Here are some suggested organisations that offer expert advice on SN.
What has having a sn child "Taught" you?(33 Posts)
A sense of humour is an essential tool to get through the day.
A good HCP is worth their weight in gold.
A Statement is worth its weight in platinum
Even a small step means a huge thing
A true friend is one who sticks around
In laws can be barmy and put it all down to "just a phase"
Even though I was devastated by dd dx,she will always be the best daughter I could ever have.
Mumsnet sn board is great for a rant
To be about 500x more patient than I was before.
To celebrate tiny successes.
To smell poo from a great distance.
To strip and remake a bed, clean a carpet, bath a child and load the washing machine in ten minutes flat following the above.
To scan a food label faster than the speed of light
To devise 20 different meals that look exactly like a shepherd's pie or a fish cake.
That parents of kids with SN are absolutely the best source of information, support and advice around.
that you need the patience of a saint and a good sense of humour
that most schools should be firebombed....(ok so not really but thats sometimes how i felt when DS was going through school!)
that lack of sleep drives you mad
that melatonin saves sanity!
and wine is a staple food stuff if you live on it for long enough.
that choclate helps and should be in food group of its own along with the wine
And who needs suncream now have skin like a rhino
that i can see world two ways
have felt what unconditional love is
to learn who are friends and who are not
to know real joy is over all small achievements not just the huge ones
to be more considerate of all people
That other people can change.
Schools can change.
Doctors can change.
It takes endless patience, but then...they're only little.
To fight for everything that they need
to have the patience of a saint
to live without many Friends
to function without many hours sleep
He has also made me a much stronger person who isn't frightened to tell people what I really think and bugger what they think.
Not to make any promises that you don't know if you'll be able to keep, just because you sense that that's what the other person/school wants to hear. If you don't know, you don't know. End of conversation.
To pick my battles and word them very carefully.
To not care what others think or worry about the looks you gets.
and that weeing up mummy's back in the bath is a great source of amusement.
It's just given me a sense of the yardstick.I'm ashamed to say that before i had a sn child i had no real idea if it at all.
To see the child, not the label.
To try with every ounce of strength I have not to compare (still working very hard on that one as it doesn't come easy )
To appreciate every little milestone achieved and bask in the pure joy it brings.
To have faith in him even when he/others doubt him.
To not doubt yourself even when others do and persist for the help you need.
To remember that even on your darkest/hardest day that someone somewhere is going through the same, if not worse.
To seek help, advice and most of all companionship with other mums with SN kids, they are the best
To enjoy the 'now'. I spend so much of the day worrying about the future that I forget to live for 'now'.
Oh. You didn't mean 'an encyclopaedic knowledge of the railways of Great Britain Including Sodor', then?
couldnt have put it better myself Barmy.....!!!
How important sleep is
How to manage without it
That most peoples' characters stay basically the same, regardless of whether they have a child with SN or not
That some people can change their behaviour and learn from experience and are not always basically the same
That its OK to let go (once you have scrutinised every details of setting/staff etc!)
That its OK to be "over-protective"
That it works to appear weak and helpless sometimes
That it works to be demanding and difficult sometimes
That "me time" doesn't have to mean being massaged by a complete stranger. Sitting at home reading Heat and drinking tea is just as valid
That "me time" doesn't have to mean sitting at home reading Heat and drinking tea, being massaged by a complete stranger is just as valid
I could go on
I can now see the world through my eyes and ASD eyes (well sometimes).
That you need to be pushy and you need to fight to get whats best for your child/children.
Don't take anything for granted.
Don't listen to what other people say about your child, i know the dd's best.
Never settle for second best because your child deserves the very best.
Never underestimate a ASD child.
To ignore people that are staring at you as your child rolls around on the floor screaming. .
To multi task.
How to wipe poo off of the walls .
To have a sense of humour.
That there is always someone worse off than me.
That there are other ways of communicating.
To be thick skinned (although i find this hard).
That life doesn't go the way you plan it, and it's not always fair
That it's okay not to be good at everything, it's okay to take your time to learn things, who cares if a child cannot learn to read, write, ride a bike at the right time
I've also learnt how to do my shopping with one hand whilst holding DS with the other so that he doesn't run wild touching everything in sight.
That my DH is the most wonderful man I could ever hope for, we are in it together and he makes sure I know that
I've also learnt a long list of medical terms that I would have never dreamt of knowing
That there are some kind, caring people out there who will go above and beyond what they have to do to help you...and that there are some ignorant, uncaring people out there who won't even do what they're supposed to do because they think that SN is just an excuse.
Also, that different can be good, if only people will try to see it.
I've realised, like others, that my stubbornness is a positive attribute in my role as solicitor, barrister and general all-round defender of J and fighter for his needs. I've realised that I will do anything for J - stuff that I would have shied away from before he was born.
But mostly, I've learned that life is not fair, money seems to matter more than children and that people can be really, really mean
that having sn child has knock on effect with all sorts of other relationships and that it is forever
lots of practical skills
- connecting & disconnecting IV to a central line
- passing ng tubes
- sterile dressing changes
- preparing & giving IV antibiotics at all hours of the day & night. scary...but not as scary as watching someone you don't trust doing it
confidence that I know dd's health needs at least as well as others...but that I really want the consultant's input. i can cope with not really sure (with my dd's illness no-one can be at all sure) but I like to know the options.
Respect for consultants when earned (& lots of ways to get the info to them, bypassing the sho's & registrars where necessary!)
that the support of other parents is invaluable
what to say to make sure the ambulance knows how serious it is
that the things other people see when they look at your child really are invisible when you're their parent...& to remember that when you meet other people & their children
how to survive long term in hospital...& what to do when you get to escape for a few hours
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