Mandapanda
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Posts posted by Mandapanda
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We were actually advised not to tell her, but the report got sent to me at home. As she kept her father's surname it was addressed to me as Mrs (with her surname) and as I get no mail addressed with that name, she thought it was for her and opened the letter, after that all hell let loose. She then went on theinternet and googled AS and saw the word autism. As my best friend's brother is autistic and in residential care with a mental age of about 13 for a man of 54 she immediately associates herself with that and even though on the psychiatrists advice we have tried to turn this into an anxiety issue, which she has, she now sees herself as labelled. Unfortunately 16 is never the easiest time anyway and with her things are more enhanced.t='256918']
Don't you wish you could turn the clock back sometimes?!
With regard to hobbies, she loves music, dance and acting and wants to be rich and famous but whilst I don't want to belittle her interests, she needs to be realistic and we do try and explain to her that she should have another career as a "backup". Unfortunately she can't stick at anything. The only thing she stuck at was Stagecoach. She had piano lessons, which lasted for a term when at school, then she wanted to try violin which lasted 4 weeks. Growing up we have had ballet, judo and tap lessons none of which lasted long term and we managed to find some 1:1 acting lessons, but even they only lasted a couple of months. She doesn't like to read, as she has visual attention problem and it has to be something that really interests her. She is good with biographies, but it has to be people that interest her and these are usually people like Girls Aloud, but I try to encourage that as something is better than nothing. At the moment we can't even find something for her to do that really interests her. As long as she is plugged into her iPod she is happy.This bit sounds depressingly normal for a teenage girl these days. They don't really know what else is out there, this is splashed all over TV and magazines but it doesn't show the hard work involved behind the photos and videos. My eldest is doing English, Early Modern History (Tudors), Geography and Philosophy at College in Sept - no idea what job he could do with that lot? He's intellectual but not academic enough to do exceptionally well plus he lives on a different planet!! It's really hard to just let him do stuff when we can't see it leading to a 'proper job'.
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Hi scatty
You might like to look at my thread School Phobia/Refusal, some of the advice given to me might be useful to you.
I agree it is appalling that there is very poor communication. We have had exactly the same problem. I had a mini breakdown recently and they all said they would talk to each other, but they still haven't - although the school has contacted me twice this week.
From what you have said, I would say that personally I wouldn't rush anything happening. Your son is out of school anyway. A period of 'cooling off' may do him the power of good, then he may be more ready to approach the learning when it does start. With my eldest son, bad behaviour meant he was not coping and was desperately unhappy, but he didn't know that and wasn't able to express it any other way. Just try and spend quality time with him, playing games, making cakes (
) or whatever he likes doing (if/when you get chance!!). I found it hard enough having a 3-year-old with AS and a new baby, so I don't envy you 
<'> Is your son statemented? I was told they are not supposed to exclude children with a statement. There is another thread that covers this subject with excellent advice and links to useful websites.
Thinking of you.
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Hi Lisa
When children leave school, even if they are going to college in September, there does seem to be a gap in support. Connexions are a good bet. They provide counselling (if/when she wants it). My eldest son is totally in denial but he is a very strong character so he hasn't really had too many problems. He's just happy with himself and is able to ignore negative outside influences.
Being a teenager can be a confusing and difficult time for anyone, it's a time for low self-esteem and lacking confidence, and of course no-one wants to think there's something 'wrong' with them. Also being a teenager can make people acutely aware of any differences between them and others, maybe she is all too aware but thinks if she pretends it isn't so it will go away. Does she have any talents or hobbies/interests which she might possibly not have without the AS. I like to describe AS as more of a description of a personality, and point out that without it my eldest son would not have those wonderful qualities that he does have. It just happens to come with some difficulties as well. Many NT people have difficulties of their own, hard of hearing, shyness, etc. My husband has epilepsy and we equate/compare the AS with that - it's something you can't help, it makes you who you are, you can learn to live with it and adapt your life to fit with any limitations you may have, and you may need medication to help.
I haven't discussed my youngest son's diagnosis with him. He's very different and will take it as criticism and could feel worse in himself. It's a job to know what to do.
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Hi nannysandy
See my thread School Phobia/Refusal. Some of the advice given to me might be useful to you as well.
We spent a year seeing a CAMHS practitioner who only wanted to make us make our son go to school and obviously believed he was just manipulating us. When he could understand or couldn't answer her questions she was clearly annoyed with him and said we weren't engaging. It's so easy to blame the parents (I even do it myself sometimes!). We ended up complaining and now see an actual psychologist who has been much more open minded and supportive.
My youngest son has a diagnosis of Severe Anxiety & School Phobia, Depression and traits of ASD. It's annoying when you get a diagnosis like this because people just think 'he worries too much' and think it is something he should be able to overcome. And traits sounds like something not very important but his traits are pretty major seriously affecting ones! I too 'gave up on AS' for several years after the School Nurse snapped at me "just because you have one child with Asperger's doesn't mean you'll have two". These people have no idea at all of the affect they have on children's lives and that of their families.
There are other people offering good advice to you, I'll just send you these
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Thanks for the replies. I'm going to try and get CAMHS or the School Doctor to do a letter saying Aw isn't well enough to cope with education at all at the moment.
Yesterday I emailed my MP (and sent him a link to this forum as I think it speaks for itself) and today my local county councillor came canvassing so I bent her ear as well!
Had another call from the school today. They said they 'want us to stay in the system'. They didn't mention Home Education, they are not involving the EWO because of the risk of prosecution, and we can restart the Home Tutor when Aw is ready. They said they can also offer online learning where he just does it on his own. The previous online learning they offered was a sort of 'online class' where a tutor and other children all logged on together and went through stuff together, he was too anxious to do that. They said they would give it a couple of months and if he's still not doing anything they will 'start up the process' again. I assume that means involving the EWO. I mentioned again about getting him assessed for a statement but was again met with silence.
Bless his little heart, he asked that if he did Science with the Home Tutor if that would be enough to stop me gettng prosecuted. He was very subdued yesterday worrying about it.
I had my assessment at the mental health team this morning (the referral had got lost so they fitted me in urgently), so at least that's started as well.
All your advice has helped me, and made me feel I can do something about the situation.
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Hi Lisa
I may know exactly how you feel!
My son is 12 and had been good at going to appointments even though he wasn't attending school, but now he won't come to CAMHS with us and he wouldn't come to his dentist appointment. He asked why he had to go when he didn't have a problem, so I explained why but he still wouldn't come. It's very frustrating.
He has had to have a good enough reason to go out (shopping for computer games, library for computer games/books/dvds). However, out of the blue, in the holidays he came for a walk with us in the forest - the first time he'd been just for a walk for about 3 years. During the holiday we got him out of the house about 4 times, whereas it was about once a month. He also had a friend over who he hadn't seen for nearly a year and had been to anxious to invite before.
I don't yet know if I will get him to the dentist or CAMHS, but he is at least talking about eating better and doing education in the future, so we are getting there.
With my son he was very depressed and unhappy and was doing whatever he needed to protect himself from situations he couldn't cope with. He would become withdrawn, very cross, and if pushed even violent. He was just a frightened little boy who felt safe at home. It has taken his mood improving to see the above changes in him and also for him to start to talk about things like school - at one time he would storm off with his head in his hands if we even mentioned school. He is quite an anxious child anyway, he worries and thinks too deeply about things, but the depression made things overwhelm him and made it impossible for him to cope with life outside the home and involving other people.
If you're daughter is having trouble going to school you need to get in there and get support put in place as a matter of urgency. I wish I had realised what was happening when my son started saying he felt unwell all the time, rather than the problem escalating to the point where he has not been to school for almost a year now.
I hope you can get to the bottom of your difficulties, but it may take a lot more time (and energy) than you might think at the moment.
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Smiley
That's awful about your nans. My son was deeply upset when we lost his grandma recently. It is a worrying and stressful time and you're quite likely to be finding yourself more anxious and worried at the moment. I would say that you need to beware of getting depressed at these difficult times - that can happen to anyone. Have you tried talking to someone at Young Minds? I found them very helpful when my son was at his worst. I don't know how old you are but do you have a Connexions worker? They offer counselling, though it sounds like you've seen a lot of different people anyway. I'm sure in your calmer moments you do realise that you are far too hard on yourself, but it can be very difficult to hold that thought when things are pressurising you!
Does music help you, or coloured lighting? Try and find something soothing to help you relax when you are at home. My son loves stroking our cat.
Take care xxx
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fear and anxiety hold be back so much in what i like to do and achieve due to lack of help and support around and when i do get in reach of something i get let down,disappointed and that hurts so bad so thats my main fear of abandment from professionals etc as had happen in past! i worry over everything i could possibly do so! i drive my parents crazy it frustration the whole lot into one big meltin pot waiting to give! ahhh!my parents are only one done this properly through the years and havn't betrayed me or gone back on their promises and dashed my hopes dreams etc scary and doesn't help me feel any better within me! and my life! but can't hep but begin to lose trust in everything now offered to me! am i wrong to think that?! after what ive been through?! with different services ,professionals etc? CAMHS,OT's/P.T,T.A's ,etcI feel for you smiley. As a parent it's so hard when you tell your child someone will help them and then they let you both down. I not only feel guilty that I have 'let them' let my child down, but angry with them and myself. Your parents sound great, but you also sound a very caring person who appreciates what they have done for you. You're a gem!
I've never considered myself a worrier, although looking back I think I have suffered from Social Anxiety. I've had to fend for myself (until I met my husband) and been fairly self sufficient. However, fear and anxiety have taken over my life the past few weeks. Now I know how my youngest son has been feeling for about 2 years. When anxiety grips me it's like nothing I've felt before. It's not a panic attack that can be sorted out with a bit of deep breathing. It's like real fear and dread.
I've downloaded the leaflet from the above link. I have an assessment tomorrow morning with the Adult Mental health service, but I'm not sure how much they'll be prepared to help me as I am not (currently) suicidal or a risk to anyone else (as tempting as that might be at times when dealing with so-called professionals!). I work in the Mental Health service and I know that it is not always straightforward to get Cognitive Behavioural Therapy on the NHS, even though it is widely regarded as the most effective treatment for Anxiety.
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Me and my husband love this programme. 'Raquel' is brilliant in it too!
I'm not sure a child like Kyle would have coped with everyone clapping and cheering after the performance - mum had said he didn't like noise etc. Also, my son would have totally freaked if he had been spat on like Kyle was.
They always have to take short cuts with 'unusual' characters - it's impossible to demonstrate all the nuances of a particular condition plus personality, and if they do it too definitely there will just be more people saying AS/ASD isn't like that! Overall I think it is a good example of introducing the subject in a subtle way as a normal part of the characters' lives.I also liked the way they showed the brother joining in so he didn't get beaten up. Very realistic.
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Thanks to Bid & Kathryn for replies.
Sorry, didn't mean to hijack topic. Maybe replies will help you too. I wish we had sought more help within school at an earlier time, rather than being in this position now. However, we had too many other problems to realise what was happening at the time. It looks to me like you need to find a sympathetic GP and apply for a statement. I know I need to do this - I just need to find some energy to do it!
Good luck to us !!!
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Hi I really need some advice, ds has been clean and dry for about two years. he did smear for about six months but I thought it was somthing he had grown out of. Ds is almost 6 and has in the last week started pooing in his pants.... I have not made a big deal of it and have praised him for being clean but tonight he pooed into his hands and presentrted it to me I am so scared that he might be regresssing!! but also dont know how to handle the pooh thing my mum thinks he needs to be punished but I think he is autustic and needs to be encouraged every step of the way advice pleaseMy youngest son had serious probs coming out of nappies to potty/toilet. He used to hold on for days. I tried getting him pants he liked and wouldn't want to soil but it didn't work.
The only thing that seemed to bring a small breakthrough was, when we moved house (he was 6) there were wooden toilet seats which we didn't like. We bought new toilet seats and Aw was actually excited (quietly!) about being the first one to use the new seat. He was better after that. He will only go on the downstairs toilet for some reason unknown.
Good luck
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On the face of it, that sounds like strange casting!
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My 15-year-old son wouldn't have a friend round at one time cos the friend smelled too bad (at that time Mj was showering once a week with relatively no probs). Later the friend started washing and my son almost stopped! He also refuses to use anything like deodorant and I don't think he uses soap or shampoo, just pretends. When I remind him how his friend used to smell he just shrugs. He's going to college in September and has said he needs to go and buy a whole load of new clothes, having only ever had one favourite outfit all his life! Maybe the washing will come when he's at college.
When he was about 8 he turned round to me one day and said, accusingly, "mummy, why do you always give me fishfingers?" Why did I - because it was all he would eat for about 3 years!!!!! -
Hi Diane
My 15-year-old has no problems going out, he just rarely has any need or wish to. Occasionally he has taken himself off for a walk in the forest on his own (nervewracking for me!). He never goes to shops or the library on his own or with friends. He chats to friends on MSN but rarely meets up with them. They all have their own socialising problems, which is why they get on with each other. He has rarely done after/out of school activities and when he has he has always given up after a while. He is starting at College in September and made a comment the other week that although he may not need to be at college full-time he might not be home till late due to attending the after college activities! It's like everything is in a box. Going to school is a very isolated experience, but college is different and more sociable in his mind. He appears to have no intention of getting a job until he finishes college and gets his 'proper' job - you're in education OR you're at work, no matter what we say!!
My 12-year-old is another matter. He suffers severe anxiety and depression and got so bad he hasn't been to school for almost a year. He has NEVER left the house on his own. He is too anxious to go to friends' houses and recently had been too anxious to have friends round, but in the easter holiday he had a friend round he hadn't seen for nearly a year. He also came for a walk with us in the forest - the first time for about 3 years! Basically he was very depressed, and now his mood has lifted plus he's getting older, he is thinking about things and is starting to want to change his life (not quick enough for the education authority unfortunately, who may be about to prosecute us). He is a very sensitive and creative child and a very deep thinker, this means he is emotionally affected by things more, so suffers more when life is stressful, which it inevitably is with his difficulties. But we can see a glimmer of hope.
Basically, if you're child is happy as he is, encourage him to be more sociable but don't worry too much.
If you're child is not happy as he is, maybe there is more going on than you realise. We didn't realise our youngest was so depressed and anxious until he stopped going to school - we thought it was just that he didn't like school. When it is quiet and your child is in a calm mood, talk to them generally about life and stuff, you may be suprised with what comes out. It may be sensory issues, worrying what others think, thinking everyone's looking at them, not being sure how to behave, or just feelling safe at home. The level of their difficulties as well as their inherent personality will affect an issue like this.
Good luck.
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Sally
What's an AAT?
Thanks.
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The school applied, and the EP came and assessed him at home.We succeeded I believe because both his consultants went right out on a professional limb and wrote letters actually specifying why he needed a residesi school in extremely forceful terms. The LA EP also backed us 100% and was adament in meetings that he needed a Statement and residesi placement.
My top tips would be to get your child's consultant/s to write formally signing your child off school, explaining in very clear terms the impact on their mental health.
Bid
I have a son not attending school for almost a year due to severe anxiety and depression (see my thread School Phobia/Refusal). He has never seen the EP and no-one from school has ever come to the house. The EWO has been out once. My GP doesn't believe in Aspergers(!) and has never been willing to sign him off sick. We have never seen a Consultant. We see a Psychologist at CAMHS and had an assessment by the School Doctor. Would they be able to sign him off?
I was interested to see that the EP came out to assess your child at home as I didn't know if they could assess a child not at school. I suggested to the school yesterday that perhaps he should be assessed so that if/when he returns to school he gets the support he needs but there was just silence at the end of the phone! We're on the verge of being prosecuted. Should I pursue the statement pathway?
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UPDATE
Aw isn't doing any schooling at the moment, but his mood has further improved and he is making some small efforts to try some other foods. He has said when he is 'eating healthier' he hopes to start doing some education again. He also had a friend round that he hadn't seen in nearly a year - he had been too anxious to do so before - this is a real breakthrough. He even came for a walk in the forest with us - CAMHS were really shocked he was able to after so long at home. He is also stopping some of his 'habits' - having a fan on all night, lots of toys on the bed. I'm now waking him at 10am as 9am was too early and he was going deep asleep again.
I had a mini breakdown just before the easter hols and asked the school if there was any more support they could provide, and why Educ Welfare had closed our file. I got a phone call from the school yesterday who said the EWO's job was only to point us in the direction of the online learning and home tutor and that the idea was to work towards him attending the small special unit. If he wasn't going to do anything at all their only other option is to prosecute us!
The school education welfare staff member asked if I had considered Home Education (but said she couldn't recommend what I should do).
This stress is almost destroying me. I'm waiting for an appointment with the Adult Mental Health Team but my referral got 'lost' (even though I work in the service!).
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Hi
There are some interesting replies here, thanks everybody (even those I don't agree with!).
Aw goes to bed more willingly than he used to, at around 10pm. That may seem late to some of you but he has always gone to bed at same time as big brother. At one time we had a battle to get him to settle at all even at that time. Now his mood is better than last year, he is easier to get to bed. I still read a story to him and then he reads or goes on his PSP/DS. He does not watch TV or go on computer at night.
He often doesn't sleep until 4-5am, he just literally lays awake all that time. I know this because for 5 months I was sleeping on a mattress on his floor, due to his panic attacks at night. I am now permanently back in my own room, thank goodness! CAMHS thought it terrible I was in his room but I knew he would get over it when he felt ready.
He wants to get up at a reasonable time. He was very pleased last Weds because he got up at 9.30am while I was at work. So he is not deliberately staying in bed as such. He is scared of dogs (shame though because I can see it would be great), and there is absolutely no chance of him taking any medication.
I collapsed in heap at the weekend and am now unwell with depression, so we are not doing anything at the moment, although today when Aw really woke up at gone 12noon he said we should have woken him at 9am. So we will go with his wishes at present. GP and school are trying to get us more support.
I do believe that because of the improvements he has made himself (me going back in own room, him eating more regularly, and him wanting to get up at reasonable time), that we should encourage him to make each change as this will make him feel better about himself. There is zero chance of him going back to school, and I am now of the opinion that he shouldn't have been at an ordinary secondary school anyway.
When I am well again I will of course review all your suggestions (if they are still required), so thank you for taking the time to give them.
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Unfortunate misconceptions said to me:
"How could he miss a friend, they don't have feelings"
"He can't have that, he's friendly"
"It's a behaviour disorder" (this is usually meant to prove that my child MUST have been the one in the wrong). The truth is bad behaviour usually, in my experience, stems from frustration, confusion or anger in my child - not a direct result of AS, but a side effect of the other difficulties.
As Alisha has, I've also been told I had sat at home with just me and him too much (I was NCT Rep and attended coffee mornings every week with up to 12 children there!).
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Thanks for confirming that I am pathetic!
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Our new CAMHS lady said we should try and get Aw up at a regular time. She said we should do it together, as most things have fallen to me over the past few years due to husband looking after his parents and being stressed out. (I know I have let a lot of things 'go' because I have had to manage on my own a lot of the time). We had a chat with him and he agreed he wants to get up at a reasonable time, in fact yesterday he was very pleased with himself because he got up at 9.30am, after I had woken him to say goodbye at about 8.50am to go to work (mostly he goes back to sleep). As his mood has been so much better this week we decided to go with his idea of about 9am to be woken, even though that would mean me doing it on my own. It appeared he would co-operate.
Come this morning, I woke him at 9am okay. By 9.30 there was no movement so I went in again and woke him and he got very grumpy and said he only wanted waking up once. I said he had wanted to be woken up so he could get up. He said he only wanted waking up once then to be left alone. I left the room saying firmly "Well, wake up then".
Since then I've been downstairs crying and on the phone to my husband. I felt anxious when I woke up anyway. I have notice I get anxious on my non-working days. I feel really sick, frightened and miserable.
The CAMHS lady said we should not give up each time and should just stay calm and keep on until he got up, keep saying "we love you and want to help you make your life better and make the most of the day".... She said this would make him feel reassured as we would be taking the control from him and making him feel more secure. This all makes logical sense.
Each time Aw's mood has started to improve, something has happened to knock him back. The last big thing was his grandma passing away at the end of January. His mood is just starting to settle down again and we have seen improvements in his sleep, eating and motivation, and his cheeky sense of humour returning, he's even getting on well with his brother. I am scared that if we start trying to make him do things when he doesn't want to, his mood will dip again and it will create more problems than it may solve. But also I am scared that he and I are going to be stuck here in this house for ever.
I wish someone could come here and make me feel so much better that I can do this. Why can't I just go up to his room and make him get up. I am supposed to be an adult but I am behaving just like him. How pathetic am I?
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Do you have a child with ASD who is passive or pretends to cope?How do you get your child's difficulties recognised by professionals, relatives, friends etc.?
How do you help school staff to recognise your child is pretending to cope?
Do you think the fall out at home after school is due to the child having to pretend?
Do you think there can be other reasons for this fall out?
Do you think the child who is trying to be invisible wants attention or would rather stay invisible?
Should the LEA put provision in place for a child who is coping or appearing to cope at school?
How do you convince the LEA that the child is only pretending to cope?
This topic is very close to my heart. My child, now an adult pretended to cope, his learning difficulties were recognised but not his ASD. He had fantastic teachers who were very experienced in ASD, they adored him and respected him but could never see the 'real' person. He would do anything not to attract attention to himself. This was in all situations where there were people other than immediate family. I now support and represent parents, and many of them are faced with this problem. I would appreciate feedback on this subject.
Nellie.
Thanks Nellie.
This is definitely my youngest son (and most definitely not my eldest!). He got to 11 years old when he could no longer 'pretend to cope'. Home life stressors and changing schools became to much for him. Now he is just at home all the time.
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Hi Sarah
So sorry to hear what you are going through.
Other people on the forums have said that parents can request assessment yourself. Hopefully someone can provide you with necessary info to do so.
I can't be much help I'm afraid as my youngest son hasn't been to school since May 2008. I just hope your situation doesn't escalate. You need to try hard to get help before it does. School nurse, GP, Ed Psych - try them all asap. In my experience behaviour like this is often an expression of unhappiness, frustration, and/or confusion. Are there any stressors that you could talk to him about? In our case we were so busy dealling with ill parents and extremely difficult teenage niece that we didn't even think to talk the situation over with our sons and find out how they were feeling, hence the current situation with our youngest son.
Good luck
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What have I done?
in Off Topic
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Well done Chris. Even getting interviews these days is a miracle. We had a 10-hour a week job going doing boring data entry and had 130 applications. They called 6 for interview and 2 of those didn't bother to turn up or phone to cancel. Unbelievable.
You're very brave to take the first job, and I'm really glad there are people willing to work somewhere like that. My niece has been in a YMCA but hated it, everyone talked about drugs and stealing stuff. She doesn't want to go down that route (again) so has moved out to rented accommodation. It's very hard for young people who want to do well but don't have a parental home to turn to.
You have to do what suits you and your situation and family. Though it is hard when you feel you're 'letting people down' by leaving somewhere.
Good luck with your interviews.