Tell me some GOOD things about having a severely disabled child!

[meltedmarsbars]

The ease with which I handle faeces and vomit

The broadening of my colourful language when trying to push a wheelcahir though snow

My skills at re-programming a feed pump at 2am in the dark

My adept parking of a VW WAV van

Need some more!

Is that all there is?

I am deffo not saintly!

Liking these - especially the physical prowess you now possess! Yes, my weightlifting techniques are superb

muscle's
not only do you end up with big ones through all the lifting......you discover painfull one you never knew existed.
and you get to joint the burden club.
(riven is the boss though)

Perspective: The ability to laugh at what worries the Norms, (what colour Birkenstocks to buy this season; Ordering the latest Boden catalogue etc.)

Skill at filling in forms

Gallows humour

Ability to wipe shit off pubic hair while being hit

multi tasking
you can eat, feed child and talk all at the same time

The other amazing parents you get to meet at hospital/respit. Rejecting the word normal from your vocabulary.

Failing to spell simple words like respite.

decent seats at concerts!

Not getting nagged to buy the latest 'stuff' that everyone else at school apparently has (ds doesn't care what he wears but if it has Spongebob on it, that's a bonus!).

Being able to stay in the warm (save brief waving off of taxi) while all the other parents do the school run.

Always having a ready-made excuse if I want to get out of something I've been invited to.

definitely no pester power (which also seems to have rubbed off on dd2 for now - double bonus!) dd2 was recently chuffed to bits on her birthday when I gave her a Fifi card. that's all she thought she was getting!

no queues at legoland/chessington etc. I shocked my bookgroup into silence when someone was moaning about taking their dc to legoland the next day, and not being able to bear the queuing. I suggested buddying up with a disabled child, as no queuing - bonus! and no one quite knew how to take it

at silverfrog.

I wouldn't class my boys as severely disabled by any stretch of the imagination, but I definitely have the muscles, all the same, thanks to regularly pushing the major buggy with DS2 in while strongarming DS1 the kilometer up the hill home from school while he struggles and tries to run off or sit down.

I'm particularly proud of my sometimes zen-like ability to go to my happy place and be calm and firm when DS1 is arguing with every breath I take. I just wish I could carry it off all the time.

you have an excuse to drink lots.

You can go into a toy shop and not have to bat whingeing children out the way whilst explaning that no you are not going to buy them the latest DS game/Ben 10 piece of tat (although you may have to drag your child away from sniffing people's bottoms).

er

you clear a train carriage when the train breaks down (except for another carer with an adult with LD's and you go onto have a noisy but fun time whilst everyone else is crammed into the carriage next door).

at silverfrog too!

DonkeyDerby, No, I don't miss wondering what colour birkenstocks I should be wearing either - I need steel-toe capped boots to protect me from dd2's erratic powerchair driving!

hey you all forgotten we get a key to the disabled toilets

i get to laugh when ds runs annoying people over with his chair

apparently we get a 'free' car and LOADS of money off the government!

I've only just been given a key by an sn teacher friend- had never got round to it - too busy!

Still haven't used it. Do they have hoists and changing beds?

My DS has ASD but not really severely (MS school with TA) but it's amazing all the things you learn about and the perspective and patience it gives you for other people.

You realise that happiness and success is measured in different ways for different people and appreciate the effort your child makes even if the result is not as hoped.

I also like the way you can notice and appreciate tiny developments in communication skills in a way you never would with a "typical" child.

I think I am a nicer person for having DS, I am stronger than I thought I was and he has definitely taught me alot.

Thanks for this thread by the way - it did me good to think about these things