madmumof5

Hi welcome to the asd forum. I am on the border of Doncaster and Rotherham ,I have 5 children and 1 grandson.My 11 yr old son has just been dx with adhd and I think my 3 yr old daughter may well have it too. As he has only just been dx I havent joined any local support groups and due to our location I wasnt sure whether to go for Doncaster or Rotherham.He is currently under DRI as we have only just moved here but at our last appt the consultant did mention referring us to RDGH at a later date. He is in mainstream school and despite my worries he has settled in very well .I had an 8 year battle to get him dx and I actually thought he had aspergers althugh they havent ruled it out they are just dealing with the adhd for now Viv xx

Thanks there might have been one ,I have voted this year I can remember that much but everything else seems to have been blotted out by my battles with the hospital and DLA , I feel like I'm on a roundabout and cant get off

Thanks ,my mp has just died (although she retired in may) so I'm not sure who her replacement is .I got my refusal letter this morning ,I can see why they have refused it due to the school form that the head filled in .I am waiting for the deputy to ring me as she is the one who I have been dealing with but they didnt write to her *rolls eyes* I am worried about going to a tribunal as I will either loose my temper completely and let rip or I will just cry through it all Its just another battle I can do without right now

Hmm not sure why its misssed off the other quote but I think the poster means that this is what the benefits people have said when they turned down her DLA application as its what they have said to me about my 10 year old. Funny how he is the only child in the whole of the juniors who has to wear nappy pants and yet they still think he's an average 10 year old I have appealed but I'm not holding my breath and I have no fight left in me to go to tribunal ,7 years of fighting for help has worn me out and I cant do it anymore

Oh dear you really are having it bad ,not sure what PDA is so cant help there but I have to say my DP finds it very hard to undertsand why ds2 is like he is and gets cross with him rather than trying to undertsand why he is doing something (I do wonder if Dp has aspergers tho ) its like a battlezone most days . I have just realised I quote the wrong post *blush* I was going to say that Elliot chews his cuffs too and I have now refused to buy him more sweaters I just keep buying cheap ones from Matalan and sewing them up ,He has also chewed the top rail of the wooden bunk beds *shock*

Thankyou

Yet again we have been turned down ,I have asked for a copy of the hospital letter and an appeal form .TBH I dont know if i have the strength to fight them even tho I know we deserve it and DS2 needs it what with this and the so called specialists at the hospital I have had it all knocked out of me

HI sorry to hijack the thread but do you know how to go about getting one.I have only got a downstairs bathroom and toilet and my 10 year old has toilet problems (poo not wee tho) the council have modernised simliar houses and put upstairs loos in but havent done ours and its a nightmare ,I just dont know where to start

Lord of the Rings is my sons obsession and has been for the past 3 or 4 years,before that it was The Lion King

Thanks ,it just seems a constant battle ,do they think we do this for fun trying to dowhats best for our children?? I guess they dont have AS kids

well my claim for ds2 has been refused even tho the bits I did fill in (I filled it in online and sent it instead of saving it ,I meant to go back and fill some parts in with more info) show he needs more care than the average 10 year old. They are saying its not an hour or more when it blatently is ,I have spent 7 years fighting to prove he has a problem I really dont have any fight left in me to appeal against this ,dont knowwhy i even bothered applying

They do a book which lists all the toilets http://radar-shop.org.uk/Detail.aspx?id=1 I just spotted it when I was ordering two more keys as DS2 has lost ours so I ordered one for my bag and a spare one just in case!!

My DS2 was about 2 1/2 -3 when I first realised there was something different about him.He was finally dx with aspergers last wednesday and I am still in shock despite the fact that I figured he had got it no one else 'official' had agreed with me so far!!

DS was only referred when I mentioned I had read that there may be links between Aspergers and his bowel problems ,they werent aware of any links apparently, I told them they should google more ;0) I get the feeling they are doing it to prove me wrong more than anything :0( My DS's school dont have any concerns with him as they have far worse behaved 'normal' children there to deal with (thats probably not the right way to put it but you know what I mean ) the school nurse was supposed to be helping me by doing something in January ,it is now June and I'm still waiting, I think its not a problem to them as they dont have to live with it .I am at my wits end tbh

I have been trying for nearly 6/7 years to get someone to take me seriously about DS2. He was 3 when i first shared my concerns with the HV and GP but as nursery had no concerns I was told it was a clash of personalities Finally someone listened to me 2 years ago and we had a meeting last year with a specialist peadiatrician,I was then told I would be sent another appointment which I got last week and its 2 days short of a year since the last one. TBH i'm not expecting anything , I think they will fob me off but we'll see Viv xx

My son has this problem .The hospital decided he is constipated and have given him medicine to make him 'go' despite me saying that the problem is he is always going .He has never had a problem not having a poo ,they seem to think that the mess I refer to is leakage but it isnt it is full blown poo, several times a day.He just doesnt feel the need to go or that is it actually coming out. It restricts us in everything we do as we have to make sure there are toilets nearby ,we have to take several changes of clothing out too.At school he is sent regularly to check himself and gets cleaned and changed at dinnertimes .The medicine he is on didnt make in ounce of difference if anything its made him worse but talking tp the consultant was like talking to a brick wall until I got a stand in one who decided to refer DS to see if he had aspergers (the first consultant dismissed my thoughts on this at the first meeting) before they decide what to do next. We have had one meeting so far in august last year they dont seem to be in a rush but if they had to clear up what I have to clear up everyday I'm sure it would get sorted quicker.I am thoroughly sick of it all now I have been trying to get something done since he was 3 and he is 9 now ,it upsets me so much but thankfully apart from the odd comment at school he hasnt had any problems and is quite happy in general but he does get upset that he cant control whats happening and is always apologising for it :0( viv xx

DS has been obsessed with Lord of the Rings for the past 3 or 4 years .Its not something i have ever been interested in so I find it hard to be enthusiastic when he goes on and on about it .In year 2 he had to do a book review ,all the other children were doing basic childrens books while he did a 4 page essay on The Return of the King. It took him two weeks ,his teacher didnt understand why it was taking so long till he handed it in and she had to read it He used to get upset as she would ask them to bring a book in so they could read an extract at the end of the day and he always took one of his LOTR books and she never read one as she couldnt find an extract small enough that would make enough sense to the others or keep them interested!! He is slowly moving over to high school musical which ,although annoying, is better for us all

My ds2 is only 9 so he plays this alone and doesnt mind,he gets enough enjoyment out of it although he did moan that his friend is allowed to chat and interact with others but he plays it when his brother does so is safer. DS2 loves his dslite and the ps2 , a few days in the holidays it was a job to get him off them but it does keep him quiet and content so I dont mind too much!!

My ds2 has chewed both headends of his bunkbed and has now started on the sides ,I thought ds1 had been slicing his pencils up until I went on the top bunk to change the covers,it looks like a hamster has been up there!!

Thanks Karen. They have decided that as the meds werent making any difference that they want to either get a dx for aspergers or rule it out before they can decide which route to take with his bowel problems as it will need treating differently apparently.I was told not to attend any more normal paed appointments until he has been dx or not ,which ever it is.I cancelled his november appointment and remade it for january as I really want to see them about his weight never mind everything else!! Yesterday I got a letter cancelling that appt and moving it to March so I am going back to the nurse when they go back in january about it (she is off now) Viv xx

I mentioned this to my DS1 who is 13 and he said if they are given any objects (even if they arent dangerous) in lessons they all have to be counted back in at the end and it is all written down .Surely this school should have had a similar policy ?? Seems to me like they are trying to cover up some incompetance on their part by passing the buck on to your DH which doesnt surprise me in the least really :0( If he hadnt taken it back then they would be totally unaware this knife was missing so how many others have gone too, its disgracefull. Viv xx

Thanks for the replies ,I didnt realise there had been anymore *blush* I am on a mission to get this sorted now as it is taking over our lives and causing so much disruption (and upset for DS2) ,thanks for all your suggestions .I have taken to bulk buying underwear in the sales so that he has plenty and I can just throw them away if they are really bad!! The other problem is he is getting so thin he is starting to get hairy ,its his body's way of keeping him warm,I was supposed to mention his weight to the nurse but I forgot.He is 139cms and 23kgs at 9 years old he has always been tall and thin but he has never been this bad Viv xx

Just wanted to say have you contacted your local MP ,they are quite good in most situations and will hopefully make sure it gets dealt with properly Viv xx

Thanks for the new replies. Lyn: we have an appt in january with his pead ,not had any for the aspergers since the first one in july.Didnt think about a grant for clothes etc.I tend to buy cheap undies in the sale ,same with trousers. Tally :the other children would notice if DS wore pull ups thats why I wont make him wear them he would not care a jot as he doesnt really care what people think!! The thing with normal bins and nappies is that you are supposed to put the poo down the toilet and just put the nappy in the bin(its illegal to put human waste in the bin).They stopped putting the notice on the packets tho as people were putting the nappies down the toilet not the poo!! UPDATE I have just had a chat with the school nurse (apologies for anyone who has read this elsewhere!!) and she told me about a special childrens continence service that we have in Doncaster that the hospital have never even bothered to mention to me (GRRRRR) she is going to refer me and they will come out and see what help we need. However I also had a word with the deputy head who is aware of DS's problems as I had told her when she had him in reception or yr 1 ,cant remember which tbh I had forgotten even mentioning it to her *blush* Anyway she was horrified that it is still going on and that the hospital are not being much help.She said she is personally going to see that DS gets to use the disabled toilet and she even said he may be able to go on the residential trip and they will just get some one to make sure he has cleaned himself properly and that his clothes get bagged up to avoid smells getting out (I forgot to mention the pants will need scrubbing at every change tho!!) she said she is going to chat with DS about it all to see how he is feeling.She was surprised that I thought he may have aspergers tho as he is nothing like the others in school who have it apparently ;0) His class teacher said the same but she also said there is definitely something (as in not quite right !!) and after teaching him for 2 years she would know!! I shall look into DLA .Am I right in thinking this is another battle to face?? Would I be able to claim carers allowance too ??

Thanks for the welcome pearl Hi Suze thanks for your reply ,he hasn't been tested for food allergies .I am going to mention it when we go next as I did wonder but I have been told not to go to my normal paed appts until he has been assessed for the aspergers Viv xx