emotink

My son turns 16 in a few days and we have been told that his DLA will stop and he will be assessed for PIP. I'm terrified were going to loose it. He gets middle for care and low for mobility. In the letter I received it sounds like they want to do a telephone assessment and talk to him! Is this normal? I currently get carers allowance for him which will stop if we don't get PIP. We also have a disabled child element on our children's tax credits - does anyone know if this will be removed as well? I work at next but only have a tiny 6.5hrs contract (hubbie works full time) and can only do hours between 9-3 so I can make sure he gets into his taxi for school (he hates school) and am home for when he gets in. It's looking good for him getting into college to do a basic mechanics course, but he won't do the college bus and its going to cost a fortune in taxis (no more free school transport when they get into further education) so I'm going to have to do it which again limits my work availablity so I'm going to struggle getting a different job that's not seasonal (live in Cornwall) :-( He was discharged from CAMHS years ago, same as his consultant peadiaetrician (sorry for bad spellings) so we have been muddling through on our own for years - I feel this is going to go against us. Any advice please on where to go from here

Kazzen, my son is not dyslexic but I'm going to email his Dr again in the hope that she will write to the head explaining his anxieties and history. The autism outreach lady is visiting us on Friday after school so I'll bring up getting him statemented. She has contacted the council's legal team (not just for our case) to check if the head is legal in refusing to be flexible - not just for DS but for any / all students. I'm going to write to the head as suggested by bed32 and Sally44 to complain and put forwards our case. I don't hold out much hope of him changing his mind though!

Thank you for the link but unfortunately we cant use this. It's only relevant if the child is statemented and my son isn't. It's also down to the head and he has told us out right that he won't do a flexible timetable. DS' s best lessons are in small classes with sizes of 15 or less (science, English and maths) all his other subject's have much larger classes and these are the days he struggles with and tries to get out of going. MFL was a problem from the start. He considers himself stupid and the majority of things go over his head with MFL being the worst, I think it just overwhelms him. He won't ask for help if doesn't understand things, which doesn't help. I don't understand why the head is being such a about it. Lots of schools personalise timetables, but I don't want to have to move him. He has made a couple of friends and likes some of the LSA' s and his sister will be starting in Sept. We did consider home schooling, but decided we wanted him to gain social skills. He very rarely goes out. His 'friends' are other players on the Xbox. If things go wrong and DS refuses all school as a result of this pressure, it will be as a direct result of the head. Surely 2 lessons a week are better that the 3 or 4 days missed a week last year!

Yes, they have brought up the EWO, but we have been told by the autism outreach lady that they will never peruse it to court because of the disability discrimination act. The school will throw the fact that he is not statemented at us so they don't / can't put him else where. We have bought up getting him statemented but as he is academicly ok and not behind and the support he currently has in place is working (sits next to another child with a LSA) we won't get one. Spanish is the only MFL that he does. I saw somewhere on this site that SEN children can be exempt from any part of the national curriculum, and am hoping someone can point me to where I can find out more. Nic

He hasn't done any Spanish lessons for over 9 months. Our autism outreach lady is great and is none too pleased with this and is concerned about it setting him back too. DS will always tell people what he thinks they want to hear, so when they talked to him in sch about giving it a go - he said he would, then upon returning home he broke down to us saying that he is giving all he can and doesn't think he can give any more! DS really has come on leaps and bounds in the last couple of months, even choosing to go out and play football a couple of times during lunch instead of staying in! The sch say that they can't bend the rules for one and not another, and that they have other pupils with aspergers who manage to come in for all lessons! Surely what they are trying to do / inforce on him can't be legal bearing in mind what will more than likely happen as a result. Nic

I have read on here that Children with SEN can be exempt from any part of the National Curriculum. Can anyone point me in the right direction of a link or site that verifies this please. DS is 12, in year 8 at a mainstream school. Diagnosed with Asperger's when he was 8 and also has a diagnosed language disorder, he attended the small village school. We never got him a statement as the school coped ok. Then the transition to secondary happened and it all went down hill this time last year. It got to the point where we were lucky to get him into school twice a week and were referred to the EWO who visited once and was never heard from again. We were referred to CAMHS (as it was recognised his refusal all stemmed from high anxiety levels) and also the local Autism team from the council. To cut a long story short, since sept he has turned things around and has been every day apart from the first 2 lessons every Wednesday which is Spanish - this has always been a massive problem for him and last year resulted in him missing the whole day not just the lesson. He has refussed this lesson since the start of term back in sept with staff knowing but never commenting on (I drop him into school at 10.30 when the lesson ends). On Monday I got a call from the lead LSA saying that DS had been sent to the head who told him that if he didn't attend Spanish on wed morn, that he will receive a after school detention for truanting. We naturally are fuming about this and are very worried that it could send him back as the fear of a detention will result in him not going in the next day for the detention and so on. The head (when on the phone to hubbie) accused us of letting him truant! He also brought up a flexible timetable saying that it would not be a option as if he did it for us he would have to do it for others! I'm trying to find out if the school has a legal obligation to be more flexible. His anxiety comes from his Asperger's, so by them insisting on something that is going to cause him high levels of anxiety are they not in breach of the disability discrimination act? (I have been in touch with his Dr who says he cant write a sick note for specific lessons... he is either fit for school or isn't - which I understand) We are desperate for him to continue with where he is now and not regress back to 10 months ago. Any advice is appreciated. Nic

We are down in Cornwall and have no ASD specific school in the county. There are a few special schools but they are unsuitable. He had a huge meltdown this morning over what underpants to wear!!! It seems like anything can set him off at the mo. Fingercrossed the EP can help when we see her on Thurs.

I had a nightmare with my son. He was 4 by the time he got it. We did the usual reward charts, let him choose his big boy pants, he even had kando wipes that could not be used by anyone else - which he liked. Seemed to take forever. We used to have to potty in the living room, but found that by putting it in the bathroom where the real toilet is helped as it apeared he was getting muddled (you go for a wee in the bathroom not the living room) also encouraged him to try on his mini loo when I / Dad was going (trying to make it more normal for him). Luckily he got it just before starting Nursery.

We are seeing the EP next week and are currently under referal to CAMHS, but have been warned that there is a long wait (est 4-5 mth!!!), the school are refering us to the local Autistic Spectrum team, and the wait for that is currently 8-10 weeks. He refused School yesterday, but went in today. As he is not currently statemented he 'borrows' someone elses LSA / TA but in Drama and DT today he is on his own which he finds extra hard. When I took him in this morn, the head of the LSA's was in reception so I thought I would have a quick chat and explain his worries for the day. I found her very stern and she gave me the impression that she was too busy to give a damn. Connor started to talk to her but she cut him off saying that she will take him to Drama and started marching off. He really struggles talking about his worries and feelings and brings 'all the bad' home with him and meltsdown. Is it any wonder if the support he is recieving is like that! We really want him to get on at school- we dont care if he doesnt do any exams when the time comes, we want him there for the social skills etc. I worry that if we do home school then we will have closed him off to the world. He has no real friends, rarely someone will call for him but he chooses not to go out but they are welcomed in to play xbox etc. My greatest fear is that if we do this, potentially we will make more / bigger problems for the future as all social skills will be lost, but, the fear in his eyes when I force him into school is breaking my heart. How the hell do we make this decision.

I dont really have any advice for you, but you are not alone. My son is 11 and started secondary school last sept. Things have swiftly gone down hill to the point that we are thinking of home school. As Im the one that has to take him to school, deal with the screaming, shouting and swearing the tears and the torturous look on his face- Im starting to resent my husband! I love him to bits and he is supportive of how I choose to deal with things, but at the end of the day Im the one that is being the evil one and putting my son through something that could have a lasting effect on him. I also admitted to hubbie last night that Im starting to resent my son for making me feel like this. If he just walked into school nicely then we wouldnt have the meltdowns etc. It doesnt change my love for him or my empathy for him and what he is going through. I think that you get to a point when just for once would like to have a 'easy day'. Nic

Not sure if this is the right place to post this but, My son is having major issues around school to the point we are thinking about home schooling. We thought about it in the past but I need to work for financial reasons. Things have taken a turn for the worse with him so we are having to look at it again. It looks as if I can get carers allowence (which will help), and I have just done a online check to see if our child tax credits will go up. They ask if your child is in full time education so, if I do home school him is this classed as 'in fulltime education'?

Thanks all for the replys. Its nice to know were not alone in this. We have heard from his paediatrician who is going to refer us to the autism spectrum team for help and support, but were really not happy with the school as we have had our app moved from next tues (the 22nd) to the following tues (29th!!!!) as the senco is unavailable till then. He doesnt want any 'special treatment' as he see's it, so doesnt want a buddy. He thinks people will take the micky out of him and prefers to hide out in the ARB unit the school has at break/lunch. We are starting to see a pattern regarding the headaches as in they are definately less during the weekends and holidays, so it looks more to do with the stress and anxiety he has. The problem is that he says calpol and ibupofen doesnt seem to help and we are reluctant to try co-codamol as it causes constipation - this can be/ is an existing issue due to his fussyness with foods/poor diet.

My son is 11 and has nocturnal enuresis, we get pull ups via the sch nurse.

Hi, Im new on here and am after abit of advice. My 11 year old son has aspergers and moved up to secondary sch last sept. He hates sch (always has) and things have recently taken a turn for the worse. He sees his paediatrician 6 monthly due to previously having had a diagnosis of absent seizures, but this is now in question due to having had his meds stopped a couple of years ago. I am sure I have seen a few small seizures and he is often complaining of bad heads to the point of crying. We are due to see a specialist next month about this as his last eeg showed nothing but his previous 2 showed sharpened transients but not enough for a definative answer. He is currently complaing of headaches most days and we think alot of them are due to his high anxiety/stress levels regarding sch. Academically he is ok, he seems to be avarage to below average in most things, but not low enough to have anything on his IEP (which just contains things like where to go when feeling unhappy, trying to give him a possitive outlook on his having aspergers etc). As parents we are really struggling to cope. I hate dragging him into sch, he cries most days about having to go and cries daily while there. We have a meeting set for next week at sch as this cant continue. I have looked into the possibility of pulling him out and home schooling, but as both me and hubbie need to work, I cant see how i can do this. It is heartbreaking to see him like this. The other day he asked if there was a tablet he could take to get rid of the aspergers... when I said no he broke down "you mean I have to live like this always"! He often comments about how he wishes he had never been born, that he has no friends and is stupid. He used to go out on his scooter with his younger sis, but has for the last 6 mths has not been out 'to play'. He has always been scared of 'bigger kids' to the point that he now doesnt go out and seems to be becoming more reclusive opting to be on the xbox, watching tv or watching people playing there xboxs on youtube. His outbursts are becoming more frequent and over silly things and he is on occassion aggresive towards his 9 yr old sis. At his age I realise that hormones are starting to come into play, he is so unhappy and this is having a effect on all of us. He was diagnosed aged 8 at camhs, we had a follow up app a couple of moths later but have not been back since. He used to see SALT regularly as he has a diagnosed language disorder but they discharged him years ago as we were told there was nothing more they could do. He had a sensory diet done by a OT via cahms 3 yrs ago- never seen since. He saw a epilepsy nurse but this stopped after his meds were stopped. We had a visit from a social worker shortly after his diagnosis, but was informed that due to the amount of agencies involved (at the time), they wouldnt be involved. We have been told that he only sees the paediatrician because of his epilepsy and he does see the sch nurse due to having nocturnal enuresis. As parents we feel like we are just managing to keep our heads above water. How do we get more support for him at sch... he has openly asked for a TA but was told by a teacher that wouldnt happen due to funding. How do we as a family get more support? We feel that we should have more people invoved but who? Any advice would be great Nic