Re: Re: Feeling Selfish and Sorry for Myself........

[Guest guest]

I'm not horrified at your honesty.....you echo exactly what's on my mind half

the time. My doctor even agrees that I'm under too much stress. I wish I had a

life of my own. AND DH doesn't help.....just get a sitter and we'll go

out....yea right!

Loriann

[Guest guest]

In a message dated 6/8/100 7:34:17 AM EST, Midvale@... writes:

<< I am tired of pretending he's normal and trying to include him in normal

acitivites like birthday parties, picnics and other outings....and I'm tired

of other people trying to include him as though he were normal too......I

know they're being nice, but all of this is getting old...fast.....

Thanks for letting me vent.....I hope some of you won't be horrified at my

blatant honesty.....just tired, that's all......

>>

Hi ,

I'm not horrified at all. I'm glad someone said it. This is how it is for us

too. I got beyond tired. I became so isolated and out of touch that I didn't

know which way was up and I have been out of work for stress and a lot of the

stress came from this exact thing. I hope today things are better for you.

Thanks for being here.

Judy

[Guest guest]

,

I can empathize with a lot of your feelings. The things is that I never

pretend that Brook is normal. Brook is 10 years old and functions like a 1

1/2 year old. So we just don't try to do so many things that I know would be

really difficult. For instance on Saturday the neighborhood is having a

barbecue for us since we moved here recently and I have a sitter for

Brook.There is no way we could talk to anyone and get to meet the new

neighbors if we were chasing him down and practically sitting on him to keep

him under control. I guess one of the keys to this is having reliable

respite which I do.

I get together with friends when Brook is in school or when I have

respite scheduled. Another outing some of my friends like is going to a

movie in the evening when DH is home watching the kids. I hope things settle

down for you.

Marisa

[Guest guest]

,

Were you talking by any chance about Martha of the Down Syndrome

Connection. I just called her the other day about the problems I am having

with the new program for Brook. Hopefully tomorrow we can go see the SDC at

the elementary school. The program specialist says we can look for

comparison but that he still can't go there.

Yesterday I realized that we had received no diapers this month. Turns

out that both Regional Centers involved think the other one is responsible.

Great!

I finally got hold of several special recreation programs in my area. It

turns out that they don't have to provide diapering or feeding according to

the ADA. This was news to me and this is a special program for kids with

developmental disabilities. For the last 2 years Brook had an aide who did

that for him so that he could go to summer day camp and not go crazy in the

summer. So now we are supposed to get our own aide to go with him to day

camp. I really don't think that that is going to happen. I was able to

compromise with one of the programs and I think he will just go for 3 hours

in the AM. That way he won't need a diaper and they won't have to feed him

but he will get an outing. It really doesn't seem fair to me that if you are

more severely disabled that your needs don't have to be met.

Marisa

Mom to Miles, Brook and Gennie

[Guest guest]

Just on the side - Burke is very verbal. He functions with CONTINUAL

support and supervision from his father. He cannot handle money, memorizes his

lines one line at a time because his reading is about 1-2 grade level. Not to

discount what the Burke's have done - don't be thinking that is so high

functioning. When he is not on the road, he operates an elevator in a child

care center.

He functions well because of a supportive network and a huge family with support

for him. Also mucho money for his education.

Sara

>>> Scherb@... - 06/08/0 12:30 PM >>>

,

I understand how you feel, I think we have all been there at one time.

As far as Burke goes--he is very high functioning. I have 5 kids with

DS here. They are from very high to very low functioning. Even with just

DS is it differcult to keep and maintain friendships. I have done open

heart surgery 7 times-no one understands how we do this. And that is just

the beginning of it.

We moved to a new community when we had just Sam and Tim. I found myself

returning to visit my friends in the old town to keep up our support base.

Then we moved to Oroville, 3 hours from our support. We have been here 5

years. I have no friends in the neighborhood. Am sure you can understand

that I don't have the time to go to the neighbors for coffee. They just

know that 5 retarded kids live up the street. And they are concerned how it

effects the resale value of their homes.

Church--the one we attended for the first 2 years-made it clear that the

kids could not move up in Sunday School. JJ could not leave the

nursery--and what was wrong with him anyway? Needless to say we left and

have not found a new one.

Our friends are people from the special ed department and adoptive familles

with other special kids. But even these are busy with their families. We

do have a support group in this area. It helps to be able to talk

sometimes. And I still have my DS support person 150 miles away. Martha is

the biggest help to us.

We know it is always somethng and it is hard when so many people that should

be there for us aren't--perhaps family would help but they all think we are

nuts and live on the east coast. Thank goodness Garry and I are best

friends.

& Garry, parents of (9 ds), (8 ds/g-tube), JJ (6

ds/autism/celiac), (5 ds), and Esther (3 ds). All adopted.

------------------------------------------------------------------------

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1/4112/10/_/691668/_/960478354/

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[Guest guest]

,

I understand how you feel, I think we have all been there at one time.

As far as Burke goes--he is very high functioning. I have 5 kids with

DS here. They are from very high to very low functioning. Even with just

DS is it differcult to keep and maintain friendships. I have done open

heart surgery 7 times-no one understands how we do this. And that is just

the beginning of it.

We moved to a new community when we had just Sam and Tim. I found myself

returning to visit my friends in the old town to keep up our support base.

Then we moved to Oroville, 3 hours from our support. We have been here 5

years. I have no friends in the neighborhood. Am sure you can understand

that I don't have the time to go to the neighbors for coffee. They just

know that 5 retarded kids live up the street. And they are concerned how it

effects the resale value of their homes.

Church--the one we attended for the first 2 years-made it clear that the

kids could not move up in Sunday School. JJ could not leave the

nursery--and what was wrong with him anyway? Needless to say we left and

have not found a new one.

Our friends are people from the special ed department and adoptive familles

with other special kids. But even these are busy with their families. We

do have a support group in this area. It helps to be able to talk

sometimes. And I still have my DS support person 150 miles away. Martha is

the biggest help to us.

We know it is always somethng and it is hard when so many people that should

be there for us aren't--perhaps family would help but they all think we are

nuts and live on the east coast. Thank goodness Garry and I are best

friends.

& Garry, parents of (9 ds), (8 ds/g-tube), JJ (6

ds/autism/celiac), (5 ds), and Esther (3 ds). All adopted.

[Guest guest]

,

I understand completely. I'm very blessed to have a large extended family

that we can do things with and everyone is very helpful and understanding of

Reuben. As far as friends go, no way. We don't have any friends that come

over. Sometimes we go out with THEM, but it is so hard finding a sitter. I

think people are uncomfortable around Reuben, because they don't know how to

act around him. And then if he decides to come out of his room naked or has a

bad case of diarreah-------!! Family understands. Friends just don't want to

be around it. So go ahead and vent. I think you're just saying what all of us

has thought at one time or another. You are not alone. ita

[Guest guest]

>

>>,

>> Were you talking by any chance about Martha of the Down Syndrome

>>Connection.

Marisa,

Yes, same person. We have known her for about 8 or 9 years. She called

us when Esther was born and her parents wanted to place her for adoption.

She knew we were looking for a girl ever since h died just before JJ

was placed with us. She has held our hand for years. Tell her hello for

me. She know of several other families that have kids with ds/autism(one in

Concord and one in Castro Valley).

& Garry, parents of (9 ds), (8 ds/g-tube), JJ (6

ds/autism/celiac), (5 ds), and Esther (3 ds). All adopted.

[Guest guest]

laura i know exactly how you feel!!!! as im sure many here do, have you

looked into respite and supportive community living, nathan has had them both

since about 3yrs old and this helps tremendously, trained people watch your

child, and they get mat training for the behavior part and you dont have to

pay them the state does. we have the max allowed for nathan in iowa 576 hours

respite a year and 52 hours of SCL per month, it doesnt matter your income,

just the availability of hours some counties have caps on them so they may be

a waiting list but the wait is worth it, his respite gives us a babysitter

when needed who is trained to handle nathan and also a bonus it pays for his

summer camp at camp sunnyside (offered by Easter Seals, many states have) he

loves camp and we do enjoy the week break!! and the SCL does community things

with him like swimming boyscouts, t-ball, or other sports, um the drop in

center( a hangout for any disabled to play pool foose ball computer videos

cards etc, they do many outings, movies etc, and they all love having nathan

around he is the foose ball king,lol, anyways ive gone on entirely too long,

sorry hope this helps shawna.

[Guest guest]

our agency works 24 hours a day, but always having dependable help is another

thing, they call in a lot sometimes, and the company knows we will drop if

dont do something soon. have to really work them sometimes but mostly they

are a good company. shawna.

[Guest guest]

In a message dated 6/8/00 8:31:51 AM Eastern Daylight Time, Ltb3105@...

writes:

<<

I am tired of pretending he's normal and trying to include him in normal

acitivites like birthday parties, picnics and other outings....and I'm tired

of other people trying to include him as though he were normal too......I

know they're being nice, but all of this is getting old...fast.....

Thanks for letting me vent.....I hope some of you won't be horrified at my

blatant honesty.....just tired, that's all......

>>

,

Heck......you can always vent!!!! And you're not selfish!! I think that's

normal to have these feelings. Life is overwhelming often when you are

raising kids like ours---HEY, if we don't vent, our kids are the ones to pay

for it!!!! So vent away!!!

We have always entertained a TON and I ADORE cooking; it's my therapy!!

We've certainly had to curtail how MUCH we entertain, but we still do it (I

have a need for it). We're extremely lucky in that we have older kids who

help out a great deal, and we also have space here, so Maddie can have her

own area to feel safe and away from the *strangers*. My kids stay with her

while we entertain, or we put her to bed and entertain then...........this

happens only during good sleeping weeks!!!! Sometimes she can come and

deal with the different faces, but more often than not, she can't. Anyway,

maybe you can get someone to watch while you entertain at home? Our

lives are so crazy right now because of the WIDE age span of our kids (19

down to 6), so DH and I try to go out during the week to have some QT because

our kids like to go out on weekends. Friday nights are our date nights. I

cook a gormet dinner for us, complete with candles. Some nights, DH has

Alison (7) on his lap and I have Maddie on mine while the older three are out

(can't do the candles then since Maddie would try to eat them).......but the

mood is set and it helps to make us feel like REAL people!!!! Yes, it takes

work, but as I said, I LOVE to cook and DH does clean up!! It's funny, but

I'm careful to plan things so that they don't interfere with our *date night*

because we both look forward to it!!!

Of course, I know that not everybody likes to cook, but I think it's very

important to find whatever outlet will work!!!! A walk alone, a bath,

reading time set aside.....whatever.....so long as it's a ritual so you have

something to look forward to!!! I LOVE Fridays and look forward all week to

them!! I get my books out and my Bon Appetit and other magazines in the

morning and I plan away!! It really truly helps me deal with everything

else!!!!! (tonight, we're having grilled swordfish with mango salsa). Good

luck !!!!! And always vent to us----we know what it's all about!!!!!

Donna

[Guest guest]

he can read, i though on a special i saw that he said he wish he could read

that was the only thing he never got in school. i work with nathan every

night and he is 8yrs now, he remembers some words, i hope he learns to read,

i love reading soooo much and want him to have that joy too, if he can read

at a 6 grade level after he graduates, he can attend college but i am hoping

for is that he at least learns to read. i am really pushing reading and

consumer math at school he isnt apart of science or social studies yet, but

does do art, pe, and computer, he is even learning to type because he cant

write with a pencil, but can type his name out on the computer and loves

computers, he is a wiz on them, he use to always get g rounded from them

because he would move the files around and change the names the theachers

couldnt find anything and he couldnt tell them what was what. boys, go

figure, shawna.