Re: Holland trip

[Guest guest]

OH, that poem made me cry. I haven't cried for a while, but that poem says it all. Beirut is a much more fitting example of where I've landed than Holland. Although my son doesn't,at this point, have symptoms of regressive autism, the experience of being able to marvel at normal development (because we've seen "abnormal" development way too many times), to meet the eyes of parents of children who are like Asher and to know that they know and UNDERSTAND .... it fits very much with whatever disorder/disease my son ends up being diagnosed with.

Anne R

[Guest guest]

I missed alot of these posts, but there is a great book on autism called Let Me Hear Your Voice. It is by Maurice. My first cousins son is autistic and that is the first book we read. It is really a good read. We have been very involved with autism and found this book to be one of the best. Jill,scad, Mom of Matt,scad, Zach and Sara(being tested) and my husband ,carrier PS I dont remember if I let the group know, But I have been diagnosed with scad in addition to Matt

[Guest guest]

Anne,

Someone actually wrote a poem in response to the Welcome to Holland

one. The author thought that Welcome to Beirut was more appropriate

for her situation (a typical child who regressed and became autistic

after his 2nd birthday).

Here is the post from another group--

I

never cared for the well intentioned poem, “Welcome to Holland”. It was far to rosey and happy and well, Holland is actually quite nice. J I

am sure

that every parent of a child with a disability feels that their

situation is

unique. I think though, that parents of

children with regressive autism, feel

differently. There is this period in

life that you live a lie. You think “everything

is okay”. It isn’t like having a child

you know AT BIRTH has a disability. You

don’t spend your pregnancy preparing for a child with disability. You are allowed to have a very normal child

for 1-2.5 years. One woman wrote about

how she remembers the last sentence her child spoke. HE

told her “I’m a big boy”.

He then got 6 vaccinations in one day, became sick, and never

spoke

again. It was as though his life was

high jacked. It isn’t like thinking

your going to Italy and ending up in Holland. It is like being IN ITALY

and

YANKED FROM IT and put down in Holland. This poem is one which I really

identified with. The fact that parents

of children with Autism are allowed to live a lie for upwards of 2-4

years

before their child’s disability becomes established, makes

the poem speak to me more. I do feel like we were suddenly

kidnapped. I do feel like an attack occurred. Antonia

WELCOME TO

BEIRUT

by

F.

Rzucidlo

(Beginner's Guide to Autism)

"I

am often asked to describe the experience of raising a child with

autism-to try

and help people who have not shared in that unique experience to

understand it,

to imagine how it would feel. It's like this.."

There you are, happy in your life, one or two little ones at your feet.

Life is

complete and good. One of the children is a little different than the

other but

of course, he's like your in-laws, and you did marry into the family.

It can't

be all that bad. One day someone comes up from behind you and throws a

black

bag over your head. They start kicking you in the stomach and trying to

tear

your heart out. You are terrified, kicking and screaming you struggle

to get

away but there are too many of them, they overpower you and stuff you

into a

trunk of a car. Bruised and dazed, you don't know where you are. What's

going

to happen to you? Will you live through this? This is the day you get

the diagnosis.

"YOUR CHILD HAS AUTISM"!

There you are in Beirut, dropped in the middle of a war. You don't know

the

language and you don't know what is going on. Bombs are dropping "Life

long diagnosis" and "Neurologically impaired". Bullets whiz by

"refrigerator mother" " A good smack is all HE needs to

straighten up". Your adrenaline races as the clock ticks away your

child's

chances for "recovery". You sure as heck didn't sign up for this and

want out NOW! God has over estimated your abilities.

Unfortunately, there is no one to send your resignation to. You've done

everything right in your life, well you tried, well, you weren't caught

too

often. Hey! you've never even heard of autism before. You look around

and

everything looks the same, but different. Your family is the same, your

child

is the same, but now he has a label and you have a case worker assigned

to your

family. She'll call you soon. You feel like a lab rat dropped into a

maze.

Just as you start to get the first one figured out ( early

intervention) they

drop you into a larger more complex one (school). Never to be out done,

there

is always the medical intervention maze. That one is almost never

completed.

There is always some new "miracle" drug out there. It helps some

kids, will it help yours? You will find some if the greatest folks in

the world

are doing the same maze you are, maybe on another level but a

special-ed maze

just the same. Tapping into those folks is a great life line to help

you get

through the day. This really sucks but hey, there are still good times

to be

had. WARNING! You do develop and odd sense of humor. Every so often you

get hit

by a bullet or bomb not enough to kill you, only enough to leave a

gaping

wound. Your child regresses for no apparent reason, and it feels like a

kick in

the stomach. Some bully makes fun of your kid and your heart aches.

You're

excluded from activities and functions because of your child and you

cry. Your

other children are embarrassed to be around your disabled child and you

sigh.

You're insurance company refuses to provide therapies for "chronic,

life

long conditions" and your blood pressure goes up. Your arm aches from

holding onto the phone with yet another bureaucrat or doctor or

therapist who

holds the power to improve or destroy the quality of your child's life

with the

stroke of a pen. You're exhausted because your child doesn't sleep.

And yet, hope springs eternal.

Yes there is hope. There ARE new medications. There IS research going

on. There

are interventions that help. Thank God for all those who fought so hard

before

you came along. Your child will make progress. When he speaks for the

first

time, maybe not until he is 8 yrs old, your heart will soar. You will

know that

you have experienced a miracle and you will rejoice. The smallest

improvement

will look like a huge leap to you. You will marvel at typical

development and

realize how amazing it is. You will know sorrow like few others and yet

you

will know joy above joy. You will meet dirty faced angels on

playgrounds who

are kind to your child without being told to be. There will be a few

nurses and

doctors who treat your child with respect and who will show you concern

and

love like few others. Knowing eyes will meet yours in restaurants and

malls,

they'll understand, they are living through similar times. For those

people you

will be forever grateful. Don't get me wrong. This is war and its

awful. There

are no discharges and when you are gone someone else will have to fight

in your

place.

But, there are lulls in wars, times when the bullets aren't flying and

bombs

aren't dropping. Flowers are seen and picked. Life long friendships are

forged.

You share and odd kinship with people from all walks of life. Good

times are

had, and because we know how bad the bad times are, the good times are

even

better. Life is good but your life in never normal again, but hey, what

fun is

normal

AReckling@... wrote:

You know a bomb is going to go off somewhere at

some time but you don't know when or where, you just have to be at a

heightened state of vigilance all the time. Pessimistic, maybe... ,

but, then again, my one actual trip to Israel almost 10 years ago was

the most interesting, satisfying, and eye-opening experience I've ever

had.

[Guest guest]

What an amazing poem. I thought the TRIP

TO HOLLAND was a small tough into our lives. But, this poem is soooo REAL. Thanks

for sharing.It is so true.

Suhad Haddad -- Mom to Samya (Died 12-10-02 of Leigh's Synd.) &

Leanna with same disease.

Samya's Memorial Site: www.Samya.org

Email:

Suhad1970@...

Alt Email:

Suhad@...

AiM Chat: Suhad1970

From: Plant

Sent: Saturday, April 24, 2004

12:34 PM

To: Mito

Subject:

Re: Holland

trip

Anne,

Someone actually wrote a poem in response to the Welcome to Holland one. The author thought that

Welcome to Beirut

was more appropriate for her situation (a typical child who regressed and

became autistic after his 2nd birthday).

Here is the post from another group--

I never cared for the well intentioned poem, “Welcome to Holland”. It

was far to rosey and happy and well, Holland is actually quite nice. J I am

sure that every parent of a child with a disability feels that their situation

is unique. I think though, that parents of children with regressive

autism, feel differently. There is this period in life that you

live a lie. You think “everything is okay”. It

isn’t like having a child you know AT BIRTH has a disability. You

don’t spend your pregnancy preparing for a child with disability.

You are allowed to have a very normal child for 1-2.5 years. One

woman wrote about how she remembers the last sentence her child spoke. HE

told her “I’m a big boy”. He then got 6 vaccinations in

one day, became sick, and never spoke again. It was as though his life

was high jacked. It isn’t like thinking your going to Italy and ending up in Holland. It is like being IN ITALY and YANKED

FROM IT and put down in Holland.

This poem is one which I really identified with. The fact that parents of

children with Autism are allowed to live a lie for upwards of 2-4 years before

their child’s disability becomes established, makes the poem speak

to me more. I do feel like we were suddenly kidnapped. I do feel like an

attack occurred. Antonia

WELCOME TO BEIRUT

by F. Rzucidlo

(Beginner's Guide to Autism)

" I am often asked to describe the experience of raising

a child with autism-to try and help people who have not shared in that unique

experience to understand it, to imagine how it would feel. It's like

this.. "

There you are, happy in your life, one or two little ones at your feet. Life is

complete and good. One of the children is a little different than the other but

of course, he's like your in-laws, and you did marry into the family. It can't

be all that bad. One day someone comes up from behind you and throws a black

bag over your head. They start kicking you in the stomach and trying to tear

your heart out. You are terrified, kicking and screaming you struggle to get

away but there are too many of them, they overpower you and stuff you into a

trunk of a car. Bruised and dazed, you don't know where you are. What's going

to happen to you? Will you live through this? This is the day you get the

diagnosis. " YOUR CHILD HAS AUTISM " !

There you are in Beirut,

dropped in the middle of a war. You don't know the language and you don't know

what is going on. Bombs are dropping " Life long diagnosis " and

" Neurologically impaired " . Bullets whiz by " refrigerator

mother " " A good smack is all HE needs to straighten up " . Your

adrenaline races as the clock ticks away your child's chances for

" recovery " . You sure as heck didn't sign up for this and want out

NOW! God has over estimated your abilities.

Unfortunately, there is no one to send your resignation to. You've done

everything right in your life, well you tried, well, you weren't caught too

often. Hey! you've never even heard of autism before. You look around and

everything looks the same, but different. Your family is the same, your child

is the same, but now he has a label and you have a case worker assigned to your

family. She'll call you soon. You feel like a lab rat dropped into a maze.

Just as you start to get the first one figured out ( early intervention) they

drop you into a larger more complex one (school). Never to be out done, there

is always the medical intervention maze. That one is almost never completed.

There is always some new " miracle " drug out there. It helps some

kids, will it help yours? You will find some if the greatest folks in the world

are doing the same maze you are, maybe on another level but a special-ed maze

just the same. Tapping into those folks is a great life line to help you get

through the day. This really sucks but hey, there are still good times to be

had. WARNING! You do develop and odd sense of humor. Every so often you get hit

by a bullet or bomb not enough to kill you, only enough to leave a gaping

wound. Your child regresses for no apparent reason, and it feels like a kick in

the stomach. Some bully makes fun of your kid and your heart aches. You're

excluded from activities and functions because of your child and you cry. Your

other children are embarrassed to be around your disabled child and you sigh.

You're insurance company refuses to provide therapies for " chronic, life

long conditions " and your blood pressure goes up. Your arm aches from

holding onto the phone with yet another bureaucrat or doctor or therapist who

holds the power to improve or destroy the quality of your child's life with the

stroke of a pen. You're exhausted because your child doesn't sleep.

And yet, hope springs eternal.

Yes there is hope. There ARE new medications. There IS research going on. There

are interventions that help. Thank God for all those who fought so hard before

you came along. Your child will make progress. When he speaks for the first

time, maybe not until he is 8 yrs old, your heart will soar. You will know that

you have experienced a miracle and you will rejoice. The smallest improvement

will look like a huge leap to you. You will marvel at typical development and

realize how amazing it is. You will know sorrow like few others and yet you

will know joy above joy. You will meet dirty faced angels on playgrounds who

are kind to your child without being told to be. There will be a few nurses and

doctors who treat your child with respect and who will show you concern and

love like few others. Knowing eyes will meet yours in restaurants and malls,

they'll understand, they are living through similar times. For those people you

will be forever grateful. Don't get me wrong. This is war and its awful. There

are no discharges and when you are gone someone else will have to fight in your

place.

But, there are lulls in wars, times when the bullets aren't flying and bombs

aren't dropping. Flowers are seen and picked. Life long friendships are forged.

You share and odd kinship with people from all walks of life. Good times are had,

and because we know how bad the bad times are, the good times are even better.

Life is good but your life in never normal again, but hey, what fun is normal

AReckling@... wrote:

You know a

bomb is going to go off somewhere at some time but you don't know when or

where, you just have to be at a heightened state of vigilance all the time.

Pessimistic, maybe... , but, then again, my one actual trip to Israel almost

10 years ago was the most interesting, satisfying, and eye-opening experience

I've ever had.

Please

contact mito-owner with any problems or questions.