The toll on families - not just husbands

[Guest guest]

I do not think that there is enough support or research or advice

for those of us who deal with chronically involved/ill children.

Thank God for this listserve! So many of us have husbands who live

in denial, or resent the attention that our special needs kids must

have, or are just angry that their child is " different. " It's a

very lonely feeling for us moms who must prevail (one of Max's new

words!!!) and coordinate medical care, educational needs, support

others around us, listen to family members and strangers and friends

who may disagree with the course we have taken....

It has taken my husband 14 years to finally come around and be truly

able to face Max's issues. The past two years have been so much

easier as a result. He takes Max to dr. appts., picks him up from

school if he is sick, stays with him in the hospital for hours

instead of minutes.... He even helped with the gathering and wants

to go to the convention in July! That is a HUGE step for him.

The other consideration is the siblings. That is going to be my

next issue. PLEASE be aware of the toll this takes on siblings, no

matter how well you think that they are doing. We are going through

hell with our daughter now and much of it stems from what we have

been through with Max. Of course, there are other issues there, but

the main one is Max. We so badly need our other children to be

whole, that we tend to miss the signs. (Read my message to Danita.)

So...I hear you, Tonya, , and others. It's lonely,

frustrating, anger-producing and depressing. But on this listserve

we have each other and we will help each other get through the tough

times. We may not be able to hug each other physically, but there

is always that cyber-hug. And my arms are reaching out to you all.

Jodi Z

[Guest guest]

> I do not know when Dr.'s -Silver diagnosed

> our and our family members membership to RSS but

> some older RSS did not have the social and emotional

> support like many new patients have, but I am glad

> that they do have this resource now.

Laurie-

I think that hold true for just about EVERYTHING nowadays. Just as

medicine has come so far that RSS kids CAN be given treatment to

help them grow to be larger than you and me, mental health is

something that is given much more consideration nowadays. The need

for social and emotional support just wasn't as well-understood 20

or 30 or 40 years ago as it is now and that's probably why you see

more and more older people going into therapy to " work out " those

problems that weren't nipped in the bud when they were younger.

Younger people in today's world can fix those smaller and medium-

sized problems before they become lifelong bigger problems.

-Sharon-

[Guest guest]

Amy,

Thanks for agreeing with me and congrats on baby number 3!!! Oh, I

wish we had had a third child. But right now two is all I can

handle anyway!

Jodi Z

[Guest guest]

Hi All,

Just to add my two cents and throw a question out there...

I am having a " problem " with Becca " mommmying " . She insists

that she is his big sister (they are TWINS)! I know that we

contribute to this a little big (asking her to help him get his

jacket off when we come in the house if I have a lot of packages),

but this concerns me. just doesn't understand anything about

RSS (he really does live in his own little world) but Becca

understands it all. As they are only 4 1/2 and both in a special

pre-school with all sorts of therapy (plus Becca gets play therapy

which is with a shrink) I don't know that there is anything for me

to do at this time.

Do any of you " multiple " parents have this type situation?

Judith, Steve, (RSS) and (non RSS) 4 1/2 year old

twins seeing Dr H on Wednesday

[Guest guest]

Hi Judith,

My twins are 25 months old so, you probably have more experience

than I do but, Delaney(Non-RSS) has been tackling her brother,

trying to put him " nite-nite " and dress him and feed him. Needless

to say Braeden(RSS)is not impressed by his sisters attention. I'm

hoping that Braeden will eventually stand his ground. I just try to

let them work it out and try not to intervene unless Delaney is

being to aggressive. So, we are in the same situation! I don't have

an answer but, I totally hear where you are comming from!

Saundra Mom to Delaney (Non-rss) and Braeden (RSS) 25 month twins

>

> Hi All,

>

> Just to add my two cents and throw a question out there...

>

> I am having a " problem " with Becca " mommmying " . She insists

> that she is his big sister (they are TWINS)! I know that we

> contribute to this a little big (asking her to help him get his

> jacket off when we come in the house if I have a lot of packages),

> but this concerns me. just doesn't understand anything

about

> RSS (he really does live in his own little world) but Becca

> understands it all. As they are only 4 1/2 and both in a special

> pre-school with all sorts of therapy (plus Becca gets play therapy

> which is with a shrink) I don't know that there is anything for me

> to do at this time.

>

> Do any of you " multiple " parents have this type situation?

>

> Judith, Steve, (RSS) and (non RSS) 4 1/2 year old

> twins seeing Dr H on Wednesday

[Guest guest]

JJudith - I am in a similar situation, although the two youngest are less

than 1 month apart - Jake has RSS and will be 3 on 11/16 (foster child)

and Ria is nonRSS and will be 3 on 12/11 - Ria tends to mother Jake ie.

encourage him to eat, help him reach items, put/take off his coat - I

tell Jake that he is a big boy and he can do it himself. I try to thank

Ria for being helpful, but at the same time remind her that he has to do

things for himself, just as she does for herself. They even argue over

who gets to hold the vent tube. I think the biggest part is encouraging

both of them to do for themselves.

Aileen - Jake RSS 3 on 11/16 and four others nonRSS

On Mon, 08 Nov 2004 13:45:11 -0000 " Sidny27 " writes:

Hi All,

Just to add my two cents and throw a question out there...

I am having a " problem " with Becca " mommmying " . She insists

that she is his big sister (they are TWINS)! I know that we

contribute to this a little big (asking her to help him get his

jacket off when we come in the house if I have a lot of packages),

but this concerns me. just doesn't understand anything about

RSS (he really does live in his own little world) but Becca

understands it all. As they are only 4 1/2 and both in a special

pre-school with all sorts of therapy (plus Becca gets play therapy

which is with a shrink) I don't know that there is anything for me

to do at this time.

Do any of you " multiple " parents have this type situation?

Judith, Steve, (RSS) and (non RSS) 4 1/2 year old

twins seeing Dr H on Wednesday