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Old 04-19-2010, 05:34 PM   #31
Ctsplaysinrain
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Ok- I'm sure most of you have seen this BUT I felt this is in order right now....




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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Old 04-19-2010, 05:36 PM   #32
Ctsplaysinrain
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Celebrating Holland- I'm Home
By Cathy Anthony

(my follow-up to the original \Welcome to Holland\ by Emily Perl Kingsley)


I have been in Holland for over a decade now. It has become home. I have had time to catch my breath, to settle and adjust, to accept something different than I'd planned.I reflect back on those years of past when I had first landed in Holland. I remember clearly my shock, my fear, my anger, the pain and uncertainty. Inthose first few years, I tried to get back to Italy as planned, but Holland was where I was to stay. Today, I can say how far I have come on this unexpected journey. I have learned so much more. But, this too has been a journey of time.

I worked hard. I bought new guidebooks. I learned a new language and I slowly found my way around this new land. I have met others whose plans had changed like mine, and who could share my experience. We supported one another and some have become very special friends.

Some of these fellow travelers had been in Holland longer than I and were seasoned guides, assisting me along the way. Many have encouraged me. Many have taught me to open my eyes to the wonder and gifts to behold in this new land. I have discovered a community of caring. Holland wasn't so bad.

I think that Holland is used to wayward travelers like me and grew to become a land of hospitality, reaching out to welcome, to assist and to support newcomers like me in this new land. Over the years, I've wondered what life would have been like if I'd landed in Italy as planned. Would life have been easier? Would it have been as rewarding? Would I have learned some of the important lessons I hold today?

Sure, this journey has been more challenging and at times I would (and still do) stomp my feet and cry out in frustration and protest. And, yes, Holland is slower paced than Italy and less flashy than Italy, but this too has been an unexpected gift. I have learned to slow down in ways too and look closer at things, with a new appreciation for the remarkable beauty of Holland with its tulips, windmills and Rembrandts.

I have come to love Holland and call it Home.

I have become a world traveler and discovered that it doesn't matter where you land. What's more important is what you make of your journey and how you see and enjoy the very special, the very lovely, things that Holland, or any land, has to offer.

Yes, over a decade ago I landed in a place I hadn't planned. Yet I am thankful, for this destination has been richer than I could have imagined!
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Old 04-19-2010, 05:41 PM   #33
ratlenhum
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Holland Schmolland
by Laura Kreuger Crawford

If you have a special needs child, which I do, and if you troll the
Internet for information, which I have done, you will come across a
certain inspirational analogy. It goes like this:

Imagine that you are planning a trip to Italy. You read all the
latest travel books, you consult with friends about what to pack, and
you develop an elaborate itinerary for your glorious trip. The day
arrives.

You board the plane and settle in with your in-flight magazine,
dreaming of trattorias, gondola rides, and gelato. However when the
plane lands you discover, much to your surprise, you are not in
Italy -- you are in Holland. You are greatly dismayed at this abrupt
and unexpected change in plans.

You rant and rave to the travel agency, but it does no good. You are
stuck. After awhile, you tire of fighting and begin to look at what
Holland has to offer. You notice the beautiful tulips, the kindly
people in the wooden shoes, the french fries with mayonnaise, and you
think, "This isn't exactly what I had planned, but it's not so bad.
It's just different."

Having a child with special needs is supposed to be like this -- not
any worse than having a typical child -- just different.

When I read this my son was almost 3, completely non-verbal and was
hitting me over 100 times a day. While I appreciated the intention of
the story, I couldn't help but think, "Are they kidding? We're not in
some peaceful country dotted with windmills. We are in a country
under siege -- dodging bombs, boarding overloaded helicopters,
bribing officials -- all the while thinking, "What happened to our
beautiful life?"

That was five years ago.

My son is now 8 and though we have come to accept that he will always
have autism, we no longer feel like citizens of a battle-torn nation.
With the help of countless dedicated therapists and teachers,
biological interventions, and an enormously supportive family, my son
has become a fun-loving, affectionate boy with many endearing
qualities and skills. In the process we've created . . . well . . .
our own country, with its own unique traditions and customs.

It's not a war zone, but it's still not Holland. Let's call it
Schmolland. In Schmolland, it's perfectly customary to lick walls,
rub cold pieces of metal across your mouth and line up all your toys
end-to-end. You can show affection by giving a "pointy chin."
A "pointy chin" is when you act like you are going to hug someone and
just when you are really close, you jam your chin into the other
person's shoulder. For the person giving the "pointy chin" this feels
really good, for the receiver, not so much -- but you get used to it.

For citizens of Schmolland, it is quite normal to repeat lines from
videos to express emotion. If you are sad, you can look downcast and
say, "Oh, Pongo." When mad or anxious, you might shout, "Snow can't
stop me!" or "Duchess, kittens, come on!" Sometimes, "And now our
feature presentation" says it all.

In Schmolland, there's not a lot to do, so our citizens find
amusement wherever they can. Bouncing on the couch for hours,
methodically pulling feathers out of down pillows, and laughing
hysterically in bed at 4:00 a.m. are all traditional Schmutch
pastimes.

The hard part of living in our country is dealing with people from
other countries. We try to assimilate ourselves and mimic their
customs, but we aren't always successful. It's perfectly
understandable that an 8 year-old from Schmolland would steal a train
from a toddler at the Thomas the Tank Engine Train Table at Barnes
and Noble. But this is clearly not understandable or acceptable in
other countries, and so we must drag our 8 year-old out of the store
kicking and screaming, all the customers looking on with stark,
pitying stares. But we ignore these looks and focus on the exit sign
because we are a proud people.

Where we live it is not surprising when an 8 year-old boy reaches for
the fleshy part of a woman's upper torso and says, "Do we touch
boodoo?" We simply say, "No, we do not touch boodoo," and go on about
our business. It's a bit more startling in other countries, however,
and can cause all sorts of cross-cultural misunderstandings.

And, though most foreigners can get a drop of water on their pants
and still carry on, this is intolerable to certain citizens in
Schmolland, who insist that the pants must come off no matter where
they are and regardless of whether another pair of pants is present.

Other families who have special needs children are familiar and
comforting to us, yet are still separate entities. Together we make
up a federation of countries, kind of like Scandinavia. Like a person
from Denmark talking to a person from Norway (or in our case, someone
from Schmenmark talking to someone from Schmorway.), we share enough
similarities in our language and customs to understand each other,
but conversations inevitably highlight the diversity of our
traditions. "My child eats paper. Yesterday he ate a whole video
box." "My daughter only eats four foods, all of them white." "We
finally had to lock up the VCR because my child was obsessed with the
rewind button." "My son wants to blow on everyone."

There is one thing we all agree on. We are a growing population. Ten
years ago, 1 in 10,000 children had autism. Today the rate is
approximately 1 in 250. Something is dreadfully wrong. Though the
causes of the increase are still being hotly debated, a number of
parents and professionals believe genetic predisposition has collided
with too many environmental insults -- toxins, chemicals,
antibiotics, vaccines -- to create immunological chaos in the nervous
system of developing children. One medical journalist speculated
these children are the proverbial "canary in the coal mine", here to
alert us to the growing dangers in our environment.

While this is certainly not a view shared by all in the autism
community, it feels true to me.

I hope that researchers discover the magic bullet we all so
desperately crave. And I will never stop investigating new treatments
and therapies that might help my son. But more and more my priorities
are shifting from what "could be" to "what is." I look around this
country my family has created, with all its unique customs, and it
feels like home. For us, any time spent "nation building" is time
well spent.
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Old 04-19-2010, 06:40 PM   #34
iwrbnd
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Quote:
Originally Posted by Ctsplaysinrain View Post
I think we all know it could be much worse but It is still nice to know that we are not alone..
Actually, I'm not sure I would want NT kids especially not now when I'm looking at these middle-schoolers...LOL I believe that I would be very bored with "typical" kids at this point... My kids are smart, creative, think outside of the box thinkers. one is a nationally ranked chess player ( the older one with more serious AS0, one is a budding musician and was picked over a class of high schoolers ( he's 12) to be the sound engineer for his jazz institute... But, it is still tiring.. It is frustrating when they can't even find socks in the morning. Tiring when you are on the "alert" all night for mischief and escapes.. Tiring when all they do is fight. Tiring to be constantly nagging to get homework done, to explain that they STINK and must shower, trying to explain why you shouldnt wear a parka over short-shorts, too-tight t-shirt and the forecast is 90 degreess ( and the child is in 7th grade). Tiring all the IEP meetings etc....



I think we all understand that it could be worse but it's nice to vent too...
Very well said!!!

Congrats on your boy's talents, too! I should be more proud of my math and piano whiz! (But, sometimes the tiring outweighs the triumphs!)
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Old 04-19-2010, 06:55 PM   #35
iwrbnd
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Quote:
Originally Posted by ratlenhum View Post
Holland Schmolland
by Laura Kreuger Crawford

If you have a special needs child, which I do, and if you troll the
Internet for information, which I have done, you will come across a
certain inspirational analogy. It goes like this:

Imagine that you are planning a trip to Italy. You read all the
latest travel books, you consult with friends about what to pack, and
you develop an elaborate itinerary for your glorious trip. The day
arrives.

You board the plane and settle in with your in-flight magazine,
dreaming of trattorias, gondola rides, and gelato. However when the
plane lands you discover, much to your surprise, you are not in
Italy -- you are in Holland. You are greatly dismayed at this abrupt
and unexpected change in plans.

You rant and rave to the travel agency, but it does no good. You are
stuck. After awhile, you tire of fighting and begin to look at what
Holland has to offer. You notice the beautiful tulips, the kindly
people in the wooden shoes, the french fries with mayonnaise, and you
think, "This isn't exactly what I had planned, but it's not so bad.
It's just different."

Having a child with special needs is supposed to be like this -- not
any worse than having a typical child -- just different.

When I read this my son was almost 3, completely non-verbal and was
hitting me over 100 times a day. While I appreciated the intention of
the story, I couldn't help but think, "Are they kidding? We're not in
some peaceful country dotted with windmills. We are in a country
under siege -- dodging bombs, boarding overloaded helicopters,
bribing officials -- all the while thinking, "What happened to our
beautiful life?"

That was five years ago.

My son is now 8 and though we have come to accept that he will always
have autism, we no longer feel like citizens of a battle-torn nation.
With the help of countless dedicated therapists and teachers,
biological interventions, and an enormously supportive family, my son
has become a fun-loving, affectionate boy with many endearing
qualities and skills. In the process we've created . . . well . . .
our own country, with its own unique traditions and customs.

It's not a war zone, but it's still not Holland. Let's call it
Schmolland. In Schmolland, it's perfectly customary to lick walls,
rub cold pieces of metal across your mouth and line up all your toys
end-to-end. You can show affection by giving a "pointy chin."
A "pointy chin" is when you act like you are going to hug someone and
just when you are really close, you jam your chin into the other
person's shoulder. For the person giving the "pointy chin" this feels
really good, for the receiver, not so much -- but you get used to it.

For citizens of Schmolland, it is quite normal to repeat lines from
videos to express emotion. If you are sad, you can look downcast and
say, "Oh, Pongo." When mad or anxious, you might shout, "Snow can't
stop me!" or "Duchess, kittens, come on!" Sometimes, "And now our
feature presentation" says it all.

In Schmolland, there's not a lot to do, so our citizens find
amusement wherever they can. Bouncing on the couch for hours,
methodically pulling feathers out of down pillows, and laughing
hysterically in bed at 4:00 a.m. are all traditional Schmutch
pastimes.

The hard part of living in our country is dealing with people from
other countries. We try to assimilate ourselves and mimic their
customs, but we aren't always successful. It's perfectly
understandable that an 8 year-old from Schmolland would steal a train
from a toddler at the Thomas the Tank Engine Train Table at Barnes
and Noble. But this is clearly not understandable or acceptable in
other countries, and so we must drag our 8 year-old out of the store
kicking and screaming, all the customers looking on with stark,
pitying stares. But we ignore these looks and focus on the exit sign
because we are a proud people.

Where we live it is not surprising when an 8 year-old boy reaches for
the fleshy part of a woman's upper torso and says, "Do we touch
boodoo?" We simply say, "No, we do not touch boodoo," and go on about
our business. It's a bit more startling in other countries, however,
and can cause all sorts of cross-cultural misunderstandings.

And, though most foreigners can get a drop of water on their pants
and still carry on, this is intolerable to certain citizens in
Schmolland, who insist that the pants must come off no matter where
they are and regardless of whether another pair of pants is present.

Other families who have special needs children are familiar and
comforting to us, yet are still separate entities. Together we make
up a federation of countries, kind of like Scandinavia. Like a person
from Denmark talking to a person from Norway (or in our case, someone
from Schmenmark talking to someone from Schmorway.), we share enough
similarities in our language and customs to understand each other,
but conversations inevitably highlight the diversity of our
traditions. "My child eats paper. Yesterday he ate a whole video
box." "My daughter only eats four foods, all of them white." "We
finally had to lock up the VCR because my child was obsessed with the
rewind button." "My son wants to blow on everyone."

There is one thing we all agree on. We are a growing population. Ten
years ago, 1 in 10,000 children had autism. Today the rate is
approximately 1 in 250. Something is dreadfully wrong. Though the
causes of the increase are still being hotly debated, a number of
parents and professionals believe genetic predisposition has collided
with too many environmental insults -- toxins, chemicals,
antibiotics, vaccines -- to create immunological chaos in the nervous
system of developing children. One medical journalist speculated
these children are the proverbial "canary in the coal mine", here to
alert us to the growing dangers in our environment.

While this is certainly not a view shared by all in the autism
community, it feels true to me.

I hope that researchers discover the magic bullet we all so
desperately crave. And I will never stop investigating new treatments
and therapies that might help my son. But more and more my priorities
are shifting from what "could be" to "what is." I look around this
country my family has created, with all its unique customs, and it
feels like home. For us, any time spent "nation building" is time
well spent.
Wow! I've never heard this version of the Holland story! I LOVE IT! The land of Schmolland makes perfect sense to me! Thank you for sharing that story! You put it so well about how in the beginning it felt like a war zone and not a peaceful land of windmills! I used to think that when I first heard the Holland analogy. The rest of your story is so well put! Thank you so much for sharing it!

I'm feeling better tonight than I have in the past year! Thank you everyone for giving me support, stories and a good kick in the head! I needed all three!
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Old 04-19-2010, 06:58 PM   #36
steph124ny
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Quote:
Originally Posted by iwrbnd View Post
Congratulations! The baby/toddler years are so sweet! How many do you have already?

This baby will be #4. I have:

DS Aaron (14)
DD Casey (12)
DD Allison (4)

This last one is another girl. She will be Bailey Lauren and is due 7/22.
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Old 04-19-2010, 07:08 PM   #37
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Quote:
Originally Posted by steph124ny View Post
This baby will be #4. I have:

DS Aaron (14)
DD Casey (12)
DD Allison (4)

This last one is another girl. She will be Bailey Lauren and is due 7/22.
Congratulations! You'll get to experience all stages of parenting at the same time like I did!

I remember when I had a preschooler, grade-schooler, middle-schooler and high-schooler all the same year! If there was a school function then I was there!
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Old 04-19-2010, 07:23 PM   #38
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Quote:
Originally Posted by iwrbnd View Post
Congratulations! You'll get to experience all stages of parenting at the same time like I did!

I remember when I had a preschooler, grade-schooler, middle-schooler and high-schooler all the same year! If there was a school function then I was there!

Yup...Aaron is starting high school, Casey is in middle school, Allie is starting kindy in the fall, and I'll have a newborn! Everyone thinks we are absolutely crazy, but I know that when I'm old, I will never be alone at Christmas!! Plus, my DH is one of 6, and his parents are one of 10 and one of 13 respectively, so we are used to large families around here!! It's like a Duggar family reunion! LMAO!!
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Old 04-19-2010, 08:41 PM   #39
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I didn't write Holland Schmolland, wish I could take credit. I just love it!
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Old 04-19-2010, 08:57 PM   #40
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Originally Posted by iwrbnd View Post
from me! You are definately not alone! I was parenting in my 20's, 30's and now 40's too! I often wonder if I'll be doing it in my 50's too since I can see myself raising any children my 2 on the spectrum might have!

Keep us posted on your dgd results! I'm hoping for good news! The school struggle is probably the most exhausting thing I deal with! Mine is "Why didn't you do the work?", "Why didn't you turn it in?" "How do you not know if you have homework/test/project due?" Ahhhh!!! I definately feel your pain with school. Hopefully being older in her class will help!
Thank you!

The other day she had to write the numbers 1-100 on a chart. It took her 3 hours to do it. There are days at scholl that she refuses to work. This is only kindergarten. What is she going to be like in higher grades?!
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Old 04-19-2010, 08:58 PM   #41
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I didn't write Holland Schmolland, wish I could take credit. I just love it!
Well, I'm so glad you shared it!

I haven't felt this positive in a long time. I don't feel so defeated. Just knowing others out there are dealing with similiar situations and making it even though they have some of the same feelings as I do is so empowering. I've never known how "therapy" would help but I see it now. Thank you my disfriends! I'm sure I'll have some more days "in the pit" as I call it but I know I can do this! (Even if I secretly have a countdown to graduation in my head!)
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Old 04-19-2010, 10:30 PM   #42
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moving this to the disABILITIES Community Board where it will be more on topic.
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Old 04-20-2010, 07:11 AM   #43
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moving this to the disABILITIES Community Board where it will be more on topic.
Oops, I thought that's where I posted it. Sorry!
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Old 04-20-2010, 08:14 AM   #44
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I want you to know you are not alone. I think about 5-7 years ago I would have said I was tired of parenting ASD. I have 2 children on opposite ends of the spectrum, but my daughter despite being high functioning has serious social querks that are very annoying to parent. (My X-took off when my children were ages 1 & 3.)
My DD, now 16, is on the high school bowling team & is going to the junior prom. She has a job as a "mother's helper" for the summer. DS, now 14, has learned to shave & dress himself, but always puts his underwear on backwards & shoes on wrong feet. He is 6 foot tall & eats non-stop.
I realized watching tv one night, that if I could press a magic button & not have children with ASD I am not sure I would push it. Even if I could select or mold exactly who they would be, would I want that? I like my memories...My 4 year old DD's first words "Have fun, Go bus? See da castle?" My wonderful 8 year old son at a water park, trying to figure out if a woman in a sexy brown bathing suit had poo in her pants...(I am so sorry lady!!!)
I looked back at all the amazing puzzles they have given me to solve & started tp see it as I was given a special gift. I know as much as everyone that it takes patience to survive the day to day. You need to learn to laugh instead of cry. Turn it into a positive. My son has been potty trained since that day & my daughter was on a debate team last year.
I wish you luck & patience!
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Old 04-20-2010, 06:56 PM   #45
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Hi! I just finished reading this thread and I feel like someone has been peeking through my curtains! This is my life. Thanks, ratlenhum, for sharing the Holland Schmolland piece. I laughed and cried all at once. I have a neurtotypical DS6 and autistic DS5 so I feel like I have one foot in Italy and the other foot in Schmolland. Does that make me a Itali-Schmolland-American? Seriously, from one Schmollandite to another, do you mind if I join you?

I agree with the poster that said people 40+ should see an end in sight...I am 41 and DH is 51. There is no end in sight, but we are blessed.
Yes, momejay, you do have to learn to laugh and find the positive. Both, my neurtotypical and my neurochallenged, give me plenty to laugh about and plenty to be grateful for. Finding the humor has gotten me through a lot of hard knocks in life, not just parenthood.
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