therapies, once she hits

elemantary school

> age he wants her completely mainstreamed and with none of 'this'

on her

> record. i try and point out that school was a nightmare for him

(though hes

> a scientist now) and ask wouldnt he want things to be easier for

our

> daughter? he just keep going back to the idea that i cant change

her

> without ruining her and i feel we are at an impasse with this.

>

> any tips??

>

[Guest guest]

thank you everyone for your thoughtful advice, i appreciate it immensely.

i will try and listen more carefully to my husband and give him more serious

consideration, i think youre absolutely right about that...however i feel

like i also can just sit and wait for something to go wrong before we

intervene. i really wish for my dd to be at a point when she starts 'real'

school that the transitions, social training, and work weve done thus far

wil help her to succeed.

i really dont want her to be a different child. after all, i fell madly in

love with my husband and hes just like her - but i want to be able to make

life, childhood anyway, easier for him and give her advantages that my

husband (who is undiagnosed as) did not have. he was in ld and then at one

time a teacher wanted to hold him back becausehe was emotionally 'immature'.

after some testing (not done until he was nearly 12) they realized he was

gifted, hyperlexic and adhd (and these days i think they wouldve said as)

and they did help him then, but elementary school was pure hell for him and

i dont want our daughter to go through that if i can help it.

that said i need to give him the benefit of the doubt and trust his choices

too. in many other areas of our marriage i tend to be the decision maker

with giving much thought to his feelings or plans. this is definitely

something i need to work on.

thanks again!

meg

>From: " julieannswift " <julieannswift@...>

>Reply-

>

>Subject: ( ) Re: spouses

>Date: Wed, 31 May 2006 18:04:50 -0000

>

>I know this is hard, but I would take your husband's advice

>seriously. Don't worry about things, until a problem arises. If

>she is in Kindergarten or 1st grade, and she encounters a problem,

>then talk about it then. My husband is probably an aspie too. He

>gives very sound advice. Aspies are special. Don't let this get

>between you and your husband. Stay close. Things will work out.

>

>

>(this is my first post)

>I have an aspie daughter, 13 years old.

>

>

>

>

>-- In , " megan kerns "

><megan7876@...> wrote:

> >

> > hi! so my nearly 2 year old has been given the diagnosis of pdd-

>nos, which

> > we suspect will become an as diagnosis in the next year or so. i

>am writing

> > today to see if anyone else meets with resistance from their

>spouse, parents

> > or inlaws for any treatment?

> >

> > my daughter is very much like my husband, and in fact we believe

>he is

> > undiagnosed as. hes afraid my worj with her school and the social

>training

> > will try and 'change' our interesting, brilliant and unique little

>girl.

> > his parents think she will now be 'labeled' mrdd and wont have any

> > opportunity to foster what intelligence she has.

> >

> > my husband has also gone as far to say that while its ok for her

>to now be

> > in early intervention classes and therapies, once she hits

>elemantary school

> > age he wants her completely mainstreamed and with none of 'this'

>on her

> > record. i try and point out that school was a nightmare for him

>(though hes

> > a scientist now) and ask wouldnt he want things to be easier for

>our

> > daughter? he just keep going back to the idea that i cant change

>her

> > without ruining her and i feel we are at an impasse with this.

> >

> > any tips??

> >

>

>

>

>

>

[Guest guest]

I wanted to say that I sit here typying after 61/2 years where I could have

gotten my son help a long time ago. I know this is devistating, but we love our

children and we will do what ever it takes to help them no matter who it is. I

wish you luck and I hope that your husband realizes that the earlier you help

the children the better chance they will be as adults. My son is bearly going

to recieve help and I wish I would have known when he was 2 years old. Do not

miss the opportunity to help your child become an independent adult.

Good luck,

Cristina

Liz Bohn <lbohn@...> wrote:

I'd recommend hauling him off to a family therapist to go over the

pros and cons of each approach. That's what we did when we found

ourselves in a similar situation. Dh eventually backed down, as he

realized that wouldn't be able to function well without t he

help. Just my two cents. Worth what you pay for it. :-)

Liz

On May 31, 2006, at 5:57 AM, megan kerns wrote:

> hi! so my nearly 2 year old has been given the diagnosis of pdd-

> nos, which

> we suspect will become an as diagnosis in the next year or so. i

> am writing

> today to see if anyone else meets with resistance from their

> spouse, parents

> or inlaws for any treatment?

>

> my daughter is very much like my husband, and in fact we believe he is

> undiagnosed as. hes afraid my worj with her school and the social

> training

> will try and 'change' our interesting, brilliant and unique little

> girl.

> his parents think she will now be 'labeled' mrdd and wont have any

> opportunity to foster what intelligence she has.

>

> my husband has also gone as far to say that while its ok for her to

> now be

> in early intervention classes and therapies, once she hits

> elemantary school

> age he wants her completely mainstreamed and with none of 'this' on

> her

> record. i try and point out that school was a nightmare for him

> (though hes

> a scientist now) and ask wouldnt he want things to be easier for our

> daughter? he just keep going back to the idea that i cant change her

> without ruining her and i feel we are at an impasse with this.

>

> any tips??

>

>

>

>

>

[Guest guest]

We had some of those issues, in different form (my aspie son is 7 now) --

milder, more passive resistance than outright resistance. As a result we didn't

do some ABA intervention that we should have/could have done, and I wish we'd

done. I think if we had we might have been able to send our son to kindergarten

without support -- he was clsoe to that.

I would get the book Let Me Hear Your Voice, by Maurice. It's so

extremely convincing that it is possible to change the way the brain works if

you start early enough.

That said, I also think there are many ways to help a child, and I've

personally seen at least two families handle the denial approach beautifully.

My 2 cents.

pchristie06 <pchristie06@...> wrote:

I have to admit I was alot like your spouse. I was very reluctant

for a diagnoses. And once we did I really didn't want him or others

to know. I didn't want anyone to think there was something " wrong "

with him. I felt like that was who he was and I've always thought

he was wonderful. Since he is getting a little older (almost 5) I

am seeing more qualities in him that are going to make it so hard

for him to fit in to society and I see how others, including family,

look at him. So now I want to do what I can to help. So maybe in

time your husband will feel the same,

-- In , " megan kerns "

<megan7876@...> wrote:

>

> hi! so my nearly 2 year old has been given the diagnosis of pdd-

nos, which

> we suspect will become an as diagnosis in the next year or so. i

am writing

> today to see if anyone else meets with resistance from their

spouse, parents

> or inlaws for any treatment?

>

> my daughter is very much like my husband, and in fact we believe

he is

> undiagnosed as. hes afraid my worj with her school and the social

training

> will try and 'change' our interesting, brilliant and unique little

girl.

> his parents think she will now be 'labeled' mrdd and wont have any

> opportunity to foster what intelligence she has.

>

> my husband has also gone as far to say that while its ok for her

to now be

> in early intervention classes and therapies, once she hits

elemantary school

> age he wants her completely mainstreamed and with none of 'this'

on her

> record. i try and point out that school was a nightmare for him

(though hes

> a scientist now) and ask wouldnt he want things to be easier for

our

> daughter? he just keep going back to the idea that i cant change

her

> without ruining her and i feel we are at an impasse with this.

>

> any tips??

>