seeking-sanity

Hi Ive been reading this thread, but not wanting to add a reply in case I upset anyone. Thanks baddad for putting it so clearly, none of us are on opposite sides of the fence we are all on the same side and like DAS999 said we are parents first and foremost, but still need some support sometimes as do our children.

Hi WE got a kitten about 5 months ago, Js 11 and he loves the kitten more than anything and if the kitten is around when he has his rages she can carm him down sometimes, I know that sounds strange but shes had an amazing impact on him and hes always talking to her, the only think is our other kids dont get a look in!!!

Hi Thanks everyone for all your replies, they were all really helpful. Hopefully it will all go smoothly and we can have some fun.

hi I wondered if anyone has been to legoland and how they got on, we are going on thurs and J seems very anxious, obviously the other 3 children are really excited, but we are starting to wonder what we've let are selves in for now, we are having two days there and two nights in a hotel. Starting to panic as hes not very good in busy places and I hope we can control his rages, it seemed a good idea at the time. So just wondering if anyone else has been and what it was like or if anyone has any strateries for legoland or hotel??? Any advice would be greatly appreciated. Thanks.

Understand totally this one, Jamies obssessed with cricket and would watch it 24/7 if we let him and I thought it would stop in the winter (silly me) cos now its australian cricket, I wish he would go on to something else cos I think its like watching paint dry, although my husband doesnt seem to mind!!

Hi Waccoe Just wanted to say this sounded so like my son when he was younger, J's 11 now and was only dx wtih aspergers and dyspraxia earlier this year and I disputed dyspraxia as he is very good at sports, but J has fine motor difficulties and although he now sees the OT it was the ed phsch that origannally did the tests and found out about his dyspraxia and she was the one that referred J to the Ot and this took approx 3 months and although hes only being seeing her for a couple of months the approvement with writing, dressing etc is unbelievable, so keep pushing I wish we had when he was a lot younger.

Hi Does anyone know of any support groups etc in the dorset area, we are in North Dorset?? Really appreciate any information. Thanks

I applied and got it first time, but they contacted consultant and GP, I wonder if they had consulted school whether we would have got it cos as in most cases the school dont see a problem!

Thanks for all your replies. Julian- I can see what you are saying and obviously J knows nothing of what was said, however she was wrong to say this she is obvoiusly not educated in the autistic sprectum and knows very little about J and I found myself justifing Js needs, which looking back I shouldnt of done, I found this teacher did not have the sense to realise that maybe J is coping better because he has the support he needs. Maybe more teachers in mainstream should do their homework and realise these children dont come into school with aspergers written on their foreheads. I feel Kat is right teachers are not qualified to make dx or to judge dxs, we all know they are not given lightly and the meds involved would have to be 110% sure before giving a dx. I loved your post Denise and I hope it made her think! This teacher did actually say Brook that it must be very mild and your right I did wonder if with her own judgement in place any difficulties would be overlooked. Thanks everyone for your replies it really helps, however it is sad to know there are so many people in the same boat. I'll stop now and hope I havent offended anyone. Beth

Hi Can anyone give us some advice please,, we went to meet Js teacher tonight, hes just started this school in year 6 after nearly a year out, hes dx aspergers and dyspraxia, the LEA head set up all the help he needed with 1 on 1 T.A and laptop, hes a very high verbal IQ but on the 1st centile on performance, but is very good at covering up. Anyway to cut a long story short his teacher informed us tonight that basically other than being anxious she thought that nothing was wrong with him and if he did have aspergers it must be mild!! We felt like she was calling us liars, they have the reports but dont have formal dx, which they will have first thing in the morning by me, I cant believe she has said this to us shes taught and known J for 1 week and only mornings. Sorry for the rant but Im so angry and dont quite know what to do, but feel these teachers shouldnt be able to get a way with giving dx or no dx after all the months of going throught the core team to get a formal dx. Any advice would be really appreciated.

Hi We get ours from consultant, as far as we've been told gps cant prescribe this it has to come from the consultant. Hope you get help with this as Jamie's sleep pattern is much better since being on it. Good Luck

Hi LKS- Just saw this and Jamie's having an assessment for a laptop today, I was told by the ed phsyc that if jamies handwriting is readable he would get laptop, jamies nearly 11 has aspergers and dyspraxic, but only fine motor, he has always struggled with his writing and his hands hurt after a couple of lines, the OT he has been seeing recently said to us she could not believe he didnt have a laptop ages ago, anyway what I wanted to ask you, is how long did it take for your son to understand his comp?? and did you mean he did his sats on it?? as Jamie has his sats this year and he'll either have to have a writer or his comp, but it would be nicer his comp, cos I think he'll feel his achieved more. Sorry for rambling on, but not sure how it all works.

Hi I found this article very interesting, I really do have my doubts about this jab,J had a bad reaction to his first jab swelling etc and was very hard work as a toddler, but just thought I had been lucky with my first two! He went on and had his pre school booster and had another bad reaction and after that jab his problems became so much worse and eventually dx this year with aspergers, hes now 10! My youngest had her first jab, had no reaction like J, but within 48 hours was taken into hospital for 2 weeks with pain and sickness, eventually told it was a kidney infection, but not one dr would tell us it wasn't a reaction from her mmr,I refused her booster, but even now(shes 7) the drs still write to me and are not happy with me, but she has a lot of as traits, not to the extent of J but I would not risk giving her a booster. Sorry how long I went on,but I believe if there is any doubt whatsever it should not be given until they are 110% it is totally safe for our children.

Hi MY SON WENT BACK ON FRIDAY, he was really nervous, he has been home tutored since last christmas, this is a new school for mornings only at the moment hes 10 and had a new ta, but tonight he has just said to me hes looking forward to tomorrow, thats the first time he has ever said that to me about school I felt like crying, just hope he stays like this. I hope everyone gets on well tomorrow. Good luck

Just thought Id let you all know received cheque this morning towards holiday and some electrical bits for J, really worth the wait, so pleased to get a result and thanks for your help.

Hi Our son J is nearly 11 and for years has not let me out of his sight to the point last year he wasnt at school cos he was so scared I was going to die without him, somehow he thinks if hes with me I wont die and you're right it is the hardest thing to deal with I hope with time J will get easier abouth this, but I think he will always worry, also he will not let his dad drive anywhere on his own in fear he will die, our whole household has had to work round this as otherwise even with his tablets we would not get any sleep or any peace, he still constantly asks how old I will be when I die or how old will dad be and it is really upsetting to know hes worrying constantly and what ever I say doesnt seem to answer his fears. I hope it gets better for you soon.

Hi Had the lady from family fund yesterday, she was very nice I showed her Js dx and all the reports, but was a bit worried when she said so he doesnt have communication problems, wondered if she knew anything about aspergers at all!! Anyway just have to wait and see now, fingers crossed.

Hi I wondered if anyone knew what to expect? I received a letter from Family Fund this morning, someone is coming to visit us within the next 4 weeks, what is this for? Also they say to speak to us and Jamie? Although Im quite happy for her to meet Jamie, Jamie doesnt know weve claimed this and not sure how he would feel? I just wondered if someone who's had a visit, knew a little of what to expect? Thanks for any help.

My sons school or mailnly one very ignorant teacher, who still now knows better than the peadiactric consultant and doesn't believe his dx!!!

Hi Found this thread and think it is brilliant! Jamies Grandad said to us the other day make him stay here for a fortnight I'll soon sort him out!!!! The other one I hate is hes got such a lovely face he'll be alright!!!!(not denying hes got a lovely face but what the hell thats got to do with it) I could go on forever with this one, cos it makes me sooooo angry.

Hi Carole Thats a really good idea Jamie has never met a adult or child for that matter with as. The only things Jamie is interested in is cricket and football and we have tried and tried to motivate what used to be a boy that didnt know when to stop playing sport, occasionally he will go out the front with his dad for a bit of cricket, but hes happier watching it on tv, but he will once a week play for a team if we are with him, but it is very sad to watch as hes very good at it, but he dosnt like people crowding him so he keeps his distance from all his team mates. He will not walk anywhere with me or my husband for fear of being beaten up and we have major rages if I have to drive to the shops or to post office, Ive been using social stories, when I do manage to get him out of the house he constantly thinks people are looking at him, even at cricket, he also thinks people think he is stupid , which of course he is not, hes a very bright boy, but recently the OT told him his proccessing was of a 4 year old(which was really helpful!!) Ive backed of doing his hand exercises because he became so frustrated, I feel right at this moment he has enough in his life to cope with. Also when ever he does come out with me I have to constantly re assure him that everything is okay and he has to be so close to me. How long did it take for David to come through the worse? How would I look into meeting other people with AS??

Thanks for replying Carole, Jamie is having counselling, but it has only just begun, she thinks the more he knows about aspergers the good and bad might help him with his feelings? Jamie has done very little of year 5 and not been there at all since feb, he has had a couple of sessions of home tuition a week, the lea have just agreed 25 hours a week 1 on 1and a laptop, this is not at his old school as the was no way we would of got him back their, but the little school hes going to go to he seems to like, but until sept we just dont know whether he will go or not! The phscy did say J was depressed, but wanted to try counselling before medication, which I agree with, although hes on Melitonin for sleeping which did seem to help to start with,but not any more! Thanks for all your help Carole its really nice to talk to someone whos been through the same sort of thing.

Thanks Georgina for your reply it really does help talking on here. Carole - Js 10 nearly 11. He does share a room with his 15 year old brother. Jamie sound so much like your son in a lot of ways his phsy has tried talking to J about this and his fear of us dying, but at the moment I just cant see an end to it nothing seems to get through, he still wont leave the house without me, its been nearly a year now since Ive had a break from him and I know he has desperate problems, but its draining me and my husband, do you know if there any help I could ask for, like someone J could build trust in to eventually give us a break even for an hour or two. I love J so much, but I really think I need help for the sake of my family. Sorry for going on having a really bad day today.

Hi I feel so cross and guilty with myself today, I lost my temper with J last night, im so tired and just dont feel i can cope, Js with me 24 7 I have no family around me, my husbands at work and js one of four, the other 3 are really good, as good as two teenagers and a 7 year old can be, I feel guilty i have no time for them im just washed out with J all the time, hes not at school at the moment and is very emotional and has decided it best not to goto sleep in case he dies!! so he keeps everybody awake our 7 year old looks like a zombie cos shes so tired, hes on sleepers, but just seems to fight them , last night it was about midnight and he was still screaming and prodding the other kids and I lost it, I know ishouldnt have, I shook him and told him I couldnt cope with him anymore, Hes still not talking to me and thinks I dont love him, Ive desperatly tried to explain I was tired and he was being naughty, but he wont have it!! I feel awful toady and dont feel worthy to have such a special boy, but very hard work.

Hi Tez Although Im not brilliant at writing either I thought your letter sounded find, I also wanted to add to your thread, cos it sounds so familar to our recent circumstances and in the end I requested an assessment, which was refused, but last week the LEA asked for a meeting with us and the ed phsyc and they have offered J 25 hours 1 to 1, a laptop and a taxi to and from school this is set for 1 year then reviewed, we couldnt believe it . His school, although knew J had dx of Aspergers and Dyspraxia hadnt been very forthcoming. Js a present year 5 and has been out of school since feb, but hopefully will be going to another school by sept, but cos of his anxieties would not be able to return to his present school, who have let him down. I hope you get somewhere with your letter, but maybe you should consider doing a parent referal. Good luck and thinking of you.