The writer's son, Jason Kingsley, has penned a book with another young guy also with DS, called "Count Us In: Growing Up With Down Syndrome". Here is a link, I think it would be quite a read! http://billandria.blogspot.com/2011/07/book-review-count-us-in-growing-up-with.html
Having an amnio test ruined my life
- Thread starter thanka2
- Start date
nicolejoy
Registered User
Here is a more "raw" version of the "Welcome to Holland" story: from http://niederfamily.blogspot.com/2010/10/amsterdam-international.html I love this "add on" if you want to call it that - because having a child with special needs isn't all a bed of tulips 
__________________
In the special needs world, there is a poem (essay? whatever.) called "Welcome to Holland." It is supposed to explain what it's like to have a child with special needs. It's short and sweet.
It skips everything.
While "Welcome to Holland" has a place, I used to hate it. It skipped over all of the agony of having a child with special needs and went right to the happy ending.
The raw, painful, confusing entry into Holland was just glossed over. And considering the fact that this little poem is so often passed along to new-moms-of-kids-with-special-needs, it seems unfair to just hand them a little story about getting new guidebooks and windmills and tulips.
If I had written "Welcome to Holland", I would have included the terrible entry time. And it would sound like this:
Amsterdam International
Parents of “normal” kids who are friends with parents of kids with special needs often say things like “Wow! How do you do it? I wouldn’t be able to handle everything---you guys are amazing!” (Well, thank you very much.) But there’s no special manual, no magical positive attitude serum, no guide to embodying strength and serenity . . . people just do what they have to do. You rise to the occasion, and embrace your sense of humor (or grow a new one). You come to love your life, and it’s hard to imagine it a different way (although when you try, it may sting a little). But things weren’t always like this . . . at first, you ricocheted around the stages of grief, and it was hard to see the sun through the clouds. And forget the damn tulips or windmills. In the beginning you’re stuck in Amsterdam International Airport. And no one ever talks about how much it sucks.
You briskly walk off of the plane into the airport thinking “There-must-be-a-way-to-fix-this-please-please-don’t-make-me-have-to-stay-here-THIS-ISN’T-WHAT-I-WANTED-please-just-take-it-back”. The airport is covered with signs in Dutch that don’t help, and several well-meaning airport professionals try to calm you into realizing that you are here (oh, and since they’re shutting down the airport today, you can never leave. Never never. This is your new reality.). Their tone and smiles are reassuring, and for a moment you feel a little bit more calm . . . but the pit in your stomach doesn’t leave and a new wave of panic isn’t far off.
(Although you don’t know it yet, this will become a pattern. You will often come to a place of almost acceptance, only to quickly re-become devastated or infuriated about this goddamned unfair deviation to Holland. At first this will happen several times a day, but it will taper to several times a week, and then only occasionally.)
A flash of realization---your family and friends are waiting. Some in Italy, some back home . . . all wanting to hear about your arrival in Rome. Now what is there to say? And how do you say it? You settle on leaving an outgoing voicemail that says “We’ve arrived, the flight was fine, more news to come” because really, what else can you say? You’re not even sure what to tell yourself about Holland, let alone your loved ones.
(Although you don’t know it yet, this will become a pattern. How can you talk to people about Holland? If they sweetly offer reassurances, it’s hard to find comfort in them . . . they’ve never been to Holland, after all.
And their attempts at sympathy? While genuine, you don’t need their pity . . . their pity says “Wow, things must really suck for you” . . . and when you’re just trying to hold yourself together, that doesn’t help. When you hear someone else say that things are bad, it’s hard to maintain your denial, to keep up your everything-is-just-fine-thank-you-very-much outer shell. Pity hits too close to home, and you can’t admit to yourself how terrible it feels to be stuck in Holland, because then you will undoubtedly collapse into a pile of raw, wailing agony. So you have to deflect and hold yourself together . . . deflect and hold yourself together.)
You sneak sideways glances at your travel companion, who also was ready for Italy. You have no idea how (s)he’s handling this massive change in plans, and can’t bring yourself to ask. You think “Please, please don’t leave me here. Stay with me. We can find the right things to say to each other, I think. Maybe we can have a good life here.” But the terror of a mutual breakdown, of admitting that you’re deep in a pit of raw misery, of saying it out loud and thereby making it reality, is too strong. So you say nothing.
(Although you don’t know it yet, this may become a pattern. It will get easier with practice, but it will always be difficult to talk with your partner about your residency in Holland. Your emotions won’t often line up---you’ll be accepting things and trying to build a home just as he starts clamoring for appointments with more diplomats who may be able to “fix” it all. And then you’ll switch, you moving into anger and him into acceptance. You will be afraid of sharing your depression, because it might be contagious---how can you share all of the things you hate about Holland without worrying that you’re just showing your partner all of the reasons that he should sink into depression, too?)
And what you keep thinking but can’t bring yourself to say aloud is that you would give anything to go back in time a few months. You wish you never bought the tickets. It seems that no traveler is ever supposed to say “I wish I never even got on the plane. I just want to be back at home.” But it’s true, and it makes you feel terrible about yourself, which is just fantastic . . . a giant dose of guilt is just what a terrified lonely lost tourist needs.
Although you don’t know it yet, this is the part that will fade. After you’re ready, and get out of the airport, you will get to know Holland and you won’t regret the fact that you have traveled. Oh, you will long for Italy from time to time, and want to rage against the unfairness from time to time, but you will get past the little voice that once said “Take this back from me. I don’t want this trip at all.”
Each traveler has to find their own way out of the airport. Some people navigate through the corridors in a pretty direct path (the corridors can lead right in a row: Denial to Anger to Bargaining to Depression to Acceptance). More commonly, you shuffle and wind around . . . leaving the Depression hallway to find yourself somehow back in Anger again. You may be here for months.
But you will leave the airport. You will.
And as you learn more about Holland, and see how much it has to offer, you will grow to love it.
And it will change who you are, for the better.
? Dana Nieder 10/2010 All Rights Reserved
__________________
In the special needs world, there is a poem (essay? whatever.) called "Welcome to Holland." It is supposed to explain what it's like to have a child with special needs. It's short and sweet.
It skips everything.
While "Welcome to Holland" has a place, I used to hate it. It skipped over all of the agony of having a child with special needs and went right to the happy ending.
The raw, painful, confusing entry into Holland was just glossed over. And considering the fact that this little poem is so often passed along to new-moms-of-kids-with-special-needs, it seems unfair to just hand them a little story about getting new guidebooks and windmills and tulips.
If I had written "Welcome to Holland", I would have included the terrible entry time. And it would sound like this:
Amsterdam International
Parents of “normal” kids who are friends with parents of kids with special needs often say things like “Wow! How do you do it? I wouldn’t be able to handle everything---you guys are amazing!” (Well, thank you very much.) But there’s no special manual, no magical positive attitude serum, no guide to embodying strength and serenity . . . people just do what they have to do. You rise to the occasion, and embrace your sense of humor (or grow a new one). You come to love your life, and it’s hard to imagine it a different way (although when you try, it may sting a little). But things weren’t always like this . . . at first, you ricocheted around the stages of grief, and it was hard to see the sun through the clouds. And forget the damn tulips or windmills. In the beginning you’re stuck in Amsterdam International Airport. And no one ever talks about how much it sucks.
You briskly walk off of the plane into the airport thinking “There-must-be-a-way-to-fix-this-please-please-don’t-make-me-have-to-stay-here-THIS-ISN’T-WHAT-I-WANTED-please-just-take-it-back”. The airport is covered with signs in Dutch that don’t help, and several well-meaning airport professionals try to calm you into realizing that you are here (oh, and since they’re shutting down the airport today, you can never leave. Never never. This is your new reality.). Their tone and smiles are reassuring, and for a moment you feel a little bit more calm . . . but the pit in your stomach doesn’t leave and a new wave of panic isn’t far off.
(Although you don’t know it yet, this will become a pattern. You will often come to a place of almost acceptance, only to quickly re-become devastated or infuriated about this goddamned unfair deviation to Holland. At first this will happen several times a day, but it will taper to several times a week, and then only occasionally.)
A flash of realization---your family and friends are waiting. Some in Italy, some back home . . . all wanting to hear about your arrival in Rome. Now what is there to say? And how do you say it? You settle on leaving an outgoing voicemail that says “We’ve arrived, the flight was fine, more news to come” because really, what else can you say? You’re not even sure what to tell yourself about Holland, let alone your loved ones.
(Although you don’t know it yet, this will become a pattern. How can you talk to people about Holland? If they sweetly offer reassurances, it’s hard to find comfort in them . . . they’ve never been to Holland, after all.
And their attempts at sympathy? While genuine, you don’t need their pity . . . their pity says “Wow, things must really suck for you” . . . and when you’re just trying to hold yourself together, that doesn’t help. When you hear someone else say that things are bad, it’s hard to maintain your denial, to keep up your everything-is-just-fine-thank-you-very-much outer shell. Pity hits too close to home, and you can’t admit to yourself how terrible it feels to be stuck in Holland, because then you will undoubtedly collapse into a pile of raw, wailing agony. So you have to deflect and hold yourself together . . . deflect and hold yourself together.)
You sneak sideways glances at your travel companion, who also was ready for Italy. You have no idea how (s)he’s handling this massive change in plans, and can’t bring yourself to ask. You think “Please, please don’t leave me here. Stay with me. We can find the right things to say to each other, I think. Maybe we can have a good life here.” But the terror of a mutual breakdown, of admitting that you’re deep in a pit of raw misery, of saying it out loud and thereby making it reality, is too strong. So you say nothing.
(Although you don’t know it yet, this may become a pattern. It will get easier with practice, but it will always be difficult to talk with your partner about your residency in Holland. Your emotions won’t often line up---you’ll be accepting things and trying to build a home just as he starts clamoring for appointments with more diplomats who may be able to “fix” it all. And then you’ll switch, you moving into anger and him into acceptance. You will be afraid of sharing your depression, because it might be contagious---how can you share all of the things you hate about Holland without worrying that you’re just showing your partner all of the reasons that he should sink into depression, too?)
And what you keep thinking but can’t bring yourself to say aloud is that you would give anything to go back in time a few months. You wish you never bought the tickets. It seems that no traveler is ever supposed to say “I wish I never even got on the plane. I just want to be back at home.” But it’s true, and it makes you feel terrible about yourself, which is just fantastic . . . a giant dose of guilt is just what a terrified lonely lost tourist needs.
Although you don’t know it yet, this is the part that will fade. After you’re ready, and get out of the airport, you will get to know Holland and you won’t regret the fact that you have traveled. Oh, you will long for Italy from time to time, and want to rage against the unfairness from time to time, but you will get past the little voice that once said “Take this back from me. I don’t want this trip at all.”
Each traveler has to find their own way out of the airport. Some people navigate through the corridors in a pretty direct path (the corridors can lead right in a row: Denial to Anger to Bargaining to Depression to Acceptance). More commonly, you shuffle and wind around . . . leaving the Depression hallway to find yourself somehow back in Anger again. You may be here for months.
But you will leave the airport. You will.
And as you learn more about Holland, and see how much it has to offer, you will grow to love it.
And it will change who you are, for the better.
? Dana Nieder 10/2010 All Rights Reserved
carang
Registered User
i am sure that this is all true (i can only guess, as i have never been to holland). what i liked about the first piece was that eventually, you will grow to accept that you are in holland, and while it wasn't the trip to rome that you had planned and hoped for, it doesn't mean that it is all bad. there ARE good things about holland, too. it just might take a while to accept that rome is not in your future.
I don't think having a disabled child is "selfish." So long as you love and care for your own child, how is that selfish at all? In fact, it's very loving -- it takes so much more time and care to raise a disabled child.
Why are you equating all disabled children with orphans and starving children? Those are children who have been abandoned and neglected, not children born with a disability.
We have relatives with a disabled child. He was raised and loved the same as his "normal" siblings. He may never live life like a "normal" adult, but he is a joy and doing well at a special school. Later, he will be placed in a program to find simple jobs for people with disabilities. Why should he be denied a life just because he's different?
I also have a friend who uses a wheelchair. I'm awfully glad his parents didn't terminate him just because he's disabled.
Of course, it's everyone's choice. But it's really cruel to pick on the parents of the disabled for being selfish.
thundacatchergo
Registered User
children grow up to be adults. who will take care of the ones that needs assistance when you are no longer around?
my cousin with DS has a whole trust fund to do the "taking care of" job when his parents are gone....though he does have a sibling, their relationship is not so great because the "normal" brother didn't have a "normal" childhood and blames his older brother for it. perhaps a reflection of the parenting skill, or lack off, but all the more sad for both boys both involved.
I am astounded at the heartlessness of some of these responses.
So all parents of disabled babies should abort because they may or may not end up being a burden to society 20, 30 years down the line?
First of all, none of us can predict who will be a burden to society.
You can be born severely disabled and turn into Stephen Hawking.
You can be born perfectly healthy and turn into a criminal who gets a life sentence and costs tax-payers tons of money in prison costs.
So what if some people need more help than others? A civilized society is one that takes care of its least fortunate. It's not like societies centuries ago, when lepers were left to die in colonies, and the elderly were told to kill themselves because they were no longer "useful."
Surely, we live in more civilized times.
To answer Wasabibunny's original question: Why do some parents decide to keep a disabled child?
Because some parents look at a disabled child and a normal child and see two human beings.
I am not religious or a "pro-lifer". But I knew I would feel wrong aborting the child kicking in my belly even if -- God forbid -- she was severely disabled. I would still see her as my beloved child, and it would be my right to do so.
Some of the arguments above would make sense -- in a cold, logical way -- if we were discussing robots or farm animals -- if you could just "get rid of" elements that were not perfectly efficient and "useful." But these are human beings we're talking about.
PS. Wasabitbunny -- I have no idea why you brought up rape victims. Of course they have a right to abort, the same way the parents of disabled fetuses have the right to abort, the way that anyone has to right to abort. Nobody is forcing mothers to have children they don't want to. People are just saying that parents have the equal right to keep a child, too, if they wish.
As someone who once worked in a rape crisis center, I have NO IDEA why you would decide to pick on sexual assault victims here, unless your aim is to offend as many people as possible.
So all parents of disabled babies should abort because they may or may not end up being a burden to society 20, 30 years down the line?
First of all, none of us can predict who will be a burden to society.
You can be born severely disabled and turn into Stephen Hawking.
You can be born perfectly healthy and turn into a criminal who gets a life sentence and costs tax-payers tons of money in prison costs.
So what if some people need more help than others? A civilized society is one that takes care of its least fortunate. It's not like societies centuries ago, when lepers were left to die in colonies, and the elderly were told to kill themselves because they were no longer "useful."
Surely, we live in more civilized times.
To answer Wasabibunny's original question: Why do some parents decide to keep a disabled child?
Because some parents look at a disabled child and a normal child and see two human beings.
I am not religious or a "pro-lifer". But I knew I would feel wrong aborting the child kicking in my belly even if -- God forbid -- she was severely disabled. I would still see her as my beloved child, and it would be my right to do so.
Some of the arguments above would make sense -- in a cold, logical way -- if we were discussing robots or farm animals -- if you could just "get rid of" elements that were not perfectly efficient and "useful." But these are human beings we're talking about.
PS. Wasabitbunny -- I have no idea why you brought up rape victims. Of course they have a right to abort, the same way the parents of disabled fetuses have the right to abort, the way that anyone has to right to abort. Nobody is forcing mothers to have children they don't want to. People are just saying that parents have the equal right to keep a child, too, if they wish.
As someone who once worked in a rape crisis center, I have NO IDEA why you would decide to pick on sexual assault victims here, unless your aim is to offend as many people as possible.
Last edited:
nicolejoy
Registered User
Of course, and I do like the "Welcome to Holland" piece as well - but there is such a rawness and craziness in coming to accept that life had a different plan, the second piece captures that well. I find "Welcome to Holland" captures the end state, but "Amsterdam International" captures the journey to that end state.
I always knew that things would be ok in the end, even if my baby hadn't survived, we would have lived through it and we would have lived after it. We would have grieved and then "healed" and gone on to still have wonderful times after it all. I personally didn't need to be reminded of that. But for me, during the journey, to have that reminder that other people were going through the same thing really helped in a way that "it will all be fine and dandy" didn't.
I love both of my girls, and sometimes I still wish that we didn't have to worry about all the medical stuff. We're still in many ways learning about "Holland" or whatever you want to call it. Some days it still sucks. But most days, it's just our every day life, and all in all, it's a fantastic life
carang
Registered User
stephen hawking was not born disabled. he has ALS. most people diagnosed with this terrifying disease (i have known two people with it) die within a year or two. somehow, stephen hawking has survived 40+ years with it.
and a burden to society he is NOT. even though he cannot talk, feed himself, move or even go to the toilet.
and a burden to society he is NOT. even though he cannot talk, feed himself, move or even go to the toilet.
erina320
Registered User
I don't think Gracey was saying he is a burden to society. Quite the contrary I think she was using him as an example how people with disabilities can be an invaluable asset to the rest of society.
carang
Registered User
oh, yes, i realise that... i was trying to highlight it to wasabibunny who thinks that anyone disabled is a burden. sorry if i wasn't clear. (i also wanted to highlight the fact that not all "disabled" people are born that way. ALS is a truly terrifying, horrible disease. one i would not wish on my worst enemy.)
wasabibunny
Registered User
Carang. I do not think everyone disabled is a burden. First I clarified I was talking about severe disability. Secondly I think people who exist and are disables in this world deserves social assistant and their rights protected. Maybe I am expecting too much for some to see the distinctions I am making. And I am tired of clarifying.
carang
Registered User
don't bother clarifying any further. you will NEVER "bring me round" to your way of thinking. i really don't think i would ever want to think that way. it seems very cold-hearted to reduce everything to statistics and deciding who contributes more to society (in your eyes) and who does not.
and to clarify, i do not mean that in a mean and nasty way... we will have to agree to disagree and leave it at that.
and to clarify, i do not mean that in a mean and nasty way... we will have to agree to disagree and leave it at that.
Last edited:
erina320
Registered User
Some would argue that a baby already several months along would already be "in existence", but that is a different argument altogether.
I read this article today. I thought I post it here - the positivity of this woman really brought asmile to my face.
http://www.guardian.co.uk/lifeandstyle/2011/nov/23/dwarfism-mum
http://www.guardian.co.uk/lifeandstyle/2011/nov/23/dwarfism-mum