Yes Christy a referral from the Mater to somewhere down in Sydney would be handy... it would be good for them to give you a copy of their files/records to take with you...
I've got the OT assessment at least with the diagnosis of SPD and I have the physio report with the low muscle tone and right sided proprioceptive deficits. So at least I have those. They have said they will compile stuff to bring with me and post it to me, so hopefully that will help.
Oh Chrsty - that is cr@p! I can't believe they suggest you start again down south! grrr dr make me mad. Ditto on making them find you a similar program down south AND get them to send Matilda's file. We get copies of all Xanders assessments and corrospondance between prof. as we move so much, I want a comprehensive file to take where ever we go - we call it the X file :-)
Mel - You sound like where we were about 2 yrs ago. DS was exceptionally bright and the light of our life. Occassionally we would pick him up from daycare and they would say he had a sad day but no more was said. When DS was 4 we applied to get him moved up into Prep early (change of age rules in QLD meant otherwise he would repeat kindy for 2 1/2 yrs) His kindy teacher then told us she wouldn't recommend it as socially he wasn't coping. This was news to us! He never ever had a tanty - not even during his terrible twos, however we know now that that ws simply because we had such an ordered routine at home and school that he was rarely under stress. With the move to Townsville and with him getting older and lots of changes to routine (new baby, me not working) what was quirky, cute and gifted became odd, disruptive and a concern. I think one of the big things was a lot of his quirk that were acceptable at 2-3 were no longer acceptable at 5-6. Although we had seen the MCHN at 1yr and 2yr when he was displaying strange things like no language, obsessive about order of toys and set out of his room etc we were told not to worry and it seemed they were right, he did begin to talk eventually in great huge sentences (although hard to understand) He now talks incesently about what ever his current obsession is. He still has meltdowns when the order and routine or rules of his world are challenged but the label of Aspergers has honestly set us free. It has helped me to understand his world immensly!!! When you read about sensory processing or listen to someone else who has autism (try aspect dot com dot au) you can understnad just a little of what their world is like, and it's not bad, just very different to how we understand the world - and they are very happy living in their world so really its just us that have the probelm :-) (or so I've been told by a lovely lady with aspergers) I completely agree with Maz, you do need to give your self time to grieve about what it means to have a child on the spectrum but... Xander is still the light of our lives (along with his sister) he brings us hours of joy and amazement and has really opened our eyes to the world around us. (oh sorry for the huge post - I think I have a bit of aspergers too :-)
Yes we are all for ASD playgroups too!!! Xander and his cousin are both on the spectrum and even though there is 5 yrs age difference they get on like a house on fire. I think it's great to catch up with other parents on the spectrum as they understand your kids and I'm not constantly apologising or managing DS behaviour.
We have had an interesting start to the week with the birthday party on Sunday. We lasted the whole 2 hrs without a meltdown! we had a few close calls but we made it and had everyone just packed up and gone home when they were suppose to it would have been excellent but... we lingered and disaster struck, he tripped over a rope and that was the straw that broke the camels back. Since going off dairy he is hypersensitive to pain and just lost the plot, his friends were very understanding but not the best in building relationships. Monday we had a relief teacher and today the bookfair so he is boucing out of his skin at the moment. Fingers crossed for a more settled end to the week.
I've phoned a few places so far. I've got Matilda on a public OT's waiting list which is my first step. The Autism Australia is located 150 metres from our new house, BUT.... and a huge BUT... its $750 for the assessment. The wait is until January, I put her on the waiting list today anyway. For public assessments which I have her on the waiting list for... April. So its a matter of what to do and how we are financially after the move.
i have seen the autism assessments costs too and baulked at it but honestly we have paid way over that in OT assessments, Speech assessments and paed appointments going private (waiting lists are too long in Townsville)
Christy thought of you after I had a meeting on Thursday with Masons aide, teacher and principal (called PSG - Program Support Meeting).
He has been kicking other kids and they think that is because he doesn't know how to join in and play and can't get any words out due to his anxiety about that social pressure stuff. Made me think of Matilda running up to her friend and punching him.
They are going to work on creating play scenarios with groups of other kids which will teach him how to join in. He responds really well to that kind of therapy and the goals that were set for the last meeting which were waiting his turn and learning to lose (one of his big issues was he had to be first at everything) have been achieved after one term!
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use the line babe
You sound like where we were about 2 yrs ago. DS was exceptionally bright and the light of our life. Occassionally we would pick him up from daycare and they would say he had a sad day but no more was said. When DS was 4 we applied to get him moved up into Prep early (change of age rules in QLD meant otherwise he would repeat kindy for 2 1/2 yrs) His kindy teacher then told us she wouldn't recommend it as socially he wasn't coping. This was news to us! He never ever had a tanty - not even during his terrible twos, however we know now that that ws simply because we had such an ordered routine at home and school that he was rarely under stress. With the move to Townsville and with him getting older and lots of changes to routine (new baby, me not working) what was quirky, cute and gifted became odd, disruptive and a concern. I think one of the big things was a lot of his quirk that were acceptable at 2-3 were no longer acceptable at 5-6. Although we had seen the MCHN at 1yr and 2yr when he was displaying strange things like no language, obsessive about order of toys and set out of his room etc we were told not to worry and it seemed they were right, he did begin to talk eventually in great huge sentences (although hard to understand) He now talks incesently about what ever his current obsession is. He still has meltdowns when the order and routine or rules of his world are challenged but the label of Aspergers has honestly set us free. It has helped me to understand his world immensly!!! When you read about sensory processing or listen to someone else who has autism (try aspect dot com dot au) you can understnad just a little of what their world is like, and it's not bad, just very different to how we understand the world - and they are very happy living in their world so really its just us that have the probelm :-) (or so I've been told by a lovely lady with aspergers) I completely agree with Maz, you do need to give your self time to grieve about what it means to have a child on the spectrum but... Xander is still the light of our lives (along with his sister) he brings us hours of joy and amazement and has really opened our eyes to the world around us. (oh sorry for the huge post - I think I have a bit of aspergers too :-)
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