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My Top 5 tips for dealing with ASD are.....
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(22 Posts)
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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
*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.
This is possibly my favourite thread ever,and will now go away and think of mine!
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.
4 - chill.
5 - just get on with it and don't bother with bitterness and all that shit that drags you down.
Oh, and an important one for me:
Don't lose yourself in Autism World!
Analyse the effectivesness of everything i.e professional, type of therapy, SALT, SN class and ditch anything you don't believe to be worth the effort, ignoring what anyone else thinks. Perhaps administer a warning first that you are about to cease their service so they have an opportunity to improve/get training/refer you on.
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
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
)
I have another:
Record every phone call/contact etc. and outcome so you have evidence of how hard you have worked and how much of your work has paid off. It is easy to get frustrated by all the things you think should be happening that aren't, but if you look at your list you will see all the things that ARE happening, that wouldn't be without your effort.
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!
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.
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
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