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[Guest guest]

How was the young man with DS supposed to feel after seeing that TV program? Who

can blame him? What sort of cruel, intolerant world have we built for ourselves

and our children?

A " cure " for Down's Sydrome??? Whatever for??? Too much sweetness and love in

the world??? Find a cure for the heart problems or whatever, but leave that love

chomosome alone!

If everyone were like our guys, it would be a better world as far as I'm

concerned. I've told my that every time the opportunity presented itself.

What with war, global warming, ethnic cleansing, etc. I fail to see where being

" normal " or " smarter " has gotten us.

granny

Blog

>

> From Dav's Blog again- this made me cry- I have always " known " that BJ

>has DS, and I KNOW he will ask questions and understand that he is

> " different " , ..........I just never put the 2 together if that makes any

>sense.

>

>

> A Question Along the Way

> <http://davehingsburger.blogspot.com/2008/02/question-along-way.html>

>

>They didn't know what was wrong but they were worried. Their son had

>become remote and uncommunicative. " He's just not himself. "

>

>Describing their son in words typical to parents of kids with Down

>Syndrome, " He's normally a happy, loving kid. We hadn't expected him to

>go through a teenage rebellion period but, what the heck, he's allowed.

>Then we realized that this is something different. Something darker.

>We're worried about him. "

>

>The 15 year old boy was just as his parents described. He didn't seem

>troubled, he seemed burdened. He glanced over at me and it was as if he

>was looking at me from a long way off, not as if we were in a room

>together. But he was curious. He became present in his eyes. " How long

>you been in a wheelchair? "

>

>Somehow, I knew my answer mattered. I didn't want to lie, but I really

>didn't want to tell the truth either. Right now I wanted to identify

>with the chair. " A long time now, " well three years is a long time.

> " What is it like? "

>

>Truth. " I'm fine with it, others aren't so good. "

>

> " What do you mean? "

>

> " Oh, you know, staring, laughing, a bit of bullying ... that kind of stuff. "

>

> " Huh, " a non-committal sound. I thought I'd hit the mark and his sound

>let me know I'd missed. Damn that was my best play.

>

> " So how long you been .... "

>

> " Down Syndrome? I was borne ... "

>

> " No, I know that, " I didn't want him to think I was stupid, " how long

>you been upset like this? "

>

> " Since the show, " he said and made a face like he slipped.

>

>It took a little while but he gave in, I think primarily because he'd

>been upset for too long. He was tired of it all. He told me that he had

>been home watching television and he switched to a show that was about

>Down Syndrome. he said that they were talking about a 'cure' for Down

>Syndrome and he realized later that 'cure' meant 'elimination'. That

>most parents choose to not have a child with Down Syndrome. That there

>was a future without Down Syndrome in it. He was devastated.

>

>For weeks he's worried about it. About his friends with Down Syndrome.

>About his parents, did they have the test? Would they have gotten rid of

>him if they had the chance? He was scared to ask them. Scared about what

>their answer might have been. After all this, told to me in tone of

>upset and defiance even, ended in tears. He was afraid that he had

>slipped by the tests, that he wasn't really wanted. He now understood

>exactly where he stood in the world.

>

>With his permission, I told his parents about what was going on. I let

>them know that in this case, my wheelchair made the difference. He could

>talk to me because the wheelchair made me different enough to trust.

>When they heard, they blanched and then they cried. Both of them. We now

>talked and they said that they didn't know what to tell him. They love

>him. They want him as their son. But in truth, they didn't know that the

>baby would have Down Syndrome, and they don't know what they would have

>done. They couldn't tell him that they wouldn't have had an abortion,

>they may have. But that was before they met him. Fell in love with him.

>They looked at me pleadingly, as if I could give them magic answers.

>

>I suggested keeping the discussion in the present. " He's worried about

>the present. He wants to know if you would have aborted him. Well, the

>answer is no. You've met him, you love him, you want him. Tell him that.

>He'll know it's the truth. "

>

> " What if he asks ... "

>

> " Don't lie to him! " I surprised myself with the strength of my emotion,

> " If he begins to ask bigger questions. Give him bigger answers. Just

>don't lie. He can stand the truth, he'll be devastated by a lie. "

>

>They called me later that day. He didn't ask the bigger question. He

>seemed, they said, more settled and more like his old self.

>

> " But, " mom said, " we are changed. He only has to live with difference,

>we have to live with the bigger question. He knows who he is. He's

>lucky, we have to guess at who we are, who we woued have been under

>other circumstances. "

>

> " I told her that I've learned, over the years, that life keeps asking us

>who we are and who we will be. I don't have a kid with Down Syndrome,

>but I get asked that question all the time. Growth doesn't stop at the

>teen years. "

>

> " There's more of this? "

>

> " Yep, and it's not so bad. "

>

>She laughed, " A word from the wise? "

>

> " A word from the old. "

>

> " Same thing. "

>

> " Not always. "

>

>

>--

>

>Aussie Leis- mum to , Natasha, and Jellybean

>

>Some days you are the bug; other days you are the windscreen! Anon.

>

>

>

>

[Guest guest]

This made me sad but happy. Hopefully my son will also think these " big "

thoughts.

As painful as these questions might be...might it not be more painful if they

are never able to be asked? Our pain " grows " and teaches us. WE Learn new

aspects of our character and Humanity. It is another part of our development

as human beings. WIth pain comes growth (hopefully), and so, hopefully, we

will also experience this painful growing process with our children with DS with

a mixture of sadness and joy! Loree

Sent from my Verizon Wireless BlackBerry

Blog

From Dav's Blog again- this made me cry- I have always " known " that BJ

has DS, and I KNOW he will ask questions and understand that he is

" different " , ..........I just never put the 2 together if that makes any

sense.

A Question Along the Way

<http://davehingsbur

<http://davehingsburger.blogspot.com/2008/02/question-along-way.html>

ger.blogspot.com/2008/02/question-along-way.html>

They didn't know what was wrong but they were worried. Their son had

become remote and uncommunicative. " He's just not himself. "

Describing their son in words typical to parents of kids with Down

Syndrome, " He's normally a happy, loving kid. We hadn't expected him to

go through a teenage rebellion period but, what the heck, he's allowed.

Then we realized that this is something different. Something darker.

We're worried about him. "

The 15 year old boy was just as his parents described. He didn't seem

troubled, he seemed burdened. He glanced over at me and it was as if he

was looking at me from a long way off, not as if we were in a room

together. But he was curious. He became present in his eyes. " How long

you been in a wheelchair? "

Somehow, I knew my answer mattered. I didn't want to lie, but I really

didn't want to tell the truth either. Right now I wanted to identify

with the chair. " A long time now, " well three years is a long time.

" What is it like? "

Truth. " I'm fine with it, others aren't so good. "

" What do you mean? "

" Oh, you know, staring, laughing, a bit of bullying ... that kind of stuff. "

" Huh, " a non-committal sound. I thought I'd hit the mark and his sound

let me know I'd missed. Damn that was my best play.

" So how long you been .... "

" Down Syndrome? I was borne ... "

" No, I know that, " I didn't want him to think I was stupid, " how long

you been upset like this? "

" Since the show, " he said and made a face like he slipped.

It took a little while but he gave in, I think primarily because he'd

been upset for too long. He was tired of it all. He told me that he had

been home watching television and he switched to a show that was about

Down Syndrome. he said that they were talking about a 'cure' for Down

Syndrome and he realized later that 'cure' meant 'elimination'. That

most parents choose to not have a child with Down Syndrome. That there

was a future without Down Syndrome in it. He was devastated.

For weeks he's worried about it. About his friends with Down Syndrome.

About his parents, did they have the test? Would they have gotten rid of

him if they had the chance? He was scared to ask them. Scared about what

their answer might have been. After all this, told to me in tone of

upset and defiance even, ended in tears. He was afraid that he had

slipped by the tests, that he wasn't really wanted. He now understood

exactly where he stood in the world.

With his permission, I told his parents about what was going on. I let

them know that in this case, my wheelchair made the difference. He could

talk to me because the wheelchair made me different enough to trust.

When they heard, they blanched and then they cried. Both of them. We now

talked and they said that they didn't know what to tell him. They love

him. They want him as their son. But in truth, they didn't know that the

baby would have Down Syndrome, and they don't know what they would have

done. They couldn't tell him that they wouldn't have had an abortion,

they may have. But that was before they met him. Fell in love with him.

They looked at me pleadingly, as if I could give them magic answers.

I suggested keeping the discussion in the present. " He's worried about

the present. He wants to know if you would have aborted him. Well, the

answer is no. You've met him, you love him, you want him. Tell him that.

He'll know it's the truth. "

" What if he asks ... "

" Don't lie to him! " I surprised myself with the strength of my emotion,

" If he begins to ask bigger questions. Give him bigger answers. Just

don't lie. He can stand the truth, he'll be devastated by a lie. "

They called me later that day. He didn't ask the bigger question. He

seemed, they said, more settled and more like his old self.

" But, " mom said, " we are changed. He only has to live with difference,

we have to live with the bigger question. He knows who he is. He's

lucky, we have to guess at who we are, who we woued have been under

other circumstances. "

" I told her that I've learned, over the years, that life keeps asking us

who we are and who we will be. I don't have a kid with Down Syndrome,

but I get asked that question all the time. Growth doesn't stop at the

teen years. "

" There's more of this? "

" Yep, and it's not so bad. "

She laughed, " A word from the wise? "

" A word from the old. "

" Same thing. "

" Not always. "

--

Aussie Leis- mum to , Natasha, and Jellybean

Some days you are the bug; other days you are the windscreen! Anon.

[Guest guest]

I'm with Granny. Where has all of our " smartness " gotten us? The world is a

crueler place then it has ever been as far as I see it. Amelia is the sweetest

thing in my life most days. She always seems to think so much of me. That is a

gift that renews me without fail. I didn't know that she had Down Syndrome

until she was born, and honestly I am glad that I didn't. I might have

terminated, I wouldn't have known better. When I imagine my life without Amelia

it is a gray and empty landscape. I wish there was a way for me to communicate

this to people who think termination is " the moral choice. " It is the fear

driven, self absorbed, and life denying choice. We hear song after song about

the importance of love. We read card after card about love. We read book after

book about love. We watch movie after movie about love. Entire freaking

industries are built on the human need for love. Amelia has given me the real

deal-true love- more then any human being in my

life. That, with a husband and son who love me dearly, as I do them. Sorry

fellas, it's not quite the same as the love that Amelia gives (not that I would

ever tell them that!) I got lucky with Amelia. I was given something that most

people will never enjoy. Will she rip my heart out? Yes indeed. She already

has on several occassions. That's okay, because she is worth every thing we go

through. My typical child puts me through hell on a regular basis too. And

that's okay because he is worth everything we go through. As I hear them say in

the highschool " it's all good. "

Ann (mother to Amelia 7w/ds & Jake 6)

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

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

[Guest guest]

That was such an eye-opening blog to me - I have wondered what it may be like

for Olivia to figure out just how different she is, but then to be burdened with

the question of whether you would have even been born, or the others who are

not....I hope this makes me even moreresolved to do my little part to see that

prospective parents have the RIGHT info aboout our kids.

Amen to Granny's comment too!!

Patty

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

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

[Guest guest]

Well that was an emotional story <wiping tears>

We love Storm to death, and I had an amnio and knew that he had

DS. Years ago, before I went through life's trials and

tribulations and survived all of them, I had always said that there

was no way in the world I could handle a special needs child, but

when I was told by the doctor that I had better make a decision

because I only had a few weeks left, I was more than irritated. This

was my child and we would figure it out, I already loved him even

though he was not here yet. There was no decision to be made. At

first I was angry, because I am not the drug addict or the alcoholic

in the family, so why was I the one being punished? And the more I

thought about it, it was not me being punished, it was that I was the

one that could handle this situation, and love my baby for who he

was, and make sure he was the best that he could be. The others that

I was angry at, would not be able to take care of him, make his

appointments, and love him. So I came to the conclusion that I was

blessed. As far as a " cure " for DS, I really don't know what to say.

I mean, I love Storm, and wouldn't change him for the world, except

maybe the throwing of diapers and climbing out of the crib. But it's

hard enough for kids getting tormented that are non DS. THis is a

cruel world. We have to worry about the ridicule for the children and

not to mention the health problems. Yes medical science has come a

long way, and I've witnessed it first hand with Storm's ASD, VSD, and

vascular ring repair, but I worry about him when he does grow up.

Most DS males are sterile, or so I've read, nevermind life

expectancy. I DO NOT want to bury any of my children while I am still

alive and kicking! I want him to have all the opportunities that my

other children have. And alot of those opportunities are there, Storm

is actually right on track, finally catching up after the surgery. But

in all reality, there will be closed doors to certain things, he

will not be able to have his own children for one. I feel as though

I'm rambling, and Storm has escaped from the crib yet again, I hear

him at the gate yelling at the dogs. Just wanted to add my food for

thought.

Mom to Demetrius 12, Tarzan 7 and Storm 2 DS

in Ohio

btw thanks granny for letting me know i goofed up again n didn't send

it to the group. I think I'm the one with special needs in this

household!

[Guest guest]

I don't think it has ever occurred to that he could have been

aborted. He has always known that he is the best thing that ever happened to

us. When he figured out to some extent what it meant to have Down Syndrome,

I told him it didn't mean there was anything wrong with him, just that he was

a little different in some ways. And he has told me that he is " special " , in

a good way. He has accepted it with no problems. He went through a time of

depression some years ago when he realized there were things he wouldn't be

able to do but then he accepted it and has been quite happy since then. Jessie,

mom to , 43

**************

Ideas to please picky eaters. Watch video on

AOL Living.

(http://living.aol.com/video/how-to-please-your-picky-eater/rachel-campos-duffy/\

2050827?NCID=aolcmp00300000002598)

[Guest guest]

I absolutely LOVE Dave's point of view, namely because I share it! I have

googled Dave so that I could read more of his stuff and have found him to be

decent and unfettered. If people can be unfettered. Bottom line is whoever had

him post this THANK YOU! I printed it and will read it again and again.

Ann (mom to Amelia w/ds 7 and Jake 6 w/know-it-all-syndrome)

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

Looking for last minute shopping deals? Find them fast with Search.

[Guest guest]

Hey Girl,

Have you had that baby yet, or are just enjoying being a blob ? ( A

beautiful one though !!! ),,

Aussie

-- Blog

HIya guys

Thi sis from Dave's blog- this is a cool post

http://davehingsburger.blogspot.com/

NEXT <http://davehingsburger.blogspot.com/2008/05/next.html>

It was pandamonium. Way too many people. Way too small a place. Way too

many rules for where to stand. The cafeteria was full of confusion. In a

wheelchair I'm not tall enough to scope the situation out and decide

appropriate action. All Ican see is people swirling in front of me

asking, " Is this where I go for the soup and sandwich? " " Is this where I

go for the grill? " " Is this where I line up for the drinks? " Finally I

see the line for the grill, just off the line for the salads, and head

there.

I order a veggie burger, give my name for pick up, and then proceed

along to pay. Our line is moving swifty, much more quckly than the other

pay line on the other side. " Next! " a voicebox that must have been

shaped at birth like a megaphone alternately shoves the last person away

and pulls in the next calls out ahead of me. " Talk to me, I'm blind,

what are you having? " it's an order, not a request, it's a statement of

fact, not a plea for pity. This woman could teach drill sargents how to

keep order.

Everyone quickly describes that they are having. Salad and fruit is

weighed on the scale beside, keys are punched on the till, total is

announced. " How you paying me? What size is the bill? " then cards are

swiped or change is given. " NEXT! " At one point the customer didn't

leave quickly and the woman slowly gathered up her stuff and didn't

answer, " Is there someone in front of me, tell me your order, " the next

person quickly stepped into place and gave her order.

Her incredible efficiency was amazing. No dilly dally, no 'oh me oh my

I'm so disabled be patient with me' - it was all straighforward

effiency. I can picture her children standing at attention for

inspection in the morning. When I was NEXT, I got up to the till and

started to give my order. She could tell I was sitting not standing so

she lowered her eyes to be about where she figured I was and continued

to give instruction and take information. My money was swapped for

change, I said " thanks " and moved on.

I've always heard about the need to adapt workplaces for people with

disabilties. This may be the first time when a person with a disability

was able to adapt a workforce. Where someone simply stated clearly what

need to be done to get the job accomplished. And people did it. She had

authority, dignity. She stated she was blind, not for pity, but to keep

it clear that the interaction needed to be verbal. She whipped people

through the line up faster than the sighted woman on the other side.

I wonder if she gets a kick out of that. But maybe she doesn't have time

to notice.

" Next! Talk to me! "

--

Aussie Leis- mum to , Natasha, and Jellybean

I'm not bossy I just know what you SHOULD be doing!!

[Guest guest]

Right on, blind lady! Thanks for sharing, Leis.

I grew up with a blind cousin. His name was Grady and he was more like

a brother than a cousin. He went to blind school long enough to learn

braille, but attended public school after that. Back when " inclusion "

was unheard of. He graduated valedictorian of his class and worked his

way through THE UNIVERSITY (that's Texas University to the unwashed

masses :^) ) all the way to a Master of Arts degree playing piano bar

in the better night clubs in Austin. After that he worked for the

state rehabilitating blind people and won many awards. He died about

15 years ago of cancer. I still miss him.

granny

On Thu, May 15, 2008 at 5:38 AM, Leis <lisa@...> wrote:

> HIya guys

>

> Thi sis from Dave's blog- this is a cool post

> http://davehingsburger.blogspot.com/

>

> NEXT <http://davehingsburger.blogspot.com/2008/05/next.html>

>

> It was pandamonium. Way too many people. Way too small a place. Way too

> many rules for where to stand. The cafeteria was full of confusion. In a

> wheelchair I'm not tall enough to scope the situation out and decide

> appropriate action. All Ican see is people swirling in front of me

> asking, " Is this where I go for the soup and sandwich? " " Is this where I

> go for the grill? " " Is this where I line up for the drinks? " Finally I

> see the line for the grill, just off the line for the salads, and head

> there.

>

> I order a veggie burger, give my name for pick up, and then proceed

> along to pay. Our line is moving swifty, much more quckly than the other

> pay line on the other side. " Next! " a voicebox that must have been

> shaped at birth like a megaphone alternately shoves the last person away

> and pulls in the next calls out ahead of me. " Talk to me, I'm blind,

> what are you having? " it's an order, not a request, it's a statement of

> fact, not a plea for pity. This woman could teach drill sargents how to

> keep order.

>

> Everyone quickly describes that they are having. Salad and fruit is

> weighed on the scale beside, keys are punched on the till, total is

> announced. " How you paying me? What size is the bill? " then cards are

> swiped or change is given. " NEXT! " At one point the customer didn't

> leave quickly and the woman slowly gathered up her stuff and didn't

> answer, " Is there someone in front of me, tell me your order, " the next

> person quickly stepped into place and gave her order.

>

> Her incredible efficiency was amazing. No dilly dally, no 'oh me oh my

> I'm so disabled be patient with me' - it was all straighforward

> effiency. I can picture her children standing at attention for

> inspection in the morning. When I was NEXT, I got up to the till and

> started to give my order. She could tell I was sitting not standing so

> she lowered her eyes to be about where she figured I was and continued

> to give instruction and take information. My money was swapped for

> change, I said " thanks " and moved on.

>

> I've always heard about the need to adapt workplaces for people with

> disabilties. This may be the first time when a person with a disability

> was able to adapt a workforce. Where someone simply stated clearly what

> need to be done to get the job accomplished. And people did it. She had

> authority, dignity. She stated she was blind, not for pity, but to keep

> it clear that the interaction needed to be verbal. She whipped people

> through the line up faster than the sighted woman on the other side.

>

> I wonder if she gets a kick out of that. But maybe she doesn't have time

> to notice.

>

> " Next! Talk to me! "

>

> --

>

> Aussie Leis- mum to , Natasha, and Jellybean

>

> I'm not bossy I just know what you SHOULD be doing!!

>

>

[Guest guest]

Hiya hun

Nope no baby yet- is due tomorrow, and shows no sign of moving out yet-

I had a few painful " twinges " last Monday, but that only lasted about 3

minutes.

Natasha was 4 days overdue and was 1 day overdue (both

spontaneous onset) , so only God and this baby know when it will get

here was 3 1/2 weeks early, an emergency c-section and that

was due to eclampsia, so I dont really count his labour

The hospital moved my dates back 12 days, so I am happy to go overdue,

as I think my dates are right I am off to the hospital tomorrow for

my weekly check up- I think they will discuss induction then, but I Will

just tell them I am happy to wait we shall see.............nothing I

can really do to make it happen anyways The rooms are all ready, my

dad has built me shelves etc, so I just plod along trying to keep the

house tidy-which NEVER stays that way.........

Aussie Leis- mum to , Natasha, and Jellybean

I'm not bossy I just know what you SHOULD be doing!!

amandabartlett wrote:

> Hey Girl,

>

> Have you had that baby yet, or are just enjoying being a blob ? ( A

> beautiful one though !!! ),,

>

> Aussie

>

>

[Guest guest]

Hey Girl,

Don't you ever learn , forget the house. Put your feet up and enjoy the rest

and stock up on your sleep bank, cos real soon, you'll be thinking, sleep ?

What's that ??? (lol).

Thinking about you and can't wait to go shopping, just need to know if it's

pink or blue.

Aussie

-- Re: Blog

Hiya hun

Nope no baby yet- is due tomorrow, and shows no sign of moving out yet-

I had a few painful " twinges " last Monday, but that only lasted about 3

minutes.

Natasha was 4 days overdue and was 1 day overdue (both

spontaneous onset) , so only God and this baby know when it will get

here was 3 1/2 weeks early, an emergency c-section and that

was due to eclampsia, so I dont really count his labour

The hospital moved my dates back 12 days, so I am happy to go overdue,

as I think my dates are right I am off to the hospital tomorrow for

my weekly check up- I think they will discuss induction then, but I Will

just tell them I am happy to wait we shall see.............nothing I

can really do to make it happen anyways The rooms are all ready, my

dad has built me shelves etc, so I just plod along trying to keep the

house tidy-which NEVER stays that way.........

Aussie Leis- mum to , Natasha, and Jellybean

I'm not bossy I just know what you SHOULD be doing!!

amandabartlett wrote:

> Hey Girl,

>

> Have you had that baby yet, or are just enjoying being a blob ? ( A

> beautiful one though !!! ),,

>

> Aussie

>

>

[Guest guest]

I'm with you. My daughter was 3 weeks late and that was a long 3

weeks. was born on his due date, how often does that happen. But I

was

all caught up with everything and ready. He's 43 now and I haven't been

caught up since. I don't really know why, it isn't his fault. By the way, even

being so late SHE weighed 7 lbs and 4 oz. He was right on time and weighed 8

and a half pounds. I think there was some miscalculation there, somewhere.

Jessie

**************

Wondering what's for Dinner Tonight? Get new twists on

family favorites at AOL Food.

(http://food.aol.com/dinner-tonight?NCID=aolfod00030000000001)

[Guest guest]

I am a follower, thanks for sharing! ~a

________________________________

From: Terry <sassyt4u@...>

Sent: Fri, October 8, 2010 11:21:16 PM

Subject: Blog

Hi ppl. Hope everyone is doing fine. I started to blog come take a look.

terryorozco.blogspot.com

[Guest guest]

Hi -The BLOG seems to have been taken off , can anybody enlighten me as to where

and why Thanks

[Guest guest]

Unfortunately Sheila and the TPA did not understand the purpose of a blog so

they asked that it be deleted.

Cheers,

JOT

>

> Hi -The BLOG seems to have been taken off , can anybody enlighten me as to

where and why Thanks

>

[Guest guest]

It was an executive decision.LilianOn 11 October 2011 18:29, White <mary36white@...> wrote:

 

Hi -The BLOG seems to have been taken off , can anybody enlighten me as to where and why Thanks

[Guest guest]

I would be willing to share on there any stories that anyone would like me to

share. If not, that is fine too. :-)

>

> I have started a blog chronicling our experience with Olivia's scoliosis. I'm

sharing for those who are interested. :-)

http://theinfantilescoliosischronicles.blogspot.com/

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