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My brain damaged child is wonderful and the centre of my family

57 replies

needmorecoffee · 14/03/2008 07:30

and fits in with my lifestyle.
Just thought we needed an opposing view to the current one that its all a terrible disaster that destroys the siblings.
I'm not saying it isn't hard - all children are hard. My edlest NT daughter was incredibly hard as a baby, cried constantly, as a toddler she destroyed her room, hurt her brothers and couldn't be taken places as she was a whirlwind.
So both my daughters were hard work but in different ways and I wouldn't be without either of them.
I can't begin to list the things dd2 has taught me and the people I have met. Before I had her I had never met a real disabled person (even though ds1 has Aspergers and I have MS) and had seen women pushing outsize buggies and thought 'I'd never cope'
But you do cope. dd2 screamed for 2 years and the doctors said she would never know who we are and would be a vegetable. They were so wrong. She is bright, funny, gorgeous and a huge part of our family. Her brothers adore her and have learned that 'different' does not mean 'less human' or 'wrong'.

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MicrowaveOnly · 14/03/2008 07:52

nmc maybe you should write a book to counter all these 'mis lits' (miserable literature so I've been told!).

needmorecoffee · 14/03/2008 08:04

I am I am. Its taking much longer than I thought. Then I can be on telly and have the country see the mad hippy woman who is crazy enough to keep the brain damaged one.
Things is, I'm too ranty to be allowed on TV

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NAB3wishesfor2008 · 14/03/2008 08:07

Your post has brought tears to my eyes.

It is lovely to hear a positive story. I am sick of reading posts about the fear of a child with DS and the oblique references to not wanting them if the tests are positive. Huge relief when tests come back "normal."

I must be a bit loopy as I felt almost cheated when my son didn't have a syndrome when he was born.

I apologise if my post offends anyone. I know what I am thinking and feeling, I just can't always express it in the typed word.

berolina · 14/03/2008 08:12

NMC

I was thinking yesterday that the MN SN crowd should write a book. But did not suggest it as I'm not part of the SN crowd so wouldn't have any of the hard work, so felt it would be a bit cheeky (although I am an amazing proofreader ).

needmorecoffee · 14/03/2008 08:21

and you know what, dd has no concept of 'mine' (mainly cos she has never held a toy) so shares really really well.
Friend of mines lad has CP and is quite severely cognitively impaired and will never understand 'hate' or consumerism, he'll never start a war or mug an old lady (neither will d for that matter but she will understand hate and nastiness judging by the Hollanders of this work)
I feel proud when I push her along in her wheelchair. I celebrate every little achevment she makes against impossible odds. Yesterday she managed to move one arm half an inch to wave bye bye and was so pleased with herslef she started laughing. In bed last night she lay kicking me and saying 'ouf' which means that she wants something. this child who they said would never communicate. At school she mastered a soundbeam in 5 seconds and uses a computer.
She's opnened my eyes, and those of her brothers to how disabled poeple are treated and while we've met many nasty starers and tutters, we've also met some truly wondrous caring people and had random encounters with strangers filled with unexpected kindnesses.
Course I'm going to vent about the hard bits 9in the same way that NT parents complain about hard bits with NT children) but there's so many joyous bits too.
And to lower the tone a bit....I get to oggle her doctor who is rather lush

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peanutbear · 14/03/2008 08:28

what you have written is beautiful I couldnt read and not post

Taliesintraction · 14/03/2008 08:35

As aparantly the list "Satan" can I pick you up on this.

Why don't you write a book?

All of you, a chapter each.

It would only need one of you to take on the editorial role.

It would sell well too.

You could have a group holiday in the maldives on the royalties.

Or buy a special something for every SN school in the UK.

2shoes · 14/03/2008 08:48

nmc lovely post and a sentiment I could echo.
although i never use the expression brain damaged. as to me there is nothing damaged about dd.
she lights up the house.
like you say it was hard when she was a baby and a tot. but it wasn't that easy with ds and he was nt. tbh he gave us many more sleepless nights than she did.
her db is her best mate. she had to do a questionaire with her sw using her ccs yesterday. he asked her who she goes to when she has a problem , she said ds
she is beautiful. has a "wicked" sense of humour and doesn't do nasty.
oh and she is my forever freind.

2shoes · 14/03/2008 08:49

Taliesintraction that is not such a bad idea

MrsJohnCusack · 14/03/2008 08:53

honestly I agree with berolina - it would be a BRILLIANT book and a total antidote to the one that's being talked about (that article etc. has been haunting me but I don't feel qualified to comment really)

I would happily help out with proofreading or anything else - would be well worth it

and needmorecoffee, your family (and you!) sounds fab

chrissnow · 14/03/2008 09:02

I agree with MrsJC. It is haunting me too. Maybe in some warped way the woman may have done some good .
Ladies - Write the damn book!!!! We need more of this joy in the world.
Your families sound lovely and warm and wonderful and everything family should be.

chrissnow · 14/03/2008 09:03

I agree with MrsJC. It is haunting me too. Maybe in some warped way the woman may have done some good .
Ladies - Write the damn book!!!! We need more of this joy in the world.
Your families sound lovely and warm and wonderful and everything family should be.

chrissnow · 14/03/2008 09:03

oops sorry. I obviously feel very strongly about it

lourobert · 14/03/2008 09:09

Id happily be able to write a chapter about my ds and how hes changed my life...for the better, the past two years. I think ive bored everyone at work and theres no space left on my wall at work for his photos the thought of a new audience is really rather exciting

thestands · 14/03/2008 09:23

My 'cabbage in the corner' is the hub of our family who every one adores.

Taliesintraction · 14/03/2008 09:58

OK then 2 shoes,

The gauntlet is down.

Who will write the first chapter.

I would warn you though you need to retain editorial rights.

We had a chapter in a book about SN children once and by the time it had been through the edit process I was not sure I recognised any of the people in it.

For a start it didn't mention my cloven feet or horns.

LOL

NAB3wishesfor2008 · 14/03/2008 10:00

I offer any help I can too.

berolina · 14/03/2008 10:08

Oi, my idea

Seriously, I am a demon proofreader, have always worked with writing and language. Am also quite good at coordinating stuff.

Taliesintraction · 14/03/2008 10:09

PS Please don't call her/him a "cabbage" even in jest.

I once got accosted in Tescos by someone who said (over the wheelchair of course)

She had "one of those" at home too.

Refering to my friend.

Not good.

Taliesintraction · 14/03/2008 10:10

berolina - looks like you have found yourself a job!!!

FioFio · 14/03/2008 10:11

This reply has been deleted

Message withdrawn

soapbox · 14/03/2008 10:12

I also think it is a wonderful idea - imagine a parent of a new born with significant problems, and all that is hitting you in the face is the current depressing diatribe Faced with such a bleak outlook, then they too might think it best to dump and run!

I think a book from the MN crew would be a wonderful backlash - and a positive, but real look into the challenges faced, and importantly overcome

twocutedarlings · 14/03/2008 10:18

FAB Idea, I'd love to write about my DD after all she is my favorite topic .

needmorecoffee · 14/03/2008 10:21

I don't think jesting is wrong. You should hear things at our local crip club. Social workers would swoon.

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SixSpotBurnet · 14/03/2008 10:21

I wonder if we could tempt Aloha out of mumsnet purdah - she is a fabulous writer.