Aspergers/Autism/Sensory Integration Chatter

[maz]

Id get them to 'find' the best in Sydney before you head down there hon...make them work for you use the line babe

[~Saram~]

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.

[christy]

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.

[~Saram~]

Hi Christy,

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)

[~Raven~]

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!

[christy]

Thats great, I will store this up in my mind. Matilda has to be first as well. She kicks and hits the other children if they get in front of the queue to get into her classroom. Her teacher said to me a few weeks ago that it is very important for Matilda, sometimes she stops playing when she sees the teacher walk outside with the bell to run to the classroom. Sometimes she stops playing 20 minutes or so early in order to stand at the door to be first.

[~Saram~]

The Sue larkey conference had a little section on our 'firsties' (Xander also likes to be first although they have been working on it) Things like "first of the next group" or numbering 1,2,3,1,2,3 and we have some social stories on learning to lose also if you need them.

We , actually I had a bit of a teary moment the other day. His early intervention teacher dropped round an invitation to a Christmas Party ... for special needs kids, you know the Golden Casket one. It was a bit of a shock to find us in that category if you know what I mean. At first I just thought no we won't go that's for kids with real problems but then I realised how much he misses out on and how much fun he will have and we can meet some other families on the spectrum so I think we might go - unless I chicken out.

[maz]

Matilda has to be first as well. She kicks and hits the other children if they get in front of the queue to get into her classroom. Her teacher said to me a few weeks ago that it is very important for Matilda, sometimes she stops playing when she sees the teacher walk outside with the bell to run to the classroom. Sometimes she stops playing 20 minutes or so early in order to stand at the door to be first.

We had the same **** with Wilhelm.
The teacher and I stratagiesed together to start a 'school rules' and a 'home rules' thing.
So the school rules are we dont touch ANYONE, kicking is not one the school rules ect.
Home rules - keep your hands to yourself or I WILL DO TO YOU as YOU do to ME. As hard and horrible as it sounds....if Wlhelm hits or kicks us...we did it back. It only took 2 go's and he hated it. Now he tell's us hands to your self.
We also have to be firm, if its a no answer to anything...then its no, even with crying and carry on. 3 warning and then its time out.

OH OH I went to a Richard someone seminar years ago and he said that kids on the spectrum need a 'cave' were they can pick them selves up after meltdowns ect. Soooo we bought an egg chari from Ikea, its the chair that has a roof thing that pull's down and he can block everything around him. We use it successfully. To start with Wilhelm was in it 2 - 3 times a day and now we're lucky to use it once a week.

Barbie - im gonna have ot use that line next time. I butted heads with Wilhelms teacher so many times this year...until she finally understood him for HIM. Love that your son found a friend so easily...it makes your heart melt doesnt it.

Thats what I love about our kids...they dont see colour, age, disabilities as a barrier...they see the person within and respect them for who they are not what they are.

Fiona - Ive already told you what I think....in all honesty the longer you leave it the harder it is going to be to get the help he needs. the younger children on the spectrum are the better it is because its like having to reprogram a computer in a sence. Your doing a fab job matie...having a child with anxiety is one thing..but a hubby I take my hat off toyou woman. iN the mean time...write everything down...it may not look good on paper but it hits home and helps when you go to meetings ect.

Tan - yourve done the first thing so many of us are worried to do....admit something is not quiet right with our child. Raven is spot on with what she said. I took a different approach as Wilhlem as 2 when I begged for help. I went to my doctor who said he was normal and in the end I went to our MCHN who listened to me and watched and got the ball rolling. She told me what I had to do and go tme in touch with Hume services who are a government department that help mums and bubs like ours. Its in association with DOCS somehow..dotn ask me just glad DOCS is doing good for us . Let us know how you go and make sure if you need to down load...come in here.

We have had a break through!!!! I listen to you beautiful woman's in here and changed Wilhelm's milk to Soy. I got the chocolate flavoured one for school and jsut a normal soy for WIhelm and ****, he is calmer, likes going to school much better. I expected a big melt down as his teacher left last friday but he was cool with it. Totally amazed me. So thankyou so much for the advice girls.

I really am getting alot from this thread...its so much easier to talk to others who are having 'issues' with their Super hero kids and can nod in agreement and simpathy with you all.

Thank you all for making me and Wilhelm feel 'normal'