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My Top 5 tips for dealing with ASD are.....

(22 Posts)
mum2fredandpudding Fri 03-Jul-09 16:18:44

OK. This is a pretty selfish thread. I'm new to it all and don't have anything to give that you probably haven't heard elsewhere. What I really want is YOUR top 5 tips. There is so much wisdom out there, I love the little snippets that pop up here and there. I'm just hoping to find a few more!

My 5 are very much about me:

1. Don't sit around waiting. We spent 6 months liesurely waiting for a dx (lucky to get one, appreciate that!) when there were 1000 doors we could have been knocking on, 1000 books we could have been reading, 1000 ideas we could have been implmenting without the formal dx. The fact that a man in a white jacket may or may not decide that your kid is ASD is a bit irrelevant - in that if you have concerns that your kid has ASD traits, chances are some of the ideas and the therapies WILL benefit your child regardless of dx.*

2. Where they are on (or off) the spectrum is not a big issue to work yourself up over. The have problems but they have so much potential. Just get on with it.

3. Become the most fun version of yourself you can dream up. In the month since dx and teh arrival of 'Silly mummy' DS1 has come in leaps and bounds in seeking me out, wanting to engage. Its lovely [swoon emotion]

4.If your kid won't stop playing in the toilet bowel, put a lock on the door.

5. If you need help/advice/support type, I recommend the SN page of mumsnet. Some lovely ladies on there grin

*granted some of these therapies do require a dx to get access, but my point is that it is now obvious to us how much we could have been doing ourselves whilst we were waiting.

ps. almost 5pm on a friday evening. time for the first glass of wine i think.

silverfrog Fri 03-Jul-09 16:26:29

posting quickly, as have to go and do tea, so will just put my top tip:

don't sweat the small stuff

if it actually doesn't matter (as in, which socks are worn, which plate is used, which order you all get in the car) then don't have a battle over it. it's just not worth it. save oyur energy for the ones that do matter.

othermother Fri 03-Jul-09 16:31:22

Deffo agree with not sweating the small stuff.

My top tip is don't fret about kids licking things...they'll grow up to have an amazing immune system grin ('m slowly relaxing about this now, but still find it difficult at times cos of my emetophobia)

anonandlikeit Fri 03-Jul-09 16:44:02

1.get tough skin, you'll need it dealing with all the profs involved

2.Drink wine

3. don't forget to take care of yourself & then you can take care of you dc

4.Drink Wine

5.Laugh, its better than crying !

StarlightMcKenzie Fri 03-Jul-09 16:51:59

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bubblagirl Fri 03-Jul-09 16:54:02

lol anon

1- pick your battles
2-accept your child for who they are
3- stop comparing
4-stop trying to make your child act different to fit in they will be loved for them
5- have fun even if really sleep deprived

and take time for yourself as anon said drink wine lol

bubblagirl Fri 03-Jul-09 16:58:31

remember your always doing a great job

stare blankly with smile on face if listening to same thing being said over and over again look interested

dont shout if you are asked to name 180 car characters for the 100th time that day [and bargain out with an offer of a fruit shoot and bag of hula hoops}

look like your coping to the world even if you have had no sleep greasy hair and bags under your eyes

dont be afraid to come on mn and rant and cry and laugh

be proud of you and your child for every small milestone they reach even if so far behind peers its huge dont let anyone else make it out not to be

PeachyTheRiverParrettHarlot Fri 03-Jul-09 17:05:17

Lifted others to include on my list

Pick your battles

Pick your bottles wink

Get into the sn world; meet people online, at groups, sn sports. They will now infinitely more about sn life and what isavailable than any professional.

Stop caring what people in professions think of you for chasin them: we feel they're thinking oh no not her but its often 'good on her, I'd be the same'

You didnb't choose this, you areding all yu can and that's all anyone an do. Learn to not balme yourself, not expect to be supermama and tot ake time. That may be a cup of tea or a health spa, but whatever makes you feel human is worth it

YOu can lose entire years of childhood to fighting and battles. Remember to enjoy it as well, it goes too fast.

sickofsocalledexperts Fri 03-Jul-09 18:28:00

Set your expectations high, don't let others keep them low - why shouldn't he read, write, have friends etc. Ok so you won't always achieve them, but aiming high is better than settling for less imo

accept that they are also a child, not just an autistic/SEN child - this means they must have downtime and fun, but also boundaries. It is NOT ok to flood the bathroom 5 times a day! It is not part of his autism, or at least it may be , but it is not acceptable!

have your own space and your own time to keep you sane. Lock them in their room if you need that space. Have a glass of wine or a fag. Mum's sanity is as important as child's needs

give them their dignity - things like toilet training and dressing cleanly, learning to dress themselves etc

get your legal rights for your child in as determined a way as possible, but always be scrupulously polite so that they can't fob you off as a "mad mum"

misscutandstick Fri 03-Jul-09 18:59:42

OMG silverfrog, are you hiding in my house watching DS4???

1. LOOK at your child and SEE your child. He/she is not a label.

2. have something to look forward to at the end of EVERY day.

3. cut annoying crap out of your life (tasks or people grin). Ironing is NOT essential, pre-chopped veg definately IS grin.

4. Have PMM and be VERY proud of them!

5. IM NOT religous, but look around and find so many wonderful things (beautiful flowers, intricate snowflakes, pretty rainbows, animals that allow themselves to be seen risking their life just to show you how fabby life is) just to step out of a world of hum-drum paperwork even just for a moment.

StarlightMcKenzie Fri 03-Jul-09 19:20:59

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mumslife Fri 03-Jul-09 21:42:54

Message withdrawn at poster's request.

PeachyTheRiverParrettHarlot Sun 05-Jul-09 10:16:51

I do agree you should expect a lot but I have found that the best informnation is the truth. The one thing I loathe (apart from lying- more on that in a mo!) is when people give us quite evidently wrong info in the spirit of supposed kindnesss 'Oh he's fien at school, mixes all day and happy', 'kids on the spectrum suddenly come on massively'- and yet you have the OT saying your child won't mix in the school, the Governor (a friend) tipping you off that your child cries all day and your own eyes telling you that he isn't going to suddenly moce so far along the spectrum that it goes away.

Accept that people lie to you! The LEA make it up if they think they can stall you (X unit will close don't move him / statements can't be awarded before the age of 5) and SENCO's aren't immune either (I applie for a statement last year and he was refused sorry- er no, you haven't even popped him on the register of SEN have you? We checked)........

Don't think you are going mad, instead accept that the service is massively uinderfunded and people do what they can to gatekeep their time and budgets, however odious their methods seem. This si triply so if you appear half caring or able.

By the same token, admit when you are struggling: as a Carer you have a right to a SS assessment etc, and you should join carers UK also- the worst thing for your child is if you get ill and cannot cope so anything you can do to prevent that is important

Seuss Sun 05-Jul-09 10:32:55

1. When times are tough remind yourself that it's not always so, think of a situation you have overcome before to remind yourself how strong you can be.
2. Be very positive about the good stuff.
3. Take any help on offer, even if you don't think you need it now you may at some point in the future.
4. Take up any invitation to activities/groups and get involved to keep such things going.
5. Develop a hard stare.

Oh help, I need a 6. Beer.

mum2fredandpudding Sun 05-Jul-09 13:51:16

i love this thread. i've read it about 4 or 5 times whilst humming the theme of Rocky in my head.

if people have points 6,7,8,... 423 dont hold back!

StarlightMcKenzie Sun 05-Jul-09 14:01:31

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mysonben Sun 05-Jul-09 14:32:43

1. patience, patience ,patience!!!

@.get as much info about asd in order to understand your dc better.

3.take each day as it come, it can only get better when hitting a sticky patch.

4.Talk to people, get involved , if you have worries seek help.

5.try to keep a sense of humour , have a good laugh and try to "ignore " others non helpful comments! (hard to do wink)

sickofsocalledexperts Sun 05-Jul-09 15:43:46

ok, my 6 7 and 8 and 9 are

- no-one else will really understand what your life is like, unless they too have an autistic child. So don't necessarily waste your breath trying to explain that "no, their child isn't hyper in the evenings just like yours, as it is on a very different scale"

- people don't really want to face up to the fact that your child has autism (esp. some members of family) and so will look for a way out: "maybe he'll grow out of it" "maybe he'll have a special skill like painting or piano-playing" "maybe one day he'll just start talking and we'll realise that's he's been noticing everything but just not commenting"

- most people unaffected by autism have not a clue what it means. The brave ones are the ones that say "I have no clue what autism means, can you explain it to me"

- you love your child as much, if not a little more, because of the autism - like a tigress loves and protects a wounded cub

StarlightMcKenzie Sun 05-Jul-09 16:05:39

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StarlightMcKenzie Sun 05-Jul-09 16:09:15

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HecatesTwopenceworth Sun 05-Jul-09 16:12:55

1 - enjoy your kids and love them for who they are.
2 - don't bother comparing them to nt kids. It's pointless.
3 - let your sense of humour really develop. grin
4 - chill.
5 - just get on with it and don't bother with bitterness and all that shit that drags you down.

daisy5678 Sun 05-Jul-09 21:16:43

This is possibly my favourite thread ever,and will now go away and think of mine!

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