For new folks...about

May 13, 2003

In a message dated 5/13/03 9:48:53 AM Eastern Daylight Time, rgr4us@...

writes:

> this is the one place on earth where I can say anything I

> need to and know that it will be accepted and understood.

>

> Raena

And where you are loved unconditionally and supported whatever your decision.

Please remember that also.

May 13, 2003

I realized when I was reading and writing answers to posts, that

there are a lot of times when I say things that are very negative,

and I think that it may be appropriate for me to explain my

perspective on things...which is probably different from many of you

because of ' unique situation. Hopefully this will help those

of you who haven't heard this before understand where my posts come

from at times.

doesn't have " classic " austism...he has a condition called

Childhood Disintegrative Disorder. This is in the same family as

infant onset autism, but is different in some important ways.

developed pretty much normally for the first three years of his

life...we had a typical kid until he went to his three year well

child checkup, and the doctor said that his language seemed a

little " disordered " ...and ordered speech and hearing evals.

Over the next three years, " disordered speech " became " DSI based

dyspraxia " ...then " atypical autism " ...and finally CDD. ---a

beautiful little boy who laughed, sang songs, spoke in sentences, and

played gleefully with his siblings---forgot how to be a kid. Instead

of taking a bowl and putting it on his head as a " hat " , he began

biting chunks out of melamine plates. Instead of taking my hand and

saying " go coggy " , he was terrified of the toilet. Instead of

singing about a " bow wow here, and a bow wow there " , he was now

terrified of dogs. His only word was " yuh " . He forgot how to do

puzzles, how to use the computer, and who Barney was. He lost his

place in the world...and spiraled into a place filled with fear,

frustration, and anger.

We have spent the past three years trying to help him find his way

out of that place. Bit by bit, he is making progress, but the

prognosis for CDD is much more bleak than that of classic

autism...there aren't any cases of miraculous recoveries, no kids

with CDD who regain all their skills and suddenly become un-CDD. He

will most likely remain much as he is...and that is truly frightening.

Now don't misunderstand me... is making wonderful progress, and

I have a lot of hope for him despite the statistics...but his life is

difficult in ways that are downright scary at times.

So, for whatever that's worth, this is why I say some of the things I

do...there are times when the weight of the whole thing is just too

much, and this is the one place on earth where I can say anything I

need to and know that it will be accepted and understood.

Raena

May 13, 2003

((((Raena, and Family))))

I don't know what else to say.

Take care,

Libby

> I realized when I was reading and writing answers to posts, that

> there are a lot of times when I say things that are very negative,

> and I think that it may be appropriate for me to explain my

> perspective on things...which is probably different from many of

you

> because of ' unique situation. Hopefully this will help

those

> of you who haven't heard this before understand where my posts come

> from at times.

>

> doesn't have " classic " austism...he has a condition called

> Childhood Disintegrative Disorder. This is in the same family as

> infant onset autism, but is different in some important ways.

> developed pretty much normally for the first three years of his

> life...we had a typical kid until he went to his three year well

> child checkup, and the doctor said that his language seemed a

> little " disordered " ...and ordered speech and hearing evals.

>

> Over the next three years, " disordered speech " became " DSI based

> dyspraxia " ...then " atypical autism " ...and finally CDD. ---a

> beautiful little boy who laughed, sang songs, spoke in sentences,

and

> played gleefully with his siblings---forgot how to be a kid.

Instead

> of taking a bowl and putting it on his head as a " hat " , he began

> biting chunks out of melamine plates. Instead of taking my hand

and

> saying " go coggy " , he was terrified of the toilet. Instead of

> singing about a " bow wow here, and a bow wow there " , he was now

> terrified of dogs. His only word was " yuh " . He forgot how to do

> puzzles, how to use the computer, and who Barney was. He lost his

> place in the world...and spiraled into a place filled with fear,

> frustration, and anger.

>

> We have spent the past three years trying to help him find his way

> out of that place. Bit by bit, he is making progress, but the

> prognosis for CDD is much more bleak than that of classic

> autism...there aren't any cases of miraculous recoveries, no kids

> with CDD who regain all their skills and suddenly become un-CDD.

He

> will most likely remain much as he is...and that is truly

frightening.

>

> Now don't misunderstand me... is making wonderful progress,

and

> I have a lot of hope for him despite the statistics...but his life

is

> difficult in ways that are downright scary at times.

>

> So, for whatever that's worth, this is why I say some of the things

I

> do...there are times when the weight of the whole thing is just too

> much, and this is the one place on earth where I can say anything I

> need to and know that it will be accepted and understood.

>

> Raena

May 13, 2003

You guys are sweet. :-)

Nothing bad is going on right now (knock on wood)...I just felt that

many of my recent posts have been whines, and I also worry that new

people who aren't aware of the difference in our situation might be

more discouraged than they should be, reading them.

I guess that lately, I am feeling a bit bad about leaving with

sitters so much. Took the older kids to " The Lizzie McGuire Movie "

yesterday, and thought he was going, too...made me sad to

leave him standing on the porch looking at us drive away.

Ah well. He truly would have hated it. The volume was way too loud,

and those small theaters shove the movie right into your face. I was

relieved when it was over. :-P

Raena

May 13, 2003

In a message dated 5/13/03 9:48:29 AM Eastern Daylight Time, rgr4us@...

writes:

> there are times when the weight of the whole thing is just too

> much, and this is the one place on earth where I can say anything I

> need to and know that it will be accepted and understood.

>

> Raena

>

Ain't that the truth. Let me say that this rollercoaster ride with Keion has

been hell at times-there are horrific things that I will spare the details of

for now-but suffice to say until we came to this list there were times I

wanted to walk away and never look back. The past weeks have taught me more

and helped us as parents more than you can imagine.

No, you don't seem mean-human?-but thanks for sharing and helping us

understand.

The Grammas & Keion

May 13, 2003

Thanks for sharing 's story. I can not imagine how painful that must be

for you and your family. I have read lots of your posts and never thought that

you were whiny, I thought you come off as an amazing strong person!

Warm Regards

Mom to ASD 11/25/00 & 5/10/99

In Maine