How do you feel about the Holland story/thingy?

[expatinscotland]

You know, this one:
"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 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 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 never would 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 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 â?¦ 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 go to
Italy, you may never be free to enjoy the very special, the very lovely things
about Holland.

©1987 by Emily Perl Kingsley."

Cuz I HATE it.

I find it patronising and twee and condescending, like we all wanted 'perfect' children and should just be bloody grateful for the Rembrandts.

Everytime someone sends me this I know they're trying to be helpful, but sometimes I just want to write back 'Piss off'.

[mymatemax]

It really made me laugh, not because its fabulous or touching but because my boss is Dutch & always telling me how bloody wonderful Holland is.... Other than that it didn't do it for me!

[MamazonAKAfatty]

i can see what she was trying to get at and i am sure it would b very helpfull to some parents who are adjusting to the idea of having a SN child.....but i feel the same as you Expat.

[anniebear]

I dont know

I can see how for some people its just awful as you maybe never see the tulips

For me, our portage worker showed it me just at the right time and it did feel like some one had written my feelings down on paper. dont get me wrong, there are lots of times I can't see tulips either!!

I know a lot of people prefer the Welcome To Beruit one!

[Cappuccino]

god I hate the Holland thing

nothing annoys me more

I have said it before on MN and I'll say it again - I am not in Holland

I am standing in the middle of Italy with a child in a wheelchair, I am wearing unwieldy clogs and clutching an unfashionable bunch of tulips, as the cool young Italians zip by me on their little Vespa's going 'Ciao'

f*cking Holland my backside

(does that answer your question?)

[expatinscotland]

I didn't have a dream of the 'perfect' child.

I was so desperate for a child, ANY child, anywhere.

And my daughter is such a beautiful person - so sweet-natured, so patient, so contented, so kind and gentle - I don't consider her a 'loss' in any way because she has special needs.

In fact, I'm not half the person she is even now, despite being 'NT'. I was never as beautiful as she is, even physically. My intelligence really wasn't any sort of extra advantage in life at all and I can't help thinking I'd have been much happier without it.

I guess it's different for everyone, but this anecdote just gets on my tits.

[Cappuccino]

oh and guide books?

show me the blessed guidebooks

sorry I am cross at the anecdote, not having a special needs child

cos like expat I wouldn't swap mine for the world

(except this morning when she was faffing around with her breakfast and I wanted to chuck her out the window )

[r3dh3d]

Loathe it. Unreservedly.

Largely because it makes me feel guilty about being insufficiently grateful/serene/accepting about the huge pile of SHIT life has dealt DD1.

She's a star. But the shit is just shit. Not tulips.

[expatinscotland]

I'm getting pretty annoyed with it.

I've never been to Holland or Italy and I'm still here!

Can't say I ever bought a guidebook in my life, either. I've always been the sort of person who just shows up and sees how it all plays out.

I just hate these little anecdotes that try to catergorise parents of children with special needs or people with special needs.

Why should this group be categorised more than any other?

It's so twee I want to slap it.

[Twiglett]

what about the Beirut version

WELCOME TO BEIRUT

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

There you are, happy in your life, one or two little ones at your feet. Life is complete and good. One of the children is a little different than the other but of course, he's like your in-laws, and you did marry into the family. It can't be all that bad. One day someone comes up from behind you and throws a black bag over your head. They start kicking you in the stomach and trying to tear your heart out. You are terrified, kicking and screaming you struggle to get away but there are too many of them, they overpower you and stuff you into a trunk of a car. Bruised and dazed, you don't know where you are. What's going to happen to you? Will you live through this? This is the day you get the diagnosis. "YOUR CHILD HAS AUTISM"!

There you are in Beirut, dropped in the middle of a war. You don't know the language and you don't know what is going on. Bombs are dropping "Life long diagnosis" and "Neurologically impaired".

Bullets whiz by "refrigerator mother", " A good smack is all HE needs to straighten up". Your adrenaline races as the clock ticks away your child's chances for "recovery". You sure as heck didn't sign up for this and want out NOW! God has over estimated your abilities.

Unfortunately, there is no one to send your resignation to. You've done everything right in your life, well you tried, well, you weren't caught too often. Hey! you've never even heard of autism before. You look around and everything looks the same, but different. Your family is the same, your child is the same, but now he has a label and you have a case worker assigned to your family.

She'll call you soon. You feel like a lab rat dropped into a maze.

Just as you start to get the first one figured out (early intervention) they drop you into a larger more complex one (school).

Never to be out done, there is always the medical intervention maze. That one is almost never completed. There is always some new "miracle" drug out there. It helps some kids, will it help yours? You will find some if the greatest folks in the world are doing the same maze you are, maybe on another level but a special-ed maze just the same. Tapping into those folks is a great life line to help you get through the day. This really sucks but hey, there are still good times to be had.

WARNING! You do develop and odd sense of humor.

Every so often you get hit by a bullet or bomb not enough to kill you, only enough to leave a gaping wound. Your child regresses for no apparent reason, and it feels like a kick in the stomach.
Some bully makes fun of your kid and your heart aches.
You're excluded from activities and functions because of your child and you cry.
Your other children are embarrassed to be around your disabled child and you sigh.
You're insurance company refuses to provide therapies for "chronic, life long conditions" and your blood pressure goes up.
Your arm aches from holding onto the phone with yet another bureaucrat or doctor or therapist who holds the power to improve or destroy the quality of your child's life with the stroke of a pen.
You're exhausted because your child doesn't sleep.
And yet, hope springs eternal.

Yes there is hope. There ARE new medications. There IS research going on. There are interventions that help. Thank God for all those who fought so hard before you came along. Your child will make progress.

When he speaks for the first time, maybe not until he is 8 yrs old, your heart will soar. You will know that you have experienced a miracle and you will rejoice. The smallest improvement will look like a huge leap to you. You will marvel at typical development and realize how amazing it is. You will know sorrow like few others and yet you will know joy above joy. You will meet dirty faced angels on playgrounds who are kind to your child without being told to be. There will be a few nurses and doctors who treat your child with respect and who will show you concern and love like few others. Knowing eyes will meet yours in restaurants and malls, they'll understand, they are living through similar times. For those people you will be forever grateful.

Don't get me wrong. This is war and its awful. There are no discharges and when you are gone someone else will have to fight in your place. But, there are lulls in wars, times when the bullets aren't flying and bombs aren't dropping. Flowers are seen and picked. Life long friendships are forged. You share and odd kinship with people from all walks of life. Good times are had, and because we know how bad the bad times are, the good times are even better. Life is good but your life is never normal again, but hey, what fun is normal.

© by Susan F. Rzucidlo

[Saker]

I think the danger of the Welcome to Holland thing is that it lets some people off the hook as it were. If you don't have a child with SN then it's easier if you can think that parents of children with SN are equally satisfied with where they are, it's just different. It's like when my MIL says about looking after Ds2 (which she doesn't exactly do very often) "oh but it's so rewarding", rather than it's bloody hard work and you can't help but worry about how things will be when he's older. You get used to it but the pain never goes away and sometimes it's still really bad, and it is better to be allowed to acknowledge that. I don't really think that makes sense, I didn't put it well and will probably offend everyone now.

[Pixel]

I hadn't read all the Beirut one before. I like it much better than the Holland one which makes me cringe.

[sphil]

Not badly put at all Saker - I agree with you. The Holland thing made me cry when I first read it (just before DS2 was dx) but now it leaves me cold because DS2 is just DS2 iyswim.

[Jimjams2]

bleugh. Loathe Welcome to Holland.

Like Welcome to Beiruit

LOVE welcome to Schmolland

[Jimjams2]

Loathe it fro the same reasons as r3dh3d btw- and also no matter how serene and accepting I am, ds1's disability has still royally screwed up his life. His disability isn't about me, it hasn't screwed up my life, it's about him.

[Jimjams2]

welcome to Shmolland

[Jimjams2]

ooh that link is really slow- so here's Schmolland- think it was CT who found this: We're getting lots of pointy chin at the moment, although we call it jutty chin.

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.
The End

[eidsvold]

i found it helpful at a time when I was overwhelmed with what was happening regarding dd1 and her condition - cardiac and genetic. I also used it as an analogy for some mums at kindy who could not see that dd1 was dd1 and it was not a terrible thing to have a child with sn - it was just different in some ways.

I think it also helped me realise that I could get stuck where I was or could move on and deal with what life had dealt me - as I have always done. The mourning and moaning about oh yes I was supposed to go there that is what I had planned line - never done that - adore dd1 and can't imagine life without her.

Having said all that there are parts of Welcome to Beirut that I can relate to as well.

[mymatemax]

Schmolland is good, sometimes I think ds2 is a native, others I just don't know... but lots of window lickinf in our Schmolland & beard stroking.

[TeeCee]

If I'm not mistaken, which I may be, it was written by a parent with a child with Down's syndrome, so perhaps, if I am correct, it doesn't work for parnts whose children are autistic or have other special needs.

I'm with Edisvold on this and it actually gave me some comfort when i first heard it and it helped to read how another parent felt and to relate a bit to what she was saying, made me feel not so alone.

And like Edisvold, 5 years down the line I too can also relate to parts of Welcome to Beirut.

[Jimjams2]

yes you're right TC- and I can see it would be useful to someone terrified holding a new baby thinking OMG how did that happen. I suppose with autism the behaviours etc come first and you wouldn;t get that same sense of what does the future hold/terror/how will I cope because by time of dx you've already been dealing with it all for a long time, and the mother-child bond is several years established.

Possibly pointy chin and stripping off for tiny specs of water are autistic things. The funny thing is my friends dd says "Duchess kittens come on" as well- why the same phrases-bizarre

[anniebear]

My feelings exactly TC!

[theheadgirl]

My dd3 has Downs and Asd - I certainly remember being comforted by "welcome to Holland" just after her birth. But when it became clear there was something different going on, for want of a better term something "strange", and ASD was diagnosed - well, yes, "holland, schmolland" rings true. And the "canary in the coalmine" reference chills me to the bone - I've often thought along those lines myself...
And DD3 does the "pointy chin" thing too. But also, when in the mood, can hug, pat my back, and say "ahh"

[Saggarmakersbottomknocker]

Holland worked for me at the time. I think it's probably true that it 'fits' better with medical rather than behavioural issues and that's reflected in boths TC's and eidsvold's experiences.

Beirut sounds very scary sand stressful