Chronic sorrow

[nannymcflea]

Been on a course all day regarding the title.

It was about helping those parents with children with a long term disability/illness.

Lots of discussion about allowing parents time to talk, not being judgemental,supporting the parents through ups and downs,taking the thoughts away from acceptance of the disability and channelling it into adapting your life/ways of doing things and remembering that this will be for a life time for the parents.

It was very informative and well worth the time if you are dealing with parents of children with a long term disability,illness.

If anyone is in this situation and needs the print outs we got I should be able to scan and email them.

[WibbleWobble]

Been on a course all day regarding the title.

It was about helping those parents with children with a long term disability/illness.

Lots of discussion about allowing parents time to talk, not being judgemental,supporting the parents through ups and downs,taking the thoughts away from acceptance of the disability and channelling it into adapting your life/ways of doing things and remembering that this will be for a life time for the parents.

It was very informative and well worth the time if you are dealing with parents of children with a long term disability,illness.

If anyone is in this situation and needs the print outs we got I should be able to scan and email them.

gosh....thats me...i have described my feelings as constant grieving. I grieve for the child i thought i would have. for the fact i will never be able to "retire". the fact that grandchildren will be a distant dream and if a reality will be more for me to worry about.

I dont think about it all the time....i did when katie was tiny...when everything was falling about round my ears but now we just get on with it...its part of my life...i dont really know any different.

This september has been difficult...her peers are off to uni whilst she is just happy with her xbox and the exercise books to write down her list upon list of football players.


Chronic sorrow......it is also chronic joy too!!!

you course sounds wonderful....to have someone who can empathise with parents is a treasure

mandy xx

[Blackhorse]

nannymcflea, I would be interested in seeing some of the handouts you got at the course pls.
Whenever you have a minute that would be great

[nannymcflea]

parsley. It was all about joy too. It was a very good course. A parent that had had a disabled child, who they had unfortunately lost at a young age was there too and gave her views.


She has set up a group for parents to give them a chance to talk freely to others in the same/similar situation.

The quote that drove it home for me was."The loss is ongoing since the source of the loss continues to be present. The loss is a living loss"(Roos 2002)

Blackhorse.

I will work out my new printer/scanner just for you. It will probably be the weekend. If I don't contact you by Monday PLEASE pm me and shout in my ear.

[haribo]

parsley. It was all about joy too. It was a very good course. A parent that had had a disabled child, who they had unfortunately lost at a young age was there too and gave her views.


She has set up a group for parents to give them a chance to talk freely to others in the same/similar situation.

The quote that drove it home for me was."The loss is ongoing since the source of the loss continues to be present. The loss is a living loss"(Roos 2002)

Blackhorse.

I will work out my new printer/scanner just for you. It will probably be the weekend. If I don't contact you by Monday PLEASE pm me and shout in my ear.

if i can have them too for my sis in law with a little boy with downs i would be really grateful .. the course sounds very positive xx

[Blaze]

If you wouldn't mind sedning me the printouts too please - whenever you have time - no rush as all....thank you in advance.

This is a favorite of mine...

Welcome to Holland (poem)
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 even learn some handy phrases in Italian. It's all very exciting.

After several 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 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 but 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 placed than Italy, less flashy than Italy. But after you've been there awhile 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 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.

(Copyright 1987 by Emily Perl Kingsley. All rights reserved.)

[The Juggler]

sounds like an enlightening course.

[ajs]

my best friend has 5 children 2 of them have disabilities one has autism and she often cries for the adult he will never be, although he is to me a perfectly normal 16 yr old he has tantrums and strops like my 15 yr old and gets obsessed with things like my ds did at the same age
i know to her it's different, and she often sees his peers with girlfriends or out with their mates and she can't cope with that

the other has cerebal palsy and they do not allow him to be disabled even though he has no mobility at all on his left side, he plays basketball and rugby and is never allowed to use his disability to get out of anything including cleaning duty ( he is now 11)

very different disabillities but very different attitudes too, the 11 yr old although still a worry is expected to just get on with his life while the 16 yr old needs so much from them, and they can't see a time when he will be independant

[Donkey]

sent pm asking for handouts too when you get it working!

[jane5]

This is a favorite of mine...

Welcome to Holland (poem)
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 even learn some handy phrases in Italian. It's all very exciting.

After several 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 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 but 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 placed than Italy, less flashy than Italy. But after you've been there awhile 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 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.

(Copyright 1987 by Emily Perl Kingsley. All rights reserved.)[/QUOTE]

Love this poem

[jane5]

I've not done a quote before

I meant to say thanks Blaze, I love the poem

[Blaze]

You press the quote button on the thread & it brings up a post box with it in - you then write waht you wanted to add re the quote.

No problem - though I can't take credit for it, as it's not mine, but was happy to share it with those that may not have seen it before.