Aspergers/ASD support thread

Zara33

blue_monkey wrote: »

Something esle though, changing the subject. have any of your children got birthmarks. When Ryan was a baby I thought he had a bruise and it turned to be a cafe au lait mark, we came home and looked at it on the internet and it said that it can be a sign of other problems later on. The mark has not faded and it has grown with him. have any of your children got birthmarks like this at all, it looks like a patch of darker skin on his thigh, that's all.

:whistle: Yes my Ryan has one also! lol

fallen_angel_69

as regards to sleep my dd2 thinks it is an optional extra only to do when she's told, camhs have gave her some melatonin this seems to help a bit so she usually asleep about 8.30ish but up between 4.30 and 5 every day it seems to be no matter how late she goes to bed that is the time she will get up.we have gone to a party and gone to bed at gone 12.30 and she was up at 5.30 when i said to her this was to early she said well it's later than i normally get up

blue_monkey_2

Hi everyone, this is really quick as I have to get packing still and I only have the time Ryan is at school to do it (hour and a half left!) and was reading though while Iate my brekkie. Supposed to be out by next weekend and I at least want to be organised as now we have dx it might mean they have to house us rather thanleave us to worry about getting to court. Who knows, I would hate for them to tell us we had somewhere though and I've nothing packed. At least it is done then either way.

Ryan also have one of those red bumpy marks as well as the cafe au lait mark. DD had one too but hers faded by a year, Ryans hasn't, it is just under his nipple!!

Ryan had a huge tantrum this am because he refused to wear his coat and I tried to make him, he went into school moaning and of course that set him up well for the day - should I jst let him get on with it then and go without?

My reason for posting was to say thanks to this board I realised what the docs were diagnosing Ryan with before she said it. On her notes she drew a square and a circle with a line joining them. A square peg in a round hole. It was at that moment I realised. I wanted to tell you otherwise I would forget.

Sorry it is short, good luck to everyone one who needs it and FA sorry to hear your daughter was so disappointed this week. This is what happened when I went to see Steps (stop laughing!!) book signing but I thought JB might have been different.

I'll catch up with you all soon and SS will PM you later, also have to get my VAT return done and as I always leave it until the last minute I have 3 months of accounts to get done this weekend. oops!!

fallen_angel_69

good luck with your packing and every thing hope all is well
as for John Barrowman dont know wheat else i can say to her only waterstones staff allowed to take photos so that wasnt my fault have left her programme in evelope with correct postage on and staff said they would try to get it signed (won't hold breath though )she gone to school this morning moaning and upset about it all she was crying till she went to bed and it was the 1st thing she said this morning in my bed so she must have been upset doesn't normally get in on a school day,she wanted to have something to show her class.Does anybody get one of those days when nothing you say actually seems to go in I feel like complaining to some one for how sharp he spoke to her but who and probably not worth it but i can't see her calming down for a while yet Refusing to watch torchwood and actaully watch emmerdale he must really have upset her and calling him mean she only says that when she really p ed of i only get told that when i say she can't have or do something she really wants sorry to moan on just one of those things try to deal with somehow

blue_monkey_2

Hi FA, thanks, having a nightmare trying to use the laptop during the day at the Mo with Ryan. Touches everything, wants to see smily faces, etc.. Anyhow, I wanted to say you could do one of 2 things - probably both imho, write to John Barrowmands Agent explressing your dismay and telling them how devastated your daughter was and 2nd to write a letter to the head office of Waterstones telling them exactly how this has affected her for what would have been 10 seconds of his time. You should tell them of her condition and how it has affected her, maybe it will give them something to think of in the future - if no-one is told then they can never know. Not being funny but if your DD had been in a wheelchair then they would have made the extra effort to make sure she was OK and they would have paid more attention (I saw this too when we went to the Steps signing) - this is just part of the problems we face isn't it. A strongly worded letter might not make no difference but let's face it, it'll make you feel a whole lot better and at least make you feel like you have tried to help her!! I would be honest about how this has affected her - maybe then people will get some understanding.

As in the notes I am posting at the bottom of this email - you could send the envelope they request and tell your daughter he said sorry and sent a picture instead. You also want to tell JB's agent that you left your programme with Waterstones and that she badly wants it returned so could they plase find out about this. Here are the details you need from his website, this will be the people who deal with enquiries such as yours. I'll be honest, I used to work for one of these agencies and guess who signs the pictures...... however, your DD will never know.... will she, and it might make her feel a bit better. We used to do a lot of personal bits and bobs for people if they asked (we used to have some of the top female celebs and we used to read letters that would make your hair curl, LOL) however, we did go out of our way at times so never say never. It really depends on how much of a heart he has!! So maybe you could tell them how upset your daughter is and ask if they could just include a little note (even pretending to be from John) saying that he was sorry to hear she was upset but that he had a busy day with lots of people to meet. I hope this helps somewhat

PS. Yes, packing coming along quite nicely, can't get it all done at night which makes it harder as the stock is in the garage and the nights are so cold. Getting there though!! Let us know what happens.

http://www.barrowmanonline.com/contact/contactindex.html
Autographs

PLEASE NOTE:
Due to John's exceptionally busy schedule, and the huge amount of fan mail he is receiving, there is a major back log of photos to be signed and mail to be answered. John apologises for this, and is hoping that the back log will be cleared in the next month or so, so please bear with him.

Additionally, PLEASE do not send items (e.g. CDS etc.,) asking that John sign and return them. We simply aren't set up for that.



John signs and returns autograph requests during breaks in his hectic schedule. This may result in a substantial delay in response.
If you would like an autographed photo of John, send a 5x7 or 8x10 stamped self-addressed envelope to:
John Barrowman
C/O Gavin Barker and Associates
2d Wimpole Street
London W1G 0EB
England UK
Please note that if you live outside the UK, we advise you to contact your local post office and ask them the best way to handle postage.

blue_monkey_2

PS. FA. You might also want to add to that latter to bear in mind that disabilities are not always visibile and so they might want to make concessions that in the future and maybe they could add a note that people with disabilies are able to produce ID and proof of 'hidden diabilities' and be dealt with first so there is no confusion as to why they are asking.

If no-one stands up to speak for these conditions then people will continue to be ignorant!

Another PS. Might be worth emailing or calling the company first and asking if they have any concessions for disabled people going to book signings (when we went to the Steps one there was a girl in a wheelchair and she was first in the queue and also got everything done, everyone else had to go up the table and were just allowed a hello and a signature and you had 10 seconds to take a photo or get shooed along. If they can make concessions for one 'type' of disability then they should make it for all of them.

Bless her, hope she feels better soon., it is bad enough as an adult when these things happen. I am quite diaappointed it was his that was blunt with her, I thought it was the staff. What a git!!

fallen_angel_69

i must admit i was surprised at the time that he was sharp with her but what you suggested was great will do that and tell them exactly how she was last night and this morning i hope when she gets in she is in a better mood will let you know what happens thanks for all the advice much appreciated

shazrobo

just came on for a rant, have applied to social services yet again for respite, i have brought my 12 year old twins up alone from being babies, they both have severe adhd, and one has conduct disorder and other has oppositional defiant disorder, they are a real handful. never had any time off from caring for them except when they are in school, and my health has suffered as a result. reply from wakefield social services, is they do not meet the criteria for being disabled both lads receive highest rate DLA care, and social services tell me they not disabled i am fuming :mad:

quietheart

PasturesNew wrote: »

Here's something I've wanted to post for a while, but it's difficult because of what I am about to say.

I feel like that Alcoholics Anonymous moment when I have to stand up and say "Hello, my name is ... and I am an alcoholic"

I quite often find it hard to "join in" here, even here I feel estranged. Odd. An outsider. I think it's because so many of the parents here are not AS and it's all so huggy/huggy and supportive, which as an AS person isn't something I can do/understand.



Just thought I'd sort of throw it in there.

Would it be better for you if there was an Aspergers/ASD Adult Support thread as well? I can understand how you feel as there are two distinct groups posting. People could then follow one or both.
CAMHS recommended I read Simon Baron-Cohen, the Essential difference - I've done the emphathy and systemizing quotient tests - I scored maximum empathy wise and minimum on systemizing. I'm sure this makes it more difficult for me and my asperger's son to communicate. Having a dx has helped me enormously, I'm taking it less personally so that's helped him loads. Onwards and upwards.... for now at least!

quietheart

shazrobo wrote: »

just came on for a rant, have applied to social services yet again for respite, i have brought my 12 year old twins up alone from being babies, they both have severe adhd, and one has conduct disorder and other has oppositional defiant disorder, they are a real handful. never had any time off from caring for them except when they are in school, and my health has suffered as a result. reply from wakefield social services, is they do not meet the criteria for being disabled both lads receive highest rate DLA care, and social services tell me they not disabled i am fuming :mad:

you must feel like banging your head off a wall. so so frustrating. it's sucha false economy, don't they realise that by giving a little help now they help families to cope, by denying that they can end up with family breakdown, children going into care and then there's serious money involved. it's money it comes down to in the end. you must be so fed up.