vicbee

Hi Bluefish I am in exactly the same position as you as a single parent - desparate to go back to work. Unfortunately i dont have anyone just round the corner to look after my daughter. I dont want to go full time as it would be too much to cope with for myself and my daughter yet i was told by my benefits office i could only earn £59 before all my income changed drastically. (not many jobs around with hours of that weekly salary) I think your only option is to find work during school hours. I know its tempting to take the job because it seems perfect but its really worth waiting till the absolutely right thing comes along that will fit in with your son. It takes us so long to get things on an even keel with our kids after a bad bout and I think this would just upset the apple cart completely and make life hell for you and you would probably end up having to pack in the job anyway - causing more upset. Its so nice to hear from another single mum in the same situation. I feel desparately guilty about being on benefits - ive worked all my life since i was 13 and have spent the past 3 years as my daughter's carer as she became quite ill with an asd related eating disorder just before she was diagnosed a year ago. I hate people asking me what I do. I have decided that my only option is to stay on the benefits and volunteer at a local school in order to gain some experience in this sector which could possibly lead to a job as its my only hope of balancing home and work life in the future - by working school hours only. Id hold on and keep looking for something during term and school hours. You could end up with a job as a school cook!! Good luck!

Thank you all for your absolutely brilliant responses - especially Justine1 - your ideas are really good and I will defo put into practice. I know I sound lucky to have someone to look after her now and again but I am a single mum dealing with her on my own 24/7 and I am so grateful to have a mum who recognises my needs. She is my rock and I count my blessings every day because without her - I too would never have any respite. Unfortunately my mum takes my daughters ways very personally and I dont always empathise because I have really become hardened to the way she is with me so much so that I very rarely tune into any other emotions. I guess it has been a coping mechanism to help me deal with her on my own - by switching off my emotions so that they dont get hurt by her because I know she cant help it. That aside - I would rather have the cat in our lives that out of it. She is very much a comfort thing to my daughter but I also think it is another element of control for her - ie she can (almost) control the cat and also uses the cat to control the situation. Just another one of those problems that we hit every day I guess. If its not one thing - it will be another!!! I guess Im lucky my daughter obsesses over the cat - my friend's 16 year old autie daughter obsesses over boys - and I mean OBSESSES!!! Her worries are more about her daughter getting pregnant...!! Im sure that will be heading my way in a few years too!!

I recently put a lot of time and effort into deciding whether we could have a pet in our household and we came to the decision that it would benefit our household and I was 100% sure about the breed of cat we got and how it would fit in with my daughter's difficulties. We purchased an Oriental Shorthair which is bred from the Siamese and I chose this breed because they are very dog like, they like a lot of fuss and dont mind being handled - which would be perfect for my daughter as she likes being hands on. 3 months now, we have had our little Cocoa and she is an absolute pleasure and really has brightened our household and my daughter really loves her and takes care of her....HOWEVER...she has integrated Cocoa into her 'routine' but to a point where it is causing problems. She takes Cocoa up to bed with her for half an hour until it is light out time. I have to 'pick Cocoa up' from my daughter's bedroom at 9pm. My daughter normally goes to her nannas every other weekend so that I can have a break but we have had huge problems with this lately - her not wanting to go because she doesnt want to leave the cat. I was supposed to go away for 2 days and my daughter was going to stay with her nanna and the cat was to be looked in on twice a day by my neighbour. My daughter went into complete psycho mode about a week before I was to go away and after many days of agressive behaviour I figured out that she did not want to leave the cat. She said she was unsure about me going away for 2 days instead of 1 but she was more concerned that the cat was going to be on her own and she didnt want to leave her. I ended up not going away but still sent her to her nannas for one night so I could go out for a meal. I happened to text my mum that evening to see if everything was alright, and I said that I was on my way home. She must have told this to my daughter because what followed was one of the worst experiences my mum has had with her with aggressive behaviour. When I got home, I had to sit on the phone to my daughter for 40 mins to try and calm her down. It was like a hostage negotiation. She wanted to come home desparately, but my mum doesnt like driving in the dark - I live 25 mins away and I had had too much to drink to drive. The situation was completely out of control but there was nothing I could do except try to calm her down and get her to go to bed. It was around 11.30 pm by this time and my mum had been trying to get her into bed since 10pm. She normally loves going to her nannas and she is usually as good as gold for her. The next morning she kicked off again because my mum wouldnt hurry up and take her home. We are now in a situation where she will not go to her nannas to sleep over and my mum is the only person who looks after her so that I can have a break. My mum is feeling really low because she feels she should have coped with the situation better but I know that once my daughter goes into one - there is no calming her down so there isnt much anyone could have done. I feel like I am being held to ransom by a flippin cat!!! Anyone else experienced problems with the family pet?

It is an absolute joy to be able to just sit and eat a meal together - albeit she picks and faffs her way through every morsel, spitting it back on the spoon a bit, dissecting petit pois peas by peeling their skins off!!. Christmas was great and this is her first easter for 3 years where she can have an easter egg!! oh the simple things in life that we all take for granted!!

Hi everyone I havent been on here for a while. Some may have come across my posts talking about my daughter who was diagnosed with ASD at 13 and was also suffering from a fear of choking on solid food (so she didnt eat anything at all except certain liquidised foods) together with extreme anxiety, not wanting to go out etc etc. Well, I have to say that things have improved for us 100 %! My daughter was undergoing Cognitive Behavioural Therapy for her eating problems which I thought was going to take years - maybe never, to sort out. Well, after starting special school (secondary) in September, together with CBT, a wonderful one to one swimming teacher who has taught her to swim now and given her the most amazing confidence in herself, and also she is on fluoxetine medication - all of this has improved our lives immmensely. She started eating again last October - only small amounts of food - and still only has small meals which still need to be supported by a supplement shake but she is putting food in her mouth and swallowing it without becoming anxious of choking. I recently read through some of the first correspondence I wrote about my daughter when she was first going through the diagnosis process and I cannot believe how bad life was for us just a year ago. I was beginning to crack up myself and ended up on anti depressants because i was becoming anxious myself about going out as I spent so much time on my own at home with my daughter going through horrible cycles of aggression, anxiety, phobia and normal ASD stuff and the eating problems. But all this has changed now. We are just about living a normal life (well, as normal for an asd child as is possible!) I have to be careful that I do not become too complacant though as things just hit you out of the blue when you let your guard down and think things are ok. i still have to carry through the CBT tecniques with my daughter as she does have very irrational thinking that she cannot figure out in her head and so I have to get her to think about why she feels like she does so she can work it out for herself instead of me just saying it will be ok. Touch wood, things will continue to go ok for us. I just want to say that if there is anyone out there going through a similar experience to what my daughter went through with her eating disorder, please get in touch. I found it very very difficult to find anyone else going through the same thing with the food choking phobia. But there is hope and my daughter is real proof of that. I thought she would never eat solid food again. But with a lot of hard work from the right people and from me too - which I overlook sometimes, things have begun to get a hell of a lot better for us...

Hi, PM me if you still need some help

Primary School was bad enough and I would not even consider mainstream high school for my daughter. I fought tooth and nail for a Statement to get her into a Special High School. She started in September and the changes I have seen in her are tremendous. She is supported and understood. However, I understand that it is not for everyone and only the parents can decide how their child will cope. All I will say is - make sure you give it plenty of time and thought before sending your child to mainstream high school as it can do severe damage if they are not supported and you have to later go down the route of getting them into Special.

No it doesnt as far as im aware. The money you are paid has to be put into a bank account that is separate from all your other finances and used soley for receiving the DP and paying your carer. Someone will explain everything to you if and when you get awarded. Gotta dash - victoria

Hi Sally This is the exact situation that I was in. I want someone who can take my 12 year old daughter to social activities as she is joined to my left hip ALL the time and not developing any independence from me which is not healthy as just the two us live together alone. It was my daughter's psychologist who suggested direct payments to me. You do indeed need the CAF form to be filled in (I dont know if there is any other way) but the psychologist arranged all this and we had what was called a TAC meeting - Team Around the Child which brought together the school, and every other professional dealing with my daughter to ensure that all the relevant information was provided for the assessment. I think I am very lucky with the psychologist who oversees my daughter's case because she just seems to know what to do and when and does it immediately. Shortly after the form was submitted Social Services contacted me to arrange to come out and do an assessment - she didnt need to see much because the form was filled in well and provided all the information. she just needed to see us in person. We were awarded direct payments shortly afterwards and I am now in the process of trying to find someone suitable for my daughter. The direct payments system seems very daunting when you first start out and i havent got my head round it yet but social services pass the case on to a support service who help you all the way to set it up and implement the payments and can help you find someone. I dont know how it works in your area but this is the procedure i followed. I would get in touch with any of the professionals who your child sees and ask them if they would be prepared to do the form for you as I think you are more likely to be awarded DP if you have the backing of the people who support your child. Good luck - I hope this has been of some help. I just need to find someone now for my daughter and I think its going to take a while...so we will see. Maybe the form filling is the easy part! Vicbee

Thank you for all your responses - its made me feel even more proud just reading through them because you are right - it is what everyone on here is striving for for their children and it can be done!! Whoo Hoo! (sorry, im still on one!! I may come crashing down next week but hey - Ive dealt with worse! :LOL!!)

sorry to you both for not replying sooner - I keep forgetting to click the email notification when a reply comes through and have only just seen your responses. I will reply by PM properly...many thanks

Hi Ive posted on here a bit about my struggle over the past 18 months - getting my 12 year old's diagnosis and Statement of Special Needs and about her associated eating disorder where she has a fear of choking on solid food. I just want to add a positive post for once to say that my daughter started at her new high school which is a special school for moderate to profound learning difficulties which i was a little sceptical about as she is quite able and bright but would never have coped in a mainstream high school due to her immaturity and social difficulties so the only alternative was this school. I knew back in the school holidays that she would be ok at this school but of course i was still anxious. She has been there 2 and a half weeks now and I cannot tell you the joy i feel in my heart when she gets dropped off by her taxi in the afternoon and she is HAPPY! She cannot wait to go to school every day and just to see this on her face has made every meltdown, tantrum, unbearable moment and struggle over the past 12 years and especially the past 18 months very worth while. Elizabeth used to go to school and be the one who was different - be picked on, be bullied, be blamed for everything that went wrong, ostracised by her peers, made to feel stupid because she couldnt perform academically like the others. Now, and overnight she has become top dog at her school. She is accepted by everyone as everyone has their own quirkiness and nobody cares. she can be her 'calls a spade a spade' self without mum being called in by the headteacher because so and so's mother has been into school YET again to complain that elizabeth keeps calling her daughter fat! Instructions are given clearly for the benefit of all and so Elizabeth can respond properly, teachers are noticing when she is feeling uncomfortable and anxious in a situation and providing alternatives. the school is understanding of her eating disorder and WANT to help to improve things. I am so happy that Elizabeth is happy that i want to scream it from the rooftops!!! We have a long way to go before she will possibly eat normally again but the foundations for her feeling happy and relaxed so that she can build on her eating problems are being formed by her good experience at school. How must this feel for a child who has always been put down since reception year to go to school and feel worthy - I dont think elizabeth actually realises this but her general behaviour and outlook has improved tenfold and so it speaks for itself. Sorry to go on and on but it feels good to be where I am at right now. It is early days and I know there are problems at any school but for now just let me wallow in it!! it feels good!! Vicbee - one flippin happy mum - as if you couldnt tell!!!!

Hi Just thought I would see if there is anyone in the West Lancashire area on this forum? Please get in touch if you are. I would possibly like to meet up with other people besides the ones I have met through various groups. Many thanks

I have not seen this clip before. Very good points raised. My daughter is nearly 13 and only diagnosed at christmas just gone. She has this week started high school at a special school which i am so relieved about and I am so proud of myself for getting her diagnosis and statement of special needs arranged in the space of 6 months. She absolutely loves her new school and this really could be the making of her - being somewhere where she is understood and boosted as opposed to what has happened for the past 7 years in mainstream where she has been shunned by other pupils, confidence knocked by the teachers who never realised what was wrong with her. I do hope that more awareness is raised to the difference between boys and girls in autism and the way girls present on the spectrum and along with this, services etc are modified to include girls more for example in social clubs etc. I find everything geared towards boys - rightly so as they are the majority but i think there should be more girl friendly autism social events. Interesting video clip..

Just watched the trailer of a new release in the States - a RomCom called 'Adam' about a man with Aspergers. Looks like it will be really good and funny too. It was also advertised on Lorraine Kelly's show this morning. I think its only just been released in the States so dont know when it will be here. http://www.foxsearchlight.com/adam/

*** QUOTE*** Sadly, it seems that blood isn't always thicker than water. I'm discovering that my niece and nephew think my son is a spoilt brat, etc, etc. I had hoped that if we don't get acceptance from outsiders, that we'd at least get it from our own family. Very difficult, so I sympathise. ***quote Just wanted to jump in and quote something my sister said last week to my daughter who has asd. My daughter is always desparate to go and see her auntie but unfortunately the feeling isnt mutual.. apparantly she picked my daughter up off the couch and threw her on the other couch and said to my daughter ' ASD is not an excuse for bad behaviour'. I wasnt there at the time, my mum was (who is very understanding fortunately). My sister and I do not get on otherwise i would have been round and given her the wrath of my tongue but some people are never going to get it. I was furious but she is narrowminded about many things so she will not be any different about my daughter.

There is a 4 page insert in today's Guardian Newspaper by the AET - Autism Education Trust

Hi I read your post with a very familiar feeling!! It was like reading about my daughter. She has been needlephobic for many years after having to attend hospital for around 6 grommet insertion operations over the years. She also hates anybody 'medical'. Bless, even when the Ed Psych came to assess her at school, she asked her if she had an injection in her bag!! She is getting more and more used to them now after all her diagnostic appointments but still very wary. we have had all the dramas of having to pin her down to give her anaesthetic. It took 6 nurses one time when she was going down to theatre. Heart breaking. A few months back she was told by the paediatrician that she needed bloods taken. I told him straight after years of trying to coerce her that there is no way on earth she will have it done and she will need to be sedated. This was arranged and what should have been a 3 minute process took around 3 hours in all. She had to go onto a ward, be given the sedation and then bloods taken. It took around an hour for her to take the sedation medicine. Unfortunately I told my daughter that she would be asleep. She didnt go to sleep and wouldnt even lie down because she knew that the needle would be coming soon. When the nurses came to take the bloods she freaked out saying 'but you said mummy that I would be asleep and I AM NOT asleep'. Usual story of her holding me to my every word! This is the first time I have been able to tell the hospital that she is autistic and be able to tell them what will work and what wont because i now understand my daughter. I cried in that hospital that day when she was pleading with me saying 'you said i would be asleep' because all the previous times when she had been to hospital and had the same reaction, i never knew about her autism and used to get so angry and frustrated with her when i couldnt reason with her and all the staff would be getting irate because she wouldnt have the anaesthetic etc. this last time, I was able to understand my daughter's reaction and deal with it better. So maybe you could ask for him to be sedated next time, it certainly takes the edge off things but i am not too sure whether this will work again for my daughter as she knows now that she wont go to sleep as expected. It must be so terrifying for them but they just dont understand that it is for their own good. I wonder if there will ever be a day that my daughter isnt scared of absolutely everything....

Gorgeous Richard Fleeshman was on Loose Women yesterday and confirmed that his character has AS - it has never been mentioned in the programme. He absolutely breaks my heart watching his character - he is just so adorable. Havent watched the last one yet - but have thoroughly enjoyed the series especially his character. The bit about the tuna bake made me laugh - actually - it was more the girlfriend's reaction to him!! Hope they do a second series. I've ordered Richard's CD which he brought out after Fame Academy, he has an excellent voice...

I use special assistance all the time now for my daughter. She is very anxious getting on the plane and takes medication just before we go to board which makes her drowsy - she gets especially anxious when queuing up and also because of her eating problems she has very little energy. It was very handy for us when we went to Amsterdam at Easter. Schipol Airport is massive and it takes around 20-25 mins to get to baggage. My daughter didnt mind going in a wheelchair as they didnt have a buggy and it saved her energy for the onward journey. You get to get on the plane with speedy boarders. And its free! use it!!! The Easyjet staff at Liverpool Airport are renowned for their unfriendly approach and poe faces when checking in but my daughter managed to get a smile out of one of them when she realised she needed special assistance!! Worth it just to get a smile from one of the orange ladies!! (and I dont mean their uniform!!) I jest of course!

LOL!! I always thought it meant diagnosed daughter, diagnosed son etc!!!

Hello, now that you've all finished disagreeing with eachother on here....!!!!.....LOL.... I have decided to just leave things and not speak to the mum. I spoke to my mum this morning and she made a very valid point - one that Chris may agree with. My mum has a bee in her bonnet at the moment (and especially after watching 'The Hospital' last week about childhood obesity) that the overweight child that my daughter 'insulted' will be going off to high school next year and is going to get called a lot worse than what my daughter said, on a daily basis probably and really, if the parent is so concerned about this then maybe she should be looking at why her child is being called fat and taking some responsibility for the fact that her child is overweight. Is she going to run into the school every time someone says something to her when she is at high school? And that will be from children who know what they are saying and not from a child with ASD who cannot help it. Now please don't anyone jump in here and get on the obesity debate - I am someone who has been obese for many years and has finally done something about it and lost 3 stone and continuing - but it was my fault i was the size i was, so I dont want to get into that one with anybody please. The other point is, my daughter is seriously underweight due to an eating disorder associated with her ASD and she gets called skinny and anorexic on a daily basis and she has a severe psychological issue with food and her weight but nobody says anything about the taunts my daughter gets, least of all me, as I know there is nothing you can do to stop children saying the things they do. I punished my daughter this weekend by banning her from doing the things she loves doing like playing on her WII and nintentdo etc but the more i listened to my mums point this morning, the more guilty I felt for punishing her like this. Like i said previously, I do not think her condition should be used to justify bad behaviour all the time and there are instances where our children do push things and do things that are naughty and they do know what they are doing but my daughter told my mum over the weekend why she had done what she had done. She was in PE which is a particularly stressful class for her as she said she cannot understand what she has to do when everyone is shouting instructions at her and she also hates having to lie down on the floor. This particular girl who she had called fat had been bossing her about, telling her to do this, do that, she said the teachers had been getting on at her all morning and she had just hit out by saying what she said because she was so stressed and fed up. So although, she did know that she had said what she said on purpose her ASD again had an effect on the way she was feeling when she did it - feelings of anxiety, confusion etc had all played a part. But how on earth could I explain that to the mother of the girl in question...so the best thing for me to do is just ignore it although I will be asking the school to deal with it better next time by doing a social story or something with her. Oh, the despair!!!!.....roll on July!!

I wish I could get my 12 year old daughter remotely interested in even choosing clothes...but she's not. She cannot think of anything worse than traipsing round a clothes shop. And on the odd occasion that she has decided to choose something, she usually goes for the ugliest outfit in the shop that I would never buy in a million years as she simply does not have a clue what is cool and what is not (yeah, cool as in not warm!!!! she would say!). My poor mother was so excited when she was finally getting the grandaughter she always wanted to take out clothes shopping etc. Unfortunately it didnt turn out that way! We were in Next the other day and my mum picked up this gorgeous white linen trendy jumpsuit and at the till she said to my daughter 'I will buy it for you if you want'. My daughter politely replied (only because the shop assistant was right in front of them) 'No thank you Nanna'. the shop assistant said she couldnt believe her ears - she'd never heard a child turn down an offer to buy them something!! I used to get really fussy about what she wore before I knew about her ASD but now i just let her wear what she wants - I quite like her eccentricity - she oftens looks like one of those mismatched old grannies who have escaped from the care home!! (I can say that because my nan has Alzheimers!) Bless!!

I am so fed up of the head teacher approaching me after school (in the school yard with other parents around) to tell me yet again that my daughter has been insulting another child. Another 'larger' girl has been the on the end of my daughter's insults. She has told this bigger girl that she is fat and she needs to eat less and she will get skinny (my daughter is severely underweight due to her fear of solid foods). We had the same problem when she first started at the school in September when another large girl was told by my daughter that 'she is a bit fat'. I am so fed up of it. I do not condone this behaviour, I hate any sort of prejudice and I am just so embarrased by her behaviour. I feel so ashamed of her. This latest incident had the girl's mum in at school complaining because her daughter was so upset and I dont blame her. These kids have enough confidence issues without my daughter throwing a spanner in the works but I really find it hard to justify it with her condition. She had a good talking to after the first incident by myself and the head and I dont think she gets it at all. Even the head said that she doesnt realise what she is doing/saying. But you would think that after telling her so many times she would realise. I dont know what to think. The problem is, she started at this new school in September last year repeating year 6. She is to start high school at a special school september coming. Since she started at this current school, she has ostracised herself from absolutely every child because of her insults and horribleness. I just keep thinking, she only has a couple of months left and then in September she will be getting proper support at the special school. At the moment, because she has only just been diagnosed and her final statement is not through yet, not a lot has been done with her and i think the school has the attitude of 'well, she will be gone in a couple of months time and she wont be our problem anymore' because even though they put a load of 'goals' in her IEP and were supposed to be taking advice on doing social stories with her, they havent done a thing with her and i felt like saying to the head today - 'it might help if you put a few things in place like you were supposed to, to try to get her to recognise her behaviour is wrong' but I cannot be bothered fighting with them. I have spent the past year since returning from Spain fighting for her diagnosis and statement - which we now have and i really cannot be bothered fighting with this school for the sake of a couple of months and in a way i just feel like telling them to get on with it and deal with it but i have to look at the parent's faces every morning and Ijust feel so ashamed of my child. I hate it when my daughter gets insulted and bullied and I dont think it is fair that any child should have to go through that. I was so angry with her today when we came out of school. She was crying and saying how much she hates the school and that no one wants to play with her and no one wants to be her friend. I feel so sorry for her because she doesnt know how to be a friend but desparately wants to be but just fails miserably at it because of her poor social skills. she just wanders round the playground at lunchtime on her own even though she wants to join in. When she tries to talk to the teacher on the playground to pass the time she gets told to 'go and find someone to play with'. Are these people thick or what? That is her problem, she doesnt know how to socialise. It enfuriates me. Anyone else have this same problem with the 'bluntness' at school which keeps on getting them into trouble?