Re: Digest Number 2137

[Guest guest]

Sonie,

That is soooo true!

Can I post this on another group I belong to?

Inna.

Pittsburgh, PA

Message: 10

Date: Tue, 26 Apr 2005 21:25:24 EDT

From: sondrabenke@...

Subject: a mother on one of my aol groups posted this.........ITS VERY

TRUE!!!

Where are the parents?

They are on the phone to doctors and hospitals,

fighting with insurance companies, wading

through the red tape in order that their child's

medical needs can be properly addressed. They

are buried under a mountain of paperwork and

medical bills, trying to make sense of a

system that seems designed to confuse and

intimidate all but the very savvy. They are weary

because everyone says they cannot help them,

and oh, Autism is excluded from your health

insurance policy because it is a psychological

problem, not a physiological problem.

Where are the parents?

They are on the phone to school districts,

teachers, special education administrators, trying

to get what is just for their children. They are

buried under a mountain of regulations and laws

that purport to help them, but just serve to

confuse them. They are trying to become school

house lawyers just to get what the law already

says are their rights. They try to explain

why it is not acceptable for ny or

to sit in the chair without stimulation for four

hours a day, or why circle time is just not

something that a child with autism can

understand.

Where are the parents?

They are at home, diapering their six year old son.

They are chasing their child, who does not

understand the need to eat, or who is allergic to

food, because of the exorbitant behavior the

allergies to food bring on. They spend hours

trying to convince a child to eat that has no

interest. They are administering medications,

hoping and wondering it there is anything that

science will do to help.

Where are the parents?

They are sitting, bleary eyed and exhausted, in

hospital emergency rooms, waiting for test

results to come back and wondering: is this the

time when my chid doesn't pull through? It

seems that ny ran out into the road because

he did not know any better.

Where are the parents?

They are incapacitated, after the sleeping aid the

doctor prescribed for ny had the opposite

effect, and caused the child to stay up for 10

straight days. Somehow, they were not able to

come to the meeting

Where are the parents?

They are at home reading books about behaviorism

and psychology, hoping to learn enough to make

some difference in their child's lives, because the

professionals have told them that discreet trial or

40 hours per week of intense behavioral

intervention is not appropriate for a child. The

child needs to play; they say, but the child does

not know how to play. The child needs to

socialize; they say, but the child does not know

how to play.

Where are the parents?

They are sleeping in shifts because their child

won't sleep more than 2 or 3 hours a night, and

must constantly be watched, lest he do himself,

or another member of their family, harm. They

have not slept in years. They are sitting at home

with their child because family and friends are

either too intimidated or too unwilling to help

with child care and the state agencies that are

designed to help are suffering cut backs of

their own.

Where are the parents?

They are trying to spend time with their non-

disabled child, as they try to make up for

the extra time and effort that is critical to keeping

Their disabled child alive. They are struggling to

keep a marriage together, because adversity does

Not always bring you closer. They are working 2

and sometimes 3 jobs in order to keep up with the

Extra expenses. They cannot make the meetings

because it was only acceptable to the

professionals to hold it during the day, when the

parent has to be at work. There is no vacation

left, or sick days. And sometimes they are a

single parent struggling to do it all by

themselves.

Where are the parents?

They are trying to survive in a society that pays

lip service to helping

those in need, as long as it doesn't cost them

anything. They are trying

to patch up broken dreams together so that

they might have some sort

of normal life for their children and their families.

THEY ARE BUSY, JUST TRYING TO

SURVIVE.

[Guest guest]

oh absolutly go right ahead...sonie