Re: Please, please, please help if you can!!!

January 20, 2006

hi ,

I would love to get your book so one day my son , who is 6 now, can read

it and know how to deal with what he has.

You are the voice for so many children who have this speech disorder. Don't

give up and fight the urge to give in to those negative feelings. I have never

met you but it seems to me that you have a lot of guts to write a book about

your plight. You must have great parents who gave you help with your self

esteem and encouragement to write your story.

" JUST HOLD ON " to quote a famous author of the book " A Million Pieces " . Time

heals all wounds. Your a wonderful person and we hope to hear from you soon

much love and comfort

Rome (mom to ie who is 6 and soon will be reading your book)

kiddietalk <kiddietalk@...> wrote:

Please, please, please help if you can!!!

I can't say the reason why needs help right now -was not told

much by the person that called so don't know the whole story yet

myself -but know it's really bad...

can use our support right now. The person that contacted me

said that she would pass on that people had been searching for

's book. She said she is positive that would love to

hear that and it would cheer him up. So at least we can get

messages to him through her. Fairly recently as you know -or know

from checking the archives -people had tried to contact via

email and phone (including me) and you can't reach him.

As all of you know called CHERAB a year or so ago. Know his

tragic story that's hard to read. And also know that since then he

has spent his time writing a book on his experience in growing up

with apraxia and reaching out to help others. He's been on the news

in Montana and on the front page of the paper speaking out about

apraxia and raising awareness to help all of our children.

I was told that if we write to it will be passed on to him and

he will be able to get back to us when he can. Right now he is

without a computer -so that's part of the problem.

Please just let know we didn't forget about him like it

appears the rest of the world has based on what's going on in his

life right now. The person that contacted me is looking to help him

and said that any letters of support would cheer up and help.

If you want a copy of his book, want to send him a note of thanks

for writing his book or sharing his story, want to let him know that

you are proud of him, or that his story touches or inspires you to

reach out and help your own child more -please either send the

message here, or send to me direct at lisa@...

lisa at cherab.org

I'll gather all the emails and pass them on. I'll share more if and

when I can -and if and when I learn the whole story. I've never met

but his story is so raw -so detailed - that I feel like I do.

Even though I don't know the whole story yet -I again was told it's

really bad -I feel like I could cry.

As a group what we can do is send a huge bunch of letters from all

of us to cheer him up and let him know that we are there for him.

's page

http://www.cherab.org/news/.html

=========

January 20, 2006

-

Just wanted to say that I talked to around a month ago on

messenger and have talked to him on the phone for a long time (the # you gave

me) it did take a few calls to get a hold of him. Like I said this was last

month. I ordered his book and he also send me the order form. I have it saved

in an email if anyone wants it just email me at mattashlong@... and

I'll forward it on.

Last time I talked to he was working on his website and when I checked

it a few days ago it still wasn't done. is truely a great guy we talked

many times and he was very helpful. He is very fun to talk to and is very

funny! He's such a great guy!

if you happen to read this just message me! I'm always around! Keep

your chin up guy! Don't let the world get ya down! You've given me and so many

other people hope when there seemed to be none!

Ashleigh

kiddietalk <kiddietalk@...> wrote:

Please, please, please help if you can!!!

I can't say the reason why needs help right now -was not told

much by the person that called so don't know the whole story yet

myself -but know it's really bad...

can use our support right now. The person that contacted me

said that she would pass on that people had been searching for

's book. She said she is positive that would love to

hear that and it would cheer him up. So at least we can get

messages to him through her. Fairly recently as you know -or know

from checking the archives -people had tried to contact via

email and phone (including me) and you can't reach him.

As all of you know called CHERAB a year or so ago. Know his

tragic story that's hard to read. And also know that since then he

has spent his time writing a book on his experience in growing up

with apraxia and reaching out to help others. He's been on the news

in Montana and on the front page of the paper speaking out about

apraxia and raising awareness to help all of our children.

I was told that if we write to it will be passed on to him and

he will be able to get back to us when he can. Right now he is

without a computer -so that's part of the problem.

Please just let know we didn't forget about him like it

appears the rest of the world has based on what's going on in his

life right now. The person that contacted me is looking to help him

and said that any letters of support would cheer up and help.

If you want a copy of his book, want to send him a note of thanks

for writing his book or sharing his story, want to let him know that

you are proud of him, or that his story touches or inspires you to

reach out and help your own child more -please either send the

message here, or send to me direct at lisa@...

lisa at cherab.org

I'll gather all the emails and pass them on. I'll share more if and

when I can -and if and when I learn the whole story. I've never met

but his story is so raw -so detailed - that I feel like I do.

Even though I don't know the whole story yet -I again was told it's

really bad -I feel like I could cry.

As a group what we can do is send a huge bunch of letters from all

of us to cheer him up and let him know that we are there for him.

's page

http://www.cherab.org/news/.html

=========

January 21, 2006

As an SLP in private practice, I have 's book. I have found it WONDERFUL

and lend it to the parents in my practice. I think it was GREAT for to

share his experiences so other children are not misunderstood. Thank You

, you are making a difference in many lives. Jodi Schechtman MA-CCC-SLP

January 21, 2006

Hi ! I'm a big fan of yours, and I'm glad to be able to tell you so.

You're a hero

around our house. My litle grandson has apraxia too, and we so hope that one

day he'll be

able to put his own wonderful thoughts, hopes, and dreams on paper as you have

so

eloquently done. I hope you can feel the energy from all who care for you just

buzzing,

and whizing all around you. Typing here, I can almost feel the internet

vibrating!

Sending my best wishes to you winging through the air....here they come!

Pat

>

> Please, please, please help if you can!!!

>

> I can't say the reason why needs help right now -was not told

> much by the person that called so don't know the whole story yet

> myself -but know it's really bad...

>

> can use our support right now. The person that contacted me

> said that she would pass on that people had been searching for

> 's book. She said she is positive that would love to

> hear that and it would cheer him up. So at least we can get

> messages to him through her. Fairly recently as you know -or know

> from checking the archives -people had tried to contact via

> email and phone (including me) and you can't reach him.

>

> As all of you know called CHERAB a year or so ago. Know his

> tragic story that's hard to read. And also know that since then he

> has spent his time writing a book on his experience in growing up

> with apraxia and reaching out to help others. He's been on the news

> in Montana and on the front page of the paper speaking out about

> apraxia and raising awareness to help all of our children.

>

> I was told that if we write to it will be passed on to him and

> he will be able to get back to us when he can. Right now he is

> without a computer -so that's part of the problem.

>

> Please just let know we didn't forget about him like it

> appears the rest of the world has based on what's going on in his

> life right now. The person that contacted me is looking to help him

> and said that any letters of support would cheer up and help.

>

> If you want a copy of his book, want to send him a note of thanks

> for writing his book or sharing his story, want to let him know that

> you are proud of him, or that his story touches or inspires you to

> reach out and help your own child more -please either send the

> message here, or send to me direct at lisa@c...

> lisa at cherab.org

>

> I'll gather all the emails and pass them on. I'll share more if and

> when I can -and if and when I learn the whole story. I've never met

> but his story is so raw -so detailed - that I feel like I do.

> Even though I don't know the whole story yet -I again was told it's

> really bad -I feel like I could cry.

>

> As a group what we can do is send a huge bunch of letters from all

> of us to cheer him up and let him know that we are there for him.

> 's page

> http://www.cherab.org/news/.html

>

> =====

>

January 21, 2006

,

I was reading your story at the Cherab site and came across this quote: " The

world gave up on me but I didn't give up on me. " As a mom to a little boy

with global dyspraxia, I can't tell you how hard it is at times to imagine the

challenges ahead for my son. I worry constantly about how those who meet him

may judge him and feel like I am constantly walking a tight rope between

wanting to get him all the help I can so that he can move forward and not

wanting him to feel as if something is " wrong " with him so that his self-esteem

is

impacted. The one truth I hope that he will come away with is the one that

you expressed yourself. That is, I hope he learns how much he is loved, how

fabulous he is in so many ways, and how much his delays can actually make him a

better friend, a kinder person, a more compassionate, wiser human being. In

other words, I hope he grows up to be much like you, . Every time I walk

into my little boy's classroom I steady myself for some comment I likely

won't want to hear which is such a huge contrast to what it's like to walk into

my " typical " daughter's classroom. It's not easy. But you wrote a book,

reached out to others, and have continued to work on improving your speech.

These

are huge things. I hope my son is equally successful. And I hope he remembers

never to get up on himself - I also hope you remember the same right now.

Hang in there.

In a message dated 1/21/2006 10:49:39 AM Pacific Standard Time,

kiddietalk@... writes:

http://www.cherab.org/news/.html

January 21, 2006

Hi , I have a 4/12 old son Nicolas, he too, has been dx with apraxia.

We, as parents, are very grateful to you for having the courage to tell your

story and write a book. Making others aware is where each of us can help in

either a small or big way. You have contributed tremendously with your

courage. Thank you so much for your story. We are praying for you and wish

you

the very best. Know that all the parents are praying for you and wishing you

the best. Best regards Phyllis and Nicolas

January 21, 2006

Thanks for the emails that have come in for so far. For the

most part the few posted here are the only ones I have for him. If

any of you have a moment to post anything for him please do. I'd

like to get them all over by Monday or so and was hoping for a bit

more than 5 emails for him.

The person that contacted me also contacted Dr. Marilyn Agin because

needs a neuroMD in his area. Unfortunately Dr. Agin is not

aware of which neuroMDs are knowledgeable about apraxia in the

Montana area. I was told the MD could be in Colorado, Washington -the

surrounding states too. Anyone have any suggestions for ?

A neuroMD that knows about apraxia (NOT childhood apraxia of speech!)

I'm hoping this has nothing to do with being judged by that

stupid " childhood apraxia of speech " name. was a child with

apraxia 24 years ago -but today he's a 24 year old man. He has

apraxia. <- period. Man he tried so hard to reach out to

help others in spite of all he has gone through and now he really

needs help and it's " really bad " I'm told. Please read his story again -and

again if you have a moment to send a quick note of support, or

anything I can send on to him -please take the time to do so. I

don't know about you guys but even though he's 24 years old and I

don't know him -when I read his story I think " by the grace of God "

and I see not a man but the little boy that cried out for help, and

either nobody heard him -or nobody understood him. So he just cried...

I promise that I'll share more when I know more -and when I'm told

we can. Just please help -and thank you to all that have helped.

(and don't let anyone put in writing on permanent records that your

child has " childhood apraxia of speech " and don't let anyone say

this about your child when s/he's an adult either!!)

http://www.cherab.org/news/.html

=====

January 21, 2006

hi jason- i read your book. thanks for writing it. I got teased alot about my

red hair when i was a kid so i know how mean kids can be. my son has apraxia

and your book showed me how important it is to advocate for him and to make

sure he gets the best treatment. charlotte henry

January 21, 2006

Hi ,

I'd like to post this message of support for . I remember well when I

first read his story, and have followed his messages on this board with

great interest. As the mom of a four year old with apraxia, I was so

intrigued to hear the intelligent and wise words of an obviously smart,

sympathetic and knowledgable man who could put into words to his struggle,

and what many children affected by this profoundly misunderstood disorder

face.

, we've never met, but I hope you know that there's one woman here in

North Carolina who dreams that someday her little toddler can grow up to be

like the terrific man I know you are. Thanks so much for sharing your

stories, advice, and anecdotes here. I am thinking great thoughts in your

direction.

All the best,

Pam O'Connor

[ ] Re: Please, please, please help if

you can!!!