Re: How men and women feel while battling autism...

February 3, 2008

One more question.

If you could get one thing from your spouse that you are not getting while on

this journey,

what would that be?

- Stan

>

> I am trying to learn more about how men and women deal with autism differently

and

how

> we can help keep families together through this journey. I have some idea,

but I'm only

> one guy.

>

> Please email me the answers to the following questions, if you feel inspired,

> to autismbook1@... or you can respond back to the group. Either is fine.

>

> I may publish your comments in a book or article, but the names will be

changed to

> respect privacy.

>

> Feel free to answer one, some or all of the questions below.

>

> If you are a mom:

>

> 1. What things did you do successfully to get your man involved in the

treatments of

> autism?

>

> 2. What did you try that didn't work?

>

> 3. What disappointed you the most about your spouse?

>

> 4. What were/are you most grateful for about your spouse?

>

> 5. What would you most want men to know about this journey as far as how it

affects

the

> the woman?

>

> 6. How does sex factor into your relationship through this journey?

>

> 7. What has been the hardest part of all for you?

>

> 8. During the journey, what has been your biggest fear... the scariest thing

that you

would

> have liked to have had more help in dealing with... the fear that you couldn't

verbalize

to

> your spouse.

>

> Feel free to tell me a story that explains your answer.

>

> If you are a Dad:

>

> 1. What helped you to get involved in helping your child?

>

> 2. What was the hardest part of this journey for you?

>

> 3. What would you suggest to mom's to get their spouses more involved?

>

> 4. What would you want women to know about men and how they deal with all

this?

>

> 5. What is your exact role in your child's recovery and why did you choose

that role?

>

> 6. How does sex factor into your relationship through this journey?

>

> 7. During the journey, what has been your biggest fear... the scariest thing

that you

would

> have liked to have had more help in dealing with... the fear that you couldn't

verbalize

to

> your spouse.

>

February 3, 2008

Answers within:

>

> If you are a mom:

>

> 1. What things did you do successfully to get your man involved in

> the treatments of

> autism?

>

My husband has always been very supportive of what I do with my son.

The one thing he always said was, " It can't hurt, so do whatever you

think you want to try. " The worst thing you could do is nothing and

he knew that even if it didn't work, at least we did something and

tried.

>

> 2. What did you try that didn't work?

>

I still can't get my husband to *pay attention*!!!! I tell him

all the time what Gryffin is on, when he gets it, how it's working,

what foods he can have, etc. and he *never* remembers! Even though

I have his full emotional support, I don't have his full attention.

Whenever I ask him to give him his meds, he always asks " which ones? "

and they are clearly in separated in a pill dispenser. Our entire

protocol rests upon my shoulders because he wants the Cliff's Notes

version of explanations and he doesn't even want explanations for

everything. If I don't do the research, it doesn't happen. You

don't know how many times he's come up to me and told me about

something he heard from someone else and I have to explain to him

that we've been there, done that! I love my husband and his

support of biomedical but if something were to happen to me tomorrow,

he'd have a lot of researching and catching up to do!

>

> 3. What disappointed you the most about your spouse?

>

His lack of cooperation with diet restrictions. He just won't accept

not having dairy in the house. He won't give it to the kids, but he

won't stop it himself. I wish that he would agree to the whole

family being on the same diet. I know all the other foods taste

better but if he would just go into it with an open mind, he may find

that some of the other foods are just as good or at the very least,

acceptable. We both love to cook and like to fancy ourselves as

wannabe chef's so I understand how difficult it is to let go of the

things you love and learn how to eat and cook differently -

especially when it's healthy but it needs to be done.

>

> 4. What were/are you most grateful for about your spouse?

>

His support for my obsessions of all things autism, research, online

groups and treatments.

>

> 5. What would you most want men to know about this journey as far

> as how it affects the

> the woman?

>

I think most men think that we are somehow thinking that we are more

affected by it than them when the truth is, we all feel the same

feelings, we just handle it differently. I don't, for one second,

believe that my husband didn't feel the same feelings when

discovering the dx or that he doesn't feel the same drive to recover

our son. I don't believe that he doesn't have the same feelings of

outrage, fear, anxiety, stress, and most importantly, hope, that I

feel. Our children, asd or not, have a great tendency to make us

feel like failures as parents at times and like the greatest parents

ever at times. I *don't* believe that men aren't affected by it as

much as the women and I think men need to know that we don't all

think it's only the mom's that are struggling and fighting. We just

do it differently.

> 6. How does sex factor into your relationship through this journey?

>

Sex? What sex? With 2 kids, we live on the quickie when we can

manage to get a moment. But it's hard at first, I think, to get back

into that swing of sex. We had sex rarely for the first year because

the focus was just on our son and I won't deny that it was mostly my

fault. But in my defense, sex was just the last thing on my mind, I

was dealing with autism and all that it entails and I had a newborn.

My husband was very understanding, though. He never said anything or

pressed the issue too much. Now that we have direction and my

newborn is older, I can think about my and my husband's needs more.

Too bad time is still a factor! Especially when you have a family

bed and have to somehow manage to sneak *out* of bed without waking

anyone up or catch some time while one is in school and the other is

taking a nap! Add to that the fact that my husband is gone half the

year traveling, we only get slightly more of it than we did that

first year!

>

> 7. What has been the hardest part of all for you?

>

Truthfully, finances. When we got our dx, we were living in a travel

trailer in our driveway while 2/3's of our house was being torn down

and rebuilt. It would have been easier if we had had a *clue* that

it would be autism and not just a speech delay as we simply wouldn't

have started that but since we didn't, we couldn't very well stop

while our house was just bare studs and you could see from the front

of the yard to the back yard with zero obstructions. You could also

see the sky very clearly and pick out shapes in the clouds. No roof,

no walls, no electric, no water, no nothing but bare wood and a

concrete slab so there was no stopping. We had to keep going and we

are still trying to recover from the financial mess of autism and

remodeling our house (which, still isn't finished, by the way).

>

> 8. During the journey, what has been your biggest fear... the

> scariest thing that you would

> have liked to have had more help in dealing with... the fear that

> you couldn't verbalize to

> your spouse.

>

My biggest fear was that my son would never talk, never have a normal

life, never live on his own, never have a girlfriend, get married or

have kids, etc. Who would take care of him when we weren't around?

Of course, those fears have all been pretty much alleviated (but I do

still worry sometimes about him making true friends and having a

good, fun teenage life full of girls and friends - and good

grades!). I finally did talk about this one night with my husband

and we both, of course, had the same fears and had just simply been

afraid to verbalize them simply because you just don't want it to

come true and saying it out loud somehow means you don't have faith

that it will all come in time. We both spent many nights lying awake

in bed too terrified to be able to fall asleep. It was good to talk

about it but we never talked about it again. It's too hard and

draining. Since we don't really have those feelings anymore, it's

still hard to think about ever feeling that way in the first place.

Cheryl

>

February 3, 2008

Thanks for getting the ball rolling cheryl. Thank you.

Stan

>

> >

> > If you are a mom:

> >

> > 1. What things did you do successfully to get your man involved in

> > the treatments of

> > autism?

> >

>

> My husband has always been very supportive of what I do with my son.

> The one thing he always said was, " It can't hurt, so do whatever you

> think you want to try. " The worst thing you could do is nothing and

> he knew that even if it didn't work, at least we did something and

> tried.

>

> >

> > 2. What did you try that didn't work?

> >

>

> I still can't get my husband to *pay attention*!!!! I tell him

> all the time what Gryffin is on, when he gets it, how it's working,

> what foods he can have, etc. and he *never* remembers! Even though

> I have his full emotional support, I don't have his full attention.

> Whenever I ask him to give him his meds, he always asks " which ones? "

> and they are clearly in separated in a pill dispenser. Our entire

> protocol rests upon my shoulders because he wants the Cliff's Notes

> version of explanations and he doesn't even want explanations for

> everything. If I don't do the research, it doesn't happen. You

> don't know how many times he's come up to me and told me about

> something he heard from someone else and I have to explain to him

> that we've been there, done that! I love my husband and his

> support of biomedical but if something were to happen to me tomorrow,

> he'd have a lot of researching and catching up to do!

>

> >

> > 3. What disappointed you the most about your spouse?

> >

>

> His lack of cooperation with diet restrictions. He just won't accept

> not having dairy in the house. He won't give it to the kids, but he

> won't stop it himself. I wish that he would agree to the whole

> family being on the same diet. I know all the other foods taste

> better but if he would just go into it with an open mind, he may find

> that some of the other foods are just as good or at the very least,

> acceptable. We both love to cook and like to fancy ourselves as

> wannabe chef's so I understand how difficult it is to let go of the

> things you love and learn how to eat and cook differently -

> especially when it's healthy but it needs to be done.

>

> >

> > 4. What were/are you most grateful for about your spouse?

> >

>

> His support for my obsessions of all things autism, research, online

> groups and treatments.

>

> >

> > 5. What would you most want men to know about this journey as far

> > as how it affects the

> > the woman?

> >

> I think most men think that we are somehow thinking that we are more

> affected by it than them when the truth is, we all feel the same

> feelings, we just handle it differently. I don't, for one second,

> believe that my husband didn't feel the same feelings when

> discovering the dx or that he doesn't feel the same drive to recover

> our son. I don't believe that he doesn't have the same feelings of

> outrage, fear, anxiety, stress, and most importantly, hope, that I

> feel. Our children, asd or not, have a great tendency to make us

> feel like failures as parents at times and like the greatest parents

> ever at times. I *don't* believe that men aren't affected by it as

> much as the women and I think men need to know that we don't all

> think it's only the mom's that are struggling and fighting. We just

> do it differently.

>

> > 6. How does sex factor into your relationship through this journey?

> >

>

> Sex? What sex? With 2 kids, we live on the quickie when we can

> manage to get a moment. But it's hard at first, I think, to get back

> into that swing of sex. We had sex rarely for the first year because

> the focus was just on our son and I won't deny that it was mostly my

> fault. But in my defense, sex was just the last thing on my mind, I

> was dealing with autism and all that it entails and I had a newborn.

> My husband was very understanding, though. He never said anything or

> pressed the issue too much. Now that we have direction and my

> newborn is older, I can think about my and my husband's needs more.

> Too bad time is still a factor! Especially when you have a family

> bed and have to somehow manage to sneak *out* of bed without waking

> anyone up or catch some time while one is in school and the other is

> taking a nap! Add to that the fact that my husband is gone half the

> year traveling, we only get slightly more of it than we did that

> first year!

>

> >

> > 7. What has been the hardest part of all for you?

> >

>

> Truthfully, finances. When we got our dx, we were living in a travel

> trailer in our driveway while 2/3's of our house was being torn down

> and rebuilt. It would have been easier if we had had a *clue* that

> it would be autism and not just a speech delay as we simply wouldn't

> have started that but since we didn't, we couldn't very well stop

> while our house was just bare studs and you could see from the front

> of the yard to the back yard with zero obstructions. You could also

> see the sky very clearly and pick out shapes in the clouds. No roof,

> no walls, no electric, no water, no nothing but bare wood and a

> concrete slab so there was no stopping. We had to keep going and we

> are still trying to recover from the financial mess of autism and

> remodeling our house (which, still isn't finished, by the way).

>

> >

> > 8. During the journey, what has been your biggest fear... the

> > scariest thing that you would

> > have liked to have had more help in dealing with... the fear that

> > you couldn't verbalize to

> > your spouse.

> >

>

> My biggest fear was that my son would never talk, never have a normal

> life, never live on his own, never have a girlfriend, get married or

> have kids, etc. Who would take care of him when we weren't around?

> Of course, those fears have all been pretty much alleviated (but I do

> still worry sometimes about him making true friends and having a

> good, fun teenage life full of girls and friends - and good

> grades!). I finally did talk about this one night with my husband

> and we both, of course, had the same fears and had just simply been

> afraid to verbalize them simply because you just don't want it to

> come true and saying it out loud somehow means you don't have faith

> that it will all come in time. We both spent many nights lying awake

> in bed too terrified to be able to fall asleep. It was good to talk

> about it but we never talked about it again. It's too hard and

> draining. Since we don't really have those feelings anymore, it's

> still hard to think about ever feeling that way in the first place.

>

> Cheryl

>

> >

>

February 3, 2008

,

How could we make the journey more visual for visual thinkers?

> >

> > > One more question.

> > >

> > > If you could get one thing from your spouse that you are not

> > > getting while on this journey,

> > > what would that be?

> > >

> > > - Stan

> >

>

February 3, 2008

Give me an example....

> >

> > > One more question.

> > >

> > > If you could get one thing from your spouse that you are not

> > > getting while on this journey,

> > > what would that be?

> > >

> > > - Stan

> >

>

February 3, 2008

A couple of thoughts:

Do you think it's hard for men to feel vulnerable to the fact that you may know

more than

they do? That you are the leader. Does that emasculate them I wonder?

Do you feel your husband may be affected as well and should be treated? (many

of us

probably should be)

>

> > One more question.

> >

> > If you could get one thing from your spouse that you are not

> > getting while on this journey,

> > what would that be?

> >

> > - Stan

> >

>

February 3, 2008

Cheryl and Stan, our situation here is exactly the same, with dh supportive but clueless, knows what I tell him but would not research for himself etc etc... I worry if something happens to me he would not know what to do ... actually just the other day we sat down and I made the list of most important long-term supplements and also who to contact for advice (yahoo lists etc) and the nearest DAN doctor - we are not patients at the moment but dh could not do much on his own...in reply to your question Stan:> Do you think it's hard for men to feel vulnerable to the fact that you may know more than > they do? That you are the leader. Does that emasculate them I wonder?I don't feel that way, not in our situation. dh is too busy and stressed with work and only too happy to offload. also, biomed and other asd treatments fall into 'childcare' category I feel, so should not feel emasculating for most men, fwiw. maybe I'm wrong...> Do you feel your husband may be affected as well and should be treated? (many of us > probably should be)no, but his poor liver should be protected ) so I get him to take milk thistle and things like that. also CLO for overall health...Natasa> > > > > > > > One more question.> > >> > > If you could get one thing from your spouse that you are not > > > getting while on this journey,> > > what would that be?> > >> > > - Stan> > >> >>

February 3, 2008

>

> If you are a mom:

>

> 1. What things did you do successfully to get your man involved in

the treatments of

> autism?

I showed him the recovery videos online. I read things to him from

the internet about studies and treatments. He is an attorney and

works with a lot of doctors that are at the top of their field.

Sometimes, this is an advantage, since he knows how little they know

about medicine. However, sometimes, it's a disadvantage, because he

also wants to see things that are accepted by mainstream medicine.

When you have a big organization making statements against the lack

of evidence that Autism can be linked to vaccines, it makes things

hard to accept. But, as I've mentioned, reading him research from

prestigious universities has been a huge asset.

>

> 2. What did you try that didn't work?

He doesn't want to read the actual books! He wants summaries, but he

prefers I do all the legwork. I have to admit that he works very

long hours and so I do have more time. I just wish that he could

make the time, since he definitely believes there's nothing more

important than recovering our son.

>

> 3. What disappointed you the most about your spouse?

He doesn't like to commiserate! I sometimes want to be able to

discuss my feelings about all this and once in a while, we do it, but

for the most part, he wants to stay focused on the road ahead...which

is probably the right thing to do.

>

> 4. What were/are you most grateful for about your spouse?

He's very supportive of the biomedical approach. He wasn't at first,

but now, he's on board. He's still apprehensive about Chelation, but

we're still early in the game and don't know if it will even happen.

I'm also very grateful that he has made biomedical treatments a

financial priority. We will cut back on whatever necessary if it

means that we can spend that money on helping our son.

>

> 5. What would you most want men to know about this journey as far

as how it affects the

> the woman?

I feel like I'm the one who has to think about everything, when it

comes to treatment. I have to make sure he's getting the right

vitamins, I give him the spray, I give him the epsom salt baths. So

far, it's not as much work as it's going to be, once we get all our

test results back. I just feel like it's all on my shoulders.

>

> 6. How does sex factor into your relationship through this

journey?

Luckily, sex has not been a problem throughout. If we're having a

bad day, or regression (as we did when we were giving im too much

mb12, then obviously, nobody is in the mood. But, I think that's

typical of any marriage.

>

> 7. What has been the hardest part of all for you?

The hardest part is accepting this diagnosis. I still can't believe

it and I worry SO MUCH about the future. I worry that my son has

nobody to play with at lunch at school and then, I worry about how he

will be in the real world...when he's an adult! I try not to think

about it too much, but it does keep me up on many, many nights. I

have developed severe migraines from all the stress too.

>

> 8. During the journey, what has been your biggest fear... the

scariest thing that you would

> have liked to have had more help in dealing with... the fear that

you couldn't verbalize to

> your spouse.

I have shared all my fears with him, but he doesn't like for me to

dwell on it for too long and I can't say that I blame him for it!

>

February 5, 2008

Kim

I worry about the same thing...what if something were to happen to me?

I have a biomed notebook that I think someone could follow. My

husband at least knows what supplements we give, but he'd have no idea

where to order them. Maybe he'd be smart enough to get on my e-mail

and ask all of you what to do

We just started SCD and we almost fought over whether or not he should

learn how to make 's " pancakes " . I was so frustrated. I got sick

about two weeks ago and couldn't help but think...who's going to do

this if I get any worse. I really need to write everything down.

with lots of directions. for my friend to follow...I know my husband

couldn't/wouldn't/probably shouldn't. My mom would be able to do it,

but she lives 6 hours away. It's kind of scary. I wish there were a

little more interest on my hubby's part for sure. It would give me

some peace of mind.

Kari

> > >

> > > > One more question.

> > > >

> > > > If you could get one thing from your spouse

> > that you are not

> > > > getting while on this journey,

> > > > what would that be?

> > > >

> > > > - Stan

> > > >

> > >

> >

>

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February 5, 2008