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suze79

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Everything posted by suze79

  1. Thank you so much for your reply Suzy. I hadnt been on for a while so i have only just noticed it. I'm still getting to grips with the format of this forum. Ds has now been prescribed sertraline which i am yet to convince him to take. He is reluctant to talk about the voices and says he has not heard them for a while. He says if he talks about them he hears them more so he refuses to talk about them. He still suffering from high level anxiety do thats why we find ourselves down the medication route. I just hope it helps because it really is torturous seeing him so distressed. It really is comforting to know that there are people out there that can sympathise. Thanks again. Susan
  2. Hi Everyone My 11 year old ds has been prescribed sertraline for anxiety and i am scared to death about the side effects and if it will help. Does anyone have any experience with this? Did it help? DS is so anxious all of the time and i really did not want him to take anything but it is torturous seeing him so stressed out. Any advice would be very gratefully recieved. Susan
  3. Sorry, i meant to say that my GP said he would write a letter to DS Doctor at CAHMS about what had happened and is not referring me anywhere else.
  4. Hi, thanks for the replies. I should of said he told me about these voices on Sunday night and I telephoned CAHMS on Monday morning but his Doctor at CAHMS is on annual leave until 9th August. I made an emergency appointment with his GP who told me he would write a letter outlining my concerns but did not see or speak to ds. He told me that should he further deteriorate that a locum could come out and make an emergency assessment. He appears to be a bit better now and has told me he hasnt heard the voice since Sunday but then again he has a fear of hospitals and may just be saying that because he cant stand visiting CAHMS. I am at a total loss of what to do next. I do not want to make the situation any worse for him by calling in stangers to assess him on an emergency as he expressed to me on Sunday that he is scared that there is something really wrong with him and will he have to go into hospital which i of course told him he wouldnt. But, he is still very nervous and anxious. We are due at CAHMS on 11th August so I dont whether to sit tight till then or pursue something else. I am just so frightened for him and dont want to do the wrong thing in case i make it worse. I did read the very similar post on here and cried but i found it hard to relate it to what is happening to my ds as he is only 10 and nothing much has altered with regard to his routine or circumstance.
  5. Hi, my ds (almost 11) started saying two nights ago that he hears a voice in his head and that it is telling him to do stuff. It tells him he must sell his soul to the devil and most worrying to harm himself and other people. I have tried my best to reassure him that it means nothing and ignore it, try and think of something good, tell him that everyone has bad thoughts sometimes but he is in utter torment. He says that he hears the voice when his head is flooded with thoughts and then his head becomes to hurt and then he hears the voice like a whisper. He attends CHAMS but the seem to be doing nothing for him. The only improves that he has made is down to the adjustments we have made as a family such as home schooling him, changing his room so its calmer, making him a weighted blanket which was the only thing that calmed him the other night. I visited my doctor without ds to see if he could refer us to someone else because it just feels that all the services out there is catostrphoically letting him down and i am losing my strength fighting tooth and nail for the help he so desprately needs. It is heart breaking to see him in such distress and i am really worried he may act upon these thoughts. Last night i heard him switching his light on and off and 10 times becaus he said he was checking that everything was still there! He is constantly seeking assurance that the world is not going to end or that aliens dont exist. He has always had these fears and anxities but they seem to have sky rocketed in the last week and i have now idea why. I was just wondering if anyone had experience of this themselves or have children who have experienced this. I just dont know what to do anymore but reassure him. I just wish so much he felt safe and secure in his own head. Thanks for reading, Susan
  6. Well CAHMS was much the same today. Although, she brought in a dead wasp and DS completely freaked out but eventually calmed down. It was very upsetting for him but in a way I am glad they saw the severity of his reaction because i always feel they do not understand exactly how anxious he is, they have a habit of belittling his problems or making me feel like i am blowing them out of proportion. That's a great idea Stella! We did try giving him a water gun but he found the trigger tricky to pull and would run out of water and make one big mess so i am definately going to try the tennis bat. Thanks
  7. Thanks smiley. I think it is a combination of both the noise and the fear of being stung. The computer fan came on last night and he jumoed out his skin because he thought it was a bee in the room. He does seem really eager to go outside to play but cannot physically bring himself to do it. He says his fear wont let him. Its then he gets really down and beats himself up because he feels he has let us down even though we reassure him that he hasnt. I think for now I am going to not pressure him at all to go outside and just carry on as normal. We are back at CAHMS tomorrow when I will tell them i think their current approach is not helping. Will check in once we have been. Thanks again, Susan
  8. Thanks very much for your replies they have really helped. I was feeling a bit at a loss of what to do. I think I am going to call CAHMS and speak to the Doctor about me concerns. I do think that you are right yorks as that is how we have dealt with his other anxieties and they have never escalated like this. It is just so hard sometimes when he seems in such distress and the general public and other children show no empathy. I will try not to focus to much on it and try my very hardest to use distractions. Thanks again. Susan
  9. Hi, I havent posted in a while but here goes. DS has been suffering with the fear of flying insects for months now. In the past he has been scared of thinking something has got in his ear, thinking he has sold his soul to the devil and travelling back in time to name but a few. these fears seem to pass and are replaced with a new one and very occasionally the creep back up when he his feeling insecure about something. My problem is that for the past couple of months he has been attending CAHMS and they have been supposedly helping him deal with this current phobia. They just seem to making it worse as DS is a virtual prisoner and refuses to go outside. This fear is really developing into agoraphobia. They seem to be applying desensitization techniques to help him cope but this just seems to be making him more fixated on the fear in my opinion. We really are at our wits end because this is so distressing for him. He really wants to go outside and play but says he just cant and goes into a panic and feels that he has dissapointed everyone. The people at CAHMS are not my favorite i have to say. DS who is 10 was dx with Dyspraxia when he was 8. His appendix burst at 9 and as he never complained about being in pain he was referred to be assessed for Aspergers. He was assessed at CAHMS and after one hour the concluded that maybe he does but we will keep an eye on him and review him in a year. To me and everyone else I have come into to contact with is convinced that he has Aspergers. I had to take him out of school and have been home educating for almost a year because he just couldnt cope with the school enviroment. I know this is a lot of information but I would really like to know if anyone has any advice with regard to the phobia. Has anyone used any specific technique or have experience of this and if so what did you do. Thank you for reading, Susan
  10. suze79

    Xmas Song No.1

    I don't know why he has chosen to give to autism research but apparantly he his giving the money to the National Autistic Society.
  11. suze79

    Xmas Song No.1

    I have been supporting the much publisied facebook to get Rage Against the Machine to number 1 but i came across this today and it is absoultley beautiful. Tim Minchin is donating 50% to Autism Research which is just fantastic. Its available to but on itunes. Please give it a listen. It cheered me up having just came in from shopping in town and J having a panic attack over the stairs that have wide gaps. It is an absoultley beautiful song.
  12. Its a programme about kids who kidnap their dad because he is a workaholic and they never get to see him. Suze
  13. Hi Everyone Has anyone seen this new programme that is coming on on Channel four called "Kidnapping the parents"? My son keeps getting very annoyed about it because he cant understand how you can "kidnap" a parent and why they would make a programme about it because it is a crime. I dont know whether to laugh or cry sometimes at the literal interpretations he makes!
  14. Thanks for all the replies it has given me a few things to think about that I hadn't considered before. I tried telling him every time i see him doing to it to stop but he really freaks out and thinks i am giving him into to trouble. I think i will try this again but change my tone and language and hopefully get a better response. I think this is something that we will have to live with I just worry that he is overly anxious.
  15. Hi I was just wondering if anyone had any advice. My son keeps putting things in his mouth and chewing and seems to do it totally unconsciously. He puts anything in his mouth and chews it. We have been home edding for a couple of months but when he was at school he would chew his shirt/jumper/jacket. He has now stopped eating his clothes and has now moved on to whatever he can lay his hands on. Usually small things. He is 10 but I still worry that he may accidently choke on whatever he his chewing. Is there anything I can do to make him stop or should i just accept that this is what he does to comfort himself? Its upsetting when he does this because I think I am doing something wrong or else why would he be seeking comfort in this behaviour? Or is this just part of asd? Most recently he has been saying he is very very hungry. He eats well although does not have a particualrly varied diet and hates the feel of certain textures in his mouth, he seems to be eating constantly. I am begining to wonder if he just wants the feel of food in his mouth. He gets very upset when I tell he has had enough to eat. Any insights/advice would be gratefully recieved. Thanks, Susan
  16. Hi I am going through a very similar thing at the moment. You really feel like tearing you hair out. My son is 10 and was assessed at cahms and we were told that although he was showing traits of aspergers they were reluctant to give a diagnosis and would review him in a year. I think these peolpe try to get away with doing the bare minimum and underestimate how demanding caring for a child with multiple difficulties can be. I sometimes feel that they think I am making it up or exaggerating. I have been told by a few social worker friends that it is a resource issue. That if they "offically" recognise a problem then they are duty bound to provide supprt - which they can't afford to do. Anyway I'm sorry I couldnt be more helpful. I was told by someone on here to contact Autistic Society for further advice which I plan on doing and I also think I am going to seek a private consultation. Can I ask you how much did you pay for yours?
  17. I think we would all be happier if we could actually call whatever it is by a name. It so hard to explain to some people why we cant do certain things or why we have to be careful of what J eats (i did a lot research into additives, sugars etc). I just feel like we are constantly having to fight for everything and it shouldnt ne this way. I read a lot of the threads on here and can relate so much to a lot of the stories. A lot of them are word for word our own lives. I just feel so frustrated. I just want my son to feel happy and do things that other children can like playing outside, riding a bike and swim. I know he may never be able to ride a bike or swim but i just want to be happy for who he is. Thanks for the reply.
  18. Thanks for the reply, J is 10 and was first identified at school and assessed for dyspraxia when he was 6. He got diagnosed with dyspraxia and recieved a course of OT and we have been told he will get more at some point. We thought his behavioural and emotional issues were all done to low self esteem due to his dyspraxia but a lot of ocd behaviours just doesnt fit. It wasnt till he was admitted to hospital last year for appendicitis that the doctors there thought he should be assessed for AS. He did not appear to be in pain nor did he complain of feeling sore he was just really agitated and kept saying he was bored. His appendix burst and it was very touch and go because he developed peritonitis. Anyway when I mentioned to the doctors at the hospital that he was dyspraxic the said there was a possibilty he was misdiagnosed because of the behaviour they witnessed in the 4 weeks he was in hospital. I eventually took J out of school in June and am now homeschooling. I was sick of fighting with the school (4 years fighting) to get J extra help and support that I decided to home educate. The school failed to notice that J's clothes were constantly soaking around the neck line because he would chew his clothes in class. He would wet him self and not tell anyone because he was too scared to ask to go the toilet or say he had not noticed what he had done. The clock stopped working in the class which caused him great distress. The teachers just said "oh J has a remarkable imagination and he is quite eccentric", J thought time had stopped. I volunteered as a classroom assistant and was horrified to see the shell of my son in his class. It was like invasion of the body snatchers, he was totally vacant. I could go on about various instances with school including when J said a teacher hit him (she never she gently tapped him on the shoulder) but there are too many. Needless to say a lost complete faith in the system. J seemed to use all his energy to try to be normal at school that he seemed to turn into a robot when he was there and then gone into meltdown when he came home. I cant help feeling that the school and the health try to get away with doing the bare minimum of support they can get away with.
  19. Hi I have just recevied a report from the CAHMS team regarding J's assessment and I am devastated. They are telling me that although J displays difficulties in social interaction, difficulties with anxieties and dyspraxic type difficulties they feel it would "not be useful at this time, to explain J's difficulties with a diagnosis of Aspergers" and "we will review in a year". The report details the assessment but it does not seem to me that they are describing J's behaviour. The took a very detailed history from me which in part they got wrong and i had to ring them to make sure parts of it were corrected, they didnt seemed to pleased with this i have to admit. The assessment was carried out in March and we are only now receiving the final report! I had a meeting with the team who carried out the assessment and I fell to pieces. I dont know if anyone can relate to this but it is absoultely terrifying waiting to hear if your child has a disabiltiy that will affect the rest of his life but when you are told "mmmmm maybe, we'll look at him again in a year" was absoultely shattering. I know my son has this. He will not go outside because he has a fear of flying things. He opened the car door whilst we were travelling down the motorway because he thought he saw a fly. He has had to be taken out of school because he couldnt cope. He was wetting the bed and eating his clothes! He thinks he is going to travel back in time and that he sold his soul to the devil. He does not understand facial expressions (even though during the assessment they said he could) he constantly asks me, his dad and all the family is everything all right and stares at ou faces for ages to try and guage our reactions to things. The list is endless. I really thought if we had a diagnosis we would be able to get some help. But now it feels like they dont believe us because theyre one hour assessment said "mmmmmm maybe". We feel like we are going mad! I really dont want my son to have this but i know in my heart he does. Has anyone had a similar experience? Would it be useful to pursue a private diagnosis?
  20. Hi I have been home educating my 10 year old since june and all is going well. He still meets other children in home educating groups but best of all he has relaxed a lot and generally seems happier and much more even. Good luck to you. Susan
  21. Thanks for the welcome . I'm really glad I found this forum. Its comforting to know that there are a lot of people I can identify with. Sometimes it can be pretty isolating when you are surrounded by people who dont really understand.
  22. Hi Everyone I am mum to J who is 10 and G who is 2. J was diaognosed with Dyspraxia 3 years ago and received OT but that was about as far as support went. In school I found them to be utterly useless and unsympathetic. J is a people pleaser who would sit and stare out of the window in his own wee world. He was going completely unnoticed in school, i think if he had been acting up and having tantrums it would of been a different story but it seemed to me he was putting all his energy into appearing "normal" and would go into a semi catatonic state in school. I volunteered at the school (as they kept telling me he was fine) and to my dismay watched the shell of my son in class. It was like invasion of the body snatchers! Anyway, last year J was very unwell. Throwing up a lot and had a very high tempreture which was unlike him because he is rarely ill or should i say rarely complains. He ended up in hospital with a ruptured appendix. He never complained about being in pain only that he was bored and wanted to go home. He was agitated but just kept repeating he wanted to go home. It was the doctors at the hospital who first said he may have aspergers and so sent us done the heartbreaking path of discovery. It was also a great relief because after much research everything seemed to make sense especially J's anxiety issues of which there are many. He was finally assessed in June and we were told that although J shares many of the characteristics of AS and he certainly is on the autistic spectrum they felt it would be "unhelpful" to brand him just know and would review him in a year. After nearly losing my son when his appendix burst this was nearly as devastating. To be sitting there hoping your son as AS which you dont really want to be true but you know in your heart that he has it and if he doesnt get a diagnosis he wont get as much help as he needs and then to be told we will have him back in year was truly upsetting to say the least. At this point school was becoming a major issue for J. I had reached the point were I was literally peeling him of the car seat and dragging him into school all the while he was in hysterics. He would get upset because the clock wasnt working in the class room. He would see a fly outside and would think it could get in. They were having building works going on and he couldnt deal with the noise. They had changed the route to the dinnerhall which really upset him. I would pick him up and his clothes would be chewed and wet because thats what he does when he is anxious. After countless meetings with the school and me giving examples of why Jacob was upset about school (the clock thing really confused them) I decided to home educate. And so that is where we are now. Jacob is a lot happier. I just get so frustrated and sick of explaining why J behaves a certain way or why he cant have certain things. Outwardly J is an imaginative eccentric talktive boy. AS is such a hidden disability that a lot of my family members think it doesnt even exist. Anyway sorry for such a long intro. Thanks for taking the time to read and I look forward to reading the posts. Susan
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