mom on a mission

yes my son was diagnosed three years ago when he was two years old using DISCO , we spent about three hours answering questions asked by a pediatrition and a speach and language therepist it was tyring and alot of the questions at the time seemed irralavant (although i now understand why they were asked) after the questions we went home and waited for an appointment to go back which took about four weeks during that time the DISCO assment team received a report from my sons pediatriton (who had alredy told us our son was on the spectrum)a report and video everdence from a clinicle pyschologist and a report from the nursery, when we went back we were given the diagnosis of AUTISTIC SPECTRUM DISSORDER so still dont know where he is on the spectrum but does it really matter iam not sure ! DISCO seems to be a very informative and accurate assesment procedure ,so chin up and keep smiling your on your way to getting answers. <'>

so pleased to hear that some of you have managed to get help from disabled resourses we tryed this grant for a bedroom for all the same problems with our son however after two years of constantly chasing them up and sending letters of support from various proffessionals they turned us down flat and there reason was that under there guide lines autism wasnt a dissability ! we have had no support from them atall , we had to have bars fitted to the windows as my son kept climbing out, we had to fund these ourselves as they wouldnt help ,again our son isnt dissabled ! of course all children are convinced they are spiderman and can jump from windows how ever they did give us an opption on the bedroom situation we could sell our home and be priority on a council list for a three bedroomed house , which just isnt really an opption we have struggled hard to get on the property ladder and dont wish to come off and imagine the stress of moving weve done it once with our son and it was a nightmare not to be repeated. any way i havent been on site for a while things have been bad i have been diagnosed with MS so disabled resourses here i come lets see if they can help my family this time around. for those of you that do have success with them good on yer and keep it up they need to understand and help more familys devestated by asd. WELL DONE

hi i have a car magnet that says proud parent of an autistic child and an autism awarness one and a sticker that says autistic child on board i got the magnets from www.buttonsandmore.com it is american but really cheap and the on board sign i got by searching the words autistic and proud and i found them on one of the links from there , i also have from buutonsandmore some window decals that say warning occupant with autism may not respond to verbal clues ,these are great for the house to alert emergancy services in the event of a fire e.t.c and on the car in the event of an accident hope this helps !

iam still very unsure about the mmr i wish someone could prove once and for all if there is a link or not so that parents didnt have to worry my son has been vaccinated ,when he had his first vaccination at 18months he was already undergoing assesments for autism and to be honest i had not heard of any links then, however i had heard all the therorys when he was due his second jab by then he had been formaly diagnosed with asd so we asked questions got told not to worry and went ahead with the second jab and i can tell you as the nurse injected him i cried i was so uncertain of what we were doing but luckaly it did not seem to do any harm apart from a very swollen leg , i think that in my sons case his asd has come from a number of factors mainly inherited but also i had painkillers all the way through pregnany he was born early starved of oxygen and so on i do not think the mmr took a part in my sons asd but on the other hand i do beleive that for some children it may have played apart . will we ever no the truth about this drug and in the meantime what are parents to do , asd is devestating and a life long challenge but measules can kill cause deafness and blindness as well as multiple limb amputation , i made my desision based on the fact that my son can walk ,run, climb .see the world and hear the birds singing yes he may not see or hear things quite as i do but atleast he is living of course his life will be a struggle but i would rather have him with all his problems than not have him atall which is what i risked if he contracted measulles (which he did a few weeks ago)this is just the way in which i justified my desision for me personaly and is not meant in any offence to any body else and there views as when i here parents talk of what they believe the mmr did to there child i believe and trust in there thoughts completly and i can not imagine having to watch my child dissapear i suppose it was a little easier for us as we always new right from the first week he was born that somthing wasnt quite right. come on mr blair give us some straight honest answers

i think that the lea need to remember that altough several children have a diagnosis of the same disability they are in no way the same, each child is unique ,each child copes with there disability differently , no child fits the text book and every child is able even if only the smallest of achievments are reached they have still achieved , and of course believe in the parents , dont make parents feel that its them against the world because from my experiance of schools and lea you trust no one belive no one and lose faith in yourself and your ability as a parent and we have the lea to thank for that , and last but not least inclusion does not work for every child and after all what does inclusion mean i hope to think it means to be accepted , happy , content and to feel you belong without having to change who you are ! can that really be provided for autistic children in a mainstream school (maybe for some but for the majority no)also just because our children have asd i does not mean that they are abused , neglected ,unloved or unreachable so i suppose all in all the key is to accept each child for who they are despite disability (they may come under the same heading but are not the same child)and listen , respect and work with parents . please feel free to use any of my postes for examples of parents feelings and wishes. AND GOOD LUCK

hi thanks for the advice he doesnt understand thoughts as such yet so it would be difficult to explain i have tried asking him when hes calm but he just lets out a scream and starts hitting at his head , it could possibly be the noise of running water ,he does have a fear of water running in case it over flows but usually im not allowded to take my eyes off the tap its not usually the sound unless his fear has intensified even more, i will keep a note of what i can see and hear when it happens thats a good idea , i am wandering if it is connected to returning to school next week as he has major problems with school and keeps telling me hes not going back (iam going to home educate him but ideally i want to hold off untill after christmas for lots of reasons) its just so strange its come from nowhere, i just wish i could understand what hes afraid of i guess time will tell me its just horrible to see him so distraught, thanks for the advice atleast i know theres other kids out there that do similar things i have to say he had me worried that he was the only one as ive never heard of any child doing anything like that before. thank you

hi all , as you know my son is five now and has asd , we have faced lots of problems along the way and usually found away to deal with them however his latest thing has got me stumped , he has recently started to scream and cry (and i mean really cry) but at the same time he keeps shouting "shut up just shut up" and holding his ears or hitting himself in the head , the problem is that nobody is actually saying anything when he does this , its really distressing to see as he is extremly upset and unconsolable and appears very very afraid ( you know ! not knowing which way he should turn,sit down or stand up e.t.c) i just dont know what to do or what he wants to shut up how can i calm him down how do i know what is wrong ?have any of you had this problem and succeded in beating it or got any advice for me to try it would be much apprieated im willing to give anything a try.

hi all . thanks so much i have joined the list and education otherwise i have also purchased that book a few days ago and iam half way through reading it , its very good. there was a peice in my local paper today about home educating it was saying that there has been a huge rise in families taking children out of school and in the area that i live the lea are aware of 52 children who are home educated and the main reason was due to bulling , well atleast we are going to develop a very busy social life if there is that many children in one small area ! it does show the mass problems with bulliying and the lea have been telling me that they have bulling under controll and children would accept my son even without him communicating sorry had to laugh dont they realise just how cruel children are i watched my brother suffer terrible emotional , verbal and severe physical abuse in a mainstream school ,how he survived i dont know he did become very ill and is very much a loner now, he still lives with our parents he has never been diagnosed but obvious asd, i will not let my son experieance even a fraction of what my brother did so deep breath eyes closed JUMP home schooling here we go!

carole , i will be home educating my son and any lists or advice you could give me would be fantastic i will start to home school in january as i need to get a few things sorted out first , but it is definatly the route iam going to take ,my son is five and diagnosed with ASD he is also selectivly mute(only at school though) and suffers severe social anxiety ,he is also dyspraxic and i feel he is dyslexic but the school wont assess him,the problem we are having is that because my son withdraws in himself and isnt disrubtive the special school he attends are saying that he is capable of entering mainstream, however they sent him to a mainstream school one afternoon a week and he hated it he aventually made it very clear to school staff that he couldnt cope , but they still want to send him full time(over my dead body mind) we are to meet again to review the situation in december/january it is then that i plan to inform them that he is to leave , i have my plan in place for them to see if they like , can i take my son out of the school as soon as i have written to the lea or do i have to wait for there reply to my request. iam worried that if he is in school whilst i wait for permition then staff may make life very difficult. any way any advice you can give will be absolutly brilliant thanks mel

its so nice to hear how home educating works for people iam definatly going to give it ago its got to be less stressfull than having to deal with the after school melt downs and the constant battle with the school (they want him in mainstream i dont) .iam sick and tiried of the constant battle to get the school to understand my son i know i can do better than they are doing at the moment , i may not be a qulified teacher but i know my son and he has every trust in me so together iam confident we can make it work. any advice on de registering a child who is statmented from a special school will be much apreciated THAT BIT TERRIFIES ME its because ive been accused of all sorts in the past and with the stories you hear of children being wrongly removed from ther families its a very scary process, when i mentioned home schooling to the school they said it would be no good for my son and then wrote to the lea to make them aware of the situation they implied that we were abusing him of course we are not ,its ther way of intimidating us my husband is a police officer and went to theshcool to remind them of the conseqenses of false aqusations neadless to say weve had enough we wont be frightened into sending our son into an unapropriate envirnment and we will take his education into our hands where it will be safe, and my son will be happy its what he deserves bless him.

hi ive been doing a lot of research on home educating as i feel it is the avenue we are going to take with our five year old it will be january when we start though as i want to finish decorating my house and get christmas out of the way, i doesnt seem to matter which way you educate your children from what i have read just being out of school makes them happier and gets them wanting to learn we are oppting for formal work but only for an hour or 2 the rest of the day we will learn freely iam preparing a room to use like a class room with a TEEACH system in place and will be purchasing national curriculum material from "WITSEND" its very reasonably priced , this is not the way most people home educate but i feel that my son will be best suited to this situation and well if iam wrong i can always change the way we do things, i have just brought two books on home educating children with ASD iam just reading them but they seem very informative and inspiring if any one would like to read them when i have finished pm me and i will be happy to post them to any one who wishes to borrow them.

hi great news the family fund are brilliant the lady that came to see us a couple of years back was very nice my son was present as he was only two at the time but he was constantly hitting and biting me there were lots of questions asked but all relevant they were very helpfull and have been every year, for instance we applied to disabled rescources to have a bedroom built we had support from the hospital for this and everyone who worked with my son, as he was sharing with his elder sister and was only sleeping 2-4 hours and then waking in violent rages always amaied at my sleeping daughter however after chasing disabled resourses for 2 years they told us that they would not even apply for a grant for us as our son did not fit the criteria and autism wasnt a severe disability hence to say we were annoyed but needed to get him into a room of his own so reseached and realised we could build one our selves we telephoned the family fund and told them what had happened and they sent us a cheque for the cost of bulding materials and now my children have rooms of there own ,my daughter can sleep with out fear of being attacked, ive become a builder over night and all is well THANKS TO THE FAMILY FUND

hi brook, ive not read the book yet but i have ordered it from amazon a few days ago i allso orderd home schooling the child with aspergers (or somthing along them lines) i ordered them to see if they give me some insite into home schooling as i think we will be starting to home educate or son due to the lea wanting him to go to mainstream rather than staying at the special school he currenyly attends, glad you found it interesting i hope it gives me insperation and the confidence to go ahead and deregister my son.

hi my son was first seen at around 18months old and was formaly diagnosed around the age of two with ASD there is a history of ASD in the family though.

fagsandbooze, glad the letter arrived at least you now know for sure , dont worry about not feeling anything different the next few months become a roller coaster as the news sinks in. take care, and hi lauren thats three of us stoke lasses on here then, youve moved on though but the area does seem to be doing well with the diagnostic prossess though shame about the lea

lisa glad your not so blue now and youve got your fighting spirt you show em girl as long as you and your boy know the truth they cant get you down you just keep on being the best mum you can its the best revenge stay strong and take one of these <'> just in case and when you get to your appintment sit like this and then give em some of this i know that all the while you will probebly be feeling like this . these smiles are cheer you up dont they , great invention. chin up it will get easier just have to learn to keep your head held high. <'> <'> <'>

hi fagsandbooze, sorry there was no letter today but you know what the post is like around here you should get it monday if theyve posted it , my son went to the child development center first of all where he saw a pediatrition who imediatly said he had autism he didnt put that in writing though so we were refered by a clinical psychologist at the special needs nursery my son was attending to the hospital for a D,I,S,C,O assessment it takes four hours of non stop questions they allso had reports from the psychologist who had been coming to the house for over twelve months observing his behaviours and a video of him from nursery e.t.c we had to go to the maternity block for this and then four weeks later we went back to the maternity hospital for the results , they were the longest four weeks of my life i can tell you, i think i probebly looked like id been on the bottle for years then again i think i did hit it a few times during them four weeks , keep your chin up it will come and us mothers always know deep down what its going to say it just becomes real when you get it in writing, sorry to here your moving out of the area cant say i blame you though its ok where we are its really quite, the sen provision is a load of tripe though , keep us posted on that letter arriving though ,take care <'>

blue, First of all YOU HAVE DONE NOTHING WRONG often these assumptions are very outdated my son was diagnosed with asd and selective mutism which is a refusle to talk to anybody other than his imediate family if you look up selective mutism most information would suggest that it is caused by abuse or emotional truama this is not the case atall my son has never suffered any abuse or emotional truama although his ed pysc implied that he must have done, what i said was well if i had abused him then wouldnt he be afraid of me rather than being over attched she didnt have an answer i have reseached selective mutism alot now and understand that it is caused by severe anxiety and nothing to do with abuse and surprise surprise where does the anxiety araise from high functioning autism at the moment selective mutism is not part of the autistic spectrum although there are arguments to say it should and i agree that it is very much part of my sons autism and I CAN TELL YOU NOW THAT ATTACHMENT DISSORDER IS CAUSED BY SERVERE ANXIETY which can be caused by the ASD creating a fear of being seperated from the person who understands there difficulties and makes them feel safe and secure i know this because through all my research on selective mutism i have come across attachment dissorder many times and the view that it is caused by neglect is outdated and wrong although like selective mutism some proffessionals may take the out dated view but those proffessionals that do arnt doing there job correctly because they couldnt be further from the truth you hang in there you know the truth whigh is you have done nothing but the best for your son so who can blame him if he feels overly attached to you after all for kids with ASD the world is a scary and confusing place and if in that world they find one person who makes that bearable then why shouldnt they grab a hold of that person and not let go. chin up look at it like i do you must be doing the best you can and succeding or your son wouldnt want to be attached to you . <'> <'> <'> <'>

hi, im not sure i can be of any help as your son is in his teens but you have brought up a question myself and my husband have been discussing about our eldest a girl of 7 her brother whos 5 has asd and is very demanding and violent shes always seemed to accept this and hasnt been a problem but for the last few months she has begun to cry at the slightest thing , lock herself in her room and just seems very down ,she does often say you dont have time for me ! i try to do the best i can but with my husband working full time shifts and me surviving on 4 hours sleep and then having to control a very demanding and violent child my best just isnt good enough at the miniute with fighting education on top of it there isnt enough of me to go around i know she doesnt get the time she deserves but we do try to give her as much as we possibly can i wander if it is just the us not giving her enough time or is she suffering with depression its a tuff one we are not sure how to handle things at the moment so i know how you must feel also my daughter has started to copy some of my sons behaviour like not talking and just screaming, pinching herself , running off and throwing herself on the floor e.t.c i know that is attention seeking i just dont know how to handle it in case she is suffering with some depression aswell, who said life was easy!

hi fagsandbooze, welcome back ive had a few problems getting on to the forum too im getting on ok but then it cuts off and aload of error messages come up, im usless with computers so i shut down and try again. good one with the name change it made me chuckle i read it and thought mmm know that thought , hope you are well any news with the diagnosis yet , have you got to go to the city general to get the outcome thats where we had to go it didnt take them long to tell us infact i knew as soon as the doctor walked in the room, she had a nas leaflet popping out from under her file we had to wait a few minutes for our sons doctor to arrive then we were told the news they simply said iam sorry to say d--- has been diagnosed with autism how do you feel, have you any questions which of course we didnt at that time ,then we were told to apply for dla and that was that ,my sons doctor just said are you ok ,we had talked about this hadnt we so you knew that he would be formaly diagnosed he then said we could call him at any time if we needed anything it think we left in one sense releived in the other sad and very confused but it wasnt a moment to be sorry about it was the moment to say right ok it hasnt been our fault there is a problem and we will face it head on , neadless to say two and a half years on we dont takle the asd head on we walk hand in hand with it after all asd is just a small part to one wonderful child . Hope your holding up if you need a chat pm me or email chin up chuck ! keep us posted <'>

hi all, you should try this website its address is www.buttonsandmore.com it sells all sorts of autism awarness stuff thats very inexpensive it is an american site run by a man named richard who as a daughter sarah with autism all his items sold go to raising money for autism research i have being buying from richard for over two years now hes a fantastic father and his items say it all he has just teamed up with the lady selling on ebay however she sells the products at a more expensive price and doesnt donate to charity allso richard has a lot more choice and is very prompt with delivery i definatly recammend having a look at his web site also if there isnt a badge on there that appeals contact him and he will make you anything you wish, ill say the address once more cause i cant do links its www.buttonsandmore.com hope you like the site big it up for richard hes a good guy

hi glad you feel it went well it sounds like you went for an assement called D.I.S.C.O they use dsmiv and icd10 crideria to diagnose asd . my son was diagnosed using this system when he was two years old waiting now is the difficult time so keep your chin up and <'> <'> <'> keep us all posted

hi , my son is five and he does know that he has ASD but i dont think he understands what it means recently we did try to explain but he just screamed punched himself in his head and ran off we were only trying to expain because with all the educational issues hes over heard alot of ASD talk lately but obviously he must be too young to be told i think anyway! im not sure there ever be a right time or way i guess we will just deal with the issues when they arrise

hi , my son is five and is diagnosed with ASD he is obviously high functioning academicaly and his IQ is felt to be above average and yet he has no usfull intelligence what i mean is that hes very brainy and yet would walk into an on coming car without blinking i think the more interlectual a child with ASD is the harder it is to see the traids as they can pretened to be "normal" very easily i would say if the school as picked up a problem then follow it through and if a diagnosis comes back as AS then take each day as it comes atleast you should have the school supporting you and thats half the battle as most of us on here struggle to get schools to admitt there is a problem my son has a diagnosis and attents a special school and yet they say he functions as a normal five year old does apart from being selectivly mute what they cant see is that selective mutism is an anxiety dissorder that is so bad it prevents the child from speaking outside a familer environment and woh and behold the anxiety steems from him being so confused during the school day that he can not speak , i would take a look at a tread on here called "the passive child pretending to be normal" it may help to give more insite and what ever happens hes still your boy AS wont change that, chin up <'>

hi , my son was diagnosed 3 years ago when he was just turned 2 and before his diagnosis there was lots of support and people involved but since his diagnosis there has been nothing it seems like once you get the diagnosis then they think thats it they will be fine of course thats not the case and even now three years on life is a rollercoaster of emotions but if you need help , advice , a sholder to cry on or some one to shout at your in the right place and the best thing is we all now how it is so theres no explinations or excusses needed keep your chin up you will find your way through this and every one will be with you one step at a time side by side <'> <'> <'>