Re: Fwd by Carlene Mattson

[Guest guest]

Gosh......Carlene is very eloquent. I'm sure I'll stop crying shortly!!

Thanks for passing that wonderful story on. Is it OK if I take a copy of it

and show it to a magazine Editor in NZ?

Carolyn - mum to on (VS), (VS), Emma (DS) and Nicki (DS)

VS = Very Special DS = Definately Special!!!!!

Fwd by Carlene Mattson

> From: Sara Greenberg <dsyndrome@...>

>

>

>

> Parenting a disabled child

>

> By Carlene K. Mattson

>

> At the end of a long work day in 1971, I watched six

> men with Down syndrome step into the crosswalk in

> front of my car. Twelve curved hands clutched a single

> rope. As they passed, I could see their protruding

> tongues and awkward gaits. Most of all, I saw the rope

> that robbed them of adult dignity and announced their

> dependence to every onlooker. I ached with pity. Had

> God made an error? Had He been looking the other way

> when something caused their differences?

>

> As a child, I hadn't known very many disabled people.

> The only instruction I got was " don't stare at them " a

> message I found confusing. Did it mean I shouldn't be

> rude? Were the disabled too awful to look at? And why

> was everyone so uncomfortable? Were their conditions

> contagious? I pushed the scene of the men with Down

> syndrome away and didn't think about it for a long

> time. Then on June 9,1979, the birth of our second

> son, Jeff, thrust me into their circle.

>

> My pregnancy had been as uneventful as the one for

> Jeff's older brother, 21-month-old Ty. Because our

> baby's disability was not identified at delivery, my

> husband, Bob who had coached me through an easy labor

> went home to make excited calls to our families.

>

> I was still in the recovery room when the on-duty

> pediatrician stopped by. Instead of coming to my side,

> he stood at the foot of my gurney.

>

> " Your son has 10 fingers and 10 toes, and his plumbing

> works, " he began. I braced myself because I knew a

> " but ... " was coming. " But he has Down syndrome. " I

> suppose my stunned silence caused the doctor to think

> I couldn't comprehend his words. He then methodically

> repeated everything as if I, too, might be retarded.

>

> The news caused my entire body to vibrate

> uncontrollably, and the attending nurse lovingly put

> her arm across my shoulder. Her sharing of my grief

> literally anchored me to the gurney.

>

> What Now? The doctor finished with the best advice

> anyone could have given me at that moment: " Just take

> him home and love him. " Then he turned abruptly away.

>

> Later, I would remember his words with thankfulness as

> I heard about insensitive doctors who had referred to

> other children as " mongoloid idiot, " " too handicapped

> to take home, " or even " shark bait. "

>

> Lying alone in the hospital room, I felt the isolation

> of being different. My baby, only minutes old, had

> just been labeled mentally retarded. I begged God to

> make the doctor's diagnosis a mistake. Maybe he had

> confused my baby with another's.... Maybe he talked to

> the wrong mother.

>

> The next day I went home from the hospital, but Jeff

> did not. He had become jaundiced and was placed in an

> incubator under a special light. Between shuttling to

> the hospital to feed Jeff and caring for Ty, I ordered

> books on Down syndrome from the closest university

> medical library. Instead of being helpful, the dated

> books typecast people with Down syndrome as a species

> unto themselves. I tearfully muddled my way through

> those initial days, dealing with the realization that

> the child we dreamed about during my pregnancy was not

> the baby I had delivered.

>

> My attitude changed one evening when I returned to the

> hospital to nurse Jeff. He was the only baby in the

> nursery who had been left unattended. He had wiggled

> out of his protective eye mask and was lying in his

> own excrement because he wasn't wearing a diaper. I

> suddenly stopped feeling sorry for myself. I realized

> Jeff needed a mother who was not focusing on her own

> loss. Whether he was neglected by design or by

> accident, that evening marked a turning point for me.

>

> At home, I got out my yellow pages, looked under

> " handicapped " and began dialing numbers. Finally, one

> of the organizations put me in touch with a support

> group for parents of children with Down syndrome.

> Knowing they had walked in my shoes and were faring

> well was an incredible comfort. My feelings of

> isolation melted away.

>

> The Real Truth

> My experiences have probably not been too different

> from what you imagine. You, too, may have felt pity

> for the handicapped and would be saddened to give

> birth to a child with mental retardation. What is

> staggering to people who have not had my experiences

> is how temporary those emotions are.

>

> What made Jeff's birth so painful was all the

> preconceived ideas I had about people with

> disabilities; in short, my own prejudice. If I had

> only been aware of all the things that people with

> disabilities can achieve, I would have felt admiration

> and never pity. Misinformed, I thought the lives of

> the developmentally disabled were hopeless, a " life on

> a rope " existence. I was wrong.

>

> I also believed my child would be different from

> everyone else. He is not. He is more like you than

> unlike you. He has red hair, a batch of freckles and

> an endearing, dimpled smile. He has hopes and dreams

> and a wonderful ability to form thriving

> relationships. I love to see the world he sees a world

> surrounded with wonder.

>

> I wish someone could have told me what a treasure I

> had just been given upon the birth of this little

> fellow, instead of relating horror stories about

> institutionalized adults. I remember the excitement on

> Jeff's face the first time his father fingered his

> favorite song on our new piano, or the winsome way he

> asks me to close my eyes before he gives me a gift. He

> joyously brings me pocketfuls of dandelions and sniffs

> a gazania with such zest that his nose turns orange

> from the pollen.

>

> Jeff is thankful for the smallest kindness, and he

> sees beauty in ways I miss, even to the velvet moss

> growing in a sidewalk crack. Because other kids are

> quicker, Jeff rarely gets to the swings or the

> drinking fountain first, but his tolerance for those

> who rush past him excels those of his faster peers.

>

> My son's diagnosis dredged up my greatest fears, but

> his spirit exceeds my greatest dreams. He delights in

> looking into the eyes of every baby he meets, and he

> takes time each evening to recap all he is thankful

> for in his prayers.

>

> Looks From Friends

> People who don't know Jeff feel sorry for me. I've yet

> to introduce myself to someone and mention that my

> second son has Down syndrome and not get looks of

> sympathy. People find it hard to believe that he is so

> valuable and such an asset to our family. A short

> while after Jeff came into our lives, my husband and I

> were discussing heaven and what Jeff would be like

> there. In the hereafter, would Jeff be the boy he

> would have been on earth if he hadn't had an extra

> piece of genetic material?

>

> Suddenly in this personal pondering, sorrow came over

> us. Could perfection in heaven mean we would be

> looking at eternity without Jeff as we know him? In

> that momentary sadness, we realized we preferred him

> just the way he was. Once I had fervently beseeched

> God to change my baby. Instead He changed me.

>

> The greatest obstacle to being handicapped or

> challenged, or disabled, or whatever label we may be

> using this year is not the condition, but the stigma

> society still associates with it. We live in a broken

> world, and we imperfect people are always devaluing

> those different from ourselves. The truth is we are

> valuable because of who we are, not because of how we

> look or what we accomplish. And that applies to all of

> us, the disabled and the temporarily able-bodied

> alike.

>

> I'm convinced God didn't turn His back at the moment

> of Jeff's conception. He is still the God of miracles

> and capable of healing anyone. However, in this

> instance, the one who received healing was me. Our

> Lord is still in the business of changing lives, but

> not always in the ways we expect.

>

> Several years ago, Jeff played in a special Little

> League for kids with disabilities. After many seasons

> of watching from the bleachers and rooting while his

> big brother played ball, Jeff's opportunity finally

> arrived. When he received his uniform, he couldn't

> wait to get home to put it on. When he raced out from

> his bedroom, fully suited up, he announced to me,

> " Mom, now I'm a real boy! " Though his words pushed my

> heart to my throat, I assured him he had always been a

> " real boy. "

>

> Of course, I recognized what Jeff was telling me. He,

> all too often, has felt the emotions one experiences

> when others see only your handicap and forget to see

> you. He knew that this uniform meant for him a small

> step toward being more like other boys his age.

>

> My hope in sharing my experiences is that you will set

> aside any prejudices and look past the differences of

> the disabled. By doing so, you can help make this a

> kinder world for Jeff to grow up in. And for some

> unborn children, it might mean being allowed to grow

> up at all.

>

> Next time, if you see us out and about, look closely.

> You even have my permission to stare, but if you do,

> please notice something. I'm the one who is

> " different, " and Jeff is the " real boy. "

>

>

>

>

> =====

>

> > http://DSyndrome.com/Multiples

[Guest guest]

>

> Parenting a disabled child

Sara:

How do I get in touch with this Carlene to ask her permission to use

this in our newsletters?

Any help would be appreciated

[Guest guest]

Well, I'm not going to say you can, as it has been

previously published. But if I were you... I would.

Sara

--- tonycarolyn <tonycarolyn@...> wrote:

> Gosh......Carlene is very eloquent. I'm sure I'll

> stop crying shortly!!

> Thanks for passing that wonderful story on. Is it

> OK if I take a copy of it

> and show it to a magazine Editor in NZ?

>

> Carolyn - mum to on (VS), (VS), Emma

> (DS) and Nicki (DS)

> VS = Very Special DS = Definately Special!!!!!

>

> Fwd by Carlene Mattson

>

>

> > From: Sara Greenberg <dsyndrome@...>

> >

> >

> >

> > Parenting a disabled child

> >

> > By Carlene K. Mattson

> >

> > At the end of a long work day in 1971, I watched

> six

> > men with Down syndrome step into the crosswalk in

> > front of my car. Twelve curved hands clutched a

> single

> > rope. As they passed, I could see their protruding

> > tongues and awkward gaits. Most of all, I saw the

> rope

> > that robbed them of adult dignity and announced

> their

> > dependence to every onlooker. I ached with pity.

> Had

> > God made an error? Had He been looking the other

> way

> > when something caused their differences?

> >

> > As a child, I hadn't known very many disabled

> people.

> > The only instruction I got was " don't stare at

> them " a

> > message I found confusing. Did it mean I shouldn't

> be

> > rude? Were the disabled too awful to look at? And

> why

> > was everyone so uncomfortable? Were their

> conditions

> > contagious? I pushed the scene of the men with

> Down

> > syndrome away and didn't think about it for a long

> > time. Then on June 9,1979, the birth of our second

> > son, Jeff, thrust me into their circle.

> >

> > My pregnancy had been as uneventful as the one for

> > Jeff's older brother, 21-month-old Ty. Because our

> > baby's disability was not identified at delivery,

> my

> > husband, Bob who had coached me through an easy

> labor

> > went home to make excited calls to our families.

> >

> > I was still in the recovery room when the on-duty

> > pediatrician stopped by. Instead of coming to my

> side,

> > he stood at the foot of my gurney.

> >

> > " Your son has 10 fingers and 10 toes, and his

> plumbing

> > works, " he began. I braced myself because I knew a

> > " but ... " was coming. " But he has Down syndrome. "

> I

> > suppose my stunned silence caused the doctor to

> think

> > I couldn't comprehend his words. He then

> methodically

> > repeated everything as if I, too, might be

> retarded.

> >

> > The news caused my entire body to vibrate

> > uncontrollably, and the attending nurse lovingly

> put

> > her arm across my shoulder. Her sharing of my

> grief

> > literally anchored me to the gurney.

> >

> > What Now? The doctor finished with the best advice

> > anyone could have given me at that moment: " Just

> take

> > him home and love him. " Then he turned abruptly

> away.

> >

> > Later, I would remember his words with

> thankfulness as

> > I heard about insensitive doctors who had referred

> to

> > other children as " mongoloid idiot, " " too

> handicapped

> > to take home, " or even " shark bait. "

> >

> > Lying alone in the hospital room, I felt the

> isolation

> > of being different. My baby, only minutes old, had

> > just been labeled mentally retarded. I begged God

> to

> > make the doctor's diagnosis a mistake. Maybe he

> had

> > confused my baby with another's.... Maybe he

> talked to

> > the wrong mother.

> >

> > The next day I went home from the hospital, but

> Jeff

> > did not. He had become jaundiced and was placed in

> an

> > incubator under a special light. Between shuttling

> to

> > the hospital to feed Jeff and caring for Ty, I

> ordered

> > books on Down syndrome from the closest university

> > medical library. Instead of being helpful, the

> dated

> > books typecast people with Down syndrome as a

> species

> > unto themselves. I tearfully muddled my way

> through

> > those initial days, dealing with the realization

> that

> > the child we dreamed about during my pregnancy was

> not

> > the baby I had delivered.

> >

> > My attitude changed one evening when I returned to

> the

> > hospital to nurse Jeff. He was the only baby in

> the

> > nursery who had been left unattended. He had

> wiggled

> > out of his protective eye mask and was lying in

> his

> > own excrement because he wasn't wearing a diaper.

> I

> > suddenly stopped feeling sorry for myself. I

> realized

> > Jeff needed a mother who was not focusing on her

> own

> > loss. Whether he was neglected by design or by

> > accident, that evening marked a turning point for

> me.

> >

> > At home, I got out my yellow pages, looked under

> > " handicapped " and began dialing numbers. Finally,

> one

> > of the organizations put me in touch with a

> support

> > group for parents of children with Down syndrome.

> > Knowing they had walked in my shoes and were

> faring

> > well was an incredible comfort. My feelings of

> > isolation melted away.

> >

> > The Real Truth

> > My experiences have probably not been too

> different

> > from what you imagine. You, too, may have felt

> pity

> > for the handicapped and would be saddened to give

> > birth to a child with mental retardation. What is

> > staggering to people who have not had my

> experiences

> > is how temporary those emotions are.

> >

> > What made Jeff's birth so painful was all the

> > preconceived ideas I had about people with

> > disabilities; in short, my own prejudice. If I had

> > only been aware of all the things that people with

> > disabilities can achieve, I would have felt

> admiration

> > and never pity. Misinformed, I thought the lives

> of

> > the developmentally disabled were hopeless, a

> " life on

> > a rope " existence. I was wrong.

> >

> > I also believed my child would be different from

> > everyone else. He is not. He is more like you than

> > unlike you. He has red hair, a batch of freckles

> and

> > an endearing, dimpled smile. He has hopes and

> dreams

> > and a wonderful ability to form thriving

> > relationships. I love to see the world he sees a

> world

> > surrounded with wonder.

> >

> > I wish someone could have told me what a treasure

> I

> > had just been given upon the birth of this little

>

=== message truncated ===

<HR>

<html>

>

=====

[Guest guest]

Sara,

I really liked this. I'm going to print some copies

for the parents in my support group! I'll tell them to

read it when they get home because it is quite a tear

jerker.

mom to Landon (DS) and Ashton 16 months

--- Sara Greenberg <dsyndrome@...> wrote:

>

> Well, I'm not going to say you can, as it has been

> previously published. But if I were you... I would.

>

> Sara

>

> --- tonycarolyn <tonycarolyn@...> wrote:

> > Gosh......Carlene is very eloquent. I'm sure I'll

> > stop crying shortly!!

> > Thanks for passing that wonderful story on. Is it

> > OK if I take a copy of it

> > and show it to a magazine Editor in NZ?

> >

> > Carolyn - mum to on (VS), (VS), Emma

> > (DS) and Nicki (DS)

> > VS = Very Special DS = Definately Special!!!!!

> >

> > Fwd by Carlene Mattson

> >

> >

> > > From: Sara Greenberg <dsyndrome@...>

> > >

> > >

> > >

> > > Parenting a disabled child

> > >

> > > By Carlene K. Mattson

> > >

> > > At the end of a long work day in 1971, I watched

> > six

> > > men with Down syndrome step into the crosswalk

> in

> > > front of my car. Twelve curved hands clutched a

> > single

> > > rope. As they passed, I could see their

> protruding

> > > tongues and awkward gaits. Most of all, I saw

> the

> > rope

> > > that robbed them of adult dignity and announced

> > their

> > > dependence to every onlooker. I ached with

> pity.

> > Had

> > > God made an error? Had He been looking the other

> > way

> > > when something caused their differences?

> > >

> > > As a child, I hadn't known very many disabled

> > people.

> > > The only instruction I got was " don't stare at

> > them " a

> > > message I found confusing. Did it mean I

> shouldn't

> > be

> > > rude? Were the disabled too awful to look at?

> And

> > why

> > > was everyone so uncomfortable? Were their

> > conditions

> > > contagious? I pushed the scene of the men with

> > Down

> > > syndrome away and didn't think about it for a

> long

> > > time. Then on June 9,1979, the birth of our

> second

> > > son, Jeff, thrust me into their circle.

> > >

> > > My pregnancy had been as uneventful as the one

> for

> > > Jeff's older brother, 21-month-old Ty. Because

> our

> > > baby's disability was not identified at

> delivery,

> > my

> > > husband, Bob who had coached me through an easy

> > labor

> > > went home to make excited calls to our families.

> > >

> > > I was still in the recovery room when the

> on-duty

> > > pediatrician stopped by. Instead of coming to my

> > side,

> > > he stood at the foot of my gurney.

> > >

> > > " Your son has 10 fingers and 10 toes, and his

> > plumbing

> > > works, " he began. I braced myself because I knew

> a

> > > " but ... " was coming. " But he has Down

> syndrome. "

> > I

> > > suppose my stunned silence caused the doctor to

> > think

> > > I couldn't comprehend his words. He then

> > methodically

> > > repeated everything as if I, too, might be

> > retarded.

> > >

> > > The news caused my entire body to vibrate

> > > uncontrollably, and the attending nurse lovingly

> > put

> > > her arm across my shoulder. Her sharing of my

> > grief

> > > literally anchored me to the gurney.

> > >

> > > What Now? The doctor finished with the best

> advice

> > > anyone could have given me at that moment: " Just

> > take

> > > him home and love him. " Then he turned abruptly

> > away.

> > >

> > > Later, I would remember his words with

> > thankfulness as

> > > I heard about insensitive doctors who had

> referred

> > to

> > > other children as " mongoloid idiot, " " too

> > handicapped

> > > to take home, " or even " shark bait. "

> > >

> > > Lying alone in the hospital room, I felt the

> > isolation

> > > of being different. My baby, only minutes old,

> had

> > > just been labeled mentally retarded. I begged

> God

> > to

> > > make the doctor's diagnosis a mistake. Maybe he

> > had

> > > confused my baby with another's.... Maybe he

> > talked to

> > > the wrong mother.

> > >

> > > The next day I went home from the hospital, but

> > Jeff

> > > did not. He had become jaundiced and was placed

> in

> > an

> > > incubator under a special light. Between

> shuttling

> > to

> > > the hospital to feed Jeff and caring for Ty, I

> > ordered

> > > books on Down syndrome from the closest

> university

> > > medical library. Instead of being helpful, the

> > dated

> > > books typecast people with Down syndrome as a

> > species

> > > unto themselves. I tearfully muddled my way

> > through

> > > those initial days, dealing with the realization

> > that

> > > the child we dreamed about during my pregnancy

> was

> > not

> > > the baby I had delivered.

> > >

> > > My attitude changed one evening when I returned

> to

> > the

> > > hospital to nurse Jeff. He was the only baby in

> > the

> > > nursery who had been left unattended. He had

> > wiggled

> > > out of his protective eye mask and was lying in

> > his

> > > own excrement because he wasn't wearing a

> diaper.

> > I

> > > suddenly stopped feeling sorry for myself. I

> > realized

> > > Jeff needed a mother who was not focusing on her

> > own

> > > loss. Whether he was neglected by design or by

> > > accident, that evening marked a turning point

> for

> > me.

> > >

> > > At home, I got out my yellow pages, looked under

> > > " handicapped " and began dialing numbers.

> Finally,

> > one

> > > of the organizations put me in touch with a

> > support

> > > group for parents of children with Down

> syndrome.

> > > Knowing they had walked in my shoes and were

> > faring

> > > well was an incredible comfort. My feelings of

> > > isolation melted away.

> > >

> > > The Real Truth

> > > My experiences have probably not been too

> > different

>

=== message truncated ===

<HR>

<html>

>

=====

[Guest guest]

I have no idea how to get intouch with Carlene. Try a

people search on the WWW maybe??

Sara

--- <lauranra@...> wrote:

>

> >

> > Parenting a disabled child

>

>

> Sara:

> How do I get in touch with this Carlene to ask

> her permission to use

> this in our newsletters?

>

> Any help would be appreciated

>

>

>

>

>

------------------------------------------------------------------------

> http://DSyndrome.com/Multiples

>

<HR>

<html>

>

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