Re: spouses, friends, our lives

August 28, 2005

's email jogged my brain about something that my husband and I

have struggled with, both in our marriage and with our friends.

In our family, we have come to have pretty traditional roles. It

didn't start out that way, I worked full-time until the kids were 2

and 3, and 's weight just wasn't gaining, and my mom died, long

story. So now I am home fulltime with the munchkins, and challenging

my brain through the volunteer work with MAGIC.

But as such, the medical care of our children has pretty much fallen

on my shoulders. Research, decisions, etc., doctor's appts, etc. He

wants to know the info, but to be honest, I rarely even tell him

everything. We have struggled with him not realizing how time

consuming caring for this child is (and my child is older now). Not

realizing that a genetics checkup takes all day, which means that

laundry didn't get done that day. etc. Never mind, dealing with how

many specialists, the schools, keeping up to date on the medical

records, etc. So it is hard enough to balance all this within a

marriage.

But the friends. Most of my friends simply have no idea the extra

work caring for an RSS child consumes. They will go to lunch or play

tennis, and I'm busy at the computer or a doctor's office. Their kid

is up all night throwing up, and they just don't truly understand why

I am concerned that my daughter's close friend has the stomach

flu.... I have gotten support through all of you - can't imagine life

without all of you; and a couple local moms of autistic boys, who have

much harder lives than me, and remind me of that.

This being said, through counseling, I have also realized how shut-out

of the all this my husband feels -- not that he has the time to handle

it. But I hadn't realized that he feels left out.

A couple dads at this last convention voiced the same thing -- seems

that more often than not, moms often do the medical stuff. (hey,

dads -- not saying ALL moms -- just often). So these dads asked if we

would consider doing a dad's only moderated discussion group at next

year's convention. A place where they could talk.

What do you all think? Should we offer a mom's discussion group

too? I am not even sure we could fit this in to the schedule, but

wanted to get a gauge. Would dad's even go to a dad's only group?

Jenn

> - wow - thank you. You are absolutely a gem - what great

> information on how to organize the binder. I must have missed that

> at the convention - and here, I thought it was all my idea..LOL

> LOL...thank you so much - and I really like the idea of the two

> prong folder - I've seen those - much better.

>

> Thank you so much. And my husband thinks he's busy at work! He has

> no idea does he. <GRIN>.

>

> Take Care - H

>

August 28, 2005

JENNIFER! Count us both in for both of those groups. Boy, you

couldn't have said it better! You have stated the exact situation

at this household. My husband would benefit very much in partaking

in a " father's " break-out session. We already decided he missed

alot this year not going with us and I think he needs to get a grasp

on the info AND the emotions involved. He truly doesn't get the

amount of work and upkeep is involved in maintaining his son's

healthcare. And, really - I think we are better off in this family

that I handle it all <grin> - but, it certainly can be

overwhelming. Seriously though, I think because I handle everything

and he doesn't truly understand everything - he may feel left out as

well. I don't always have the time to explain everything to him

either.

By the way - he's napping on the couch right now LOL. I'm here on

the listserve, rummaging through boxes in the office for phone

numbers for the fundraiser, cleaning the kitchen, getting dinner

started.....yep yep yep...LOL

Thank you again ! I'm volunteering as moderator if you need

one.

- H

> > - wow - thank you. You are absolutely a gem - what

great

> > information on how to organize the binder. I must have missed

that

> > at the convention - and here, I thought it was all my idea..LOL

> > LOL...thank you so much - and I really like the idea of the two

> > prong folder - I've seen those - much better.

> >

> > Thank you so much. And my husband thinks he's busy at work! He

has

> > no idea does he. <GRIN>.

> >

> > Take Care - H

> >

August 28, 2005

My husband is a really tough guy (and I mean when I say he has used

up about 7 of his 9 lives) but as far as Emerence goes he wants me

to handle everything because of the language and because he trusts

me...but also not admitted is that he is afraid he can't handle it.

With the recent blood sugar issue, he was practically crying because

he held her while I pricked....I thought he was going to lose it.

However, now that I started the support group in S panish I fully

expect him to learn more

> > - wow - thank you. You are absolutely a gem - what

great

> > information on how to organize the binder. I must have missed

that

> > at the convention - and here, I thought it was all my idea..LOL

> > LOL...thank you so much - and I really like the idea of the two

> > prong folder - I've seen those - much better.

> >

> > Thank you so much. And my husband thinks he's busy at work! He

has

> > no idea does he. <GRIN>.

> >

> > Take Care - H

> >

August 28, 2005

I should also add that when I did the WALK last year people kept

saying, well she is only going to be SHORT...AGH if they only knew

how much of my day is spent thinking about this and calories etc...

, mom to , 5 and Emerence 2.5 22 " 32.5 "

> > - wow - thank you. You are absolutely a gem - what

great

> > information on how to organize the binder. I must have missed

that

> > at the convention - and here, I thought it was all my idea..LOL

> > LOL...thank you so much - and I really like the idea of the two

> > prong folder - I've seen those - much better.

> >

> > Thank you so much. And my husband thinks he's busy at work! He

has

> > no idea does he. <GRIN>.

> >

> > Take Care - H

> >

August 28, 2005

I know exactly what you are saying. Everyone around me seems to

think that taking care of is as easy as taking care of

a " normal " child. They seem to forget about all the times I am up at

night venting, adding more milk, changing his pump volume, not to

mention all the doctors appointments and all the trips made to

Children's Hospital that is 45 minutes one way, and all the time to

wait for the appointments, and when your child is sick you have to

worry about them being sick, plus blood sugar and ketones......UGH!

Oh yeah, and surgeries that just totally drain you mentally because

you are worried sick about lung issues and having an IV placed for

the millionth time. And what else....the list seems endless. And

also, I am with my kids constantly. My husband works two jobs, and I

rarely get away, only to go grocery shopping! Whoopee! ) Oh

yeah, and all the medicines needing to be given and breathing

treatments, and working with him on feeding therapy. Chew on this,

and chew on that......!

Ugh, maybe I need a break! Hee, hee. Naw, your post just hit home

with me. People think it is so easy and no big deal. Granted, there

are people that deal with much more, but we don't have a light load

either.

Jodi R.

> > > - wow - thank you. You are absolutely a gem - what

> great

> > > information on how to organize the binder. I must have missed

> that

> > > at the convention - and here, I thought it was all my idea..LOL

> > > LOL...thank you so much - and I really like the idea of the two

> > > prong folder - I've seen those - much better.

> > >

> > > Thank you so much. And my husband thinks he's busy at work!

He

> has

> > > no idea does he. <GRIN>.

> > >

> > > Take Care - H

> > >

August 28, 2005

I know, working full time doesn't help either. Something had to

give I supposes that is why my house looks like a tornado hit it

frequently. Thankfully our PT came before work 2x a week and the OT

every other week for lunch at daycare for feeding issues. I work

close to home but really need a new job just to alleviate stress at

least in one area of my life. However, I have beenn looking for

abuot 6 months and I do not want to go to Bostn so my option are

very limited for this area (I'm 12 minutes from home and daycare is

1 min from home). Emerence has 1 dr. appt per week for the next

three weeks. I was so relieved to get a new manager about a month

ago but he quit after we got our bonuses (2 wks ago). He was so vry

easy about not haiving to take my vacation time to take Emerence to

the dr (which I had to do for my most recent manager). My manager

before him asked to have me back (he currently doesn't manage

anyone) and the vp (who is the big reason for me leaving - she does

not like me and I'll never get anywhere) refused. He also was GREAT

when I was pregnant with Emerence and had all those issues. So now

I do not have a manager and doen't know who I will go to next seeing

as how they laid off over 60% ofthe company a couple months ago

there are only about 40 of us left...oh, did I mention that I have

been tring to get into health care mgmt and since I have

no " experience " LOL I haven't had much luck so I'm thinking of taken

5 classes online to get my MBA in health care mgmt (Since I got my

MBA in Global Mgmt from U PHoenix ONline there is a chance I only

have to tkae the 5 classes to get my 2nd MBA). But this would be

another thing to add...it used to take me about 3 hrs a night to do

papers, projects coursewk etc. I am going to be one tired puppy.

, mom to 5 and Emerence 2.5

> > > > - wow - thank you. You are absolutely a gem - what

> > great

> > > > information on how to organize the binder. I must have

missed

> > that

> > > > at the convention - and here, I thought it was all my

idea..LOL

> > > > LOL...thank you so much - and I really like the idea of the

two

> > > > prong folder - I've seen those - much better.

> > > >

> > > > Thank you so much. And my husband thinks he's busy at

work!

> He

> > has

> > > > no idea does he. <GRIN>.

> > > >

> > > > Take Care - H

> > > >

August 28, 2005

Hi all,

Thank you for up this topic, yes it is very hard to get everyone to understand

that it isn't easy caring for our children. I'm dealing with it double time my

son is also PDD-NOS along with RSS. Andre's dad isn't really in his life I try

to make sure he spends some time with him. HE never comes to any of Andre's

doctors appt. I live in Baltimore and he lives in Washington, DC needless to say

I'm the one making all the commutes back and forth not only for their visits but

for Andre doctors appts.as well. I kept him at Children's Hospital in Wash. DC

because he's been seen there since birth. All of his specialist are there and

not to mention I'm not impressed with Baltimore health care system. To make all

this even worst I'm separated from my husband right now. We have been back and

forth about whether or not we are getting a divorce. Which is more stress than I

need right now. The public school system in Baltimore City sucks!! With all of

Andre's appt. its hard trying find a job also

being a single parent its hard with child care and finding some where that

will take Andre with all his special needs. Not to mention his dad isn't''t

paying enough child support for that to happen. I'm sorry I guess I just needed

to vent. Anyway everyone just pray for us. Thanks for bringing up this topic

so I could vent.

mom to Andre 6.5 RSS and PDD-NOS

Jodi wrote: