cait

thank you yes that was a good idea about adding it to my topic title....doc says it is a rare genetic disorder..but some doctors believe every child with autism should be tested for the fragile x gene because they believe it is the main gene which causes autism....my only knowledge of the condition is what ive read on wikpedia......they want to test for it,due to my family history..and all my children seem to be affected by some degree with some form of neurological disorder.....to be honest im a mixed bag of emotions at the moment..relieved to an extent because finally someone is listening to me about my little boys needs...sad and emotional, because i worry for him he is really struggling at school and has a lot of sensory issues..trying to get things straight in my own head to be trueful wanting to start fighting his corner getting him the support he needs....and yes a little apprehensive about the future and if confirmed what will having fragile x mean for him and worried incase they will need to test my other children if its confirmed....and then i will probebly go through a period of self blame because it is i whom has given them the fragile x gene..so i am kind of a mixed bag of emotions at the moment.

thank you for taking time to answer my question....my eldest a girl has a dx of AS ADD and asscociated mood disorder her yonger sister ADHD my eldest son has no dx confirmed but school believe he has ADD and possible dyslexia....i was just concerned because it had never been mentioned with my daughter thanks again for answering my question...cait.

my 4 year old son had ASD confirmed today,but i was wondering the cdc have left me stunned..there is a history of austism and asd in my family and they want to test my son for fragile x syndrome...this is new to me and im feeling very confused i know he might not have it but they want to test to be sure he is showing a lot of the charactristics of fragile x.....has this happened to anyone else...it would be great to speak to someone who has been down this path...thanking you in advance...cait

thank you for your reply ...i will def try to get a copy of the book...he has been referred to an O.T as well...he has been waiting for appointment with c.d.c for about 14 months ive been assured on phoning them frequently he will be seen during march...haircutting, teeth brushing, nail cutting are really difficult, bathing or shower is now ok although it wasnt for a long time but he is hysterical getting his hair washed...im aware of educational pys, A.S.D. outreach services,i.e.p/ ect ive been through it with my eldest daughter whom has a diagnosis of aspergers.A.D.D. and asscociated mood disorder..i believe she is also dispraxic but has never had a formal diagnosis as such she attend a clinical pyscoligist as does my 7 yr old girl she has a diagnosis of A.D.H.D....and they said after zacks initial assesment at the C.D.C they are willing to take on his case as well. again thank you for taking the time to reply I have found your advice very usefull.

My youngest boy is 4 and is still awaiting assesment....i believe he has aspergers or will def fall in on the spectrum somewere....he has lots of sensory issues,particulary to noise,lights,which he is over sensitive....but he doesnt seem to hurt himself easily ive seen him walk into objects which have bruised him and he has just carried on...but recently, suppose from about september time, beginning of primary 1....he has developed this need to enclose himself into tight spaces clearing cuboards and things, to climb into them and shut the door..he is the youngest of 4 and i know at times he is overwelmed by the stimuli around him in the house he also has to share a bedroom with his N.T. brother who is jst 16 months older than him..i have often found him asleep underneath his bed....instead of in it...outside, or in social situations he cant cope with he buries, his head and face into the base of my back and holds on to the pockets of my trousers,... or if he had a blanket would cover his head and face with it.....he has recently had a full meltdown over wanting to be in the boot of a friends car and not in the car itself....i dont know but knowing his need for small spaces school must be awful to him....and yes the teacher has said he has beeen acting out in school he can be quite violent and distructful during his meltdowns...i just feel so helpless as a mother i want to try and do everything i can to make it easier for him..its so frustrating he has been waiting about 14 months to be assessed and is expected just to cope with mainstream school ...no extra help no I.E.P....it is really worring me because his meltdowns have been much worse from starting school....

hi you didnt sound grumpy at all lol...jst wanted to make sure i didnt offend you..I understand fully what you are saying and yes it makes perfect sense...history should not repeat itself with any child like my daughter....so heres hoping.

Again thank you, i really appreciate it...I didnt know that kind of help excisted. I will look into it..once i have had my youngest one assesed hes only 4 and is having a lot of meltdowns in school, seperation issues,sensory issues extreme joint pain oh the list is endless he is my num 1 priority at the min he has appointment for C.D.C in march so fingers crossed, he will start to get the help he needs.

thanks....but i wouldnt know were to start, asking them for things im entitled to......i was promised a long time ago a carers treat. i was ment to go for relaxation therapy,head massage ect....they came out the house and assesed me for it that was a year and a half ago and im still waiting lol...i didnt even know there was such a thing as "direct payments".....thank you. <'>

the words you say are very true.... I would give anything, being an N.T. to step into my daughters world and fully understand her....oh yes i KNOW and love her deeply but will never truely.. no how she sees the world...but i have to believe as her mother (for my own sanitiy)that she will be able to have some peace within of the person she is and as u say shes an asperger and that is acceptional in my eyes...im truely sorry if i offended you with my comment....and i appreciate your honesty...and yes she is 15 at the end of this month... and i have no idea of what the future may hold...all i know is I will be here for her and my other children in everyway i possibly can.. thank you for taking time to reply to my post...

hi ive just found this site recently and im finding it very helpful....im single mum 2 4 kids caitlyn has diagnosis of aspergers A.D.D and asscociated mood disorder..nikita A.D.H.D,gregg N.T. though not without his quirky ways and youngest zack in the process of assesment i believe aspergers or spectrum related disorder...the processs differs slightly regarding were u live...you mayb reffered to a school age A.S.D. clinic..the school should be pushing for her to be seen by an educational pyscoligist,to have an I.E.P. "individual education plan" put in place as for statementing she would def have to be seen by an educational pyscoligist...if she was fine with how you treated her before i would carry on in the same way..there are lots of good books and web sites out there that carry info so arm yourself...no to children with A.S. are the same try to listen to your daughter and good luck.. oh sorry i should have said a "statement" would be a statement of your childs special educational needs,

hi my eldest daughter "shes 14 now"has a diagnosis of aspergers,A.D.D and associated mood disorder....she is one of the most beautiful,unique,couragess and honest people you could ever meet...im so proud of her and her attitude to what life has threw at her...dont think bout what the past has threw at you think about the future and try not"although i know its hard not to" put yourself down...we are all equal regarding to disability,race religon or whatever else...glad you are going to stick around for a while......

it can be draining....but the rewards far outway the exhaustion....i dont have any "family support" as such the clinic, my eldest two attend are grt...their has been a social worker, appointed to them through them attending that clinic...but that is just at their routine appointments and check ups..so to answer your question no i dont really have any outside help..i organized,. to set up a parent and carer support group with the local sure start. so people who find themselves in the same situation, as myself can come along and talk about there worries or whatever they feel the need to get of there chest...with people who understand.x

thanks everyone im not very good at this posting lark either tried posting a moment ago and i dont know were it went.lol..im sure i will find this site very useful it is good to talk or rant lol to ppl who understand.

sorry im hopeless lol i reposted your comment when i tried to reply.lol sorry again.