aurtisim

[charliesmum]

My 12 year old son has only been diagnosed with aurtisim for 2 years .We've been through hell and high water with him and the lack of communication and help from medical people .The dammage is already set within my son now through years of mental scars from abuse and miss treatment from others because of his problems .I get no help with him and now as hes reaching teenage he is becoming harder to handle .Is there any body out there who knows what we are going through and could help ?? where do we go to find help for him ?

[Mopsy]

Charliesmum
I've no experience of autism but couldn't read your request for help without responding. Searching in Google for "autism +UK" brings up various organisations you could approach for advice and support, the main one seems to be the National Autism Society

www.nas.org.uk

also get your health visitor to find you a local support group.

HTH, let us know how you get on. Thinking of you
Mopsy x

[susanmt]

The eldest of my 4 younger brothers is autistic and was diagnosed at 10. I am 6 yrs older than him so remember a lot of what went on.
Definitelt get in touch with the NAS.
You should be able to get educational help for him. My bro went to a Steiner School which helped him learn to communicate SO much better. He is now living in a commmunity in Wales which specialises in Autism - age 26 he is not totally independent but getting there.
If you want to get my email from the moderators and email me about this I could give you some pointers if you want?
All the best in the meantime
Susan

[anoushka]

i am horrified to hear your story what part of the country are you in i live in london and there is a group of parents with special need it's called contact a family it wonderful you are put in contact with another parent with a similar autistic child and they can give you advice on where to go and what you are entitled to get like are you getting disability allowance and invalid care allowance it is both not means tested so you dont have to worry about if your other half is in a good job you should be able to get their number from your health visitor

[Loobie]

my 6 year old son has aspergers syndrome which is an autistic spectrum disorder,he was only diagnosed in january.we were given the diagnosis and basically left to get on with him,try all the search engines you know ,typing in autism or autistic spectrum disorders this is what i had to do to teach myself about my sons condition.Also ask at your local library or your h.v about a support group in your area, i go to one every 2 weeks and it provides invaluable support just knowing that there are other kids the same as mine and other families having the same difficulties.

[charliesmum]

Thanks for your help , its nice just knowing there are others out there who acctualy care about this disorder and those coping with its effects . Anoushka ,I live in linconshire (Louth) and its as remote as you like when it comes to organisations etc, I dont get d.l.a for him i have aplied 3 times for it but they send back letters telling me that there is nothing wrong with Ben and d.l.a is for those who have limbs missing and are far more dissadvantaged than he is . Ben gos to a normal secondary school but has a special helper for two hours per week ,he gets bullied and no one seems to want to know about it you tell the school and they say ben has never come to them about it .........well he wouldnt would he !he did tell the head the reason why he spent so much time walking the halls in lesson time and that was because he didnt like the classrooms ,they where too squaire! they think hes a barn pot ant ignor him mostly .thanks sobernow for the number ,and Loobie my h/v is as much help as a chocolate fire guard.

[charliesmum]

hey I found an Autistics group near enough on my doorstep, bit far for me to walk as we've no car and buses dont run that way ,but i've called a few times keep getting an answer phone though I hate answer phones i just go to bits with thembut i will keep trying .one question will they help teenage autistics Ben is more the asperges end of the spectrum he can comunicate very well when it comes to cars and trains!he came home yesterday with a black eye ,but what can you do when the school tell you its just all part of school life and he has to learn that these things will happen .????

[Loobie]

How heart remding is it when they come home and you just know someone has hurt them but as you say the school really arent concerned and you get the usual outcry of "well he didnt tell anyone" but as you say they dont tell though do they. My son also hates the classroom and spends most of his day sat in a corner or under the desk as the "class is too busy and noisy".His Ed. Physc. said to me on tuesday when i asked about getting a 1:1 assistant for ds "you dont really want an adult sat beside him in class all day" i felt like saying well yes that is exactly what i want for him but he made me feel so stupid that i never said anything.i am waiting for someone visiting next week from a group called partners in advocacy. They are a voluntary group who work with special needs or disabled kids and adults to give them a voice and make their feelings and needs known so hopefully they can help me with the school issue.Dont you just wish sometimes that you could take them out of school and teach them yourself.

[charliesmum]

Loobie you said it all ,you don't get any thing if you don't fight like hell for it , thats not right, there are people out there who bleed the system for all its got and then there are people like us who suffer the consequences of there actions through lack of funding or man power. I offered to sit in Bens classes with him and assist him with no cost at all to the education auth; all i was told is that it wouldnt do him any good socialy ,may be it would'nt but at least i would be able to protect him from the bullies and understand his little querks and i wouldnt pressure him in to getting changed for p.e and back again so fast.these kids need to take there time at things to even try and be able to understant this freaky world we live in . Ben's eye isnt as bad as i thought now thankfully but that isnt the point is it .

[charliesmum]

I was just thinking about all the things I've been proud of my Ben achieving , walking ,talking ,riding a bike without stablisers,going to the sweet shop on his own and comming home with some thing he had picked,riding a horse (hes won awards for that )with the R.D.A ,un doing the stopcock on the water trough at infants school and flooding the class ok it was a naughty thing to do and he was told off ...in a way, but i thought it showed ingineuity (sorry can't spell it? )he knew what to do and how to do it and that was a big step from the little boy who was taken in to school by his arms and legs screaming and was left to play in a corner alone with a red fire engine all day because they couldnt communicate with him , he was to difficult to handle ?they just never tryed hard enough did they.

[Loobie]

I too offered to sit in class with ds but was told the same thing it wouldn't be good for him to have someone sit with him all the time it would make him too different from the other children,i felt like screaming at them well thats the oiunt he IS different from the other kids.I s your son slow at things too,i still have to dress ds for school as we'd never get there otherwise and he is 6 1/2 he doesn't seem able to speed up only going at one pace.I will let you know how i get on with this woman next week from partners in advocacy,to see if someone else is coming to help shout on my behalf.I was told by a h.v assistant who used to visit us to remember that "he how shouts loudest gets heard first" so lets just keep shouting for our kids.

[anoushka]

charliesmum i am horrifed what a cheek to say that dla is for people with severe disibilities ok they have three grades we are on the middle but you should get some support to fill the form out i had a realy good child devolopement specilist and new all the jargin the thing is you have to be realy daming and say all the things he cant do stressing it as strongly as possible but not exaggrating i think you can get somebody to come to your home and help you fill it out oh as you were saying about dressing my son it not to bad but i have to hand him each peice like socks then trousere and then teeshirt but he is very easly to get distracted we have found the trick is to get him undressed for bed and he can take his time and get used to the rutine because the morning can be not the time to give him the support and you are calmer hope this helps

[Faith]

charliesmummy, have you tried contacting the SSD children with disabilities team, and asking for help with the DLA form? You really need to think 'worst case scenario'. Does Ben have disturbed nights? And so need you during the night? If so, he is entitled to high rate care.There is a helpful website, which I will get details of for you on Weds.

[charliesmum]

when I aplied for DLA for Ben the 3 time we sent every bit of our evidence(as they put it ) to help in our case ,and since they where hospital reports ,school reports ,special needs reports and doctors reports going back till he was 4 and a half... 2 weeks after he started school to be exact we've had him to a hospital school that run in the holidays to try to help him gain better small and large motor skills we saw a doctor at a child development center ....for what good that did she was looking for a condition called Fragile X and he had a chromasone test to see if he had it ,thankfully he hasnt ,although autisim was mentioned it always remained another possibility she would not diagnose it or write it down in his file .I moved to linconshire and within weeks of him going to school hear we had the first doctor tell us our son definately has an Autistic spectrum disorder at the better end of the scale ...if there is a better end!and it was put in writing we tried the dla thing again and we got the nasty letter back from them ,and they kept all of our letters and documents going back years ,and they lost them to boot so we cant apliy again without them ..can we ?to be honnest i have lost faith in this so called wonderfull nhs system of ours , weve tryed shouting as loud as we can but we are just ignored so all i can say is i have braught him up for 12 years 6 of those as a single mum with little to no help so why not carry on as we are? but his needs are now getting greater and the washing is increasing as he is developing other problems now too it seems like befor we had the diagnosis they would say ,"If he had a diagnosis then that would open doors for us and we will be able to get the help he needs " accept reality turned out that when we got it, all the doors where shut in our faces all the help he gets is 2 hours a week with a helper in class and his outlet is the R.D.A once a week wich we are eternaly greatfull for as it adds another interest to his life which he excepts...eventualy!

[charliesmum]

I apologise if i sounded a bit off in my last message, but these days i cant help but feel angry at the way our son has been treated and the feeling of helplesnes ........Im there for him 24 hours a day 7 days a week like all mums are accept i find it difficult to mannage some times and a little help wouldnt go amiss ,its just we cant get any .

[sml]

charliesmum, you didn't sound off at all. what an awful experience of the NHS. I've got no experience of autism I'm afraid, the only experience I've got is of trying to get a relatively obscure treatment out of the national health service, you just have to keep on trying different people until you get one who helps.
Your school sounds pretty unhelpful too - do they need more information/training about autism? best of luck finding the help you need.

[Loobie]

well today we found out that ds primary two teacher is to be the only one in the whole school that i didn't want.she is an alcoholic but that isn't the reason i dont want her teaching ds,she is always absent with different supply teachers coming in,im sorry but there is no way this is suitable for an autistic kid.i have told the school that i will be taking him out and placing him in another school.if he stays here st this school he will be moved from a class of 20 to one of 29 with the same staffing level,he cant cope in his present class so i couldn't even begin to imagine how he would be in a bigger class with a different teacher every other day.needless to say i have cried since picking him up from school at 2:30,why is it that i seem to be the only person concerned with the welfare of this child.

[charliesmum]

Loobie ,you certenly dont need an unstable school life for ds because thats exactly what it would become if he had teacher after teacher suply or other wise.My heart go's out to you ,i know how it feels to have your childs already frigile world thrown in to chaos for what might seem as a trivial thing to others. the woman does not sound as if she is fit phisicaly or mentaly for the job she is in i would report her to the education aurthority!but then again.. with my experience would it do any good since they need all the teachers they can get these days and in many a school there are ,as my Dad puts it 'squaire pegs in round holes'. SML thanks for your encourragement ,we are still trying to get Ben assistence , we are not alone in our problems with lack of help it seems that there are many parents out there who are much in the same boat .....maybe we should set up our own suport group???

[anoushka]

oh charliesmum i am so upset because is is decracful how the dal are treating you i should not give up when was the last time you applied for the dla ?i feel realy down sometimes because we want another child my son is seven and he has quite severe autisim thankfully not the mood swings and the hyperativity but he has no speech and need a very stable school finds it hard to settle say if we go away i might not like the hoilday house but i have got him in to the most brillent school i am just so lucky he has started there only six mounths and is comimg leaps i would like to know if you have any other children i am so worried of having another i know they say that it's a low chance that it will happen again i would like you advice

[Loobie]

anouska-i have two sons the oldest is the one with aspergers,my youngest who is four has absolutely no signs of anything untoward and i think in our case the problem is a genetic one as i have four nephews with other autistic spectrum disorders.so as you an see it doesn't affect all your children even if the tendencies are there,so i would say go ahead and dont let it play on your mind too much,incidentally i am now expecting no.3 and am only very mildly worried but nothing overwhelming.

[anoushka]

thanks lobbie for you kind regards i do worry because the has been no sign of any in my family i have dexlia and i find i seam to have the sighs of autism like the social side i find it hard to make friends and i think my son is so like me in a lot of ways and i have the added problem of my husband has diabietes thanks for you help

[Faith]

charliesmummy, Have a look at www.rightsnet.org.uk
It has some excellent info on applying for benefits, inc.DLA. I am sorry that you are having such a crap time getting help. Sometimes the system stinks.

[ariel]

I have no experiance with autism, but my 4 yr old dd has Hydrocephalus and cerabral palsy, she has got dla care component(high rate and she also gets dla mobilty component, when i applied i was simply told if your child needs more care than another child of the same age then he/she should be entitled to dla, if you have disturbed nights because of your childs condition then you should be entitled to high rate dla(currently £220 per month), if your child has great difficulty with walking then they should also get mobility (currently £154 per month).If you do sucseed in getting what you are entitled to then the childs main carer is also entitled to invalid carers allowance(you can earn up to £70 per week and still get this benefit).Its very true that you have to fight for everything, noone will tell you what help you can get. My dd has just had her statement of special needs completed, our local council have agreed to give her future school £11,200 a year to help towards paying for a one to one for her so she can attend a mainstream school. Although getting these sorts of benefits do not make you feel any better about your childs disabiltys they help a great deal towards everyday care for your child.Good luck

[charliesmum]

Thanks for the address Faith i will have a look at it as soon as i log out ,Ariel im glad you get dla for your dd, i have no idea about ceribal palsy it sounds horrible , as for hydrocephilus ,well our baby boy had that among other things ..diaphramatic hernia,spina bifitta and a fatal heart abnormality wich we lost him to back in 2000.Any way i belive that some things happen fo a reason Ben is my first child and its the first time it has croped up in our family to Annoushka,I have epilepsy and thaught it was the short period of time i was on epilim while pregnant with him that had caused it after finding out that it caused some of our babys disabillities.There are no tests for the persence of autisim in pregnancy like with every thing in life we take our chances and hope every thing turns out well ,like Loobie says dont pannic you say your self there is a low chance of it happening again ,I had 3 more after Ben and our two girls are perfect (yet to find out if the anti convulsant, Lamotrogine has any effects on our latest, now 10 months ) never let it stand in your way of compleating your family it may even help your son develope more speach wise ??and as for a genetic reason to why some get it ,,i dont know ??Ben had his chromesones tested years ago for frigile x syndrome thank fully he hasnt got that surly something may of showed up in that if it has a genetic basis ?????????