This is something I had to share...

Discussion in 'disABILITIES Community Board' started by hookedup, Apr 23, 2007.

  1. hookedup

    hookedup <font color=navy>radsmom <font color=blue>(Mom to

    Jul 10, 2002
    I have not posted a lot lately but I still love to checking on the posts here daily. It is one of the few places that I can relate to people who are dealing with the things that I deal with in my life. My wonderful ds will be 7 in a couple of weeks and he is an Aspergers kid.
    I have several close friends in the real world - other stay at home moms who I love dearly and our kids have grown up together. These gals are wonderful but our worlds have become very different as our kids have gotten older. We all scrapbook together once a month and sit and talk a lot about our kids and school, etc. That is when I really feel left out. They have no clue what my world is like and the truth is sometimes I am very envious of them.
    Last week one of my ds' doctors gave me a copy of this - I had never seen it before and I just loved it...

    By Emily Perl Kingsley

    I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...

    When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

    After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

    “Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy.”

    But there's been a change in the flight plan. They've landed in Holland and there you must stay.

    The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

    So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

    It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills...and Holland has tulips. Holland even has Rembrandts.

    But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, “Yes, that's where I was supposed to go. That's what I had planned.” And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very, very significant loss.

    But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

    c1987 by Emily Perl Kingsley. All rights reserved

    Well, just thought I'd share!
  2. SueM in MN

    SueM in MN combining the teacups with a roller coaster Moderator

    Aug 23, 1999
    Thanks for sharing.
    Here's a bit about the story behind the Holland article and the woman who wrote it, Emily Perl Kingsley.

    Like many other expectant parents at that time, they had taken childbirth and parenting classes and done a lot of reading and planning about how the birth of their child would go and how they would raise the new baby. (Their planned "trip to Italy").
    When their son , Jason, was born, it was discovered that he had Down Syndrome. Now people often know that information way before the birth, but when Jason was born, it usually came as a big shock at the delivery.
    The advice Jason's parents got was the same advice that most parents got in their situation at that time ...
    "your child will not be normal" ....
    "he'll never be able to learn anything".....
    "don't even bring him home"....
    "put him directly into an institution"....
    "tell people the baby died and go on with your life."

    They chose to accept their child and his diagnosis, but not his PROGNOSIS.
    Mrs. Kingsley did volunteer work, speaking with other parents after the birth of their children with Down Syndrome. The Holland story was a way to convince these new parents that they could take their babies with Down Syndrome home, raise them and prove the doctors wrong. In order to do this, the parents would need to learn new languages (like speech therapy, OT, PT, augmentative communication, etc, etc, etc) and some didn't think they could do it. Those people who were expecting uneventful deliveries of healthy babies were in shock and mourning for what they expected and the last few parts of the story speak to those feelings.

    At the time Jason Kingsley was born, babies with Down Syndrome were generally put into institutions, not educated at all, and not welcome in 'regular schools'. I know people who had that happen in their family; one woman was told her younger brother had died at birth. When her parents were elderly, she found out her brother had lived his whole life in an institution in a closeby town. That was what was "recommended" in those days.

    Jason Kingsley's parents did NOT accept the advice and prognosis they were given. They did NOT accept that he would not learn. Because of their advocacy, he was mainstreamed in regular classes and graduated high school with a full diploma (not a special education diploma) and also graduated post secondary education.
    His mother was a writer on Sesame Street and Jason appeared on that show as a regular for many years from the time he was 18 months old. He wasn't highlighted as a child with Down Syndrome, he was just another child on the show. Sesame Street included kids (and adults) with CP, deafness, speaking with sign language, etc. in a very matter of fact way - they were just there, interacting with the characters in the same way as the other people (although some of them signed, some walked with crutches or used wheelchairs).

    In 1994, as young adults, Jason Kingsley and his friend Mitchell Levitz wrote a best selling book about growing up with Down Syndrome. (Pretty good for 2 guys who were not supposed to be able to learn anything). Their book has recently been republished in a second edition, according to this article.
  3. Avatar


    to hide this advert.
  4. freckles and boo

    freckles and boo <font color=blue>I occasionally lurk on the UK boa

    May 5, 2006
    I have never seen this before. It made me cry (and not much does!). Thanks.
  5. minkydog

    minkydog DIS Cast Member

    Dec 8, 2004
    OP, I can really identify with you:hug: My son Christian is very mentally handicapped and autistic. Our friends love him,but they don't understand how much our lives are different from theirs. It's hard to entertain at home because Christian needs so much attention. It's hard to visit friends because we have to watch him constantly to make sure he doen't run out the door, or fall down a flight of stairs,or eat their dog food, or throw spoons in the toilet. It's like taking a 100-lb 1yr old and not everyone is so receptive. Therefore, our world has slowly shrunk to just school and our families.

    I try not to share my worries with friends because they really cannot relate--persistent diaper rash in a 12yo, are you kidding? We do have a few friends who also have severely handicapped kids and they DO understand. We can laugh about the weird stuff and really connect. We don't have to explain why our child wears a towel on his head or communicates with shrieks and hoots.

    The thing that helped me the most was joining a support group for parents of severely handicapped children. The thing we all had in common was that whatever the specific disability, all of our children would need total care & supervision and eventual placement. We could get together and talk about anything and not have to explain. If there is a group near you for parents of children with autism or Aspergers, perhaps you could check them out.
  6. kayc86

    kayc86 Mouseketeer

    Nov 9, 2006
    This is one of my favorites!!i have a copy of this hanging up in out house.Thanks for sharing,i havent read it in awhile.
  7. onesadduck

    onesadduck Not so sad right now

    Mar 16, 2007
    I've read that poem before. At my little sister funeral and memorial services, my mother quoted a piece of it, said it was innacurate. Raising my little sister was more like getting dropped off in Morroco. Very fast-paced, confusing, but more interesting and a great experience. Then again, my sister had a rare disorder with many medical, intellectual and physical dissabilities, and her abilities and treatements had huge range from day to day. Holland seems a little boring in comparison (no offense to the Dutch).

    Still, thank you for sharing. It is a lovely poem.

Share This Page