Re: Parental Support Groups/how to start a support group archive

April 7, 2008

Congratulations to all of you who are looking to start, or who have

already started a support group. I know as a parent you can feel

overwhelmed, but starting a support group relieves the stress of " Am

I doing everything I can for my child?! " It brings a voice, and

knowledge of apraxia to your community, and how cool is that?!

Working together is even better because it takes all of us as

individuals and gives us a bigger voice.

Since I started a support group within a month of Tanner being

diagnosed (and now you all know how clueless I was!) I am so

confident that anyone can do this, and I'm so proud of any of you

that choose to start one in your area! When Tanner was first

diagnosed in 1999, there were only eight support groups in the entire

world for apraxia. For those states that have no support groups yet,

look at Rhonda, Barbara and who started the ONLY support

group in all of Canada! ECHO of Canada

http://www.apraxia.ca

About the support groups, these are the basic choices-

Online Support

Example is Grammy Patty from Ohio who has had many grandparents that

want to participate in her grandparent support group for apraxia. I

suggested starting a new grouplist just for the grandparents - Grammy

Patty could oversee this list. Grammy Patty can do this in addition

to a personal support group for Ohio which is open to all members of

the family-or choose between the two, whatever she wishes.

Casual Playdate Get Together-Whenever Support Group

This is more like " support buddies. " If you ever scheduled a playdate

with anyone ever, it works the same, except you would first have

parents contact you via the internet-or through referral from local

speech pathologists, neurodevelopmental doctors, etc. These parents

can provide you with the ability to talk to others that understand

you, who will get excited for you when your child says " mommy "

or " daddy " for the first time at three years old. No rules here-

closed group, open group, at public places, or each other's home.

CHERAB can supply the videos of our meetings, and you supply the

popcorn. Of course, you don't need to have any meeting agenda or

videos, you can just hang out and get to know each other. You can do

this without children too, again, it's up to what everyone wants.

Formal " CHERAB-type " Meetings (with speakers, and working with

medical, speech and educational professionals in your area.)

OK, here is an example here, and then I'll tell you what to look for.

just posted that she wanted to start a support source on Long

Island, NY. I already know there are many parents from Long Island on

this grouplist, and some who travel to out meetings. I also know that

Roseanna, an SLP on this grouplist is from LI and is already in touch

with some of the parents. I know some can travel for hours to attend,

but what about those that can't. Local support is great, and it

doesn't mean that you will not be welcome at meetings outside your

area.

This is what to look for in your area

At least one knowledgeable speech language pathologist

At least one knowledgeable respected neurodevelopmental doctor

A large University Hospital, or a Children's Hospital in your area

with a speech and hearing dept.

I remember when someone told me back when I first started a support

group " it's OK to be a bit selfish and book speakers that you want to

know about for your child " and that's probably good advice. If you

are just starting out the questions and interests that you have will

appeal to all in your situation so you won't come across

as " selfish " -instead you'll find a group of others who will

appreciate your efforts. You will be able to book the most sought

after professionals in a variety of fields as speakers to your

meetings.

The reason the hospitals are great is that they can provide you both

with the space as well as with some of the speakers, and some of your

members. That's all you need to start. The meetings can be once a

month, or once a year-whatever you decide you can handle. The above

people, along with our posting to our grouplist, and our website,

will bring more and more people in your state looking to start even

more support groups. Again we are aware that some states have no

support yet, and that many of you feel so alone. I know how that felt.

With awareness, and with all of us coming together as a group, we

will change that, and we will help our children!

In addition to CHERAB -I co founded Speechville with Rhonda son

Cherry (who I mentioned about who co founded ECHO of Canada)

Mikel who co founded Apraxia Kids and Mustafa who assists with

CHERAB. Here's a link to support sources and groups and then a clip

of information from the page about " starting a support group " ( from

The Late Talker book which I believe was part of the 200 pages edited

out since the editor thought there was too much information and

didn't want to overwhelm new parents)

Carnell helped in coordinating the support sources for most of

what is here (remember this ?!!): Regional support -see if

there's a group already started in your area here:

http://www.speechville.com/communication-station/regional-support-groups.html

" Many parents find it overwhelming when they have a child that is a

late-talker. Is there a problem? Who should we see - a doctor, a

pediatrician, a speech pathologist? Are we over-reacting? Do others

notice that our child is not talking?

How many times have we heard: " Einstein didn't talk until he was five

years old " ? Or how about " he will talk when he is ready... " or " she

doesn't need to talk, you give her everything she wants " .

Often these comments are from well-meaning family and or friends, who

have no idea of the impact their comments have on you and even your

child.

It is validating and helpful to be with others who know how you feel,

and who really " get it " . Speak to others in your area about where to

go to get service, clinicians that have worked with children like

yours, great and not so great programs and services.

You can bounce ideas of each other, share information, and even give

your kids the opportunity to have a playdate with other kids who are

like them.

A support group can be a couple of parents meeting with their kids at

the local Mac's, a group of parents sitting around a kitchen

table exchanging information and telephone numbers, or a more formal,

regular meeting with a larger group of families and even guest

speakers. If you would like to meet up with other parents in your

area, please send us an email.

Interested in starting a group? Here are a few pointers...

Set up an email address where you can receive correspondence

from interested people. If possible, have a telephone number where

people

can reach you to get more information. Link to existing websites,

like Speech-Express, to get your name out there for parents who may

be looking for support in your area.

Pick a place to have your meetings, and keep it to that same place -

that will make it easier for people, knowing that you always meet in

the same place. A community centre, church basement, etc. -- anything

free.

Meeting frequency should be determined by your members - monthly,

quarterly, whatever works best for all.

Consider forming an executive for your group, so that the

responsibilities in the group are defined. Basically, a person to

chair the meetings, and another to take notes. Assign a person to

bring refreshments to the meeting -- a box of donuts, a coffeemaker &

a can of apple juice for the kids.

Setting an agenda is a good idea, just so people know what to expect.

Poll the attendees at the end of the meeting to see what they would

like on the agenda for the next meeting.

Will you allow parents to bring their children to the meeting? Will

you have a babysitter, or will the children have to be watched by

their parents?

Consider inviting guest speakers, perhaps your own SLP, a community

worker, someone from your child's school. The possibilities are

endless! "

http://www.speechville.com/communication-station/starting-a-group.html (from

The Late Talker book original manuscript 2003)

There is additional information at

http://www.speechville.com/communication-station/starting-a-group.html too.

Hope this helps and ask any questions!

=====

April 8, 2008

I am with . My inperson support group (started not by me) has

been invaluable. We are getting together outside of our meeting this

weekend for the kids to play and to swap recipes. We are headed to a

social event Fri. Knowing other adults get your deal, are wanting the

same things for all the kids in the group, and " have your back " is an

amzingly uplifting experience. Not one of us has a kid with the exact

same deal but there is tons of overlap. Three of us our now headed to

the same doc, two to the same therapy and while we share recipes nne

of is on the same diet. It is not about that. It is about mutial

support.

>

> Congratulations to all of you who are looking to start, or who have

> already started a support group. I know as a parent you can feel

> overwhelmed, but starting a support group relieves the stress of " Am

> I doing everything I can for my child?! " It brings a voice, and

> knowledge of apraxia to your community, and how cool is that?!

> Working together is even better because it takes all of us as

> individuals and gives us a bigger voice.

>

> Since I started a support group within a month of Tanner being

> diagnosed (and now you all know how clueless I was!) I am so

> confident that anyone can do this, and I'm so proud of any of you

> that choose to start one in your area! When Tanner was first

> diagnosed in 1999, there were only eight support groups in the

entire

> world for apraxia. For those states that have no support groups yet,

> look at Rhonda, Barbara and who started the ONLY support

> group in all of Canada! ECHO of Canada

> http://www.apraxia.ca

>

> About the support groups, these are the basic choices-

>

> Online Support

>

> Example is Grammy Patty from Ohio who has had many grandparents that

> want to participate in her grandparent support group for apraxia. I

> suggested starting a new grouplist just for the grandparents -

Grammy

> Patty could oversee this list. Grammy Patty can do this in addition

> to a personal support group for Ohio which is open to all members of

> the family-or choose between the two, whatever she wishes.

>

> Casual Playdate Get Together-Whenever Support Group

>

> This is more like " support buddies. " If you ever scheduled a

playdate

> with anyone ever, it works the same, except you would first have

> parents contact you via the internet-or through referral from local

> speech pathologists, neurodevelopmental doctors, etc. These parents

> can provide you with the ability to talk to others that understand

> you, who will get excited for you when your child says " mommy "

> or " daddy " for the first time at three years old. No rules here-

> closed group, open group, at public places, or each other's home.

> CHERAB can supply the videos of our meetings, and you supply the

> popcorn. Of course, you don't need to have any meeting agenda or

> videos, you can just hang out and get to know each other. You can

do

> this without children too, again, it's up to what everyone wants.

>

> Formal " CHERAB-type " Meetings (with speakers, and working with

> medical, speech and educational professionals in your area.)

>

> OK, here is an example here, and then I'll tell you what to look

for.

> just posted that she wanted to start a support source on Long

> Island, NY. I already know there are many parents from Long Island

on

> this grouplist, and some who travel to out meetings. I also know

that

> Roseanna, an SLP on this grouplist is from LI and is already in

touch

> with some of the parents. I know some can travel for hours to

attend,

> but what about those that can't. Local support is great, and it

> doesn't mean that you will not be welcome at meetings outside your

> area.

>

> This is what to look for in your area

>

> At least one knowledgeable speech language pathologist

> At least one knowledgeable respected neurodevelopmental doctor

> A large University Hospital, or a Children's Hospital in your area

> with a speech and hearing dept.

>

> I remember when someone told me back when I first started a support

> group " it's OK to be a bit selfish and book speakers that you want

to

> know about for your child " and that's probably good advice. If you

> are just starting out the questions and interests that you have will

> appeal to all in your situation so you won't come across

> as " selfish " -instead you'll find a group of others who will

> appreciate your efforts. You will be able to book the most sought

> after professionals in a variety of fields as speakers to your

> meetings.

>

> The reason the hospitals are great is that they can provide you both

> with the space as well as with some of the speakers, and some of

your

> members. That's all you need to start. The meetings can be once a

> month, or once a year-whatever you decide you can handle. The above

> people, along with our posting to our grouplist, and our website,

> will bring more and more people in your state looking to start even

> more support groups. Again we are aware that some states have no

> support yet, and that many of you feel so alone. I know how that

felt.

>

> With awareness, and with all of us coming together as a group, we

> will change that, and we will help our children!

>

> In addition to CHERAB -I co founded Speechville with Rhonda son

> Cherry (who I mentioned about who co founded ECHO of Canada)

> Mikel who co founded Apraxia Kids and Mustafa who assists with

> CHERAB. Here's a link to support sources and groups and then a clip

> of information from the page about " starting a support group " ( from

> The Late Talker book which I believe was part of the 200 pages

edited

> out since the editor thought there was too much information and

> didn't want to overwhelm new parents)

>

> Carnell helped in coordinating the support sources for most

of

> what is here (remember this ?!!): Regional support -see if

> there's a group already started in your area here:

> http://www.speechville.com/communication-station/regional-support-

groups.html

>

> " Many parents find it overwhelming when they have a child that is a

> late-talker. Is there a problem? Who should we see - a doctor, a

> pediatrician, a speech pathologist? Are we over-reacting? Do others

> notice that our child is not talking?

>

> How many times have we heard: " Einstein didn't talk until he was

five

> years old " ? Or how about " he will talk when he is ready... " or " she

> doesn't need to talk, you give her everything she wants " .

>

> Often these comments are from well-meaning family and or friends,

who

> have no idea of the impact their comments have on you and even your

> child.

>

> It is validating and helpful to be with others who know how you

feel,

> and who really " get it " . Speak to others in your area about where to

> go to get service, clinicians that have worked with children like

> yours, great and not so great programs and services.

>

> You can bounce ideas of each other, share information, and even give

> your kids the opportunity to have a playdate with other kids who are

> like them.

>

> A support group can be a couple of parents meeting with their kids

at

> the local Mac's, a group of parents sitting around a kitchen

> table exchanging information and telephone numbers, or a more

formal,

> regular meeting with a larger group of families and even guest

> speakers. If you would like to meet up with other parents in your

> area, please send us an email.

>

> Interested in starting a group? Here are a few pointers...

>

> Set up an email address where you can receive correspondence

> from interested people. If possible, have a telephone number where

> people

> can reach you to get more information. Link to existing websites,

> like Speech-Express, to get your name out there for parents who may

> be looking for support in your area.

>

> Pick a place to have your meetings, and keep it to that same place -

> that will make it easier for people, knowing that you always meet in

> the same place. A community centre, church basement, etc. --

anything

> free.

>

> Meeting frequency should be determined by your members - monthly,

> quarterly, whatever works best for all.

>

> Consider forming an executive for your group, so that the

> responsibilities in the group are defined. Basically, a person to

> chair the meetings, and another to take notes. Assign a person to

> bring refreshments to the meeting -- a box of donuts, a coffeemaker

&

> a can of apple juice for the kids.

>

> Setting an agenda is a good idea, just so people know what to

expect.

> Poll the attendees at the end of the meeting to see what they would

> like on the agenda for the next meeting.

>

> Will you allow parents to bring their children to the meeting? Will

> you have a babysitter, or will the children have to be watched by

> their parents?

>

> Consider inviting guest speakers, perhaps your own SLP, a community

> worker, someone from your child's school. The possibilities are

> endless! "

> http://www.speechville.com/communication-station/starting-a-

group.html (from The Late Talker book original manuscript 2003)

>

> There is additional information at

> http://www.speechville.com/communication-station/starting-a-

group.html too.

>

> Hope this helps and ask any questions!

>

> =====

>

April 8, 2008

I think that is terrific. But let me tell you, around here, I am faced with

so many parents in denial who think I am crazy for what I am doing. Even

fish oil is too much for these people to handle. But guess whose child is

talking in sentences?

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