To the Great MOM - , mother of !

[Guest guest]

Good morning, this is G-D!

I will be handling all your problems today.

I will not need your help.....

So have a great day!!!!

On Wed, Mar 26, 2008 at 1:08 AM,

wrote:

> I am the mother of the disabled child from this show.For those of you

> who do not get it let me explain.I love this child very much.I have

> had to fight with Dr.,s to get them to even look at my child when he

> was sick. I had a terrible time getting him diagnoised with autism

> because he already had a label of Downs syndrome.Dr's do not know how

> to recognize symptoms of autism in a child with Ds. I gave this child

> a voice and created a communication book so he could tell me he is

> thirsty/wants/needs.I live in torment every day because if my child

> is hurting,toothache,sick, etc,he cannot tell me.My son went through

> open heart surgery in 2003 and believe you me I was scared he would

> not make it.For someone to say I do not love or do not have a clue

> about taking care of a disabled person.You do not know me or what I

> am about.I wrote to this show because there are no resources were I

> am.The government won't help unless you make less than 15,000 a year

> for a family of (4). We struggle because I can only work on days he

> is in school.I gave up My career when my son was about 4 yrs old

> because no day care would keep him because he was not walking or

> potty trained.If a respite worker comes once most of the time they

> will never come again.Imagine changing a 12 yr old diaper while he is

> kicking and hitting you.They do not want to deal with him.I had a

> school teacher once tell me that my son may never learn his alphabet

> or how to write.I taught my son his alphabet and we are working on

> writing.I believed in my son with no one else did. This is the 1st

> year that my husband has been able to help get our son ready in the

> mornings.Every day of my sons life I have dealt with him throwing

> himself on the bed,or floor and by myself trying to get him ready

> for school.We cannot afford someone to come in every day at $1,000 a

> week and help me with .Insurance does not pay for behavior help.

> I have never wanted to put my son anywhere out of my sight for one

> moment where someone might abuse him.However physically I can no

> longer pull my son up if he throws himself on the floor.My body aches

> every day.My son did not learn the word mean from me.His loving

> sister was upset because he slapped her in the face and she

> said " that was mean " .So now says mean when we make him do

> something he does not want to do.Such as going upstairs,taking a

> bath,having to leave the house, or getting out of the car.Once I had

> to call the Fire and rescue for a lift assist.Why because my son

> would not get out of the car after 2 hours of sitting in the

> car.Whoever said you cannot know what my life is like by watching a

> ten minute segment of a show hit the nail on the head.I belong to a

> support group of parents of kids that are Down syndrome and autistic

> and it's a good thing because ,after reading insensitive post from

> people like you, I do need their support.People should not be so

> quick to judge.

>

>

>

--

Sara - Life is a journey- we choose the path.

[Guest guest]

Sara, and group I feel so fortunate that you guys are supporting

me.Thanks for everyones kinds words, and posts. Cyndi B

>

> Good morning, this is G-D!

> I will be handling all your problems today.

> I will not need your help.....

>

> So have a great day!!!!

>

> On Wed, Mar 26, 2008 at 1:08 AM,

> wrote:

>

> > I am the mother of the disabled child from this show.For those

of you

> > who do not get it let me explain.I love this child very much.I

have

> > had to fight with Dr.,s to get them to even look at my child when

he

> > was sick. I had a terrible time getting him diagnoised with autism

> > because he already had a label of Downs syndrome.Dr's do not know

how

> > to recognize symptoms of autism in a child with Ds. I gave this

child

> > a voice and created a communication book so he could tell me he is

> > thirsty/wants/needs.I live in torment every day because if my

child

> > is hurting,toothache,sick, etc,he cannot tell me.My son went

through

> > open heart surgery in 2003 and believe you me I was scared he

would

> > not make it.For someone to say I do not love or do not have a clue

> > about taking care of a disabled person.You do not know me or what

I

> > am about.I wrote to this show because there are no resources were

I

> > am.The government won't help unless you make less than 15,000 a

year

> > for a family of (4). We struggle because I can only work on days

he

> > is in school.I gave up My career when my son was about 4 yrs old

> > because no day care would keep him because he was not walking or

> > potty trained.If a respite worker comes once most of the time they

> > will never come again.Imagine changing a 12 yr old diaper while

he is

> > kicking and hitting you.They do not want to deal with him.I had a

> > school teacher once tell me that my son may never learn his

alphabet

> > or how to write.I taught my son his alphabet and we are working on

> > writing.I believed in my son with no one else did. This is the 1st

> > year that my husband has been able to help get our son ready in

the

> > mornings.Every day of my sons life I have dealt with him throwing

> > himself on the bed,or floor and by myself trying to get him ready

> > for school.We cannot afford someone to come in every day at

$1,000 a

> > week and help me with .Insurance does not pay for behavior

help.

> > I have never wanted to put my son anywhere out of my sight for one

> > moment where someone might abuse him.However physically I can no

> > longer pull my son up if he throws himself on the floor.My body

aches

> > every day.My son did not learn the word mean from me.His loving

> > sister was upset because he slapped her in the face and she

> > said " that was mean " .So now says mean when we make him

do

> > something he does not want to do.Such as going upstairs,taking a

> > bath,having to leave the house, or getting out of the car.Once I

had

> > to call the Fire and rescue for a lift assist.Why because my son

> > would not get out of the car after 2 hours of sitting in the

> > car.Whoever said you cannot know what my life is like by watching

a

> > ten minute segment of a show hit the nail on the head.I belong to

a

> > support group of parents of kids that are Down syndrome and

autistic

> > and it's a good thing because ,after reading insensitive post from

> > people like you, I do need their support.People should not be so

> > quick to judge.

> >

> >

> >

>

>

>

> --

> Sara - Life is a journey- we choose the path.

>

>

>

[Guest guest]

Just an FYI-The Autism Clinician with our Provider 50 tivoed the show and will

be using it at a Family Sensitivity workshop for their staff in the near

future!!!!

Liz

Re: To the Great MOM - , mother of !

Sara, and group I feel so fortunate that you guys are supporting

me.Thanks for everyones kinds words, and posts. Cyndi B

>

> Good morning, this is G-D!

> I will be handling all your problems today.

> I will not need your help.....

>

> So have a great day!!!!

>

> On Wed, Mar 26, 2008 at 1:08 AM,

> wrote:

>

> > I am the mother of the disabled child from this show.For those

of you

> > who do not get it let me explain.I love this child very much.I

have

> > had to fight with Dr.,s to get them to even look at my child when

he

> > was sick. I had a terrible time getting him diagnoised with autism

> > because he already had a label of Downs syndrome.Dr's do not know

how

> > to recognize symptoms of autism in a child with Ds. I gave this

child

> > a voice and created a communication book so he could tell me he is

> > thirsty/wants/needs.I live in torment every day because if my

child

> > is hurting,toothache,sick, etc,he cannot tell me.My son went

through

> > open heart surgery in 2003 and believe you me I was scared he

would

> > not make it.For someone to say I do not love or do not have a clue

> > about taking care of a disabled person.You do not know me or what

I

> > am about.I wrote to this show because there are no resources were

I

> > am.The government won't help unless you make less than 15,000 a

year

> > for a family of (4). We struggle because I can only work on days

he

> > is in school.I gave up My career when my son was about 4 yrs old

> > because no day care would keep him because he was not walking or

> > potty trained.If a respite worker comes once most of the time they

> > will never come again.Imagine changing a 12 yr old diaper while

he is

> > kicking and hitting you.They do not want to deal with him.I had a

> > school teacher once tell me that my son may never learn his

alphabet

> > or how to write.I taught my son his alphabet and we are working on

> > writing.I believed in my son with no one else did. This is the 1st

> > year that my husband has been able to help get our son ready in

the

> > mornings.Every day of my sons life I have dealt with him throwing

> > himself on the bed,or floor and by myself trying to get him ready

> > for school.We cannot afford someone to come in every day at

$1,000 a

> > week and help me with .Insurance does not pay for behavior

help.

> > I have never wanted to put my son anywhere out of my sight for one

> > moment where someone might abuse him.However physically I can no

> > longer pull my son up if he throws himself on the floor.My body

aches

> > every day.My son did not learn the word mean from me.His loving

> > sister was upset because he slapped her in the face and she

> > said " that was mean " .So now says mean when we make him

do

> > something he does not want to do.Such as going upstairs,taking a

> > bath,having to leave the house, or getting out of the car.Once I

had

> > to call the Fire and rescue for a lift assist.Why because my son

> > would not get out of the car after 2 hours of sitting in the

> > car.Whoever said you cannot know what my life is like by watching

a

> > ten minute segment of a show hit the nail on the head.I belong to

a

> > support group of parents of kids that are Down syndrome and

autistic

> > and it's a good thing because ,after reading insensitive post from

> > people like you, I do need their support.People should not be so

> > quick to judge.

> >

> >

> >

>

>

>

> --

> Sara - Life is a journey- we choose the path.

>

>

>

[Guest guest]

As are all of you. And Dad's too.

Everyone is doing well.

JOan

[Guest guest]

Do you have any idea what how they will be using the video at the

Family Sensitivity workshop? Cyndi B

>

> Just an FYI-The Autism Clinician with our Provider 50 tivoed the

show and will be using it at a Family Sensitivity workshop for their

staff in the near future!!!!

>

> Liz

> Re: To the Great MOM - , mother of

!

>

>

> Sara, and group I feel so fortunate that you guys are supporting

> me.Thanks for everyones kinds words, and posts. Cyndi B

> >

> > Good morning, this is G-D!

> > I will be handling all your problems today.

> > I will not need your help.....

> >

> > So have a great day!!!!

> >

> > On Wed, Mar 26, 2008 at 1:08 AM, <cynthiamiltonburns@>

> > wrote:

> >

> > > I am the mother of the disabled child from this show.For

those

> of you

> > > who do not get it let me explain.I love this child very

much.I

> have

> > > had to fight with Dr.,s to get them to even look at my child

when

> he

> > > was sick. I had a terrible time getting him diagnoised with

autism

> > > because he already had a label of Downs syndrome.Dr's do not

know

> how

> > > to recognize symptoms of autism in a child with Ds. I gave

this

> child

> > > a voice and created a communication book so he could tell me

he is

> > > thirsty/wants/needs.I live in torment every day because if my

> child

> > > is hurting,toothache,sick, etc,he cannot tell me.My son went

> through

> > > open heart surgery in 2003 and believe you me I was scared he

> would

> > > not make it.For someone to say I do not love or do not have a

clue

> > > about taking care of a disabled person.You do not know me or

what

> I

> > > am about.I wrote to this show because there are no resources

were

> I

> > > am.The government won't help unless you make less than 15,000

a

> year

> > > for a family of (4). We struggle because I can only work on

days

> he

> > > is in school.I gave up My career when my son was about 4 yrs

old

> > > because no day care would keep him because he was not walking

or

> > > potty trained.If a respite worker comes once most of the time

they

> > > will never come again.Imagine changing a 12 yr old diaper

while

> he is

> > > kicking and hitting you.They do not want to deal with him.I

had a

> > > school teacher once tell me that my son may never learn his

> alphabet

> > > or how to write.I taught my son his alphabet and we are

working on

> > > writing.I believed in my son with no one else did. This is

the 1st

> > > year that my husband has been able to help get our son ready

in

> the

> > > mornings.Every day of my sons life I have dealt with him

throwing

> > > himself on the bed,or floor and by myself trying to get him

ready

> > > for school.We cannot afford someone to come in every day at

> $1,000 a

> > > week and help me with .Insurance does not pay for

behavior

> help.

> > > I have never wanted to put my son anywhere out of my sight

for one

> > > moment where someone might abuse him.However physically I can

no

> > > longer pull my son up if he throws himself on the floor.My

body

> aches

> > > every day.My son did not learn the word mean from me.His

loving

> > > sister was upset because he slapped her in the face and she

> > > said " that was mean " .So now says mean when we make

him

> do

> > > something he does not want to do.Such as going

upstairs,taking a

> > > bath,having to leave the house, or getting out of the

car.Once I

> had

> > > to call the Fire and rescue for a lift assist.Why because my

son

> > > would not get out of the car after 2 hours of sitting in the

> > > car.Whoever said you cannot know what my life is like by

watching

> a

> > > ten minute segment of a show hit the nail on the head.I

belong to

> a

> > > support group of parents of kids that are Down syndrome and

> autistic

> > > and it's a good thing because ,after reading insensitive post

from

> > > people like you, I do need their support.People should not be

so

> > > quick to judge.

> > >

> > >

> > >

> >

> >

> >

> > --

> > Sara - Life is a journey- we choose the path.

> >

> >

> >

[Guest guest]

It is to show staff members what we as families go through when the help isn't

around...Many workers are not familiar as to what we actually deal with (many

only see a child a few hours a week, thereby not giving them the REAL FEEL for

their client). I think it is meant to show that although so many families DO

TRY their damndest to help the child, it is to no avail. Too many feel that

enough is not being done at home (by the family members) to reinforce the

services provided (therapeutic, etc.) and sometimes blame the families for their

techniques not working. This will help educate them that alot of the times, it

just DOESN'T work. The Clinician actually saw the show last night and was quite

devestated to see (without editing) what alot of us deal with (and although she

never doubted what we told her about Tori) it kinda put it in " black & white "

for her. A reality check, if you like. It shows that the ddx is a double-edged

sword...we have the medical issues so many of our DS kids have to deal

with...and then the Autism that prevents them from being able to communicate to

us as to " where it hurts " .

Liz

Re: To the Great MOM - , mother of

!

>

>

> Sara, and group I feel so fortunate that you guys are supporting

> me.Thanks for everyones kinds words, and posts. Cyndi B

> >

> > Good morning, this is G-D!

> > I will be handling all your problems today.

> > I will not need your help.....

> >

> > So have a great day!!!!

> >

> > On Wed, Mar 26, 2008 at 1:08 AM, <cynthiamiltonburns@>

> > wrote:

> >

> > > I am the mother of the disabled child from this show.For

those

> of you

> > > who do not get it let me explain.I love this child very

much.I

> have

> > > had to fight with Dr.,s to get them to even look at my child

when

> he

> > > was sick. I had a terrible time getting him diagnoised with

autism

> > > because he already had a label of Downs syndrome.Dr's do not

know

> how

> > > to recognize symptoms of autism in a child with Ds. I gave

this

> child

> > > a voice and created a communication book so he could tell me

he is

> > > thirsty/wants/needs.I live in torment every day because if my

> child

> > > is hurting,toothache,sick, etc,he cannot tell me.My son went

> through

> > > open heart surgery in 2003 and believe you me I was scared he

> would

> > > not make it.For someone to say I do not love or do not have a

clue

> > > about taking care of a disabled person.You do not know me or

what

> I

> > > am about.I wrote to this show because there are no resources

were

> I

> > > am.The government won't help unless you make less than 15,000

a

> year

> > > for a family of (4). We struggle because I can only work on

days

> he

> > > is in school.I gave up My career when my son was about 4 yrs

old

> > > because no day care would keep him because he was not walking

or

> > > potty trained.If a respite worker comes once most of the time

they

> > > will never come again.Imagine changing a 12 yr old diaper

while

> he is

> > > kicking and hitting you.They do not want to deal with him.I

had a

> > > school teacher once tell me that my son may never learn his

> alphabet

> > > or how to write.I taught my son his alphabet and we are

working on

> > > writing.I believed in my son with no one else did. This is

the 1st

> > > year that my husband has been able to help get our son ready

in

> the

> > > mornings.Every day of my sons life I have dealt with him

throwing

> > > himself on the bed,or floor and by myself trying to get him

ready

> > > for school.We cannot afford someone to come in every day at

> $1,000 a

> > > week and help me with .Insurance does not pay for

behavior

> help.

> > > I have never wanted to put my son anywhere out of my sight

for one

> > > moment where someone might abuse him.However physically I can

no

> > > longer pull my son up if he throws himself on the floor.My

body

> aches

> > > every day.My son did not learn the word mean from me.His

loving

> > > sister was upset because he slapped her in the face and she

> > > said " that was mean " .So now says mean when we make

him

> do

> > > something he does not want to do.Such as going

upstairs,taking a

> > > bath,having to leave the house, or getting out of the

car.Once I

> had

> > > to call the Fire and rescue for a lift assist.Why because my

son

> > > would not get out of the car after 2 hours of sitting in the

> > > car.Whoever said you cannot know what my life is like by

watching

> a

> > > ten minute segment of a show hit the nail on the head.I

belong to

> a

> > > support group of parents of kids that are Down syndrome and

> autistic

> > > and it's a good thing because ,after reading insensitive post

from

> > > people like you, I do need their support.People should not be

so

> > > quick to judge.

> > >

> > >

> > >

> >

> >

> >

> > --

> > Sara - Life is a journey- we choose the path.

> >

> >

> >

[Guest guest]

Liz, That was a wonderful idea.I hope that it does help someone.You

know Liz, we are all only human and sometimes our emotions when we

are backed into a wall is to come out fighting, and then sometimes

the point we are trying to say gets twisted and misunderstood. But I

hope I have opened the doors and enlightened people to how much

harder this dual dx can be for some of us.I met a lady from my church

tonight who hugged me and started crying.She said to me I do not know

how you do it day in and out and that she could not deal with this if

she were me.I cried to.Have a great day. Cyndi B

>

> It is to show staff members what we as families go through when the

help isn't around...Many workers are not familiar as to what we

actually deal with (many only see a child a few hours a week, thereby

not giving them the REAL FEEL for their client). I think it is meant

to show that although so many families DO TRY their damndest to help

the child, it is to no avail. Too many feel that enough is not being

done at home (by the family members) to reinforce the services

provided (therapeutic, etc.) and sometimes blame the families for

their techniques not working. This will help educate them that alot

of the times, it just DOESN'T work. The Clinician actually saw the

show last night and was quite devestated to see (without editing)

what alot of us deal with (and although she never doubted what we

told her about Tori) it kinda put it in " black & white " for her. A

reality check, if you like. It shows that the ddx is a double-edged

sword...we have the medical issues so many of our DS kids have to

deal with...and then the Autism that prevents them from being able to

communicate to us as to " where it hurts " .

>

> Liz

> Re: To the Great MOM - , mother of

> !

> >

> >

> > Sara, and group I feel so fortunate that you guys are

supporting

> > me.Thanks for everyones kinds words, and posts. Cyndi B

> > >

> > > Good morning, this is G-D!

> > > I will be handling all your problems today.

> > > I will not need your help.....

> > >

> > > So have a great day!!!!

> > >

> > > On Wed, Mar 26, 2008 at 1:08 AM, <cynthiamiltonburns@>

> > > wrote:

> > >

> > > > I am the mother of the disabled child from this show.For

> those

> > of you

> > > > who do not get it let me explain.I love this child very

> much.I

> > have

> > > > had to fight with Dr.,s to get them to even look at my

child

> when

> > he

> > > > was sick. I had a terrible time getting him diagnoised with

> autism

> > > > because he already had a label of Downs syndrome.Dr's do

not

> know

> > how

> > > > to recognize symptoms of autism in a child with Ds. I gave

> this

> > child

> > > > a voice and created a communication book so he could tell

me

> he is

> > > > thirsty/wants/needs.I live in torment every day because if

my

> > child

> > > > is hurting,toothache,sick, etc,he cannot tell me.My son

went

> > through

> > > > open heart surgery in 2003 and believe you me I was scared

he

> > would

> > > > not make it.For someone to say I do not love or do not have

a

> clue

> > > > about taking care of a disabled person.You do not know me

or

> what

> > I

> > > > am about.I wrote to this show because there are no

resources

> were

> > I

> > > > am.The government won't help unless you make less than

15,000

> a

> > year

> > > > for a family of (4). We struggle because I can only work on

> days

> > he

> > > > is in school.I gave up My career when my son was about 4

yrs

> old

> > > > because no day care would keep him because he was not

walking

> or

> > > > potty trained.If a respite worker comes once most of the

time

> they

> > > > will never come again.Imagine changing a 12 yr old diaper

> while

> > he is

> > > > kicking and hitting you.They do not want to deal with him.I

> had a

> > > > school teacher once tell me that my son may never learn his

> > alphabet

> > > > or how to write.I taught my son his alphabet and we are

> working on

> > > > writing.I believed in my son with no one else did. This is

> the 1st

> > > > year that my husband has been able to help get our son

ready

> in

> > the

> > > > mornings.Every day of my sons life I have dealt with him

> throwing

> > > > himself on the bed,or floor and by myself trying to get him

> ready

> > > > for school.We cannot afford someone to come in every day at

> > $1,000 a

> > > > week and help me with .Insurance does not pay for

> behavior

> > help.

> > > > I have never wanted to put my son anywhere out of my sight

> for one

> > > > moment where someone might abuse him.However physically I

can

> no

> > > > longer pull my son up if he throws himself on the floor.My

> body

> > aches

> > > > every day.My son did not learn the word mean from me.His

> loving

> > > > sister was upset because he slapped her in the face and she

> > > > said " that was mean " .So now says mean when we

make

> him

> > do

> > > > something he does not want to do.Such as going

> upstairs,taking a

> > > > bath,having to leave the house, or getting out of the

> car.Once I

> > had

> > > > to call the Fire and rescue for a lift assist.Why because

my

> son

> > > > would not get out of the car after 2 hours of sitting in the

> > > > car.Whoever said you cannot know what my life is like by

> watching

> > a

> > > > ten minute segment of a show hit the nail on the head.I

> belong to

> > a

> > > > support group of parents of kids that are Down syndrome and

> > autistic

> > > > and it's a good thing because ,after reading insensitive

post

> from

> > > > people like you, I do need their support.People should not

be

> so

> > > > quick to judge.

> > > >

> > > >

> > > >

> > >

> > >

> > >

> > > --

> > > Sara - Life is a journey- we choose the path.

> > >

> > >

> > >