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Diagnosis debrief - it's ASD, Jim, but not as we know it

(19 Posts)
LeninGrad Fri 19-Aug-11 19:57:21

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LeninGrad Fri 19-Aug-11 21:46:23

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grumpypants Fri 19-Aug-11 21:48:15

didn't want you to go unheard - read your thread, but have no advice - when we had ds, the GP told me to be guided by the professionals and then we wouldn't regret choices iyswim? hope someone bit more up on things comes your way.

LeninGrad Fri 19-Aug-11 21:51:53

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grumpypants Fri 19-Aug-11 22:31:41

yes, definitely get on top of the LA. Find someone (professional or otherwise) to help you decide what to aim for and then go for it. You sort of need a plan- early days now for the fine details, but iyswim? Mainstream/ HE/ Special etc

LeninGrad Fri 19-Aug-11 22:34:55

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LeninGrad Fri 19-Aug-11 22:36:07

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IndigoBell Sat 20-Aug-11 04:44:42

Do you need melatonin or something to help him sleep?

I know many people on here use it with huge success. Then if you could get rid of your sleep deprivation, everything would be much easier to cope with.

LeninGrad Sat 20-Aug-11 08:50:07

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IndigoBell Sat 20-Aug-11 13:30:14

Well keep pushing for melatonin grin

Good luck.

LeninGrad Sun 21-Aug-11 08:54:55

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LeninGrad Mon 22-Aug-11 11:15:11

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Lambskin Mon 22-Aug-11 15:29:04

So pleased you're getting closer to some sort of an answer. I can't believe how much your ds sounds like my ds (also blonde and good looking wink), there seems to be such a wait between appointments and so much happens/develops or he regresses in an area he was fine in before, it's very confusing. PDA still seems the closest in terms of a dx but when he's having a good day he can seem almost beyond NT if that makes any sense! Then out of the blue absolute chaos and rage and you're fearing for your/his safety.

It's the constant noise that's getting to me at the moment! He just cannot be quiet. On the plus side it transpires that he has a talent for designing levels on Little Big Planet! His db (18) was well impressed!

I wish he'd been able to settle into mainstream ed because that would have made me feel like he would be able to fit into mainstream life, but he couldn't.

It sounds as though you've got everything in place to help him with school, it'll be up to them how good a job they do now.

LeninGrad Mon 22-Aug-11 15:35:57

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Lambskin Mon 22-Aug-11 16:38:35

I de-registered him a week before the summer holidays. They kept telling me they couldn't cope, despite advice from EP, CAMHS, and Specialist Teacher. They used inappropriate sanctions, he hated school and the teachers, most days were full of conflict, and I spent those days on the phone or in emergency meetings. I was going to and from school feeling sick and to top it all he was falling behind academically. I did a maths assessment and he couldn't count on to work out subtraction, or tell the time. He can now. He's 6 btw.

Some things have got better, he'll tidy up his stuff if it's disguised as a challenge and he's definitely able to verbalise what he wants (and how!), but he is incredibly controlling and if he doesn't want to do something he just won't do it. He really thinks he's in charge. We're going to a friend's house on Wednesday for a playdate with a little boy with AS and talking about it last night he said, 'oh I like playing with little children, they're so cute'! They're the SAME AGE!

Sorry, none of that helps you! How does he cope with other children? Do the school understand his anxiety and are they aware of his dx and what this will mean day to day? As long as they understand that they have to use differentiation with the way they sanction and reward and get him to carry out tasks then they'll be streets ahead of my ds's school. You can only take it a few days at a time and see how he goes, and get regular feedback. I think a quiet place to escape is pretty important though.

LeninGrad Mon 22-Aug-11 16:42:43

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coff33pot Mon 22-Aug-11 17:09:49

A woman teacher from a SS visited DS school on the request of a behaviour chap. She gave them some advise on how to deal with day to day issues, visuals etc. When I had a meeting with the Head afterwards to discuss, she pointed out that this teacher suggested he had PDA. This was because all she heard from the school was his refusal to work, refusal to comply and refusal to take consequence. Of course she had no right to pass opinion on either seeing as she never met DS (I had removed him from school at that point) and neither can she diagnose. What schools dont see is how he behaves at home and the other little querks/issues. They are mainly interested in that he can sit down and work alongside everyone else. Social skills are not really their priority.

If you feel that the school havent got anything in concrete placed to help your DS, I would email your info as you said and also make a list of concerns you have that makes you think DS wont cope with the work. Then request a meeting during the first week to first listen to what their suggestions might be if they have any, and then put forward what you would like to see in place. New school term and new class is going to be trial and error anyway. I would also ask for a home/school book with day to day reports. Sometimes patterns develop in them that you can then have another meeting to discuss avoiding or preventing smile I found my sons homebook invaluable for two reasons. First I had an insight into his day that I wouldnt have had from DS. Second it was a great diary of information to take to proffessional meetings. I also photocopied them and forwarded them to the LEA towards their SA.

smugtandemfeeder Mon 22-Aug-11 17:21:49

Ooh lenin, not sure how I missed this but congratulations on getting a detailed diagnosis. My DS sounds very like yours and you have given me lots of advice in the past. DS is very PDA and we often wonder what sort of NHS diagnosis he will get. Your thread gives me hope! I wish you all the best now with finding appropriate help.

LeninGrad Tue 23-Aug-11 08:06:39

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