families

[Guest guest]

Over the years I've learned many many things. One is that everyone moves

along the journey of life at a different rate. Another is that some things

will generally fall more to the mothers of kids than the fathers. (there's

an article on news the other day talking about this..dad's were

spending more time on the weekends if the mother worked outside the home).

Yet another is to remember that while data from the " general population "

fits most of America, we're a little different--but the attitudes or

general trend do still apply.

When I started this list, when I went to KKI with Andy, and throught most

of Andy's life including today, I've felt like I don't have the support of

my husband. The truth is, if I step back from it, I *do* have his support

and even his respect, but he has yet to reach a point where he can express

it the way I would like. I " m not saying he's wonderful. I " m not saying *I*

am wonderful. I think Rex has ample reason to be very frustrated with me at

times. However, those times would be fewer if only....but " if only " is only

a dream.

Face it: child-rearing responsibility across our country falls more to the

mothers than the fathers. Mothers tend to grasp the depth of what a

disability means to a child faster than fathers--mostly because we're

exposed more. Those fathers who are stay at home dads or who take on this

responsibility " get it. "

In the last few years I've seen Rex, my husband, grow in ways I thought I'd

never see. And it's not because of anything *I* did. You can't force your

spouse to jump on the train the when and how you want. Like you, they need

to do it in their own way. But Rex's journey has been enlightened by a

young woman's family who set up a deli in the sherriff's dept cafeteria. He

sees a grown woman who may be similar to Andy--certainly she shows

similarity to Andy today. And he's starting to ask some hard

questions----quesitons I asked YEARS ago. In addition, for the *first*

time, one of *his* coworkers has asked him for help dealing with a new dx

of autism in their four-year-old. All of a sudden he has someone to compare

notes with; to share his stories; to ally fears for; to offer help and

assistance. It's all new to him, but it has helped him understand better.

Does any of that mean he's up to designing curricular adaptations, going to

IEP meetings, talking with the doctors about meds, understanding all the

nuances that are " Andy, " or even stepping in when I'm about to die? No. But

he's better. AND, he's a good Dad, even when I " m at my wit's end.

I've also learned that I have a responsibility to calmly and rationally

explain what I need. I've shared with him what my triggers are; when I'm

falling into a deep depressive time; when I'm overwhelmed by the decisions.

It doesn't make him jump to the front-lines or even take a day off to stay

home with a sick boy (after I've been with him for two weeks). That still

takes complete destruction of my life. But the less I rant and the more I

try to communicate concisely and unemotionally what I need, the more help

he is to me when it doesn't interfere with his own work.

It's hard to feel the burden of being the " point man " for this stuff. It's

hard to feel like you are all alone. But if you are feeling that way, first

and foremost, try to find some way to renew your own spirit. Sometimes that

means fighting for 30 mintues to take a walk with some great music or a

good friend each day. Sometimes that means reading a book. Sometimes that

means joining a club. But ASK your family to help you with this. Everyone

needs to renew their own spirit to be a good care giver.

It also helps to consciously remember to make a note of the times when

those around you DO help; so that when you're wallowing in frustration and

despair (I do this!!) you can still logically see where improvements have

been made--by your spouse and your kids! Journalling can help with this.

But it is also important to remember that those we are frustrated with,

those spouses we wish would do so much more, are people too. They have

feelings, they have emotions--heavens they KNOW something is wrong, they

just don't understand it as well as you do. They may *never.* But they can

improve.

It is perfectlly fine to vent here. I would, however, remind ya'll that

this is a public forum. That nothing stops yoru spouses from signing up

and reading the archives **without your ever knowing**. Not that they do.

But they can. And so can your other kids. What will they think?

I may be this nasty mother/moderator to you guys. you seem to enjoy that

image of me--not that I do, particularly.. I just know that if my 14 year

old son signs on to this list to see what other people are saying *I* don't

want to worry about it. Or if my mother signs on one day--which she may

well do--that I've acted honorably. That's not to say that I can't rant and

rave about the inequities of life, for heaven's sake. But I can do it in a

way that shows my frustration, isolation and hurt without being disrespectful.

For the gentlemen on the list, I'm sorry if you've thought this is a

women-only forum or a free-for-all. Share with us to add a little perspective.

yours,

joan

someone's " DW. "