Re: Where are the parents?

[Guest guest]

Thank you for this incredibly effective piece of poetry! I have a

daughter in 3rd grade who doesn't have any of the physical struggles

that are described in this piece (I am thankful to God for this).

We have been " discussing " her social/emotional needs with her school

and are hitting a wall. A friend on the school board talked with me

a while ago as I described to her what was wrong with our district

(I have an education background which makes me THINK/KNOW I'm an

expert). Then she asked me the question--Why haven't you come forth

with this sooner? I really had to think a little--what HAVE I been

doing the last three years since my daughter was diagnosed with

Asperger's? I wish I had 's piece to give to her, but now I

have my answer: researching, googling, keeping behavior logs, being

a Brownie leader for social skills, driving/waiting at therapies,

spending 3x as long on anything--homework, getting dressed, eating;

sending letters to teachers, planning special meals, collecting

urine/stool samples, and I'm going to think of more!

Could we all add to this list?

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> Where are the parents?

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> By Sue Stuyvesant

>  

> I am mom to , 9 years old, microcephalic, athetoid/spastic

CP, Cortical Visual Impairment, Seizure Disorder - and CUTE! 

Earlier this week a question was asked by some nit wit school

official as to why there weren't more parents (of special needs

kids) involved in the local PTA and other issues that have come up

that directly involve our kids.  His question, which was passed on

to me, was " Where are the Parents? " .  Here, the question gets

answered.)

>  

> Where are the parents?

>  

>      They are on the phone talking to doctors and hospitals and

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.

>  

> Where are the parents?

>  

>      They are at home, diapering thier 15-year old son, or trying

to lift their 100 lb. daughter onto the  toilet.  They are spending

an hour at each meal to feed a child who cannot chew , or

laboriously and carefully feeding their child through a g-tube. 

They are administering medications, changing catheters, and

switching oxygen tanks.

>  

> 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 child doesn't pull through? 

They are sitting patiently, in hospital rooms, as their child

recovers from yet another surgery to lengthen hamstrings or

straighten backs, or repair a faulty internal organ.  They are

waiting in long lines in county clinics because no insurance company

will touch their child.

>  

> 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 the family, harm.  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 cutbacks

of their own.

>  

> Where are the parents?

>  

>      They are trying to spend time with their non-disabled

children, as they try to make up for extra time and effort that is

critical to keeping their disabeld 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.

>  

>      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 their broken dreams together so that they

might have some sort of normal life for their children and their

families.

>  

>      They are busy, trying to survive.

>  

> Sincerely,

>  

>  

> Barron-Pieper, MS

> Rescue Angel

>

>

>

> Love, Gabby. :0)

> http://stemcellforautism.blogspot.com/

>  

> " I know of nobody who is purely Autistic or purely neurotypical.

Even God had some Autistic moments, which is why the planets all

spin. " ~ Jerry Newport

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