Re: New CHERAB Facebook page!!! (how to join and still be a secret)

[Guest guest]

" Momresearch "

it's clear you are very concerned with anyone knowing your name and

that's OK. I really don't care who knows my real name (or even that

my maiden name is Fernandez so I can reconnect with people I

graduated from HS with)

My goal may be different than yours -mine is for world awareness of

apraxia -and a great place I found for that today is Facebook.

This group is private and after ten years we only have around 10

thousand members. Clearly we've done a great job of keeping apraxia

a secret to the world while today 30 to 40 percent of children that

are diagnosed with autism (I'm told by two respected professionals)

are misdiagnosed and really have apraxia.

Awareness will help the children as well as those that are older and

were never diagnosed younger. On the CHERAB facebook I've already

posted links about Radcliffe, various therapies, fish oils,

soft signs -and I only started the group last night

http://www.facebook.com/group.php?gid=115029735601

Now to address your email about privacy, clearly you never really

checked out Facebook because it's very easy for one to join and be a

secret to the world outside of those they want to know.

Here's how.

Sign in to your account:

Click on " Settings " on the top right

Click on " Privacy "

(it will read)

manage

Control what information you share.

Then from there you have an entire list of information you can choose

to block from everyone –you can even block people!!!

(you can choose from)

Profile

Control who can see your profile and personal information.

Search

Control who can search for you, and how you can be contacted.

News Feed and Wall

Control what stories about you get published to your profile and to

your friends' News Feeds.

Applications

Control what information is available to applications you use on

Facebook.

Block People

~~~~~~~~~~~~~~~~

So if you are like me and want to shout to the world APRAXIA or

DYSPRAXIA or AUTISM or SPEECH DELAY or LATE TALKER and want everyone

to be aware of our rising group of children that clearly up till now

have no public voice -you can join and still be a secret

http://www.facebook.com/group.php?gid=115029735601

(PS For my personal page I chose not to be secret -I just don't post

anything I dont want people to see)

=====

[Guest guest]

You know , I actually had some semi-crazy person kind of do some 'weird'

things from the old dyspraxia family group. She googled me, eventually

discovered my phone number, started calling (not to chat but to stalk); it was

weird..... so I can understand it if people don't wish to personally identified.

It can be a big, bad world out there so we must all be cautious.... not only

that some individuals value their privacy or perhaps they have some measure of

'fame' where they are from and don't want their personal life laid out for all

to see.... that's okay.

[ ] Re: New CHERAB Facebook page!!! (how to join

and still be a secret)

" Momresearch "

it's clear you are very concerned with anyone knowing your name and

that's OK. I really don't care who knows my real name (or even that

my maiden name is Fernandez so I can reconnect with people I

graduated from HS with)

My goal may be different than yours -mine is for world awareness of

apraxia -and a great place I found for that today is Facebook.

This group is private and after ten years we only have around 10

thousand members. Clearly we've done a great job of keeping apraxia

a secret to the world while today 30 to 40 percent of children that

are diagnosed with autism (I'm told by two respected professionals)

are misdiagnosed and really have apraxia.

Awareness will help the children as well as those that are older and

were never diagnosed younger. On the CHERAB facebook I've already

posted links about Radcliffe, various therapies, fish oils,

soft signs -and I only started the group last night

http://www.facebook.com/group.php?gid=115029735601

Now to address your email about privacy, clearly you never really

checked out Facebook because it's very easy for one to join and be a

secret to the world outside of those they want to know.

Here's how.

Sign in to your account:

Click on " Settings " on the top right

Click on " Privacy "

(it will read)

manage

Control what information you share.

Then from there you have an entire list of information you can choose

to block from everyone -you can even block people!!!

(you can choose from)

Profile

Control who can see your profile and personal information.

Search

Control who can search for you, and how you can be contacted.

News Feed and Wall

Control what stories about you get published to your profile and to

your friends' News Feeds.

Applications

Control what information is available to applications you use on

Facebook.

Block People

~~~~~~~~~~~~~~~~

So if you are like me and want to shout to the world APRAXIA or

DYSPRAXIA or AUTISM or SPEECH DELAY or LATE TALKER and want everyone

to be aware of our rising group of children that clearly up till now

have no public voice -you can join and still be a secret

http://www.facebook.com/group.php?gid=115029735601

(PS For my personal page I chose not to be secret -I just don't post

anything I dont want people to see)

=====

[Guest guest]

I agree -that's why I let everyone know there are options for those

that want to stay private. I chose not to keep my profile private but

I don't post anything I care about anyone seeing. My address and

phone number for example are not on my facebook. On Facebook however

you can see photos of my dogs Simba and Sandy.

If I talk to someone on FB about something private we talk in private.

I've connected with an old director I used to work with when I worked

in animation as well as a director of PR for The Late Talker book who

is now working for another book publisher. Will there be another book

in the future?....Will there be a movie?.....

You know what I love most about Facebook outside of the obvious -is

that so many times I write about how much I love that movie ie-

and I can talk about it here forever and I do- but do I really get my

point across to all -you've got to see this movie? I don't think so.

But on the CHERAB Facebook page all I had to do is download a 1

minute clip from ie with a description of that 1 minute and I

believe it's clear to all why I love it so much. I wish they had one

where ie is teaching Marie as a little girl to speak too -so cute!

A picture speaks a thousand words -so a video clip speaks a...

trillion? As they say on Facebook hahahaha

I include my phone number on all of my emails -and I never had a

problem with it -in fact that reminds me I have to call back a parent

that just called me for help while I was on the phone helping another

parent!

Oh and PS for those that missed it

http://www.facebook.com/group.php?gid=115029735601

=====

[Guest guest]

Kiddietalk wrote

> " Momresearch "

>

> it's clear you are very concerned with anyone knowing your name and

> that's OK.

>

You're right on this point at least - I am protective of MY right to

privacy which is not a bad thing in these times. To this personal

choice of mine, I always take the necessary steps to do that when

needed...and have always had that taken care of at Facebook and

elsewhere as I deemed important - for me.

> My goal may be different than yours -mine is for world awareness of

> apraxia -and a great place I found for that today is Facebook.

>

I wouldn't go so far as to presume that my dyspraxia/apraxia awareness

goals are different than yours. I think it's great to spread awareness

of apraxia worldwide, or I would not be doing just that for 6 years. In

fact, I just heard from a mom that you requested that I contact here who

needed help about 3 years ago -- she and her daughter are doing well and

have sought the alternative help needed. I also still host a local

dyspraxia awareness discussion group on this side of the world.

> This group is private and after ten years we only have around 10

> thousand members.

I am happy that the membership numbers at groups have grown to such

a high number now...that means several thousand members have come on

board in the past year or so...double-edged sword -- also sad if that

many newer kids are being diagnosed with apraxia problems, isn't it?

Does this membership number reflect only the current active email

addresses or does it also include bouncing/inactive emails not yet

deleted via moderator maintenance?

> Clearly we've done a great job of keeping apraxia

> a secret to the world while today 30 to 40 percent of children that

> are diagnosed with autism (I'm told by two respected professionals)

> are misdiagnosed and really have apraxia.

>

Lots of children diagnosed with autism actually have other underlying

and real medical conditions that leave them with autistic-like

behaviors. Even my older son has always had more apraxia-related

symptoms which result in some autism symptoms, but I give more weight to

dyspraxia and even more weight to the underlying conditions that cause

him to have dyspraxia (i.e. neurological dysfunction)...so I totally

understand the grey area between various diagnosis. Apraxia awareness

IS increasing though and not just in the U.S.

> Awareness will help the children as well as those that are older and

> were never diagnosed younger. On the CHERAB facebook I've already

> posted links about Radcliffe, various therapies, fish oils,

> soft signs -and I only started the group last night

> http://www.facebook.com/group.php?gid=115029735601

>

Apraxia awareness is extremely important to all of us and Facebook is

another very fruitful outlet to expand that awareness...noone has denied

that at all. As technology continues to expand, more prospective

avenues to reach people via internet to promote awareness and marketing

strategies will continue to evolve. Getting the word out does make a

difference, no matter where in the world one is. We're seeing that here

where I am - as some therapist say it's not rare, other do and parents

hungry for info that was not readily available now is.

> Now to address your email about privacy, clearly you never really

> checked out Facebook because it's very easy for one to join and be a

> secret to the world outside of those they want to know.

>

Well, ...honestly - I AM a member of Facebook and I have checked it

out with a fine tooth comb...and I have MY privacy settings secured and

configured to my liking from day 1, including suppressing details I have

chosen not to share. Your comment directed at me that " clearly you never

really checked it out " was a bit on offensive to me and presumptive.

Not everyone is computer or internet savvy and not everyone is aware of

features and configuration options (I am, however.) I also understand

that Facebook is the newest internet fad for networking with friends and

colleagues and people you don't know but who share interests. My

message was not intent to discourage people from joining any Facebook

family...only to make people aware of what they can expect that is " new

and different " from how groups works. I'm sorry if some of you

misinterpreted my email as such.

> Here's how.

>

> Sign in to your account:

>

> Click on " Settings " on the top right

>

> Click on " Privacy "

>

> (it will read)

> manage

> Control what information you share.

>

> Then from there you have an entire list of information you can choose

> to block from everyone -you can even block people!!!

>

> (you can choose from)

>

> Profile

> Control who can see your profile and personal information.

>

> Search

> Control who can search for you, and how you can be contacted.

>

> News Feed and Wall

> Control what stories about you get published to your profile and to

> your friends' News Feeds.

>

> Applications

> Control what information is available to applications you use on

> Facebook.

>

> Block People

>

>

Thanks for providing the above instructions for potential new Facebook

users who may not understand how to manage their personal profiles

preferences.

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

>

> So if you are like me and want to shout to the world APRAXIA or

> DYSPRAXIA or AUTISM or SPEECH DELAY or LATE TALKER and want everyone

> to be aware of our rising group of children that clearly up till now

> have no public voice -you can join and still be a secret

>

But you know what..........I already do this and in a positive way, too!

> http://www.facebook.com/group.php?gid=115029735601

>

> (PS For my personal page I chose not to be secret -I just don't post

> anything I dont want people to see)

You have for years chosen to keep most of your private life in the

public eye and that's okay. I am glad you feel comfortable doing that.

[Guest guest]

(smile)

I really don't have time to go back and forth on this Momresearch. I

was thinking of this whole privacy thing while I was working out today

and it started to remind me of what we went through as a group back

when we were asked to be on Inside Edition...or what Bilker went

through when he put up that awesome Talking Page

http://www.debtsmart.com/talk and probably what some of you go through

that put up videos of your child learning to speak at YouTube or that

start websites for your family....it's the people that have something

to say about those of us that want to speak up for our children and

others -and share our own personal stories to help others know they

are not alone. Let me tell you something momresearch -I was there in

1999 when pretty much there were no personal stories -just advice.

When you have a child that has a condition you never heard of and you

feel alone -you don't want just advice -you want to know you are not

alone. At least I did and the fact people used to drive 6 hours to

come to our support meeting just to meet others told me I wasn't alone

in that thought. I wanted to hear stories from others who had been

there before. I wanted to know therapy tips from other parents -not

just from the SLPs and from magazines. I share today and have shared

for years because I was thankful for those that were willing to share

with me. I take my time everyday to reach out via email, this group,

the phone, and now the new Facebook page to help those that need help.

http://www.facebook.com/group.php?gid=115029735601

I am myself more afraid of a child falling through the cracks because

of lack of awareness than sharing my real name on Facebook! And I

don't have some kind of name. What can I say I walk on the

edge.

Thank God for Bilker putting up the Talking Page

http://www.debtsmart.com/talk because apraxia was such an excellent

secret when Tanner was diagnosed that even some SLPs didn't know what

the heck it was. I didn't relate to what I read at Apraxia Kids about

apraxia because my son was nonverbal but had oral apraxia, hypotonia

and sensory issues and didn't fit the signs of verbal apraxia at that

point. It wasn't until I heard Bilker, 's son who by the

way is now a teen, that I knew that Tanner had apraxia and started

crying -because I could tell by the flaccid deaf sound that

had that Tanner used to have too when he tried to say anything.

But back to Facebook.

I put up the page to educate the world and shared it to see if anyone

wanted to join it -if you don't want to you won't. I respect

everyone's privacy and have kept this a private group -but the fact

that I put a page up and I feel like a blast coming from someone that

doesn't even share her first name here...well that's fine. Everyone has

their quirks.

But quirks or not, just like anyone has the right to privacy -anyone

has the right to write a book about what they went through with their

2 late talker children in hopes that it will prevent the next person

from having to take the harder road of ignorance. That's why I wrote

The Late Talker. In that book I have my children's story, In that

book they share I live in Florida on the Treasure Coast. On my

Facebook page the network for me that I 'chose' that was the closest

to me was Palm Beach. Good luck finding me in Palm Beach if anyone

looked as I'm north of Palm Beach -but I'd love to live in that house

they film the show Privileged in!!!

As far as how many members are here? Your kidding me right? It is

what it is. I don't have the time to email everyone and ask if they

are still wanting to be members if that's what you think. I would

think people would unsubscribe if they didn't want to be members.

People subscribe and unsubscribe all the time from these types of

groups. You view around 10 thousand as lots and I view it as piddly

poo in the world of how many children are affected out there in the

world.

I will continue to promote the new Facebook page at CHERAB and hope to

be able to share more advice and information there so that people will

learn more about the faces of apraxia. It's not all children -go to

YouTube and guess who's put up most of the videos on dyspraxia....the

affected teens and 20 year olds!

You know I was on the phone earlier today with a dad who's child is

viewed as having cognitive issues because he was 8 years old and

couldn't say his colors. The assumption was that the child didn't

know his colors. I asked him " did anyone ever show him a bunch of

colors and ask him to point to the color blue, the color green, the

color red? " and explained about nonverbal ways of testing. Stuff we

know here and take for granted. I gave him some other advice and we

are going to speak again in a week or so. He maybe got my phone

number off the internet. Perhaps it was from Facebook- I didn't ask

because honestly I don't care. I do care about helping those that

need help.

I am willing to share my story because what I went through twice was

horrible -and the not knowing anybody else was out there was horrible,

and the having to educate the teachers and family and friends " what is

apraxia " was horrible -and today having to explain why apraxia is not

autism since it's viewed the same is still horrible. All these

conditions need awareness. For those that don't want to join in a

public forum -don't. For those that do -join me.

Speaking of which if anyone wants to upload any photos or videos of

their child -please feel free to. I know there are some really good

therapy ones at YouTube. I already left a message for you.

And for the few, the brave, willing to share their names or at least a

made up one....

http://www.facebook.com/group.php?gid=115029735601

=====