Autism fact: "People with autism are most likely to fulfill their potential with specialized support & a knowledgeable, understanding public."

Competition

Comment on this post to win six months of RJ Scott e-books starting from A Reason To Stay out 11 April. Closing date 8th April 15:00 GMT.

My autism post

One of the hardest things about having a child with autism, or indeed any additional needs child, is coming to terms with expectation against reality. When you are pregnant you have all these things that are in your mind, about what you will do with your child, what your child may become and how you will help your child get to that singular place where they are happy.

One of the things that found in among my extensive research when the A word was given to us was the following. It was useful not just for us as parents but as a way of explaining to others just what was going through my head. 

It's beautiful.

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Welcome to Holland by Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. 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.

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There are many other authors taking part in the Autism blog hop... Go see the master post HERE for daily links to competitions and articles.


66 comments:

  1. This is the 2nd year we've celebrated Autism month together. You have spoken about your son bringing so much awareness to this cause. Thank you from me and my niece and nephew ( who are autistic ). Kendra

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    1. You are very welcome Kendra, and thank YOU for commenting... HUGS XXX

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  2. I always learn so much on this hop!

    Trix, vitajex(at)aol(dot)com

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    1. Hey Trix... thank you HUGS XXX

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  3. We took our detour to Holland back in 1997 when our oldest daughter was born. She had juvenile malignant osteopetrosis, which is even worse than it sounds. It took almost a year to get her diagnosis. She had a compromised immune system, was blind and endured two bone marrow transplants before the age of 5. We were so blessed to have her in our lives. She taught me so much about handling the curves that life throws at us and finding joy in the moment. She moved on to a better existence 12 years ago but not a day goes by that I don't miss her and think of her. Our family is better for our detour to Holland.

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    1. Hugs you hard Lisa G...

      Me xxxxxxxx

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  4. Great article and wonderful way to look at it. Good luck!

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  5. Thank you for such a wonderful opening to your blog hop. It's wonderful to finally know we also had landed in Holland. I have two boys in the spectrum, a 13yr old with Autism, and an 11 year old with ADHD. It has taken years and years to get a diagnosis on my boys, and a relief to finally know that they aren't naughty, lazy, uncooperative, then just come from, "Holland".

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    1. hugs you hard... it's not an easy journey... xxxxx

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  6. Thank you for bring more attention to Autism.I am a Teachers Aid in an Elementary School and I see The faces of Autism every day. Some times I think that if every child had a touch of Autism the world would be a better place .Don't get me wrong families,parents and children have a lot to deal with but children with Autism are the sweetest,most sensitive,compassionate and loving in their own way that you ever met and I look forward to going to work ever day just to work and be in their presence. We should all look at the world and each other through their eyes.(havenfieldwood@yahoo.com)

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    1. absolutely agree... matt has an innocence that blows me away some times...

      XX

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  7. To me (being bipolar), it's like landing in Holland but everyone speaks a different language or dialect. Trying to communicate only works if everyone is trying. Those people that are just on a layover will never see the beauty and can make life dark and difficult for those that have made the commitment to live the best life we can.

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    1. Exactly! Totally agreed... hugs xxxx

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  8. Great article, it made very interesting reading.
    I know my friend stuggles a lot with there little boy. Awareness does help.

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    1. awareness is where it's at... :)
      x

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  9. What a great way to explain that while you had your plans all mapped out little beautiful surprises can change your plans and even make them better. Thank you for sharing this.

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    1. you are so welcome Cinders...

      XXXX

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  10. thanks for the great article. my dad who has now passed on had asperbergers. and he didn't get diagnosed until after my brother and i were diagnosed with learning disabilities. for years he thought he was stupid plain and simple till he saw things in my brother and i that made him wonder if he was maybe learning disabled as well. when he was told he had autism he was relieved that he KNEW what was finally wrong with him but he also mourned that when he was younger they didn't know what autism was and he was left feeling stupid for the first 40 years of his life. we all felt bad for him but did try to help him understand what having aspbergers ment

    parisfan_ca@yahoo.com

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    1. Hugs, i am so sorry... at least education is moving on... fingers crossed it just improves every day

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    2. you are so right about the education. i was recently diagnosed w/ ADD and there is a wonderful tv program called ADD and LOVING it that aired just when i got the diagnosis and it explained what ADD/ADHD is perfectly. i had a friend who watched it, she doesn't have ADD and when she was done watching it she came away with a better understanding of what i have to deal with every day

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  11. I have a copy of "Welcome to Holland" - the nurse gave it to me as we were leaving a doctor's office a decade ago. Over the years it has inspired me in different ways. But most often I reflect on it when I am sitting with a group of my girlfriends and they are blabbing on and on about their kids. Things like Little League, or school dances, or driver's licenses, and I am thinking silently, "F'ing Italy again."
    Sometimes Holland is a very lonely place.

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    1. Yeah. I know. I am not a generally jealous person, but when a friend with a son Matt's age tells me something it sometimes burns inside... :(

      Yeah, Holland can be a very lonely place... :(

      HUGS YOU HARD... and if you ever need to chat... you know where I am xxxx

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  12. I am on my own flight to Holland...coming to terms with the fact that I may never have children. It's not the way I planned my life but Holland looks like it may be a pretty cool place after all. A place where Pot is "legal" has to a pretty mellow place to be. :-D
    vinnie_dee@hotmail.com

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  13. Beautifully said. I have a child who is missing a leg. She played basket ball and made the varsity team.

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    1. That is awesome... you must be proud... RJ XXXX

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  14. That's an amazing description. I haven't been there, so I can only learn by reading and I appreciate your willingness to share this. I have children and a grandchild, by the luck of the Irish they appear to be a trip to Italy. Appear because they are my progeny and that is a whole different load of crazy. I never thought much about how other parents feel or cope before I started reading your blog and Amber Kell's blog. Strange how this genre includes so much more than expected. ;)

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    1. It is weird how MM has become so much more as a community... RJ XXXX

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  15. Thanks RJ for making us all aware. Whilst I havent been to Holland, my friend is there with her son so I see and hear of the issues she has speaking with the locals!

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    1. Holland is cool... it can also make you cry... :)

      RJ XXXX

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  16. Such a beautiful article, thanks so much for sharing it with me. You should celebrate what you have, not mourn what you don't. Thanks RJ!

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    1. It takes a while to get to that point though...

      RJ XXXX

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  17. Wonderful article. My work colleague's little boy is autistic but a gentler happier child I've yet to meet. I will definitely show his mum your blog post on Welcome to Holland I'm sure it will help the family enormously.

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    1. Welcome to Holland certainly allowed me to gain a little perspective... RJ X

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  18. What a great article. I always learn and get a better perspective on the whole thing. Thank you for the post and sharing.

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  19. This is a great article and is an inspiration to people going to Holland, but also way to explain to people going to Italy.

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    1. I think so as well... I love this story... RJ XXXXX

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  20. The absolute BEST explanation. Quite a few people end up in Holland. If you are there, be there.

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    1. For a lot more reasons than just Autism as well... :)

      RJ XXXX

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  21. Thank you for the wonderful article and for spreading awareness about Autism. There seems to be a lot of misconception out there about the issue and those who have to live with the disorder.

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    1. At the end of the day it is all about education, and if I can help in a small way then I feel good for doing my bit.,,, RJ XXXXX

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  22. As someone who has had the honour of working with youngsters on the spectrum and their families for many years, I can only commend you on your openess in terms of relating your personal experiences, and creating a fictional character too ( in the Texas family series). Looking forward to the rest of these blogs - and am heading off to a light it up blue function now :) The people you meet in Holland are some of the best around !

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    1. Thank you ... Max is so very much based on my own son Matt...

      Enjoy your function! RJ XXXXXX

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  23. My contact with "Holland" comes through my nephew who has fragileX syndrome. My sister in law would say the same, it can be a very lonely place and she works in mental health as well. I enjoy learning more about the condition in these blog hops. Thank you.

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    1. It is very lonely at times... Matt was tested for fragile x, doesn't it present itself like autism??

      RJ XXXX

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  24. Great blog post, RJ! And I loved the Autism Fact at the beginning of it, it's very real.

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    1. Thank you Trisha... hugs xxxxx

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  25. Wonderful blog post! I personally don't have experience with autism but so my of my on-line friends do and I've read things they post that have broke my heart and other times I couldn't stop smiling. Thanks to everyone in the hop for helping me understand a little bit better.

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    1. I am so pleased you are liking the blog hop rissa... xxxxx

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  26. Thanks for a wonderful post and for letting me be part of this hop.I am in awe of those with special needs children and the families that surround them with the love and support they need. My hat is off to you all for a wonderful job y'all are doing.

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    1. You're very welcome... thank you for joining in... :) XXXXXXXX

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  27. That's an amazing essay. It is a very big loss of dreams to realize that some things you will never be able to do with your child. They'll never be "normal". But that doesn't mean that you can't enjoy and love them for who they are.

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    1. Yes, that is what I take away from it all... HUGS :) XXXX

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  28. That's such a great and informative piece thanks

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  29. Life is not always how we wish it to be, but sometimes we are given a different gift to what we were expecting. Such a great blog hop to highlight Autism. (I deleted my first comment)

    ShirleyAnn@speakman40.freeserve.co.uk

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    1. I saw... thank you very much ShirleyAnn... HUGS XXXXX

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  30. I have a cousin with Autism. He is high functioning. I think my Aunt and Uncle could agree with this post. They adopted around the time I was expecting my daughter. They were thrilled. A little girl had been taken from her parents due to a "failure to thrive". Lo and behold these same parent a few years later have a little boy. They gave him up right away and the state asked my Aunt and Uncle if they wanted him. They were unsure. They had been happy to get their daughter and really had not expected to have another child in their lives. They decided to adopt him though. He always was a bit different. My Mother urged them to have him tested because of these differences. (She is an RN and suspected.) He was Autistic. I know it devastated them and they had no clue about what they could expect. He has done fairly well. He will never be "normal" but he is more able to function in the world. He is an awesome kid one on one. Fascinated by bugs and knows SO much about them.

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    1. With Matt it is ceiling fans... rofl...

      HUGS XXXX

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  31. I think it's talking to, listening to and reading other people's experience with the different levels of autism that helps parents cope. The more awareness the general public have of the difficulties faced by both children and parents, and indeed once the children are adults, hopefully they will have better understanding.

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    1. I hope so barbara, that is what i wish for... :) XXX

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  32. Thank you for all you do in promoting autism awareness!
    Yvette
    yratpatrol@aol.com

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  33. I love this...It's true...I couldn't tell you from personal experience but I am the second cousin to a beautiful, amazing autistic child, Kennadi. She rocks my world every time I'm lucky enough to be around her...and even more than that I'm in awe of her parents, my cousins-Chris and Stacy. They are the strongest couple I know. When I'm with them I simply watch because Kennadi's autism changed their lives but you wouldn't know it. They flow so easily know her cues know what to do, how to handle her outbursts. It's a beautiful dance. They've gone as far as to celebrate it with a pageant they chartered and host every year in northern Arkansas, The Exceptional Abilities Pageant (http://www.eapageant.com/)...they're amazing...they experienced a road bump in the beginning, but they way they've overcome it leaves me breathless. I'm blessed to call them family.

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