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SN children

Here are some suggested organisations that offer expert advice on special needs.

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Original poster

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'.

OP posts:

berolina · 14/03/2008 10:22

Shall I start a 'book' thread?

SixSpotBurnet · 14/03/2008 10:23

Fio has resurrected an old one on just this topic .

berolina · 14/03/2008 10:24

Ah, Fio got there first

eidsvold · 14/03/2008 10:27

am happy to contribute

soapbox · 14/03/2008 10:28

Motherinferior is another name you might want to bring in! IIRC she did an article on DS for a mag once, which was very good!

bullet123 · 14/03/2008 10:42

This is a wonderful thread .

thestands · 14/03/2008 10:52

Oi TAILES,

I NEVER call my son a cabbage, that is what the doctor called him when trying to explain his disabilities.

Original poster

needmorecoffee · 14/03/2008 10:55

dd's first doc said 'vegetable'. You'd think those terms would have gone away wouldn't you.

OP posts:

2shoes · 14/03/2008 11:42

sorry but does this mean i can't call dd sweet pea any more(puzzled emotion)

NAB3wishesfor2008 · 14/03/2008 11:42

Of course you can!

dustystar · 14/03/2008 12:12

I think the book is a great idea

Taliesintraction · 14/03/2008 14:37

Hi the Stands,

You have hit on one that really p&&& me off.

You send these bloody medicos on all sorts of courses and training and they still just do not get it do they??

GRRRRRRRR

Hope you get your book together, it could be good seller, useful source of advice and force for change.

How about asking David Cameron and Gordon Brown to do a chapter each??

No I wasn't being serious...

2shoes · 14/03/2008 15:29

why not david cameron has a child with cn.

Taliesintraction · 14/03/2008 15:53

And Gordon so I understand.

Dafydd Wigley (PC) was a devoted father to a SN child who sadly has now died.

alfiesbabe · 14/03/2008 18:22

What an uplifting post NMC. It's good to be reminded that children are first and foremost children. And at times all children can be nice, nasty, and everything in between. An abled child can be a PITA, awkward and difficult to live with at times. I know a number of families who have a child with a disability, and they often find their other kids more difficult and draining!

Original poster

needmorecoffee · 14/03/2008 19:56

so right Alfie. People see the disability and forget there's a child under there. A child who needs what any child needs.
I've always tried to get a balance between dd's needs as a child and her needs as a person with cerebral palsy. Some weeks we skip 'therapies' or the splints.
I have a fair few friends with severe CP who told me they hated being forced into these things as children and felt they were just their disability.
So I'll tell you what dd enjoys. She is 4 and loves slapstick humour. Dropping things, breaking things and falling over makes her laugh till she is sick (her vision is too poor for Laurel and Hardy but i'm sure she'd love it). She likes making jokes. I'll ask her to look at me so she turns the other way and tries not to laugh. She fails and starts giggling. She loves playing on the computer. School has various switch accessible programmes that she enjoys.
But best of all she likes going for a walk. I've pushed her miles I think. She doesn't mind the wind and rain as she is all snug in her wheelchair. Trees fascinate her and she likes watching children at the park.
Right now her 12 yo brother is boxing with her by holding her hands and pretending to be bopped on the side of the head. She is laughing hysterically at him and making her 'again' noise.

OP posts:

Original poster

needmorecoffee · 14/03/2008 19:58

heh about difficult and draining. Whilst dd is number 4 I had forgotten all about toddlers who run off or fiddle with things. DD stays where she is put and touches nothing. She's a good girl
but when friends bring over NT toddlers I'm shattered! And so much of my house isn#'t toddler proof!

OP posts:

Taliesintraction · 14/03/2008 20:02

OHHH yes NMC

Tell me about it!

At one stage I was a complete expert at removing half eaten sandwiches which a particular child had tried to play on the video player.

You cannot begin to imagine the carnage....

But kids are children first, diagnostic categories and clinical labels fifth.

Well it could not be second now could it.

Bumblelion · 14/03/2008 20:05

When my youngest DD was first diagnosed with Sotos syndrome, I felt my world had caved in ... but now she is 6 I realise that she has a right to be here, she is adorable, funny, tetchy (sometimes!) and has taught me to accept everyone for who and what they are.

I always had great expectations of my eldest children (now 15 and 11) but, with DD2 (6), if she grows up to lead an independent life (if only stacking shelves in Tesco's), I will be so proud. She has taught me to accept 'differences' in everyone and to appreciate who and what they are ... and, if she doesn't grow up to lead an independent life, I will still be proud.

I always took for granted the milestones my my daughter and son, but when I realised my youngest had trouble in reaching those milestones (and may never reach them), it taught me that each small step is a step in the right direction.

Me and her dad split when she was 11 weeks old, and it may sound strange, but her difficulties (then undiagnosed) kept me on the straight and narrow because I was so caught up in my concern for her that I forgot to care about myself being left on my own, a single mum to 3 children.

Yes, I would love her not to struggle but each milestone she reaches is such an accomplishment, she is a shining star, makes us laugh and I would not change her for the world ... and I believe she has made me a better person for having her as my daughter (and has made her sister and brother better people for having her as her sister). They both seem to be more accepting of someone who is outside the 'norm' (and I hate that word)!

mymatemax · 14/03/2008 20:44

fantastic posts well done nmc, i'm crap at writing - can talk a good talk - but if anyone wants to put my wittering on paper I'd happily contribute.
DS has taught me so much, he is above all else just a 5 yr old who annoys his brother & makes me smile just thinking about him, no matter how much of the night he's kept us all awake. He may not be as physically able, emotionally able or academically able as your average 5 yr old, but he is just PERFECT!

And NMC, ranters get the best publicity so you MUST go on TV :O

TotalChaos · 14/03/2008 20:45

I've been reading this thread but can't think of an adequate response. So wish you love and hugs and organic cake.

marina · 14/03/2008 20:50

That's such a great OP needmorecoffee and I too think you should all write a book, the perfect counterweight to all the JH brouhaha

thestands · 15/03/2008 00:15

My sister was telling me (in front of my nt dd ) tonight that her friend has just been told that her unborn baby could have downs. She said the friend is going to have councelling, and is unsure wether she will continue the pregnancy. (her words and opionions not mine or my sisters) dd, was horrified as it is a baby not a disability (again her words not mine), that is what ds has done for her, she sees all of us as equal as is only right, she does not see disability. For that I am proud. I would like to think that she would of been like that regardless of what ds is like, especially as she was alive when my grandad was alive, and he had been disabled all his life. But, who knows.

Mercy · 15/03/2008 00:37

NMC, I don't know what to say. What a very moving post.

Ds'(just 4) best friend has cancer (treatable) and dd's friend's sister has a condition which means she will be porbably be dependent on her parents for her entire life.

I like your positive view - and that of my dc friends parents.

Original poster

needmorecoffee · 15/03/2008 07:34

I do have a half written book and a publishing thingy already. Its just finding the time.
But that woman's book has put me off for the time being plus I still can't write about dd's birth, its too traumatic.
No way am I going on telly. I don't even let poeple take my picture! The publisher wanted me on R4, Good Morning etc etc. I'm totally mortified. Not in a million years.
I turn crimsom. I saw photos of me having my hair shaved off in front of hundreds of people when we were raising money to buy dd a peice of equipment and I looked like a tomato
dd can go, she'll enjoy the fuss.

OP posts:

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