sky
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Posts posted by sky
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hi - i know what you are saying about the happy bit-i too have social worker coming round tomorrow for first visir with me and joe. very nervous as he doesnt take kindly to visitors and am expecting some behaviours ! in the past i have done saME-but now feel the best way is for them to see him as he is- warts and all!these people are usually very nice and understanding as they have seen it all before and will talk to you and take notes. i know it is very stressful-just to add onto the stress you already have but i suppose it is a necessary evil which hopefully will do some good-but i am not looking forward to it . sorry if not much help other than to say i know how you are feeling. hope allgoes well
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thanks for that _ yes i was under the impression that i was having a meeting with camhs at the school _but the headmaster used the meeting to fill in the caf form which i had no warning of.feeling quite cross at the moment as i feel (rightly or wrongly)that the schools "disciplines" have resulted in my usually happy son regressing to an anxious and occasionally aggressive boy_.so glad to have him home for a week where he can be "himself" again .
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hi lilypad _ i sooo relate to what you said about the crying bit. i have said the same myself _ cant cry as i dont know when i would stop.i too have up and down days .going out is akin to russian roulette_ it can start off really well but am usually walking on eggshells in case he becomes overwhelmed by sensory overloadand we have a meltdown which is not good now he is 13 and taller than me!i also dont have a car so rely on public transport.most of the time if we keep to his usual route and routine he is happy but it can only be someone stopping me to talk that can set him off so we go everywhere as a duo . how many times i have come home and thought never again _ but you do _ you have to !
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Since I first posted this topic, my son has been diagnosed with Autism. They say it is high functioning or Asperger's syndrome. I feel relieved to know exactly why he is the way he is but it still doesn't stop me feeling fed up sometimes.
I can have days where I am ready to take on anything that is thrown at me even if it is when my son is having a really bad day...like today for instance!
There is a shop at the bottom of our road and I wanted to just go to buy a drink and some chocolate but it took us almost half an hour to get there because he sat on the stairs for about 5 mins, refusing to move. Then he stood outside our house for about 10 minutes because he said his brother had told him to wait and wouldn't move until he came back (from my mum's house where he is staying tonight). I eventually managed to get him to cross the road but then he started to pick up stones and throw them, he thought this was hilarious even when I told him it was 'naughty'.
I always feel like I'm going to cry when he is difficult like this, but rather than cry I often end up laughing because I would probably not be able to stop crying if I started! My son hates anyone laughing and when he saw me laughing, he ended up walking back to our house so I had to run after him and pull him back!
This is WHY I dislike going anywhere with him these days because it does take a long time to get anywhere and I don't drive.
Does anyone else have the same problems with their child?
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thank you so much _ i have been so worried abouthim at school recently _ hopefully it will help but not holding my breath as they cant seem to get their heads around him :[
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i had a meeting at my sons school this week with the headmaster and camhs and he filled out a cafs formas my son is having problems at school . can anybody tell me what this is please and the implications.he is a sweetie at home but school cant seem to get to grips with his needs . thanks
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i can so identify with the posts here [i too have a neighbour who has put up a fence-which is growing with my son!].my son is my world and sometimes get so down with the constant negatives that come from his school.you feel you are constantly fighting their corner.so glad it is half term as i can have a happy sweet boy again instead of an angst one.all his school sees is his problems and his autism without sereing the boy underneath and are creating an aggressive child where there wasnt one before. you feel sometimes like shouting out that here is a wonderful boy- why cant you see it instead of just seeine the difference from the norm?i am sure i am not the only one here who feels like this . feel very frustrated!
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thanks susan- joe was given ariraprazole a while ago but i stopped it pronto as he developed a significant tic with it-elbow jerking-and also it didnt help at school where his anxiety shows itself. he is ok at home as i know when not to put too many demands on him but it has been tough trying to educate the school about his needs at the mo.luckily camhs have been brill and have backed me (AND JOE) UP ON THIS .ringing care worker tomorrow to ask about asking for higher rate -especially the mobilty element as it is becoming not safe to take joe on public transport( no car) and so expensive to get taxis everywhere . speak soon
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Hello Sky, your son sounds a lot like my youngest. He's 11 and has been disgnosed with autism and severe anxiety and I just can't seem to make the psychs understand how very severe it all is - he needs something to calm him down but they won't prescribe. He's on risperdal atm for his agression but it's not working. My eldest is 18 and q calm these days. He wo't work so I'm trying to help him towards independence. My daughter is nearly 18 and has her own place...long story, lol. Re DLA, yes, I feel my youngest should be on a higher rate, esecially as i do have chunks of the night taken away - i'm challenging the decision atm so I'll let you know what can be done. Catch up soon, Susan
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hi -this has been suggested about my son aswell-how old is he? mine is 13 and has anxiety that has gone thru the roof in the last year. the school called in camhs who have been wonderful and who wrote a report recommending changes in their approach to him. they have callad this -loss of well being which can occur in adolesence as tho he is sverely autistic is very switched on and therefore finding it hard to cope with his "difference".
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this is terrible- i am no expert but its obvious to me that your son is on the spectrum -and felt so cross to read social worker said he had to go to appt on his own ! if it was me i would go to his gp INSIST he needs an assessment as he needs support and so do you. any good ringing the national autistic society for help?feel so cross you have been palmed off with 5the reasons for his behaviour you have-where are the professionals who should have picked this up?!!!
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hi susan -i have a 13 yr old son with severe autism and anxiety issues . i work part time as a ta in a special schoolto keep my sanity ! i know it is so stressful being at home -but really get so exhausted working as it doesnt stop when i come home.how old are your children? i only have joe at home as it is second family and my other 2 kids are grown up now. i 2 am glass half full girl -i find i keep smiling for awhile when all i seem to get are negative comments thenit all com3es out.would sometimes like to stop work but have money probs so afraid to take the step.i get middle rate care and low rate mobility -does anyone know if this is right for a 13 yr old who is incontinent severely anxious and volatile ?
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hi again -forgot to say if there is a sleep problem go to your gp and ask to be referred to a paediatrician who perhaps could prescribe melatonin for your son -made a world of difference to us!i sympathise -my son also wont tolerate shopping and at 13 is too big for meltdowns-and too risky for everyone else!
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my son is 13 and was also diagnosed at 4 so trying to remember how the wheels started turning. the first thing to do would be to apply for dla and get a social worker sorted. we only see ours once a year but she could help you to get free nappies which you should be entitjed to -also to arrange some sort of respite care for your son.we only get 1 day a fortnight but you need some sort of break. hope this helps
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hi jordansmum. at last i have found someone who is going thru the same as me. i too have an autistic boy of 13 - who demonstrates the sort of behaviuor you describe. he has been having melatonin for a while with good results and no side effects . he wont take pills so i have to crush it and put it in a drink-i know this is not ideal but bettr than nothing. he too breaks things- it was my wardrobe that got it this week and i find poo allo over the place -carpets bed etc.thing is - he was fully continent until a year ago but since the onset of puberty has changed - due to the changes in his body he does not understand.he is only verbal to the point of telling me what he wants but not how he feels. he seems to keep it all under control for a week then has a major meltdown and this is the time things get damaged. school is also stressing him at mo so this usually occurs in thr morning when he doesnt want to go and of course escalates when in his mind however much he acts out mum doesnt take notice and still sends him!i know what you mean about forms being dauntjng when you are so tired mentally- i need to apply for higher arte but have been putting it offbut social services will help with form . please post me if yhou want to talk as i know how mentally draining it can be.like you < when visited up to now have always been told i am ok and coping well -its only in the past year things have changed. family fund will help with things but only once a year -you can apply online .
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i have just looked at the blurb that comes with the melatonin and it doessay that it is prescribed for the short term treatment of insomnia [tho my son has been on it a long time] and poor quality of sleep in 55 yr olds and over so that it would seem that adults can have it.
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will they give melotinin to adults too or just children?
XKLX
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hi- i agree with the above post about malatonin really helping. as said its not a miracle cure but seems to educate your child to sleep and certainly changed our life. my boy has been on it long term with no ill effects and has learnt that even if he takes a while to get to sleep,to lie qauietly in bed until he drifts off. hope this helps
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Hi
Melatonin has made a significant difference to my son. My understanding is that kids on the spectrum can lack seratonin (something which regulates various things including sleep). Melatonin is a natural hormone and is currently unlicensed in the UK for children (though it's widely and easily available in the States). However, my son's consultant suggested it to us and initially I refused. However, after moving house, etc I was struggling to function about being up half the night with my son. My son's consultant prescribed it and contacted our GP to ensure a continued supply under the 'shared care protocol' (some GPs refuse to prescribe it). We gave it a try and although it's not a miracle cure, it has undoubtedly helped the whole household, nut just kiddo. The thing to note is that it helps get kiddo off to sleep, but doesn't keep him asleep. However, that's good enough for us as R would often awaken in the early hours and be awake until 12/1/2am.
Best wishes.
Caroline.
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hi trekster thanks for input -will certainly bear in mind the aspartame in felation to noise sensitivity .dairy is harder as so much of his diet is made up of milk and yoghurts -vicious circle really.as you become afraid to take away the thimgs he WILL eat.thanks again
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hi lindy -sounds just like mine! you feel so guilty when you are eating home cooked meals and your child is eating convenience food! similar situation with sc hool as well -major probs last term as he was so stressed and unhappy and i think they were struggling to understand him.he is very complex but i was getting very annoyed with them as it just takes a lot of effort and patience to get to know him and treat him as an individual and not a text book case!happily in new class thisd term with a different teacher who i have got a good feeling about-i think you can rcognise the good ones -you seem to develop a radar!my boy also gets stressed by lights ,lots of people talking ,certain noises.the worst thing is he communicates what he wants but it is heartbreaking when he is sad and cant tell me why.as for the social bit ,i take him out to parks on my own as he wont tolerate anyone with us.i have certainly found out who my friends are -the ones who understand wheh i see them once a year.its good to talk! xxx
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Hi, Welcome ... i am quite new late last year i joined....my youngest of 4 is waiting to get seen by CAMHS.....first appoitment next tuesday.....my sons diet is not very good either used to blame myself alhtough i eat good food make most of my meals from scatch but hes not interested....but i had this with my other 3 as well....he is 11 and we have home tutor as going to school has been stressful for him.....he has had some incontinence although he was toilet trained from 3 years...i want him dx so i can explain to family people why we cant come to different outings etc., noise lights too many people.......and also so i can get some guidance .....hope this year brings some results and i know how you feel......pm me if you want to talk....lindy
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hello i am new to this forum - i have an autistic boy of 13 who attends a special schoolwhere i also work as a teaching assistant.he is going through puberty and is as tall as me now.he is only verbal when he needs to be - has a terrible diet -and has regressed to being incontinent after being toilet trained since 5!that said he is a darling boy and is a real blessing tho very hard work and heartbreaking at times.its not so much him thats the problem its the worlds intolerance for difference. need some people in the same situation to talk to please!
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hi everyone -i am new to this forum and so glad i found it;i have an autistic boy of 13 who is very challenging at the moment -puberty! i also am a teaching assistant at his special school and i agree thatn my life with him has made me so much more tolerant towards other people. other people can and will judge but no amount of books can provide t6he knowledge that living with asd can.i think you are always struggling against coventionalways of thinking and dealing with childhood problems and it has taken me a long time to get the confidence to stand up for the approaches and statagies i believe in.someone very wise once said to me that you have to look from the inside out -a lot of people just view any problems from the outside in .and every chid is different . hoping i can find like minds to speak with
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hi -i felt i must reply to genies post regarding the quote that schools seem to blame bahaviur issues on the child rather than the enviroment surrounding the child. SO AGREE with this.having major probs with my son at school at the moment -even tho he a attends a special school.his probs have escalated recently due to moving up in ths school into a class where i believe their efforts to get my boy to "conform" to their class structure has resulted in a very anxious unhappy and increasingly aggressive boy.it is only now when camhs have been called in and we have the expertise and understanding of a brilliant lady that things are beginning t get sorted out-having gone into the class to observe .this could possibly have been avoided if time had been taken to get to know that too many demands would lead to this situation and to try to adapt rather than him having to adapt to them .