Re: What do you look for in a support group?

May 27, 2009

I think it's a GREAT! idea. Ideally, I would like a younger siblings support &

teen. The younger kids, say the 5-10, really aren't able to participate much in

sibshops as it's for older kids. Sibshops might be something to research.

For all of them I think activity-based time would be great. Maybe a movie night,

bowling night, etc. Something where parents could participate or drop off. Or

sitters for the disabled child so the parent could join the child. Siblings may

have limited opportunities to get out in the community, so activities for them

might be a well-needed and deserved night.

You might be able to get local businesses to support you in providing free/low

cost opportunities. Or get a local disabilities group to provide funding or

their name for the tax break of providing the opportunities.

Just a few quick thoughts,

Debi

May 27, 2009

if it isof going to be for siblings of then it is of good if the kids are of

ayounger group or age if the group has a parent be of involved in some of the

activities, because often the kids are of seekign any , any sort of positive or

negative attention from one or both of their parents because the speical needs

sibling often consumes all the time and attention due to many factors of need

and care.... so make sure to get of a sitter or respite for the special needs

siblings and take the NT kids out for fun dates.

so it can be of like for if the one event is of a girls dance lesons or movie or

things girls like... or a make over... things can be of donated often by various

stores for causes as this. and or if it is of a time where dads can go with the

sons and all the dads or male figures take of the sons to play basketball or

such things as this.

It is of good to have of art therpay sorts of things where the kids can draw of

thier own pictures and share with the group over targeted emotions such as the

one thing that makes them frustrated with their sibling, or the one things they

learned from them , or the most embarrasing day .... sorts of themes. this

allows them to feel safe to share their feelings with like peers who can

understand and not judge or maked to feel of bad for having normal emotional

feelings over thier siblings. this project can be of a long term one where ech

week or month they work on a new topic for the journaling sort of art book on

feelings for about 15 minutes and then go to a fun project.

sondra

May 27, 2009

Debi too funny as I to just posted of my thinking and then read ofyou post which

was of much the same thinking I to had ... we do have much same thinking at

times.

sondra

May 27, 2009

It would be a good idea to run this idea by someone in your Service Unit or

Council before pursuing it too far. Girl Scouts always place a very high

priority on the physical and emotional safety of children present at any

Girl Scout sanctioned activity.

From that perspective, it is quite possible that If they would sanction

this Project at all, it might only be if a mental health professional was

involved in the 'emotions nights'.

From Tiffanie's age, I'm guessing that she has a good year of prep work to

do before she has to decide on the details of her Project. She has to

earn several IPs and do her leadership work first, etc. That will give the

two of you plenty of time to look for support groups and local help.

The outings you've described sound like a lot of fun. Good luck to

Tiffanie in pursuing her Silver Award! It's nice she's getting started so

early,

that's very smart and dedicated!

Sandi - Who is very excited to have just been elected to serve as ASUM in

her Service Unit(!)

Mom of Allie-13 [(PDDNOS, ADHD, OCD) - who is also in the throws of

" Silver Award Project " drama! :-)]

In a message dated 5/27/2009 8:51:03 P.M. Central Daylight Time,

temans@... writes:

Thanks Sondra! I love the idea of having targeted emotions nights.

Ideally at least one parent would be involved with them there as well,

mainly because I don't want to assume responsibility for a bunch of

children

that I don't even know.

We have a local Easter Seals program that does some respite help for

families and they have nights where they have a drop off and give the

respite care then. When I spoke with the assistant director of the program

she thought it was a great idea and wanted to see what they could do to

help

as well. But we need to have a more clear idea of what we want before we

can

really approach them officially to help.

>

> if it isof going to be for siblings of then it is of good if the kids are

> of ayounger group or age if the group has a parent be of involved in

some of

> the activities, because often the kids are of seekign any , any sort of

> positive or negative attention from one or both of their parents because

the

> speical needs sibling often consumes all the time and attention due to

many

> factors of need and care.... so make sure to get of a sitter or respite

for

> the special needs siblings and take the NT kids out for fun dates.

>

> so it can be of like for if the one event is of a girls dance lesons or

> movie or things girls like... or a make over... things can be of donated

> often by various stores for causes as this. and or if it is of a time

where

> dads can go with the sons and all the dads or male figures take of the

sons

> to play basketball or such things as this.

>

> It is of good to have of art therpay sorts of things where the kids can

> draw of thier own pictures and share with the group over targeted

emotions

> such as the one thing that makes them frustrated with their sibling, or

the

> one things they learned from them , or the most embarrasing day ....

sorts

> of themes. this allows them to feel safe to share their feelings with

like

> peers who can understand and not judge or maked to feel of bad for having

> normal emotional feelings over thier siblings. this project can be of a

long

> term one where ech week or month they work on a new topic for the

journaling

> sort of art book on feelings for about 15 minutes and then go to a fun

> project.

>

> sondra

>

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May 27, 2009

Thanks Debi, our local Easter Seals does provide respite hours for families,

I don't know how well it would work to provide child care for the disabled

child(ren) of the family because of the liability that could be involved and

finding the right ratio etc.

Though we could always schedule our nights to coincide with the group

respite care that Easter seals provides.

They allow siblings to attend as well as the disabled child, but the woman

said that generally the activities are geared more for the younger ones and

the older kids would just be bored. She was not aware of anything in the

area for the older kids... like pre-teen/tweens. Usually older teens already

have their group of friends and end up with more freedom to visit with

friends etc. since they can get out of the house to work or socialize

without parents.

Tiffanie's initial idea was to have a yard sale with the community's

unwanted items (including our own) and use the funds to take the siblings

out to an activity like Bush Gardens or Adventure Island (water park) that

would be just for them... I thought it was a great idea, but then we started

to think that we didn't know where we'd find these siblings unless we were

to start a support group for them... and then it seemed like it was going to

be too big of a project for this particular award... to start a support

group AND organize large fundraisers to raise money for them... as she does

need to do all the work herself. And in talking to her advisor, she said

that just the first step of creating the support group would be a great

project for the award, and she could work towards getting funding for larger

trips and such as a project for her Gold award...

But I do like the idea of having smaller things like a bowling night etc.

Though when it comes to that I'll probably have to help her get the contacts

going and talking to the businesses to get them to give us free or lower

cost time in their facilities. I'm not sure that she would be very effective

in getting her point across at this point.

Theresa

>

> I think it's a GREAT! idea. Ideally, I would like a younger siblings

> support & teen. The younger kids, say the 5-10, really aren't able to

> participate much in sibshops as it's for older kids. Sibshops might be

> something to research.

>

> For all of them I think activity-based time would be great. Maybe a movie

> night, bowling night, etc. Something where parents could participate or drop

> off. Or sitters for the disabled child so the parent could join the child.

> Siblings may have limited opportunities to get out in the community, so

> activities for them might be a well-needed and deserved night.

>

> You might be able to get local businesses to support you in providing

> free/low cost opportunities. Or get a local disabilities group to provide

> funding or their name for the tax break of providing the opportunities.

>

> Just a few quick thoughts,

> Debi

>

May 27, 2009

Thanks Sondra! I love the idea of having targeted emotions nights.

Ideally at least one parent would be involved with them there as well,

mainly because I don't want to assume responsibility for a bunch of children

that I don't even know.

We have a local Easter Seals program that does some respite help for

families and they have nights where they have a drop off and give the

respite care then. When I spoke with the assistant director of the program

she thought it was a great idea and wanted to see what they could do to help

as well. But we need to have a more clear idea of what we want before we can

really approach them officially to help.

>

> if it isof going to be for siblings of then it is of good if the kids are

> of ayounger group or age if the group has a parent be of involved in some of

> the activities, because often the kids are of seekign any , any sort of

> positive or negative attention from one or both of their parents because the

> speical needs sibling often consumes all the time and attention due to many

> factors of need and care.... so make sure to get of a sitter or respite for

> the special needs siblings and take the NT kids out for fun dates.

>

> so it can be of like for if the one event is of a girls dance lesons or

> movie or things girls like... or a make over... things can be of donated

> often by various stores for causes as this. and or if it is of a time where

> dads can go with the sons and all the dads or male figures take of the sons

> to play basketball or such things as this.

>

> It is of good to have of art therpay sorts of things where the kids can

> draw of thier own pictures and share with the group over targeted emotions

> such as the one thing that makes them frustrated with their sibling, or the

> one things they learned from them , or the most embarrasing day .... sorts

> of themes. this allows them to feel safe to share their feelings with like

> peers who can understand and not judge or maked to feel of bad for having

> normal emotional feelings over thier siblings. this project can be of a long

> term one where ech week or month they work on a new topic for the journaling

> sort of art book on feelings for about 15 minutes and then go to a fun

> project.

>

> sondra

>

May 27, 2009

For about 7 years I helped create and co-chaired a support group for families

with disabilities in our community every summer. Every other weekend we would

plan outings for everyone. Like cook outs, dodge-ball games, trips to the zoo,

bowling nights, putt-putt ect., funded through donations from local businesses.

The neat thing about our group of about 15 families was that the siblings got to

hang out with the siblings, the parents got to hang out with the parents, and

our special children got to feel really special for being the ones who connected

this wonderful group. We recruited families through our local elementary schools

by having teachers pass out fliers near the end of the school year. During the

summer, the schools would donate use of their gym for family activities,

businesses would give us special group discounts, other businesses would donate

funds, food, or prizes which we passed out at the end of the summer for special

recognitions like " The best helper " or " The kindest act " . Anyway, your post

just made me remember those days. It was really a positive experience.. ~~~Aggy

" No one can make you feel inferior without your permission " ~~Eleanor Roosevelt

Subject: What do you look for in a support group?

To: Autism_in_Girls_and_Women

Date: Wednesday, May 27, 2009, 4:29 PM

Ok everyone, I would like to get your ideas on what it is you would look for

in a support group that would make you want to remain a part of it and make

it one that could really last and take off.

I'm speaking in reguards to a live, in person support group and not an

online group such as this list.

My 12 year old is a Cadette Girl Scout and for her silver award project she

wants to start a support group for siblings of children with disabilities.

We are not aware of anything in this area, but also don't know all the

places to check. My youngest daughter's teachers and therapists are not

aware of any support groups in the area for siblings. In fact my dd's

behavioral therapist wasn't sure of even where support groups for parents

are, and suggested I start one and offered use of their offices if I wanted

to. but I'm sure they exist, at least for parents, I've just found it much

easier to do it online because it's accessible all the time and I don't have

a schedule to know that I'd be able to attend.

I would want these kids to be able to be open and honest with each other and

ideally form lasting friendships among themselves. It's definately easier

for them to understand one another when they have an idea of what the other

goes through on a daily basis with their sibling(s) who have disabilities.

My daughter definately has found stronger friendships in her peers that have

a sibling with some type of dx. Even if they never speak of the kids with

disabilities, they just kinda 'get it', how sometimes plans change at the

last minute or they're not able to attend some events because it would just

be too much for the sibling etc.

This was my daughters idea, I'm only trying to help her get some ideas on

where to start and what kind of things to organize in order to make it

happen, and of course since we're in unchartered waters for ourselves having

never been to an in person support group. I thought this would be a good

place to ask some opinions from. I'm confident that she will be able to find

the resources to make it happen, it's just knowing what resources she needs

to look for

Please send me your thoughts and ideas, or questions if you have any. Even

if it's just to tell me something you DIDN'T like about a group you tried

out, hopefully we can try to avoid those things and make it something many

can enjoy and benefit from.

Thanks,

Theresa

Mom to Kourtney 18 NT

Tiffanie 12 (has moderate ADHD)

& 5 (ASD, ADHD, ODD & Epilepsy)

May 28, 2009

To do this on the level your child is able to you need to set up concrete times

and/or dates where there is a calender for her to be available and topics she

can prepare for....perhaps having an open chat or topics room would help...here

she could gain knowledge as to what the room wants to talk about, have time to

prepare for it, and also control what amount of time she can devote to a live

chat session...

Be prepared for those who are not like us...that not everyone is so nice and

those that would attempt to take advantage...as a mom you would be moderator....

Perhaps a well prepared yahoo discussion or the like could be arranged via

personal emails, where only those with a password could attend would be the best

place to start. With maybe a max of 5 people to begin with and up to 20 for a

period of 10 to 30 minutes depending on her availability...live chat is

demanding, so much happens all at once, so many questions, and perhaps this is

why there is nothing like this online dealing with autism to date..

All my hopes for a positive outcome, and a prayer for an invite to at least one

live chat with her!

good luck!

http://speakup.today.com

Subject: What do you look for in a support group?

To: Autism_in_Girls_and_Women

Date: Wednesday, May 27, 2009, 1:29 PM