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Welcome to Holland poem.......Coping with diagnosis

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bumblebee


Welcome to Holland poem.......Coping with diagnosis

Fri 4 Sep 2009 12:08pm

 

I was shown this poem a while ago and it helped me look at my children's diagnosis in a very different light. I thought it would be good to share it on this forum and hopefully it will inspire other people too....It is also a good way of helping family members understand some of what we go through as parents during such a confusing and emotional time..... 

"Welcome to Holland"

By Emily Perl Kingsley, 1987.  All rights reserved.

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.

--
Claire

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  • JosieB's picture

    Hi Claire

    That's one of my favourites that I e-mail to all my fb autiemums (as they like to be called).  Another one is Ellen Notbohm's "Ten Things".  10 things By Ellen Notbohm

    Author's note: When my article Ten Things Every Child with Autism
    Wishes You Knew was first published in November 2004, I could scarcely
    have imagined the response. Reader after reader wrote to tell me that
    the piece should be required reading for all social service workers,
    teachers and relatives of children with autism. "Just what my daughter
    would say if she could," said one mother. "How I wish I had read this
    five years ago. It took my husband and I such a long time to 'learn'
    these things," said another. As the responses mounted, I decided that
    the resonance was coming from the fact that the piece spoke with a
    child's voice, a voice not heard often enough. There is great need -
    and I hope, great willingness – to understand the world as special
    needs children experience it. So the voice of our child returns now to
    tell us what children with autism wish their teachers knew.


    1. Behaviour is communication. All behaviour occurs for a reason.
    It tells you, even when my words can't, how I perceive what is
    happening around me. Negative behaviour interferes with my learning
    process. But merely interrupting these behaviours is not enough; teach
    me to exchange these behaviours with proper alternatives so that real
    learning can flow.

    Start by believing this: I truly do want to learn to interact
    appropriately. No child wants the negative feedback we get from "bad"
    behaviour. Negative behaviour usually means I am overwhelmed by
    disordered sensory systems, cannot communicate my wants or needs or
    don't understand what is expected of me. Look beyond the behaviour to
    find the source of my resistance. Keep notes as to what happened
    immediately before the behaviour: people involved, time of day,
    activities, settings. Over time, a pattern may emerge.


    2. Never assume anything. Without factual backup, an assumption is
    only a guess. I may not know or understand the rules. I may have heard
    the instructions but not understood them. Maybe I knew it yesterday but
    can't retrieve it today. Ask yourself: Are you sure I really know how
    to do what is being asked of me? If I suddenly need to run to the
    bathroom every time I'm asked to do a math sheet, maybe I don't know
    how or fear my effort will not be good enough. Stick with me through
    enough repetitions of the task to where I feel competent. I may need
    more practice to master tasks than other kids. Are you sure I actually
    know the rules? Do I understand the reason for the rule safety,
    economy, and health?

    Am I breaking the rule because there is an underlying cause? Maybe I
    pinched a snack out of my lunch bag early because I was worried about
    finishing my science project, didn't eat breakfast and am now famished.


    3. Look for sensory issues first. A lot of my resistant behaviours
    come from sensory discomfort. One example is fluorescent lighting,
    which has been shown over and over again to be a major problem for
    children like me. The hum it produces is very disturbing to my
    hypersensitive hearing, and the pulsing nature of the light can distort
    my visual perception, making objects in the room appear to be in
    constant movement. An incandescent lamp on my desk will reduce the
    flickering, as will the new, natural light tubes. Or maybe I need to
    sit closer to you; I don't understand what you are saying because there
    are too many noises "in between" - that lawnmower outside the window,
    Jasmine whispering to Tanya, chairs scraping, pencil sharpener
    grinding.

    Ask the school occupational therapist for sensory-friendly ideas
    for the classroom. It's actually good for all kids, not just me.


    4. Provide me a break to allow for self-regulation before I need
    it. A quiet, carpeted corner of the room with some pillows, books and
    headphones allows me a place to go to re-group when I feel overwhelmed,
    but isn't so far physically removed that I won't be able to rejoin the
    activity flow of the classroom smoothly.


    5. Tell me what you want me to do in the positive rather than the
    imperative. "You left a mess by the sink!" is merely a statement of
    fact to me. I'm not able to infer that what you really mean is "Please
    rinse out your paint cup and put the paper towels in the trash." Don't
    make me guess or have to figure out what I should do.


    6. Keep your expectations reasonable. That all-school assembly with
    hundreds of kids packed into bleachers and some guy droning on about
    the candy sale is uncomfortable and meaningless to me. Maybe I'd be
    better off helping the school secretary put together the newsletter.


    7. Help me transition between activities. It takes me a little
    longer to motor plan moving from one activity to the next. Give me a
    five-minute warning and a two-minute warning before an activity changes
    - and build a few extra minutes in on your end to compensate. A simple
    clock face or timer on my desk gives me a visual cue as to the time of
    the next transition and helps me handle it more independently.


    8. Don't make a bad situation worse. I know that even though you
    are a mature adult, you can sometimes make bad decisions in the heat of
    the moment. I truly don't mean to melt down, show anger or otherwise
    disrupt your classroom. You can help me get over it more quickly by not
    responding with inflammatory behaviour of your own. Beware of these
    responses that prolong rather than resolve a crisis:
    - Raising pitch or volume of your voice. I hear the yelling and shrieking, but not the words.
    - Mocking or mimicking me. Sarcasm, insults or name-calling will not embarrass me out of the behaviour.
    - Making unsubstantiated accusations
    invoking a double standard
    comparing me to a sibling or other student
    bringing up previous or unrelated events
    Lumping me into a general category "kids like you are all the same"


    9. Criticize gently. Be honest - how good are you at accepting
    "constructive" criticism? The maturity and self-confidence to be able
    to do that may be light years beyond my abilities right now. Should you
    never correct me? Of course not. But do it kindly, so that I actually
    hear you. Please! Never, ever try to impose discipline or correction
    when I am angry, distraught, over stimulated, shut down, anxious or
    otherwise emotionally unable to interact with you.

    Again, remember that I will react as much, if not more, to the
    qualities of your voice than to the actual words. I will hear the
    shouting and the annoyance, but I will not understand the words and
    therefore will not be able to figure out what I did wrong. Speak in low
    tones and lower your body as well, so that you are communicating on my
    level rather than towering over me.

    Help me understand the inappropriate behaviour in a supportive,
    problem-solving way rather than punishing or scolding me. Help me pin
    down the feelings that triggered the behaviour. I may say I was angry
    but maybe I was afraid, frustrated, sad or jealous. Probe beyond my
    first response.

    Practice or role-play - show me-a better way to handle the
    situation next time. A storyboard, photo essay or social story helps.
    Expect to role-play lots over time. There are no one-time fixes. And
    when I do get it right "next time," tell me right away. It helps me if
    you yourself are modelling proper behaviour for responding to
    criticism.


    10. Offer real choices - and only real choices. Don't offer me a
    choice or ask a "Do you want...?" question unless are willing to accept
    no for an answer. "No" may be my honest answer to "Do you want to read
    out loud now?" or "Would you like to share paints with William?" It's
    hard for me to trust you when choices are not really choices at all.
    You take for granted the amazing number of choices you have on a
    daily basis. You constantly choose one option over others knowing that
    both having choices and being able to choose provides you control over
    your life and future. For me, choices are much more limited, which is
    why it can be harder to feel confident about myself. Providing me with
    frequent choices helps me become more actively engaged in everyday
    life.

    Whenever possible, offer a choice within a 'have-to'. Rather than
    saying: "Write your name and the date on the top of the page," say:
    "Would you like to write your name first, or would you like to write
    the date first?" or "Which would you like to write first, letters or
    numbers?” Follow by showing me: "See how Jason is writing his name on
    his paper?"

    Giving me choices helps me learn appropriate behaviour, but I also
    need to understand that there will be times when you can't. When this
    happens, I won't get as frustrated if I understand why: "I can't give
    you a choice in this situation because it is dangerous.

    You might get hurt." "I can't give you that choice because it
    would be bad for Danny" have negative effect on another child. "I give
    you lots of choices but this time it needs to be an adult choice."
    The last word: believe. That car guy Henry Ford said, "Whether you
    think you can or whether you think you can't, you are usually right."

    Believe that you can make a difference for me. It requires
    accommodation and adaptation, but autism is an open-ended disability.
    There are no inherent upper limits on achievement. I can sense far more
    than I can communicate, and the number one thing I can sense is whether
    or not you think I "can do it." Expect more and you will get more.
    Encourage me to be everything I can be, so that I can stay the course
    long after I've left your classroom.

     

    Ellen Notbohm is author of the book Ten Things Every Child with
    Autism Wishes You Knew, winner of parenting Media's Greatest Products
    of 2005 Award, and co-author of 1001 Great Ideas for Teaching and
    Raising Children with Autism Spectrum Disorders, winner of Learning
    Magazine's 2006 Teacher's Choice Award.

     Josie - Community Champion

    Josie - Community Champion
  • jojo123's picture

    Add me on facebook?!! Plzzzz lol Smile

     

    Jo

  • JosieB's picture

    Hi Jo

    You will need to tell us your name on facebook!!!    Wink

    Josie - Community Champion

    Josie - Community Champion
  • jojo123's picture

    does it not say on my profile here? i'll pm you if i can Smile

     

    jo

  • bumblebee's picture

    Thanks Josie....

    10 things is the best book ever and a great one for people starting down the autism road!!.... I'll look for you on facebook Jo, did you mean your profile name is jojo123 on facebook too? Just to let you know that Elena - the community manager is also on facebook and a few other good 'autism contacts'.... 

    Claire - Community Champion

    Claire
  • Snowdrop's picture

    Snowdrop

    Thats a lovely poem Claire, I found it quite emotional reading too, but in a good way!

    The 10 things book was the 1st one I read which you gave me at MAGIC, was very helpful, best one I've read so far & there has been a few already.

    Tracy x 

    Tracy - Retired Community Champion

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