I am nearly at the end of my mind/tether whatever ATM. Riley seems worse this week, he hasn't been to FDC since before Christmas and Erin has been away so things are out of whack but he is driving us to despair.
He seems to get so overwrought then scream and screams and kicks and hits and won't calm down for ages and ages. Last night he sat behind my bedroom door and screamed "go away" if anyone went near.
Shopping has been difficult too, he seems to lose it really easily there and having my dad tell me that its just cause he's not getting his own way doesn't help. (apparantly I should have "crushed his spirit" by the time he was 18 mths - thanks dad)
I have tried to explain to a good friend about the sensory disorder testing and she says "I really don't think he has a problem" but then in the next breath says maybe i need Supernanny which makes me feel like she is blaming me for his behaviour.
Hi girls
I'm a long time BB member but haven't been around for ages as life has been such hard work. We're dealing with the news that our beloved boy is 'on the spectrum'. Some days it feels like a bad dream that I'll wake up from, other days seem to bring acceptance, others anger, despair and so on. I'm sure you'll know what I mean.
We're seeing our paed again in 3 weeks for the treatment/management plan appt. I'm trying to get my head around the sorts of interventions we can consider so I can try to talk vaguely intelligently and ask the right sorts of questions. Has anyone been doing ABA or the rethinkautism program? I'd love some feedback about those if possible. We've been doing OT with a sensory specialist since last July plus some speech. He'll be attending EI at Yooralla instead of 3yo kinder and has inclusion support at childcare. We're also seeing the head of the children's sleep unit at Monash for his sleep (or lack thereof ) and finally getting somewhere with that. Hopefully more sleep will lead to greater success with his interventions.
I'll go back and read more of the previous posts so I can catch up on you and your stories. I'd love to be a part of a supportive group like BB again.
We don't move very fast in this thread, but its a good place to come for understanding and support. We do not do ABA, only because I don't think it would help Matilda where she is. We are booked in for doing something called RDI, you can have a good google about it . Our paed explained that there were 3 basic areas for behaviour, one was ABA, one was floortime (which is an OT based emotional regulation sort of thing) and one was RDI. There were other things out there, but these are the 3 basic ones. We are doing RDI because we've been doing OT based emotional regulation for a while and thought we'd try something else at the same time. Its basically teaching the parents how to help develop the child relationally.
Sleep is a major thing for most kids "on the spectrum". This week its taken Matilda 2 hours to get to bed everynight... its very frustrating as a parent, but apparently very very normal for our superkids.
I'm up too early, but I will come back again soon.... today we go to the urologist to find out about the ultrasound yesterday.... from my eyes, her kidney is not looking too good, but we'll see what she says.
Hey Blackbird! Welcome to our nutty corner of the woods.
After the last yukky few weeks of the year, xp and I have decided to 'divide and conquer' the kids. He takes DS for a few days to a week whilst I have DD, then swap over so we have alone time with both of them. I feel slightly sucky that I couldn't face so many weeks with no kinder and the both of them together by myself . But then again we all enjoy the break.
I'm really feeling conflicted (or something, too hot to think) - poor DD. She isn't sensory and was a pretty Zen baby....but...well...I can't help but be sad she has picked up the 'bad' side of DS and his tanties and anxiety. She is nearly 4 and I think quite sick to death of always being in the background. I think her starting kinder herself this year will help, she is getting restless like most of them do at this age and I'm glad she will have something all to herself
Mitch has discovered Star Wars, and it's been a life saver. He found a game xp bought for the wii - Lego Star Wars and although I didn't think he should play it the little fella has negotiated his way though nearly the whole game all on his own (i'm no bloody help!). He could play it for days on end, but he doesn't. It's worked wonders for getting him to do other things (make bed, get dressed) first.
He really achieves something on it - there has been a couple of almighty tanties but once I managed to get him to trust himself and to BREATHE...and think.....and let his head cool down, he actually DOES IT!!! So brilliant for his confidence and it's got to the point that he will put the controls down on his own and 'have a break mum'.
He plays about an hour in the morning and an hour in the afternoon. I know it's probably too long but if anyone argues with me they can kiss my shiny white botty. DD gets time with me, I get time to do stuff and his confidence in himself has grown.
Thankfully a family therapist I pulled into the fray has pointed out my plan to enrol DS in Aikido this year was not the way to go. With him starting school this year she thinks it would be waaaay too much for at least the first year and I totally agree with her.
I'm not talking to him too much about school. He is busting to start but if I give him too much info he tends to build up quite a tight idea of what is supposed to happen and if it doesn't work the way he has imagined it will that's where the trouble starts .
Christy - I'm sorry to hear about Matildas kidney, I was positive there wasn't going to be much damage...I still hope it's not too bad. She has been so amazing about it all. Wish you could move to Melb and put her in Mitchell's school. I bet she would love it as much as he does.....and then I can have more of a piece of you! I go to call you all the time...then something happens - you know the drill
My daughter is 15yrs old she has Cerebral palsy, intellectual disability and autism.
I looked into ABA back when I first got my little girl but found it far to expensive for us to afford. I also found very varied results from people I spoke to about it - people were either extreamly happy or very disapointed in the results from ABA.
Just over 12 months ago I looked into diet based treatment for autism, initially starting GFCF with great results and then we started FAILSAFE/low chemical based diet (which works much faster than GFCF) I have since found out a lot of my daughters autism tendencies are caused by dairy. Every child is different but I was quiet impressed to have results with in 1-2 weeks of starting - some people have had major improvements with in weeks and others, like us, found small but impressive results. We are still on the testing stages (had to put it all on hold for 5 months when my daughter broke her leg which caused a lot of muscle problems). You can find out more info by googling either FAILSAFE or Sue Dengate. There is also a couple of books around which go into more details of the program, which needs to be supervised by a dietician who specialises in the diet.
I personally recommend FAILSAFE, I found GFCF is based around FAILSAFE but the tests you need to get are not as accurate because the foods have to be in the childs system in order to test for them where FAILSAFE can be based around the foods you child already eats.
Feel free to PM me for more details.
) and finally getting somewhere with that. Hopefully more sleep will lead to greater success with his interventions. 
. Our paed explained that there were 3 basic areas for behaviour, one was ABA, one was floortime (which is an OT based emotional regulation sort of thing) and one was RDI. There were other things out there, but these are the 3 basic ones. We are doing RDI because we've been doing OT based emotional regulation for a while and thought we'd try something else at the same time. Its basically teaching the parents how to help develop the child relationally. 
. But then again we all enjoy the break.
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