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.

Well as a parent of a child with a disability my self I
Feel it describes out journey quIte well, andso did
Some of my friends. Didn't mean to offend, just thought there may be others who felt the same as me. Think I'm gonna stop coming on mums net as all I've found on here is a mass of negativity towards me and very little support x

You will find honesty and a lot of support at all times of the day or night.
Rejection of the poem is not a rejection of the poster in any way.

You have been very kind and helpful to other posters in the antenatal threads, when is your baby due?

Hope you will keep posting boobybeau, this board has given myself such great practical advice and equally important emotional support.

For me when I first got given the poem (by a CAMHS nurse) I did get emotional but it's just as time goes by I suppose I got fed up of it!

Has nothing to do with you personally, keep posting. :)

Sorry, as a working with child with a disability who takes him to and from appointments every 5 mins in my time off and the rest of the time I'm enjoying him as well as being 36 wks pregnant and having a million tests to 'make sure' the same doesn't happen again, I don't always get time to come on here. I wrIte on post when I can but I have found mums net so 'clicky''. Been registered on here for a couple of weeks and that's enough for me. X

Someone printed off this poem when it first became apparent that ds had sn. I'm afraid it just bore no relation to how I was feeling, and it just made me feel bad that I was feeling the way I was. At the time we were waiting for results of a test to see whether ds had spinal muscular atrophy, and I just felt in a permanent state of terror.

I think the 'poem' might describe the feelings you might have if you were expecting a girl when you were pregnant and then you gave birth to a boy.

Mind you I don't think I much felt like having a baby was like travelling to Italy, I remember after having dd1, feeling as though i had been abducted by aliens, dropped on an another planet and then deprived of sleep for months on end!

But, Boobybeau, I am glad that it was a piece that helped you and I am glad if it makes sense to other people. I suppose the thing is there is no right or wrong way to feel with all this, and it does rather assume to 'speak to us all'.But every one and everybodies children and experiences are so different.

I have found so much support and advice on the sn boards since having ds, and one of the things I appreciate about it here (as opposed to rl) is that you can be so honest and someone will come along to stand by your side, and hold your hand without the need to offer platitudes.

Ok, it can be an acquired taste and that's to be expected. Just remember that the SN boards have a lot of expertise and experience available to you if you need to head off down the statementing, MS schooling and support and all the extra bits about having a child with an additional need that you might find hard to locate elsewhere.
Come back if you need anything and ask.
Good luck with the baby, and the rest of your family.

Thanks fallencaryatid. I was hoping to tap into some of this expertise but feel I've been slammed for coming in here every day and therefore no one really wants to engage with me. Like you said, everyone funds comfort in different ways and I have found mums net mostly gives me the opposite. Think I'll stick to what I know x

OP - don't give up just because people have express how they feel about the poem. Some love it some hate it - it has it's place but when you've had it rammed down your throat by too many well meaning people who don't really understand, it wears a bit thin!

As far as I can see, you've been asking about pushchairs in the SN section.
My Ds is now 17, so I can't help there. He was also a runner with no sense of danger, so I'd be more help on ways of containing and training to recall and heel.
So it's not really a case of not wanting to engage with you, more that there are more useful people around that can.

It really isn't a criticism of you as a person that people don't like this poem.

That's like saying I love marmite and I reply oh god, I bloody HATE marmite, yuk. And you go bloody hell, I was only saying I like it.

You're allowed to like it. I'm allowed to hate it. If you talk about liking it, you are opening up a conversation about it and you're going to get the marmite haters too

I don't like it. It doesn't speak to me at all. That's not a criticism of you for liking it and feeling like it speaks to you. If you get something from it - then brilliant. We all need something.

We all have things that get to us. My children both have autism and any talk of rainman makes me stabby and if you ask me what their special skill is, you'll be told they can fly.

13 years down the autism road and you get a bit sick of the round robin emailesque stuff

But that is not anything against someone who finds comfort in it! You are allowed to feel however you want. As is everyone else.

The beauty of this place is that we can disagree, instead of putting on a fake hunny hugs front. We can disagree and yet we will come together when support is needed.

Had you posted I am finding things really hard atm, struggling, I feel comforted by this poem - I bet you not one person would have said anything about the poem because they'd have been focusing on the fact you said you're having a rough time.

Boobybeau - I am sorry you feel like that.

I read the title of your post and my heart sank when I saw what poem it was so I wasn't at all surprised at the reaction.

There is an enormous amount of support on this board in getting through the very many battles we have in accessing the practical, but highly essential things, such as basic services, diagnostic service and support in school. Many of us spend our time, energy, sanity and hard earned cash on trying to ensure our child gets what they are entitled to.

It is an uphill struggle because it is about money.

Many of us find that the 'charitable' approach of using disability as a pity party fundraiser or patronisingly saying 'just enjoy your child' is just another way of putting parents down for challenging things and providing an excuse not to spend money to provide basic services.

A poem will mean different things to different people and I am glad that it helps you and hope that your child is happy in school and that gets all he help and support he needs. I hope he gets all the services he is entitled to and that your 'Holland' is not the shithole that many of us live in!!

It's not the fact that this doesn't sit well with other, I com

yeah. Holland is a pile of shit and somewhere you have to fight in every single day, and nobody really wants you there

Boobybeau - You feel unsupported? I am sorry that you do. That's awful. What support have you looked for and been let down about?

It's not the fact that this doesn't sit well with others, I completely get that there are horses for corses and this isn't going suit every one, I've just found this quite a negative place and with so much negativity around us already at the moment the last thing I want to hear is 'you think it's bad now, wait till they're older then it's really bad'. I was hoping to find inspiration and thought this might encourage a bit of that and it's done the opposite. Thanks though x

Yes, do let us know if we can help. There is wealth of experience and support here.

I've got a friend who fills her FB with doggie stuff and rainbow bridges and Save this Dog Who Bit 17 People But Didn't Mean It.
She is a lovely woman, with a huge, compassionate heart. I'm very fond of her despite the fact I often hide her posts. She adds to the world in so many other ways, and has had a lot of shit to put up with from different sources, but she keeps on giving and fighting for her people.
So I think the Rainbow Bridge is shite, doesn't affect my feelings for her.

I am sorry you were looking for hope, inspiration and happy endings and you felt we couldn't give you that.

I can't promise happy endings for anyone but I know I have found hope and inspiration in abundance here and perhaps that, in itself, is the happy ending I am after.

The simple fact is that our experiences are largely negative and yet we find strength and positivity in getting through them together. We wish it weren't so and that life supporting a child with disabilities was easy and cost but it is not.

I cannot tell you that you will access the services you need when the Tories are slashing them for philosophical as much as financial reasons.

I cannot tell you schools will be supportive and inclusive because, generally, they are not. Not because they are bad or mean (although some are) but because it is about money and training.

I cannot tell you society will respect your child or that your friends will support and understand you.

I can tell you that I do my level best with all my might to change the above.

I can tell you that the women on this board and their fight and humour inspire me every day.

I can tell you that I dedicated my PhD to them with this line:

"A nation's greatness is measured by how it treats its weakest members"

We are treat our most vulnerable appallingly. The women on this board ill not stand for that. I respect them profoundly.

We are not a Children in Need video with song track and happy ending.

This is life. It might not be yours. But it's ours. So don't knock it.

Sorry I had to smile to my self while reading this on the way back from one of my ds's many hospital appointments with him screaming in the back because we went a different route. If have been told by many here not to take other peoples posts with thier feelings personally and I am now being told that I'm knocking others lives for posting my feelings. Sorry for offending others, not sure how that happened as was not my intention. Glad this forum gives so many comfort but like you said its not for me and I'll prob find others who feel the same as me else where. Thanks x

Really, booby, don't take it personally that many don't like the poem.

I saw 'Welcome to Holland' first when DS was 3, (he's now nearly 13) and it did make me cry at the time. But I think it was written to provide comfort to those with DC with learning difficulties but not really with challenging behaviour. That's why I find the 'Welcome to Beirut' one more realistic for my experience.

I think in your OP you didn't explain what your connection was to the poem, it read as if you thought it might bring comfort to others, but not that it applied to you.

As soon as I opened this thread I knew it would be about Holland.

Someone gave me a copy in a frame to put on my wall!

Its in the attic!