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Hi ,

What a wonderful thing you are doing! Thank you so much for doing it. I live

in Florence, OR. It is a small town on the central coast of Oregon. I am

pretty new to Apraxia, and trying to learn more about it everyday. My son,

turned 4 in July and only about a week before that was he diagnosed as

Apraxic. (Though we had assumed he was for over a year.)

I am very interested in being part of a support group here. I know that they

have one in Portland, but it would be nice to have one closer. I do not know if

someone has already volunteered to be the contact for the state, but I could try

if no one else comes forward.

I am a stay at home mother of two and I am homeschooling my son and a few of his

friends. Of course I will be busy like everyone else, but if no one else comes

forward to be your contact for Oregon, I would try and do my best. Let me know.

Thank you,

Graham

wrote:

> Hello everyone!!

>

> It is time for me to tell you all what I have been working on. I am

from North Carolina and have become the Outreach Coordinator for Support Groups

Worldwide for CHERAB. My goal is to get a support group in every state, in

every country and network " them " together for the ultimate support and

information flow. " Them " would include parents, as well as any medical,

speech, or educational professionals that would like to participate. When this

is complete, we will be able to bring awareness to everyone worldwide- and share

information at incredible speed. In the end, it will be the children who will

benefit from all our organizing and hard work.

>

> I have decided to start this endeavor by asking people to be the " contact " for

their state. What this means is that when CHERAB or I (or anyone else for that

matter) gets an e-mail from someone from a particular state - not only will I

respond and help in anyway possible, but I will include the contact for their

state so they can help with support and information as well. As people start

meeting others from their home state (and hopefully city) together we can

organize a support group for that area. Remember - it only takes 2 to make a

support group!!

>

> The listservs are WONDERFUL, but I have found that personal connection with

others who are going through the same thing I am is priceless. Being able to

speak 'one to one' with a professional that cares for our children, or being

able to look in another mom's eyes and know what she is going through, is

extrordinary.

>

> I have already contacted many people and have received some wonderful replies

from special people who are willing to help others. I am still looking for many

more though. With the recent e-mails from the great state of Fla. - it seems

like a perfect place to start organizing. So far I have 7 people from there

(not including my parents also!!) and think it would be great for you all to

connect. Even if you don't live right next to one another - you can form an

e-mail support group and every so often (couple of months?) you can all meet

somewhere close to you all? Here is the list that I have - please e-mail me and

let me know what I can do to help you all in Fla. Also, please let me know if

any of you (or all of you!) would like to be the contact for Fla.

>

> For everyone else out there - please e-mail me if you are interested in being

a contact for your state - or if you are looking for others in your state. I

will continue to try and organize and contact people. Thank you in advance for

all your help!!

>

> Carnell

> North Carolina

> www.verbaldyspraxia.com

> Outreach Coordinator

> www.apraxia.cc

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  • 31 years later...
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I would be willing to do something. Anything I can,but I am not a good

organizer but would be willing to try!

BTW The address in borngmama@... think you had a n instead of m.

I think your great for doing what your doing. Thanks so much!

Jennie

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I have been looking for a support group in my state/area. I live Holly

Springs, GA which is about 30 minutes northeast of Atlanta.

Thanks for doing this!

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,

What a great idea. We currently have an active support group that

meets once a month on the eastside of Cincinnat, Oh with about 20 or

25 active members. I would certailnly be willing to be the contact

person for this area which includes Soutwestern Ohio, Southeastern

Indiana and Northern Kentucky. Anybody who lives in this general area

is free to contact me via my private email which is

douglas.schmidt@.... Let me know if there is anything I can do

to help.

Doug

Father of andra 7, Kurt 4.9 with apraxia

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Hi, !

I joined this list a couple of weeks ago. It seems to me that everyone in

somewhere in the east. With a few exceptions to CA.

I'm in Salt Lake City, Utah. Smack dab in the middle of the west.

I am sure that there has to be kids here with this disorder. My own 3.4

year old son has never been " officially " diagnosed YET. We have an

appointment with a Rehab physician on 8/30 and if that doesn't satisfy me an

appointment with a pediatric neurolgist in Dec. I would love to help bring

people together out here, although I would have no clue where to start. Let

me know what I can do.

Kristi (Mother to 5 busy children, Justice 9, Jordan 6, Becca 4, 3.4

possible apraxia, and Bayley 8 months.)

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I think I'm the only one in California. I haven't seen anyone else

from out here. The closest has been Arizona.

Suzi

--- In @y..., Kristi Olsen <kristi_olsen@e...>

wrote:

> Hi, !

> I joined this list a couple of weeks ago. It seems to me that

everyone in

> somewhere in the east. With a few exceptions to CA.

> I'm in Salt Lake City, Utah. Smack dab in the middle of the west.

> I am sure that there has to be kids here with this disorder. My

own 3.4

> year old son has never been " officially " diagnosed YET. We have an

> appointment with a Rehab physician on 8/30 and if that doesn't

satisfy me an

> appointment with a pediatric neurolgist in Dec. I would love to

help bring

> people together out here, although I would have no clue where to

start. Let

> me know what I can do.

>

> Kristi (Mother to 5 busy children, Justice 9, Jordan 6, Becca 4,

3.4

> possible apraxia, and Bayley 8 months.)

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,

I am so glad to hear you are homeschooling your 4 yr old. I am too. along

with my 8 year old . But we suspect our 4 yr old is apraxic. What are you

using with him as far as curriculum?

> I am a stay at home mother of two and I am homeschooling my son and a few

of his friends. Of course I will be busy like everyone else, but if no one

else comes forward to be your contact for Oregon, I would try and do my

best. Let me know.

>

> Thank you,

> Graham

> >

> > For everyone else out there - please e-mail me if you are interested in

being a contact for your state - or if you are looking for others in your

state. I will continue to try and organize and contact people. Thank you

in advance for all your help!!

> >

> > Carnell

> > North Carolina

> > www.verbaldyspraxia.com

> > Outreach Coordinator

> > www.apraxia.cc

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  • 6 years later...

Humility is the answer. I believe that fear can make a normally wise

person act a little crazy. This world is a hostile place, most are

here because we are scared for our lives. A lot of the time a person

(that is cranky) is new to a group and perhaps doesn't know that it

is safe here,a place with people that really want to help, people in

the same boat as they are just perhaps a little further down the

river. If we are patient they will come around. Some of us may tend

to play with them a little. Others may feel the fierce loyalty for

our fellows that causes us to be a little to harsh with the new ones.

We all need a little humility, enough to be kind - but not bullied.

Remember when we have a lot of hopelessness and sorrow over our

illness and what it has done to our life, every day can seem evil.

But if we are keeping our heart joyful no one and nothing can keep

our life from being a festival always.

S

>

> " What'll we do when the going gets rough

> And the journey gets tough,

> What'll we do?

>

> " Courage take, for goodness sake!

> And when we're out of courage and we're ready to break,

>

> " We can turn to each other

> We're sister and brother

> Pulling together we can work it out.

>

> " All alone, we just can't make it

> By ourselves we fall behind

> If we lift and pull together

> We can help each other climb. "

>

> Song from Saturday's Warrior, 1974

>

> Bottom line is, we are here for help and support.

> Support means love and friendship.

> It means, seeing the best in each other and bringing it out.

> Also, encouraging, uplifting, supporting.

> And, sharing our knowledge and experiences.

> And other things too.

>

> What do we do when someone on the list doesn't seem to understand

that?

> When someone is rude and disrespectful of others?

> When someone seems to have a need to be right and make others wrong.

> Or a need to judge or control, when they don't have the courage to

> apologize because they have a need to look good, and if they

apologize,

> it means they did something bad, and they can't admit that.

> That is the question I have today.....

> Any ideas?

>

> Kathy

>

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12:32 PM 11/23/07, Kathy wrote:

What do we do when someone on the list doesn't seem to understand

that?

When someone is rude and disrespectful of others?

When someone seems to have a need to be right and make others wrong.

Or a need to judge or control, when they don't have the courage to

apologize because they have a need to look good, and if they apologize,

it means they did something bad, and they can't admit that.

That is the question I have today.....

Any ideas?

~~~~~~~~~~~

Hi Kathy,

Behavior modification involves ignoring undesirable behaviors and giving

attention to or rewarding " good " ones.

The more " personality " discussions continue on list, the more

they bring the energy down. If no one responds to posts that are

off topic or in some way " offensive " , they WILL become

less and less.

If we write more and more about mms, whether about our experience,

information, etc, that WILL become the dominant theme of the

list.

It's so tempting to respond to something that bothers us, to make our

point. But that usually involves a cascade of more posts that we get sunk

in.

Byron says there's there kinds of business. Our business, other

people's business, and God's business. And if we're minding other

people's business, then who's minding our business? And anyway ... it's

all God's business.

So if we mind our own business and turn the rest over to God ... or group

dynamics, if that's a more acceptable belief ... we'll develop a

pretty good discussion group here for ourselves!

Angel

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In order to ignore the negative we have to discipline ourselves and give up our own need to be right.I. Try not to argue with those who will never be convinced. IN NCVilik Rapheles <vilik@...> wrote: 12:32 PM 11/23/07, Kathy wrote: What do we do when someone on the list doesn't seem to understand

that?When someone is rude and disrespectful of others?When someone seems to have a need to be right and make others wrong.Or a need to judge or control, when they don't have the courage to apologize because they have a need to look good, and if they apologize, it means they did something bad, and they can't admit that.That is the question I have today.....Any ideas? ~~~~~~~~~~~Hi Kathy,Behavior modification involves ignoring undesirable behaviors and giving attention to or rewarding "good" ones. The more "personality" discussions continue on list, the more they bring the energy down. If no one responds to posts that are off topic or in some way "offensive", they WILL become less and less.If we write more and more about mms, whether about our experience, information, etc, that WILL become the dominant theme of the list.It's so tempting

to respond to something that bothers us, to make our point. But that usually involves a cascade of more posts that we get sunk in. Byron says there's there kinds of business. Our business, other people's business, and God's business. And if we're minding other people's business, then who's minding our business? And anyway ... it's all God's business.So if we mind our own business and turn the rest over to God ... or group dynamics, if that's a more acceptable belief ... we'll develop a pretty good discussion group here for ourselves!Angel Wilkins

http//:www.juiceplus.com/+lw55887

The Children's Research Foundation Children 6-15 FREE for 3 years

Be a better sports nut! Let your teams follow you with Mobile. Try it now.

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that is an excellant point of view to have.

.S

> What do we do when someone on the list doesn't seem to understand

that?

> When someone is rude and disrespectful of others?

> When someone seems to have a need to be right and make others wrong.

> Or a need to judge or control, when they don't have the courage to

apologize because they have a need to look good, and if they

apologize, it means they did something bad, and they can't admit that.

> That is the question I have today.....

> Any ideas?

>

> ~~~~~~~~~~~

> Hi Kathy,

>

> Behavior modification involves ignoring undesirable behaviors and

giving attention to or rewarding " good " ones.

>

> The more " personality " discussions continue on list, the more they

bring the energy down. If no one responds to posts that are off

topic or in some way " offensive " , they WILL become less and less.

>

> If we write more and more about mms, whether about our experience,

information, etc, that WILL become the dominant theme of the list.

>

> It's so tempting to respond to something that bothers us, to make

our point. But that usually involves a cascade of more posts that we

get sunk in.

>

> Byron says there's there kinds of business. Our business,

other people's business, and God's business. And if we're minding

other people's business, then who's minding our business? And

anyway ... it's all God's business.

>

> So if we mind our own business and turn the rest over to God ... or

group dynamics, if that's a more acceptable belief ... we'll develop

a pretty good discussion group here for ourselves!

>

> Angel

>

>

>

>

>

>

> Wilkins

> http//:www.juiceplus.com/+lw55887

> The Children's Research Foundation Children 6-15 FREE for 3 years

>

>

> ---------------------------------

> Be a better sports nut! Let your teams follow you with

Mobile. Try it now.

>

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  • 7 months later...
Guest guest

I'm on Daily Strength also, my name there is snooksmama

Its a great site.

S.----- Original Message -----From: Vicki Hoyt <dvhoyt@...>Date: Thursday, June 26, 2008 10:24Subject: support groupsRheumatoid Arthritis > Hi,> I belong to a group on www.dailystrength.org and I love it. It > has many groups you can join and you can belong to more than > one. I recommend people check it out and see if it's for you.> Vicki> > > >

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  • 2 years later...

We've had meetings in Santa Cruz county occasionally.

>

> Hi all

> I just was diagnosed with celiac disease after 47 years and a colon resection.

It is a tad daunting! Is there a support group in the bay area that has in

person meetings? I can't seem to find one.

> Thanks

> Carolyn

>

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