Tania - we're not too good with identifying meltdowns yet - some we can see coming and can divert (usually if he's had a bad night's sleep we can expect lots of frayed nerves), but some things are so random. Obviously not to him LOL. This morning's toe smashing episode was because he was washing his hands after going to the toilet, got distracted from his routine and wanted to turn the light on and off. With wet hands. Then totally lost it when I tried to guide him back to washing his hands. Part of it was what I call routine divergence stress and part of it was because he was fixating on something which was then denied. In hindsight it's obvious, but who could have predicted that he'd a) divert from routine or b) find something new to fixate from at exactly that point in time, when he'd done exactly the same routine without incidence several times that morning. Other times it's just random frustration which is even harder to predict, he'll be playing happily with a toy or puzzle, it won't behave in the way he wants it to and bam, things are getting flung willy nilly. Usually too quickly to even attempt diversion. The only predictable factor in this is his general mood, often relating to sleep. If he's otherwise having a good day and has slept well, he can cope with more variance or frustration before he loses it, and is thus easier to distract and divert.
Thanks for the hugs guys - really needed it today. I know it will get better, and we've had some great improvement, but it's still really rough at the moment. Kinda feel like everything revolves around Euan and we're walking on eggshells waiting for the next bomb to drop. Mixing metaphors a bit there. Mrsmac - had to giggle at your dad's words of wisdom, it makes mum's comment much more understanding by comparison. What frustrates me is that she's so fantastic with Euan (they have an amazing bond), and would walk on hot coals for him, she's so supportive of how we raise him and what we do, and helps out so unconditionally, and is very keen to learn more about autism, but on the flip side, she'll say or do things that suggest that she really doesn't get it. At all. So I feel really churlish for getting occasionally frustrated, because she is so damn supportive, but... There's always a 'but'.
Sorry I've missed out a few days here! I've been sick which doesn't help.
Remember T? The 12 year old who has SI only just recently diagnosed? Well.... she's staying here atm because her mum just can't continue. She needed a break, so I said T could stay with us.
Suse, its so hard, but as you go you will pick up those triggers and then you have to decide whether or not its worth it.
mrsmac.... M is just out of night nappies. Its been 4 weeks now and she's 6. WOO HOO!!!! So there is hope. JJ is in pull ups overnight .
Us... well we have to go to the USA in a few weeks, so we've been doing social stories about the plane, talking about seeing Grandma in hospital, talking about going to Disneyland. The last few days we've been looking at images and videos of Disneyland so the kids can grasp the magnitude of it before getting there. I just found out today that Disneyland has a special pass for kids on the spectrum or with sensory integration. It basically means they don't have to wait in lines. They may have to wait, but they can have their place marked and go away and come back when they are going to get on the ride. Its awesome.... I'm so relieved.
Christy - I have used those passes before at Disneyland. They are great. You just get them at the information centre. make sure that you bring some sort of proof of her disability, as she doesn't have a physical disability it is not so obvious.
we have been invited to the variety Club Christmas bash. Is anyone else in Melb going?
also has anyone else got a companion card? I have extra copies of the paperwork here if anyone needs it.
I should add - Not everyone here will qualify for one. J does not qualify, but I use them at work
I have some of those hospital bracelet type things for our trip to put on the girls in case of wandering. I think I will go and have the GP and her OT write me a letter to carry in my wallet for airport security etc, jic she has a meltdown and we need to do something about it.
I found the best thing for Disney etc, was to put a sticker on the kids back with a telephone number. It doesn't say their name, just a number to contact you on. I also noticed people had written a mobile number on their kids arms in permanent marker. Again a good way to help if a child gets lost.
A companion card is for anyone who has a permanent, life long disability. It is for people that will always need assistance out in the community. It is not so easy to get for young children. It basically means that if you access places that incurs a cost (like public transport, zoo's movies etc) the carer who is assisting the person with a disability can get in for free.
My DS Aidyn is 6, and finishing up grade 1 this year. He was diagnosed with high functioning autism when he was 4.
I've been off the forums for so long, but I'm on uni holidays now, and realising how lonely and isolated I feel... would love to be able to connect again with people that understand what its like...
At the moment the main problematic issue I'm having with Aidyn are the interactions between him and his sister (she is nearly 3). He just has no patience for her, and when she gets in his way its constant screaming... and I mean constant and persistant, yelling, wailing, screeching at the top of his lungs. This in turn can escalate in physical fighting. He just cannot handle her - even if she comes remotely near to what he is playing with... and in turn I am tearing my hair out because I can't leave them alone for 2 minutes without all hell breaking loose. I'm finding myself getting more and more frustrated, and less patient with both of them...
I actually have booked an appointment at a new Triple P centre which has opened up just down the road, with a psychologist who specialises in ASD. Both me and XP are going to go together, because we are both having the same issue, and recognise that we need help...
Otherwise Aidyn is actually going really well... He goes to a primary school which has a SEU that specialises in ASD, so he recieves so much extra support at school, they are just SO well set up for kids like him. Throughout the year he has actually progressed to not needing so much specialised time in the SEU and is spending the majority of his time now in the classroom (there are a couple of ASD boys in his class, and always extra support teachers). He has a best friend (another gorgeous little boy with Aspergers), and can play happily with other kids too. He holds himself together really, really well at school, but it when he gets home (actually the minute we leave the school gate) that he just lets go and his anxieties and frustrations will get the better of him.
Anyway, thats enough from me... I'm going to read back a few pages in here to see where everyone else is at...
A quick one for you Ambah - I have had these same issues for a long time now. We have a new OT who is treating another child for EXACTLY the same thing. We are slowly incorporating their relationship into ALL the other stuff we do with DS.
It's huge, I can't leave the room either....now DD is 4 she likes to trigger his meltdowns as some sort of revenge errrrrrk!
Suse, its so hard, but as you go you will pick up those triggers and then you have to decide whether or not its worth it. 
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