Aspergers/ASD support thread

blue_monkey_2

Hi everyone,

I didn;t post for a few days and it looks like I have missed loads of news, sorry. Welcome dk67, you have not failed as a parent as you have been doing you can to help your son, it is 'the system' that has failed your son, not you so please do not think this, although I do know how easy it is to do that.

Snaggles, great news that you now have something to go on and you can help Ryan with more explaining as you have done. It is the start you have been looking for and I can undertand a whole range of emotions coming through.

Nothing much this end, the council came around yesterday and the situation is still the same so it looks like we just have to wait for an eviction date now (takes 3 months I have read). So that is that.

I got the book through I ordered and it is rubbish - very American and very aimed at kids aged 10 and above, 2 pages on kids of Ryans age and all it says is when they have a tantrum to hold them down until they realise time out is over and they have calmed enough to so time out. Yeah right. So that is one for the cupboard later. Does anyone have suggestiosn for me on what I can read. I have had a little look and it is more focusing on the behviours dispute side, nothing about the agression and tantrums so I am guessing this is going to come under the Autistic side - and who thought this was going to be clear cut, LOL!!

So, that's all from me really, thought I would catch up, have a friend coming over for lunch so best run as they will be here soon. Bye for now xx

fallen_angel_69

hi blue monkey just quick note on way to school now again seem to have moved in had review yesterday with head dd2 getting one more extra day of help so that 2 she's got he know's that i gone to lea to get statement and he say's someone is going in within couple of weeks to assess her and cass are going back in as well

guess what arrived in post about 10mins ago (post getting later and later) signed panto programme for dd2 and an e-mail from customer services asking for my phone number to ring me back as it will be better to discuss what i had to say in my e-mail to them

Chollita

Well, it maybe won't surprise anyone that the shrink doesn't think I have AS. It certainly didn't surprise me that was his opinion.

Result? 'anxiety disorder', prescription for more meds and 'come back in 6 weeks'.

Maybe I expected too much from a first session, but to say AS is unlikely because I have a boyfriend, and am not a mathematical or musical genius, seems a bit dismissive to me. Surely it would take more than an hour to diagnose AS, especially in someone who is not using their first language?

I expect doctors hate self-diagnosis, but he didn't even ask me why I think I have AS. I know I may be wrong, but too much seems familiar to me.

Not really sure where to go from here. Even BF thinks I shouldn't be posting here, and doesn't want me talking about it.

justontime

fallen_angel_69 wrote: »

guess what arrived in post about 10mins ago (post getting later and later) signed panto programme for dd2 and an e-mail from customer services asking for my phone number to ring me back as it will be better to discuss what i had to say in my e-mail to them

Fallen angel I am sorry that your daughter was so disappointed about the way John Barrowman behaved when she met him. Hopefully she will be pleased with her signed panto program and maybe writing to him at the address already posted will prove more successful. I think it really depends on the celebrity and how comfortable they feel at these signing events. When my son was going through his James Bond phase he became obsessed with Honor Blackman he was about 8 or 9 at the time. He pestered me to take him to see her at Collectormainia, I was either mad or stupid, but I agreed. It cost a fortune because you had to buy the photo to have it signed but I was very impressed with Honor Blackman. Perhaps she sensed that my son was a bit 'unusual' but she was very kind to him and she posed with him so that I could take a photo. It was all over in a few seconds but her reaction meant so much to my son. It was my first and last trip to collectormainia because I found it really difficult, very noisy and crowded and son spent most of the day wearing a huge wolf mask - at least it made him a bit harder to lose than usual!

My daughter (who doesn't have AS) has been a fan of Rupert Grint (Ron from Harry Potter) since the first film. She wrote to him via his agent and decorated the letter with lots of little drawings to make it stand out. Some time later she got a personal hand-written letter from Rupert. Of course we cannot know for sure that it was written by him, but she was convinced and she still treasures the letter. I guess it is just luck, some celebrities have more 'people skills' than others. Maybe it would be worth your daughter sending a picture with your letter to John Barrowman's agent. I hope you will get a good result.

shazrobo

bluemonkey, was the book a good one for older kids with behaviour tantrum issues, as i've been looking for a good book, mine are nearly 13, and getting bigger each day, and i need to find new ways to cope with them
snaggles, well done on getting the diagnosis, hopefully now the school will give ryan more support

Snaggles

rovers wrote: »

Hi Snaggles, so glad the waiting is over for you. You, as his mum, already knew the diagnosis but hearing it is weird. I didn't think my son was ASD and resisted it as his symptoms could be put down to other conditions. Having that face to face meeting made all the difference and made us accept that our little boy does have Asperger's and has made coping with his outbursts and different ways so much easier.
He's been seeing professionals since he was 18 months for one reason or another and this was the first one who 'got' him. Everyone else said he was an enigma, they'd never met a child presenting like he was then suddenly at 7 someone understood him.
Hope it makes it easier for you too. How has his dad taken it?

Thanks - I hope the diagnosis will help - I'm sure it will bring a whole new set of problems, but I feel better equipped to deal with them.

His Dad has actually taken it quite well. It has been a battle to get him to accept that there was a problem, and he has been quite withdrawn, and at times quite angry. But he is being really good with Ryan now, and I think he shares my feeling of relief that we have finally got some answers.

I'm so glad you have found someone who understands your son, it makes the world of difference when they find someone they can relate to.

I had to laugh today - I was tidying up and I had some bits and pieces that didn't really belong anywhere - Ikea catalogue, instruction manuals, that sort of thing. I put them in a pile on a shelf, and Ryan told me it 'wasn't a very elegant solution'!

Snaggles

Chollita wrote: »

Well, it maybe won't surprise anyone that the shrink doesn't think I have AS. It certainly didn't surprise me that was his opinion.

Result? 'anxiety disorder', prescription for more meds and 'come back in 6 weeks'.

Maybe I expected too much from a first session, but to say AS is unlikely because I have a boyfriend, and am not a mathematical or musical genius, seems a bit dismissive to me. Surely it would take more than an hour to diagnose AS, especially in someone who is not using their first language?

I expect doctors hate self-diagnosis, but he didn't even ask me why I think I have AS. I know I may be wrong, but too much seems familiar to me.

Not really sure where to go from here. Even BF thinks I shouldn't be posting here, and doesn't want me talking about it.

Hi Chollita

Sorry your appointment didn't go as well as you hoped. Keep an open mind but don't let him dismiss your concerns. Perhaps make some notes about the things you are worried about and take them with you next time.

And please do keep posting, it's good to have people to talk to when you are going through something like this.

D&DD

I have a vast library lol..I'll sort the kids out then add a list on the thread with a vague review of how good they were if that'll help???:D

*think at last count it was about 27...:o *

D&DD

1/how to live with Autism and Asperger Syndrome
Excellent book one of my most referred to lots of info right from the early years onwards.Coping strategies,behaviour etc
2/Asperger Syndrome and difficult moments
Recommended by our psych and worth every penny.Very helpful in helping spot a meltdown coming,causes and triggers and strategies to help deal with them.
3/The explosive child...
Recommended by my speech therapist lol...
Very good strategies and examples of behaviour which is helpful
4/unraveling the mystery of autism and PDD
Really interesting book written by a parent this book got me interested in the theory behind 'the diet' and tells you of her experiences of many different therapies
5/Thinking in pictures
Written by Temple Grandin and excellent (but a bit hard going in places) Written from an autists view.Temple is a gifted scientist and lectures widely on Autism.One very clever lady :T
6/When the brain can't hear
Auditory Processing Disorder affects my son very badly and this book explains it very well.It has a lot of info on how to help someone with these difficulties.
7/10 things every child with autism wishes you knew
I opened this book and welled up :rotfl: I'm such a wuss...It is a fascinating read and well worth trying to get hold of
8/children with starving brains
God, took me 3 years to get hold of this book but well worth it when it was reprinted last year.Very scientifical lol..a lot to do with the diet.vitamins and supplements etc but a very interesting read for those into this sort of thing
9/Like a sound through water
Another about APD from another parent very good
10/Voices from the spectrum
I bought this for my other boys to read and its helped show them every family is different but a lot of things that happen to us are the same..
11/I am special..introducing children and young people to their ASD
Just got this and its excellent as its in workbook form with plenty of information in it too
Says for use 10 upwards and is a little advanced for my boy but its very good reading
12/sensory perceptual issues in autism
very relevant to a lot of my sons sensory processing issues just reading it at the moment
13/the boy who loved windows
another families experiences
14/a friend like henry
The book 'After Thomas' dvd was based on..I sniffled/laughed and cried my way through this in a night!!!Wonderful uplifting read
15/how to be a velvet bulldozer
Great book written by an parent in the UK *whoot* about the SEN system highly recommended!!!!!


I have a lot of others including Daniel isn't talking,eye contact,the worm in the bud trilogy,the curious incident of the dog etc as I've found useful info in all of these although they are fiction..
I also have multicoloured mayhem,george and sam and born on a blue day if anyone needs reviews before they buy just pm me

dk67

hi again,

better day today. son actually spent the whole day at school :j

ok so he hasnt spoke a word about it - but its a step in the right direction.

savvy sue - the IPSEA idea is brilliant. will definately do this. and your comments about the stats - must admit this has occured to me too!

great to hear about evryones days - thanks for the welcomes

DD&D - what a library! wow