A lovely poem for parents wig a child with a disability...

[Boobybeau]

Not a poem exactly but any parent with a child with a disability has to read this x

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.

It was a support worker who gave it to us when she left to go to uni. She was lovely but very airy fairy. She also used to love saying things like 'God give special needs children to special parents' and believed in Indigo children.

She was a great bubble blower though :o

Good luck Booby, hope you find an online or RL support group that suits you.

Well if it's not for her, best that she doesn't post as it will increase the stress.

I don't mean that to sound harsh but none of us want to be patronised or judged and that cuts both ways.

You can't please everyone. I hope Holland works out for you.

I love my child but the world treats disabled kids like shit. I'm glad if your experience is of a special, supportive, kindly world but it's not one I recognise.

I hope your hospital visit went well and good luck for the new soon to be arrival and hope all goes well for you in RL.

But no I dont like the poem. Its quite frankly depressing. No one can predict or pretend what your future is going to hold. We dont live each others lives, we only live our own and can only try to support with our experiences which are so varied but thats what makes this a good board as someone somewhere has a similarity and can seek comfort or support from that person if they so wish.

People only write here to help others form their own path. In RL I have no one that I can honestly say I could go to other than my DH and I am damn grateful for all the support and advice I have had on here wether it be comfort or a big kick up the bum to get my act together and I have needed both. :) There isnt anywhere better for honest advice and experience.

Yes there are a lot of negatives on here as unfortunately in a lot of our lives there have been more negatives than positives. But the best bit about this board is that when there is a positive however big or small we can all share it and make someone else smile too.

I first came across this poem when my DD was diagnosed with MS 10 years ago. I was on a course for Reception teachers and cried buckets. It did seem to sum up how I felt when one minute I had a normal intelligent daughter in her twenties and the next she faced a lifetime of disability.
When DS was diagnosed with AS some years later I read the poem again and it really didn't have the same impact. I think it really depends on where the person is at the time. I certainly had many days when I wanted to know where a mother can go to resign!
Please don't take it personally Boobybeau. A lot of people on here are really battle weary after spending years trying to get the help and support they want for their children, and for some the battle looks as though it will never end.

I knew it would be this poem before I clicked on it. I always feel sorry for the OP when this gets posted as they are just trying to be kind and it tends to backfire!
(still hate the poem though )

Boobybeau, I think I did see your thread on pushchairs and I even typed a reply but deleted it because I wasn't sure it was being all that helpful. I just wanted to say that ds was exactly like your child when he was small, wouldn't walk, wouldn't stay in the buggy, dragged his toes the lot, but then when I tried to explain what changed him I couldn't really remember, it was all so long ago (he's 12 now). I think it was a combination of perseverence, and time (him maturing/gaining confidence and understanding) really and was a gradual process. Was also going to say that the Major is a lot more robust than you seem to think, we've just given ours back to the wheelchair service, still in pretty good nick and it's been over all sorts of terrain in the last 8 years.
Sorry, didn't mean to put that much, I should really have gone back to the other thread but didnt want to type it all again.

Anyway. Back to the poem. don't mind me...

And now I see I seem to have mixed you up with someone else. Sorry about that.