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Here are some suggested organisations that offer expert advice on special needs.

Back in the system again...

5 replies

Onebigtwosmall · 12/03/2015 20:23

Hi, I've been a long time lurker here and thoroughly enjoyed myself laughing, crying, sympathising and getting the info I needed.
I think I may need some support in the coming months going by the experiences of a lot of mums on this board.

I'll try keep it brief and not bore you all to death...I am good at rambling!
DS1 (middle child) 10yo has had issues since birth, we and others suspect Aspergers (I know the term isn't used anymore)
Struggles at school, from 'low level disturbance' to refusal to go and meltdowns leading to restraining by usually 3 members of staff.
Difficulty maintaining friendships, not been invited to 'whole class parties' in 2/3 years.

A year behind at school because of health issues when in nursery
Sensory issues - the usual - seamless socks, no labels, hates other people eating food he doesn't like, smells, touch unless he instigates it etc
Huge meltdowns at home too, can last a couple hours
Monotonous speech on subjects
The list goes on

Anyway, 2nd time around we are expecting a Camhs app next month. Last time at ASD clinic they said he ticked a lot of boxes but not enough for dx.
We have good support through a behaviour and parenting worker who has reinstated his CAF. She is now a family friend through our contact and she was the one who suggested he be assessed again as she sees a lot of ASD kids and DS1, to her, seems very ASD

My question today is, how can we prepare for the appointment to get as much out of it as possible? What should we say/not say? I tried v hard last time to show them that as parents we had spent a lot and I mean a lot of time helping DS1 to cope with the outside world, coaching him, teaching resilience, manners! and coping mechanisms. I'm afraid that this will 'mask' a lot of his behaviours/traits in the assessment because he is a very polite child (at times!) and wants to be liked/accepted/like others.
And any other support will be greatly appreciated in the coming months!

OP posts:
2boysnamedR · 12/03/2015 21:32

Never been seen by camhs but I guess the usual rules apply like taking a diary of behaviours. If you can, record some things that maybe he only does for you. Look up ASD and traits and get examples of how he ticks the boxes.

Good luck, I hope they are good

Ineedmorepatience · 12/03/2015 21:39

I had a copynof Tony Attwoods's "Complete Guide to Aspergers" which I covered with post it notes with examples of where Dd3 met the criteria and what issues and difficulties she had that match those written about in the book!

Also kept a diary of issues, what caused them (if we knew) and how we managed them (to show consistency).

Good luck [flowers)

Ineedmorepatience · 12/03/2015 21:40

Flowers Blush

OneInEight · 13/03/2015 06:22

Welcome to my world! You have pretty much described ds1 and ds2 in Year 4 in your OP. They both have now diagnosis, statements and placement in special schools.

We were not very prepared for the initial appointment but at subsequent ones I took a bulleted list listing the issues and giving examples / frequency. It ended up quite long but I used sub-headings so they could skip the irrelevant bits. A good psychiatrist will ask the correct questions anyway but it does help to do the preparation beforehand.

One advantage which we had was that the initial appointment was for both children which gave the psychiatrist the opportunity to see first hand their lack of social skills e.g. talking over each other, not having a proper two-way conversation etc.

I will warn you that in our experience CAMHS was definitely not a magic wand to sort out the issues despite what school thought they have provided us with virtually no help. What has helped is getting support via statementing (now EHCP) so I would really try and get that sorted too. If school are having to restrain him then it is clear they are not meeting his needs.

They will no doubt tell you he is far too academically advanced to get statemented but this is totally UNTRUE so get your application in today if you have not already. It does not depend on diagnosis. ds1 and ds2 did not have a diagnosis when SA was agreed.

On a positive note ds1's ( and even ds2's) behaviour has vastly improved since getting good support at school so there is hope for improvement.

Onebigtwosmall · 16/03/2015 16:46

Hi and thanks for your replies...I'm at work sneakily checking in, but I'll read again when I get home.
The diary and bullet point list is good as is looking through a book for traits. I have Adventures of an Aspie (can't remember title off-hand)

Thanks again :)

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