di30

Hi Stella. Sorry to hear of this. My son Daniel is now in year 8 and in yr 7 was having problems with him big time with extreme anxieties especially when it comes to games/pe etc, he would skip these lessons and hide in the school toilets, where at one time it became unbearable on those lesson days the school could not find him and it was reported to the police as they knew he was at school, they did finally find him in the school but something had to be sorted out immediately. I know it can be tricky for you as you work at the school, but with Daniel CAMHS had wrote a letter to state about his fears etc and suggested the staff to encourage Daniel to take part and not to pressurise him and give him that choice to take part or sit it out. It was then arranged on short term only that Daniel has a mentor while these lessons were ongoing for others, so his 'head of yr' was Daniel's mentor where Daniel used to sit by his office with a reading book. Now in yr 8 after many meetings with SENCO, the ED P Daniel has admitted its the close contact sport like rugby, football etc he struggles with but okay with cross country and gym, so he now take part in these but not the close contact sport but help the games staff with nets and rugby/footballs etc for setting up. Daniel is happy enough with this but if forced to do it, this will only push him back to square one again, the school now know this and have left things as they are for Daniel now. I know this is a common fact with kids with ASD, do the school know this ? and perhaps it worth mentioning this to the school as you know if they are forcing your child it can only make his anxieties worse. Can your child's specialist help out with this one or maybe your GP ? Hopefully another arrangement can be made while this sport is ongoing. Fingers crossed, I hope this is resolved very soon, keep me informed and the very best of luck. Di. xxx

Daniel quite cheery again today, , but he did have more help by finding the right classrooms lol, between SENCO and the Head of Yr, they have taken in turns to be sure he gets to his new lessons okay. Homework not so harsh like it was in mainstream classes so this has been a great help, especially with his Anxieties, I do really think now that SENCO realises this is what they should done ages ago by moving Daniel into SEN classes, its been a struggle for him, and sleep..........what was that ?? , lets hope he starts settling down in the nights too. Cheers. Di. xxx

So very sorry to hear of your very sad loss. <'> <'> It is a tricky one, but some very good advice given on here. Thinking of you and plenty of <'> <'> <'> <'> . Di. xxxx

Hi all. An update regarding my son Daniel. Today he was officially moved to the SEN class instead of yesterday, this is full time as arranged to meet Daniel's needs. Its a change from 35 or more in a class now down to 15 including himself. Although he has a new timetable, its a very huge school, so now in different classes for each lesson like last time but he is basically starting all over again, even though he is in yr 8, his head of yr had taken him to the first lesson, and from there Daniel thought he would just follow his group then to the other lessons. Whilst doing this he lost track of where they went due to other lessons moving from class to class, then sat himself in a class where lots of other pupils were coming in, he realised after about 10 mins he was in the wrong class, it was german lol , and not English like he supposed to have gone too. Daniel was too quiet to say anything and the teacher asked if he was new, he said quietly he went to the wrong class and didn't know where to go, so the head of yr turned up and taken him to the class where he should have gone. 'Bless him'. I'm so glad he sees the funny side of this........and within a few days he should hopefully get used to where he's got to go. I must say though he seems to be happier today, lets hope it lasts, as its been a battle for the last year to sort this out due to his high levels of anxiety. Will keep you posted, fingers crossed he will settle better at night. Di. xxx

Wow, what an achievement, thats brilliant news..........well done to your lovely J. It makes you feel so proud doesn't it ? Every little thing done is a big achievement ! Great news. Di. xxx

Hi all. Here is an update as promised on my other post I would keep you informed of the outcome of the meeting at Daniel's school. Anyway, the meeting went well, we met up with both SENCO and the Head of year, and basically they had given the new timetable for Daniel which will start as from Tuesday next week, as he has been ill this week and away from school it would have otherwise have started from this week. When he goes in next Monday, he will start by going to his normal tutor class, as this will change from Tuesday as well, then the head of year will come and collect him from one of the classes and show him 3 separate SEN classes for yr 8 and give Daniel a choice of the 3, then he will be told of his new form tutor and all this will then start afresh from Tuesday. So all looking good for now. I must admit they were very good and very understanding today. Thank you all for your help and support in this which have been a great help for me regarding the difficulties Daniel has been going through, its so good to see a smile back on his face. Cheers Di. xxx

Thank you all so much. Will get back tomorrow with the outcome of this. Unfortunately Daniel will not be going back to school until next week when he will hopefully be recovered by then with his chest/throat infection which has not helped his Asthma either. Thankfully my older son will be home to sit with him when we attend the meeting. Daniel's head of yr rang this morning, to ask how he was, although I did ring through earlier in the week to confirm his absence and an email just to be sure to get it authorised, but made it clear that he only rang to see how he was lol He is Daniel's mentor, so in that case we thought it was nice of him, but I do know they like to double check too.........because when Daniel was in yr 7 he skipped and hid in the school toilets when he couldn't cope with certain lessons and rang here then many times. Just hope now they will put Daniel in the smaller SEN class for asap, fingers crossed this will all be discussed tomorrow, as I want to prepare Daniel as early as possible, although this is what he had wanted since last year. Cheers all, get back to you tomorrow. xxx

Hi all. Some good news through the post this morning from the main head of the whole school. This has been a long ongoing battle but it has now been confirmed that my son Daniel (yr 8 mainstream sec school) will be going into an SEN learning support class from mainstream classes, this has been a very stressful time for Daniel and was skipping and hiding in the school toilets when he could not cope with most of the lessons, but did not help because of the large numbers in the class due to noise which did not help his concentration, so this change will hopefully start soon. However, we do have a meeting to attend this Friday with SENCO and this was arranged before we received the letter from the main head of the school, so what this is going to be about we do not know. Daniel has been absent from school this week due to a sickness bug that went onto a throat and chest infection, but the school emailed regarding the meeting. Daniel does not have a statement, but is under school action plus and has been for over a year, so hopefully now by him going to these SEN support classes this will resolve everything for him..............fingers crossed. Will let you know the outcome of the school meeting. Cheers Di xx

Good luck and fingers crossed to you hun. Di xxx

Hi all. An adviser have helped fill in my son's reviewal form for DLA, he was only awarded almost 2 months ago with LRM & LRC, this was after a tribunal hearing, basically we feel the care rate was low for his needs and requirements which are not getting any better for his age, he is almost 13 and doing things for him, attention, care, support, supervision this and that both day and night, so was advised his award should be looked at again. Due to this as you cannot exactly appeal to the tribunal for this unless you find an error of the law stated on the statement of reasons, even though we feel his issues were overlooked I was told it would be better to contact Blackpool and ask them to look at my son's award again going on the grounds of him getting worse. These forms are separate, you tick a sheet for what you want looked at again, such as tick the part of help with getting round or tick help with personal care, so have ticked personal care, if you want them to look at both you tick 2 parts, but my adviser said obviously his mobility rate will not get higher but cannot get lower than low rate care anyway and its his personal care needs reviewing on the award. We have 28 days to do this and send back, so its slightly different to when you first apply. I am just glad I have had help this time round and more support from specialists etc, even his CAMHS appointment have been brought forward by 2 months due to his anxieties etc etc, this was meant to be for Jan 08 but now has this appointment this month. Please does anyone know the procedures of a DLA review and how long this takes ? I suppose it may still be the same progress like the first application and up to 11 weeks. Has anyone done this and have been successful by doing this or lost out ? Many thanks Di. xx

Hi taggingalong Your son reminds me of mine and obviously many others on here will think the same too about their kids. Daniel will be coming up to 13 after xmas, and still sucks and chews his sleeves, the amount of jumpers he went through in the juniors well I wouldn't like to say. Daniel suffers with high anxiety levels and when feeling really down he will say things like "why am I here, I wish I wasn't and then he says things like he is going to stab himself , yes I admit its very upsetting and we do our best to support and reassure them. I think hun this may be anxiety and when it comes to school he stresses before getting there, just like my son and come home time he is brighter and like a different person, but then gets all wound up if any homework etc. Daniel finds it difficult to make friends, and I found this upsetting too, as he will not go anywhere out of the house unless encouraged, but we must reassure him these places are not crowded. Do I remember right that you have a CAMHS appointment coming up ? Write down all your concerns and they will sort these issues our for you hun, but try not to worry even though its hard not too and remember you are an excellent mum and your son knows that too. Good luck at the CAMHS appointment. Di. xxx

Hiya Shars What I did because I wanted to be prepared for my son's appointments with CAMHS etc I had wrote to the head of year and requested copies of the school records in order to take copies to the appointments with me. I had wrote to the school at the beginning of the week and the following week they had all this prepared for me. You are in your rights to request these and there is to what I can remember a time limit, I cannot remember offhand but sure someone will let you know on here. Sometimes there is a small charge, for example: 20 sheets for a �1, but luckily we wasn't charged. To be honest though in these records were just copies of letters I had sent to the school beforehand, copies of Daniel's assessments made by each teacher which I already had copies of and any letters sent out to us on the past in copies. Nothing about behaviour, attendance etc, but this may vary from one school to another, and I think this was why we wasn't charged. Hopefully what you request will give more detail, but anything is still a help. Good luck hun, and just remember you can request the records from the school in your own rights. All the best. Di. xxx

Thanks again Lisa, you are a Gem. <'> Thank you for telling me the procedures of this. Jamie said he thinks it may be of some help writing some info to support the claim review, and will add what its like at home etc with Daniel's anxieties. Some of the doctors they use for these hearings have not got a clue.......so yeah stuff him lol , you are right what you said. I will keep you all posted and cheers again. Di. xxx <'>

Hi Lisa And thank you so much again for your reply. I was advised about a form for review by the DAP adviser, but if I had known I could also do this like how you done this I think it would have been less stressing, as you know these forms are stressing. Luckily though the adviser I'm using this time is helping me through this and if I had known about her when we first applied I would have gone to her then, and her success rate is very high, but I suppose she is used to it. The adviser is also a support worker for children with ASD, so that helps I think. Since the last application too, we have more behind us like the 'support worker from social services' who sees Daniel every other 2 weeks, he has been great and very understanding, I am going to ask him to fill in a statement and an extra letter to add with it, and I know he will do this, as he did say before if in the future if I need any supportive evidence then he will not hesitate and help out, also Mencap. Daniel is also due to see CAMHS again as a follow up appointment, this was brought forward by 2 months, so he is seeing them now this month Nov 26th instead of January because he cannot cope at school and this does not help his anxiety levels. I will of course ask them if they can add some supporting information and also his Child P who referred him to CAMHS earlier this year. Daniel was officially diagnosed in July by the CAMHS team. My other son Jamie has also offered to write a letter to support this as he believes Daniel's issues especially at night disturb the whole household, so hopefully this will help too. I'm glad it worked out for you in the end. At the tribunal hearing, we felt so humiliated, and the doctor was muttering under his breath "I just can't understand", he said this several times, he did have an attitude. Sorry you may have said before, 'did yours go as far as a hearing' ? Anyway thanks again for your helpful info this has really helped. Will keep you posted of the progress. Luv Di. xx

Thank you again Lisa. Just looking through now and realised I had left the main letter about this in the envelope lol They have given until the 29th of this month. So do they compare this with the tribunals decision as the original one as the dla decision was made by these people at the hearing ? And you are right with all you have said about sleep, and yes my older son does need his space for studying and this can also be difficult if Dan the man is keeping us awake. You know what thats like and with me I suffer high blood pressure. I cannot believe the tribunals wrote on the statement of reasons that they do not accept that Daniel still attends school 90% of the time with little sleep, like I said earlier this makes me out to be a liar in their eyes. They obviously do not understand what ASD is like. My adviser from disability advice project is helping with these forms next week, so now I will also get in touch with all the specialists Daniel is under to ask them to support this. What I was mean't to ask you was 'Do I have to fill all of the forms, as these are all separate now'?, as Daniel has both lrc and lrm I want to mainly fight the care rate ? Thanks. I expect the adviser will know too, but just want to be prepared on a diary form, which is a great idea, thanks hun. Look forward to hearing from you again soon. Di. xxx

LOL me too ! I have often sent posts then re -read them and think.........OMG I hope that's not going to offend anyone, sometimes I find it hard to find the right words if you know what I mean ? I think everyone on here though are very understanding and know how it goes, so try not to worry, I now seem to think we all think the same way. no offence !........ Di. xxx

Hi Lisa and thanks. I am surprised I have already received the forms...........I contacted Blackpool on the 1st of Nov and this morning these arrived in the post. Seems like this time round there are separate forms to fill in, but will leave these to the adviser to help out this time in case I mess up. lol. Must say on the forms somewhere, I haven't had the chance to go right through them yet, but do you know how long I have to do these ?, as I want to make sure the support services and CAMHS, mencap etc have time to do some supporting letters for this, and hoping to send it all off together, as I have heard some stories of these getting mislaid and think it may be a risk to send these separately. There is a question on the one part of the sheet that states 'if you are asking us to look at your claim from an earlier date than 01/11/2007, please tell us why you did not contact us sooner', did you have this ? Right then, will keep you posted and with a bit of luck they will agree to review and change his low rate care award and hoping they will not remove his low rate mobility award. Thank you again. Di. xxx

Hi. When Daniel was referred earlier this year to CAMHS from his Child Paediatrician, as she mainly done the assessments for a good few months, all the information was forwarded to CAMHS, as his Child peadiatrician was not in the position to diagnose him officially. Anyway when he had his first appointment for CAMHS we met up with one of the specialists, he was a lovely guy, and as I had also requested from the school for Daniel's records in good time for the appointment I had taken these along with me too, even though they already had the overall information about this, but I thought it was also a good thing to request updated assessments etc to take along with us. The school done this within days, so it may be worth you asking the school for updated information and a report in good time for the coming appointment. The first appointment was mainly questions about the birth as already mentioned, oh and the pregnancy and family history etc, and if there are anyone else with an Autism spectrum. With me I had a difficult pregnancy & birth on Daniel of where he was distressed, but also have severe autism in both sides of the family too, my brother now 42 is severely autistic and my hubby's first cousin and there are more again maybe distant in the family. We were also given a questionaire to bring home and to post back before the next appointment, this was if I remember this was about Daniel's development from born and now, the specialist wanted this back before the following appointment which was just under a month after the first one so that he could check this over beforehand. The following appointment a diagnosis were given, but these I know can vary. Daniel is almost 13 now and was diagnosed at 12, yet he was seen by a child pyschologist when he was 4/5, but then they said he was too young then to give any sort of official dx, but then to see how he goes. We do also now have a follow up appointment, this is to see how Daniel is coping at school and his sleeping problems. This was originally going to be for Jan 08 but CAMHS have now brought this forward by 2 months, so he will be seen on the 26th of Nov (this month). On this actual appointment Daniel's support key worker is coming along too. Hope all goes well for you hun, my fingers are crossed and I'm sure all will work out. Let us know how you get on - cheers. Di. xxx

Right then an update on the DLA. I rang the DWP and said I want my son's claim (award) to let looked at again, I explained his condition is getting worse etc and she was lovely............she didn't hesitate and said the forms will be with me shortly and they will look at them again. This time it will not be myself filling in the form it will be my adviser who is an expert in this type of thing. So far my son is awarded LRM & LRC, the lady on the phone said be warned this could alter his award for better or for worse, okay I cannot get any lower, but then there's a chance he may lose the mobility, and I cannot get any lower on the care, so it will be a bonus if he is awarded higher with that one, and of course must make sure he does not lose the full award. At least this time round I have more back up and support, lots of it, so fingers crossed it will take a turn for the better. Keep you updated. Di xxx

Wow, its the 1st of Nov already. Have many birthdays to cater for this month............just before xmas too , my older son Jamie will be 19 on the 15th of this month, a mate of mine is on the 10th, have a further 5 in the family with birthdays this month too. Didn't October fly by ? And I hate these early dark nights too...........don't mean to sound depressing but they always make me feel so down , but we got to get through it haven't we ? Now must start seriously think about starting my xmas shopping too. Di xxx

Hi Caroline..........love your xmas logo lol. Have had the forms for a few months lol, but not yet had the chance to fill them in with this and that going on......must get them done. Daniel is in need of lots of stuff for his bedroom, but baffled in what to add first. I'm sure I have come across some posts that state some have had visits and others have not, unless its just the first application we just get a visit. Let me know how you get on with yours hun and good luck. Di xxx

Hi JsMum Thats good news, well done. Did you have a visit ? And was this your very first application ? I'm not certain but is this a yearly thing with the FF ? Cheers. Di.

Cheers Caroline Fingers crossed this should do the trick this time round. Keep you updated. Di xxx

Thanks Nicola, will keep you all posted. think this is the same thing as asking for a supersession/review, hopefully this time round won't be so difficult. Cheers Di xxx

Hi all As most of you will know my son was awarded LRM & LRC in Sept this year after attending a tribunal hearing. I am happy he was awarded the mobility but not happy about the care component due to his problems day and night, as you know the lrc is just awarded for the portion of the day. The evidence was there in front of the tribunal from specialists but one which I must admit was an unreadable report from one of the specialists which the tribunals should have really asked for a copy of this in an understandable version and there were other issues missed too by the tribunals. Due to this it works out a different way to deal with this to appeal as you can only appeal a decision on a 'point of error of the law' to the commissioners and not the DWP, and yet there were evidence there they did not obviously use regarding my sons ongoing issues doth day and night which obviously involves me supporting him throughout. I had asked for the 'Statement of reasons' from the tribunals where on one part it states they could not understand my son's report made by his specialist and they also stated 'they could not accept my son still attends school 90% of the time with little sleep' !! I tried to make them realise on the day this can be a common fact with children and so with ASD etc, (I wish I had his energy), but they did not accept this and to me this is like making me out a liar !! Anyway today I seen an adviser who helps with tribunals etc, DLA and so, who have looked through this and has taken some copies, she is going to go through this with her manager and hope we have something to go by to get this looked at by the commissioners. In the meantime I have been advised by the adviser to contact the DWP to ask them to look at my son's claim again where they will send a new claim pack, so I can re apply for DLA which I did not know I could do this as soon as this after my son only being awarded in September, so going to go for this and see what happens about the commissioners appeal in the meantime, as I know this part can take up to a year or so. This time round I am going to use professional help with these forms as I also feel I did not add enough information on the first claim, and also this time round my son has a lot more professionals behind him, and will use these to, to support my son and claim as they have already offered already, such as the Support services, Mencap, Camhs are more aware of his issues to this time round and others, even the MP have offered further support with this. So to anyone in the same situation, if you feel your child has not received the right rate you can re apply whenever, this I did not know until today, so going to go for it and if we also have a case with the commissioners too, all the better, they will then backdate from last DEC 2006 on the first claim. I am going to contact the DWP first thing in the morning, so please wish me luck, cheers. Di.