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Having an amnio test ruined my life

  1. #57
    carang's Avatar
    carang is offline Registered User
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    Lali, thank you so much for sharing that.... i thought it was extremely thought provoking and a wonderful analogy!
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  2. #58
    howardcoombs is offline Registered User
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    I have to stick my 3c in here. I've been to Italy, been to Holland, I'm raising 3 "normal" kids but I've been around plenty of special needs kids.

    IMO, the analogy is completely off base.
    Having a special child is like ending up in China or India or Philippines. Sometimes things work and sometimes they dont. Electricity, water, phones are not guaranteed to be on all the time. If you want to go from point A to point B you may end up with a Taxi, Bus, motorcycle, Bus, back of a truck or on the back of an animal but no guarantee you'll actually get there today. If you ask someone for directions you may get an answer or you may get a blank stare and sometimes you get both; the answer with a blank stare, dont ever assume the answer you get will be the right answer. Some people think its a great place with fantastic people and food and culture; if you can understand its people and inner beauty and give it a good chance, you could fall in love with the place; alas there are many others who cannot stand the place and would not even want to come near it.
    Many of these people have never been there, have never studied the place and they want to stay in their ignorance and prejudice and stay completely away from it.

    For the record, I love China, India as well as Philippines. If money was no object and I had plenty of time, I would rather spend my time in Italy or Holland but being where I am today, I've grown to love and appreciate China, India as well as Philippines and the people that make up the place.
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  3. #59
    Lali07 is offline Registered User
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    Just have to clarify, I didn't write it.. The writer, Emily Kingsley is mother to Jason, her son who has DS..

    I have also been to Italy and Holland, and loved both. I have no idea how I would feel if I were put in Emily's shoes, but I love her words and think they bring a nice perspective to a situation which no doubt brings very complicated emotions.

    All I can think of is how much I love my son and would love him the same no matter his abilities..

  4. #60
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    thanks, lali. i know you didn't write it (you made that very clear at the beginning of your post). i loved the words. it was from a source i never would have read or even known about.... so, thank you for sharing it.

  5. #61
    Lali07 is offline Registered User
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    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/...g-up-with.html

  6. #62
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    Here is a more "raw" version of the "Welcome to Holland" story: from http://niederfamily.blogspot.com/201...rnational.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
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  7. #63
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    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.

  8. #64
    Gracey is offline Registered User
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    Quote Originally Posted by wasabibunny View Post
    I agree with nicolejoy but struggle to see why anyone would want to keep a disabled child knowingly. It's a burden on society and somewhat of a selfish choice. There are already so many orphans and disabled individuals and starving children.
    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.
    shwetakhanna likes this.

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