Carrera74

Thanks for the replies I am at a loss as to who to use for Part 33 (child hospital doctor or specialist). He doesn't see anyone anymore apart from those at school. Our link worker at CAMHS would help I am sure but we haven't seen her since being discharged (Dec 2010) and it says in the last 12 months. Now kicking myself for not applying sooner!

Do you have access to Parent Partnership? I don't think I would have stuck it out for tribunal if it hadn't have been for mine. IPSEA were also very helpful but difficult to get hold of.

No he doesn't have a social worker. We have managed his ASD with just the support from school since CAMHS discharged him. CAMHS were so helpful whilst we were fighting the LA for a decent school. They supported us fantastically but he was struggling with his mental health as his day to day routine was non existant and the environment wasn't right for him. As soon as the school environment was right he calmed down and we were able to manage (mostly) his behaviour but we are always on the look out for blips. He doesn't realise when he is getting anxious or stressed. He just flips so we help him to calm down or take his mind off whatever is winding him up before world war 3 starts. I dread to think how he will be when he leaves the stability of his routine at school but will cross that bridge when we come to it Not sure the bus pass would help then as he only will use it for home to college. He struggles with public transport - I say struggle, he generally refuses but he will go on a journey if he doesn't have to discuss anything with the driver - flashing a pass is fine as long as he knows the journey (has practiced it with us a fair few times). Thanks for your input. It helps.

Hi there Thanks for your reply. I didn't realise you had to be under the care of someone to be entitled to DLA. My DS has been under CaMHS etc from the age of 3 up to his second term at his ASD specific school. It's an independant school and they have their own CAMHS etc on site so seemed silly going to NHS one too when they are already so overstretched. Maybe I'm wasting my time filling this in for him then? All his peers claim DLA but I have put it off for goodness knows how many years. I was under the impression that if their disability affects them so that they are not at the same level as an average 15 year old then he may be entitled to extra financial support. He starts college (hopefully) in September and he will need extra support just to get there. He's not able to just jump on a bus and know where to get off unless we do the journey with him at least 4 or 5 times. He needs this sort of support in all new things so college is going to be a huge thing for him and no doubt his anxieties are going to rise again. I had hoped that anything he may get via DLA would help for costs towards a bus pass and perhaps a laptop or something so if he needs to learn from home on bad days he is able. Can anyone advise if I am wasting my time. This form is so stressful as it is :S

Hi everyone I haven't been on for a while. My DS has been at the school we fought long and hard for and is now in year 11. He has settled so well and is doing really well. The fight was worthwhile albeit very stressful. He was diagnosed in year 6 but I have never applied for DLA. I have requested the forms numerous times but haven't known where to start and to be honest I didn't want a stranger knowing my son's health problems inside and out so never asked for help from Citizens Advice etc. Silly I know but he's a good lad and I hate people judging him and me which unfortunately they do! Anyway the form is in front of me and I'm going to give it my best shot. He turns 16 in July and I figured if I found it hard to fill this form in he's got no chance so thought if I can complete it for him it may help him when he comes to apply as an adult (not that I think he'll be able to come July!!). I have only just realised that the claim for DLA for adults is changing this year so not sure whether my claim will be knocked back immediately as I believe it can take months for them to process it but I'm going to apply anyway and go from there. I just wondered if anyone has applied so late after diagnosis. I have a lot of paperwork from his statement, reviews etc so will put all these in but he isn't under a Consultant anymore. He was discharged from CAMHS about 12 months after starting at his new school as we have been able to manage his anxiety so much better (apart from the odd huge blip!). I am going to use this thread as a diary for myself and to vent when I start turning the pages. It's already starting to stress me out. Why is nothing ever easy?!! I've got a copy of the Cerebra guide which is helping me but confusing me at the same time :S I'm also reading through links on here including the pinned ones. So much to read. Wish my brain would soak it all up!! I'd be really grateful for any pointers with what to attach to the form or any words of encouragement. I think I am going to need them!!!

I'd definately recommend getting in touch with Parent Partnership. I had so much support from mine. He helped me no end.

Hello I haven't been on here for ages as DS is now at the school I fought two years for and *touch wood* all is good at school. We had his annual review last week and all went well. Few blips here and there but we don't expect a smooth ride all the time - we know better!! Both school and us commented on how much he has improved and matured over the last few months - we all think this is to do with his school day being shortened due to the boy he shared the taxi with going to mainstream making DS's journey much shorter. He gets an extra 30 mins in bed - what a difference that makes!!! We came away from the meeting feeling really positive and then the day after we received a letter from the LA advising of a consultation regarding proposed changes to the support for home to school/college transport. I feel another fight coming on and another stressful year, just when I thought fighting the LA was over and done with DS currently has transport and an escort. Since he has been going to this school the only problems we have had really are to with transport. Originally he shared the taxi with a younger boy who wound my DS up. DS likes quiet, the other boy is a little hyper. Also DS had to be picked up first and dropped off last so it was such a long day but there was light at the end of the tunnel as the other boy was being reintegrated back to mainstream. Since Christmas DS has had the taxi to himself and he is a changed character. The extra 30 mins he gets in bed makes such a difference and he is home earlier too. So now this 'consultation'. The booklet says a transport banding framework is to be introduced. Does anyone know anything about this? I may be worrying for no reason but experience tells me I am in for another fight :S I am so worried that now we have DS settled we are in for more upset - great timing LA as he'll be in the last year of high school.

I went to visit quite a few schools and was armed with a list of questions. I felt like I was interviewing the school lol. Once the questions were asked we were then shown round. Some of the schools were really open and let us go in classes but some seemed to just want to answer the questions and that was it. Make sure you see a class in lesson and preferably the year group/class your child will be joining. You'll know when you find the right school I'll have a look to see if I can find the questions I asked and will post later

I haven't been on the site for a while but I'm struggling with my 14 yr old son who is really testing us at the moment. I'm at my wits end as I thought we had the bad behaviour under control or at least we were managing it better. I think the return to school after the summer holidays has a part to play as does us letting his routine drop. I forgot how bad he gets when the routine is broken. I'm in for a few tough weeks, I just hope I have the strength to nip it in the bud as I've been off work with anxiety and don't feel strong enough at the moment. Sorry to hijack your thread. I just wanted to let you know you're not on your own.

Me again... DS is still having up and down days. Last week was awful. He had detentions every day. Not sure what caused it but it seemed something triggered it off and he went on a downward spiral every day. PE seems to be causing him problems too. He refused to have a shower last week and refused to take part in the lesson yesterday. School have called an urgent meeting for tomorrow. I’m dreading it in case they say they have given up already. I hope not My hubby thinks they will just be hoping to nip it in the bud but I don’t know how we can make him do PE if he refuses. He says nothing is bothering him. He just doesn’t like it so isn’t going to do it. I have a feeling it’s more about the shower afterwards. They are separate showers but it’s hard to get him in the shower at home. We usually use the laptop or wii to get him in – once he’s had a shower he can play etc. I do think the early starts are taking their toll. He’s shattered and I’ll mention that tomorrow too. Not that we can do anything about that. Roll on 5pm tomorrow. I’ll have 2 weeks of not worrying about school!

Big hugs back. Hope Ben is feeling better now?

Hi everyone, a huge thanks for your advice and comments. I got home from work on Monday and sat and had a chat with him. We agreed that Tuesday was a new day and we would try again. I also explained to him that both school and us at home all want to support him getting back into a routine at school and we know that it is difficult especially after not being in school for such a long time. I chose to remove him from his last school as it had broken down and he was becoming more and more anxious and was out of control in school and literally running riot. I was worried that he would think it was okay for him to refuse to go to this new school as I had kept him off so I explained that now that the Authority have named a suitable school I have no good reason to keep him off and I could get into trouble. I didn’t want to add to his anxieties but I also didn’t want him to think it’s okay to stay off school. The PSP is now only for evenings and he can take it up at weekends too. He got up on Tuesday with a lot of coaxing and we praised him loads when he got home from school. We have set the bedtime routine again and are praising him each day. The last 2 days he has got up with no problem and this morning was ready before the taxi I think we just need to stick to the routine and hopefully we’ll get there! I can see good changes in him already. He is trying new things at school so must be feeling more relaxed. He had an egg mayonnaise sandwich yesterday as that was the only sandwich on offer. At one time he would have refused to try it and probably got stressed out and shut down as he wouldn’t tell anyone he didn’t like it. He told me that he thought he would die with each bite as the feeling in his mouth was that bad. I know he won’t have that sandwich again but it’s a huge thing for him to try something new and it was nice to see him make a joke out of how bad it was instead of kicking off. He has also joined in with the others playing football at lunchtime – another big thing for him  So it was a rubbish start to the week but it has got better as we went along.

Hi Sally Thanks for your comments. He went in for 2 days last week and met everyone and was really happy and said he couldn't believe how friendly the children and staff were. I'm not sure about the part time schooling but I think I'll see how he is tomorrow and perhaps suggest it. He has been struggling to sleep which he usually does when there is a change to his routine. I think if we can get him to have a good nights sleep for a week or so then he won't be as anxious but it's just getting him to go sleep! I've got an appointment on Friday as he fainted on Friday (first time so getting him checked out) I'll ask about the melatonin. I am going to ban the PSP from his room - we let him have a lie in at the weekend and he usually spends some quiet time in his room and plays on that for a bit. I can see what you mean about giving the choice he'd prefer to stay in bed and play that! The journey adds to the length of the day and he seemed to cope with it okay - apart from being tired! It's like a vicious circle. He's tired after the school day but is struggling to sleep so is getting more tired and then gets stressed out and irritable.

Well done you!

Thanks everyone Young man started last week and had a good few days. I think the early starts are going to take some getting used to though as he has refused to go this morning. If it's not one thing it's another....

DS started his new school last Thursday and had a great 2 days. Friday evening he was very irritable which I expected as it is a long day for him (the taxi picks him up at 7.30am and drops him at 4.40pm) and it's a new routine for him to get used to. He hasn't been in school since Easter so expected a few hiccups but he has refused to get out of bed this morning. He has been banging his head against the bed when the taxi left and again when I said I had to go to work. I spent nearly 2 hours trying to coax him out. I offered to drive him there myself as he was tired when the taxi came. Nothing worked and I rang school to let them know what was happening. His linkworker has just been to the house to see if she could get him to go back to school with her but he is in bed on hisi PSP refusing to leave. She has now left and said to try again tomorrow and mentioned bringing colleagues with her so that they can take him to school. I have fought for 2 years to get him the right school and I can't bear the thought of him being taken to school against his will

I have come back from holiday to a letter from the LEA saying they are pleased to name our school from September!!!! They have also copied the letter to SEND saying they no longer oppose our case. The adjourned hearing was to be heard on 14 September. The lovely independent school is closed until 30 August so can't do anything til they are back. I AM IN SHOCK!!!!

I need to ask a representative from the school to attend and summons them if need be. I also need it in writing that there is a place available. They seemed quite happy that a place is available there; I just need proof as to which part - the main school or the ASD unit. I am going to ring SENDIST tomorrow though and ask them to order the LEA to refer DS so I can take him on a visit to back up our case further. The panel made it quite clear to the LEA that if they block anything they are in deep trouble!

Hi everyone Thanks for your support. I really thought I had reached my limit yesterday The tribunal has been adjourned to September. The judge was sooooo not impressed with the LA. He wasn't happy that they hadn't allowed a referral to be sent to the independent school and also that they had turned up without any information or witnesses from their named school. The LEA were just interested in saying how much it will cost but the judge soon put them right and said no matter how much it costs; if the LEA don't have the right provision costs don't come into it. That shut them up! The judge said that if I had turned up today with a witness he would have been happy to name our choice without taking it further.... unfortunately our school won't put anything in writing or let us visit without a referral from the LEA.... The judge read the directions out to us for the next hearing... they LEA have to produce alsorts of things which I am happy about as I have been so frustrated at their lack of doing anything. I feel that I have been doing all the running around. They need to provide evidence that their school has a place; meets DS's needs; how many children attend our requested school from the LEA; how the dual placement will work; etc etc. Again thank you for everyone for supporting me and giving advice. You really have helped me no end! xx

And I think I'm about to have a nervous breakdown. I've been sat trying to write down everything I want to say but I just seem to be going round in circles. I have gone through DS's statement to highlight what his needs are and why neither the MLD school or the mainstream link can meet them and there's hardly anything concrete in the statement. I don't have anything in writing from the MLD school to back up the HT's comments that DS is too bright for her school. The only thing I do have is comments in the advices as why mainstream primary didn't work and that's about it. I finally received the working document on Friday and went through it and the LEA have hardly changed anything I requested so I sent a list back to them telling them I want and raised my concerns that there is no time set aside tomorrow to discuss the contents. They said they may discuss it on Monday grrrr! They have added bits to the statement which back up their choice of school with the mainstream link. We have never had any mainstream comments before. It's like they have changed his needs! IPSEA rang me on Friday to help me with my case... it was originally scheduled for October. I feel that I would have had more of a success with them behind me. I feel that I have been hasty in requesting for the hearing to be brought forward. I'm such a blooming mess. Sat here in tears. God knows what I'm going to be like tomorrow. I really feel like giving up as I don't see how we can win with such a rubbish case. I think the LEA are going to win no matter what and I don't know what I am thinking trying to fight them. They've run rings round me for years, they're not going to give up now are they.

Thanks again everyone. I have contacted SENDIST. They said I should have received a form for the HT at the independent school which says that if the panel request a place there is one available. I never received this and their records prove this. The lady I spoke to has spoken to the Tribunal Chairman who says that the hearing will be heard in two parts if need be. Monday's hearing can go ahead and the LEA's choice of school will be discussed. If the panel agree that this is the right type of school then the appeal will be over, if not they will instruct the LEA to send DS for assessment and will adjourn the hearing to a future date. I feel sick with anxiety! Roll on Monday. Sally that's really useful. I'll need that on Monday!

I didn't know they could do this! I will ring them first thing. Thank you!!

Hi Grace We have been asking the SEN team at LEA for this school to be named since we had the urgent review in April. My son's case went to county moderation panel in June and they said they wouldn't consider any independent schools until three of their schools had been considered. At July's panel they decided to name a MLD school with mainstream input - neither appropriate in my opinion. I just don't know what to do for the best. The independent school won't assess him without the referral and the LEA won't' refer him unless made to by who knows who. I think a glass of the large red stuff is called for. Bl**dy LEA sending me to drink

Thanks everyone. I don't know what I would do without your comments. It really helps to get other peoples points of view/experiences.