di30

Hi Flora And thanks for your reply. No date yet, they received my appeal tribunal form on the 10th July, so I don't expect they will rush with it, but I do have lots of evidence regarding those points where last week Dan's Child P and camhs doctor supplied this and sent it directly to them and me with copies. Fingers crossed they will take note. What I do know is if they finally award Dan they said they will backdate it from DEC 06 of when first applied, but golly what a battle. I will let you know when I hear and thanks again. Take care. Luv Di xx

Hi and thanks for your feedback. To what I can recall it just stated something like �25,000 in Wales excluding overtime and bonuses. Not certain about dla etc. Cheers Di xx

Hi I was browsing on the family fund website, and realised they have �25.000 and less for Wales. Okay we live in Wales, and have applied for a form to be posted directly due to printer problems so in other words we cannot print one off, but shouldn't this be the same amount apply for England etc too, and not �23,000 ? Unless I have missed this somewhere along the line. I think it all should be treated equally. I shouldn't be complaining............but I'm sure you know what I'm getting at. Di xx

Thank you Bard I will let you know how we get on. Cheers once again. Di xxx

Hi Everyone. Just going through the submission papers for the dla tribunal hearing, those of you who have been through this will know what stress this will cause, as there is that much to go through ! Anyhow, here is just some of the information and was wondering if this means that this will be brought up and questioned at the hearing, so here goes................ SECTION 6 - THE SUBMISSION ISSUES RAISED BY THE APPEAL: 1. The decision is that Daniel does not need someone with him to walk outdoors for most of the time. It is considered that he does not require any more guidance or supervision than any other child of similar age without disability. 2. It is submitted that the help Daniel needs with communication should only be taken into account as attention in connection with communication of the difficulty is so great that an interpreter would be reasonably required. In this case this is not considered necessary for most of the time. 3. It has been decided that Daniel does not need sufficient help with attention to his personal care during the day or night. 4. Whilst Daniel has difficulties getting to sleep he is not considered to be a risk of danger and would not require watching overnight. 5. It is accepted that Daniel has problems at school but these cannot be taken into consideration when determine entitlement to Disability living allowance. 6. Although Daniel does need some extra help because of his disability this is not substantially in excess of the help of any child of this age would need. Substantially in excess means that the help needed must be outside the whole range of help normally needed by a child of the same age. Children under 16 can get disability living allowance for help with personal care or help with getting around at a lower rate if: they satisfy the normal disability conditions, and any attention, supervision or watching over required must be substantially greater that that required by children of the same age and in ordinary health. THE TRIBUNAL IS ASKED TO CONSIDER AND DECIDE THE FOLLOWING ISSUES: 1. Whether Daniel satisfies the conditions of entitlement for an award of either rate of the mobility component of Disability living allowance. 2. Whether Daniel requires substantially more guidance or supervision in order to walk out of doors than a child of the same age in normal physical and mental health. 3. Whether Daniel satisfies the conditions of entitlement for an award of any rate of the care component of Disability living allowance. 4. Whether Daniel requires substantially more attention, supervision or watching over at night than a child of the same age in normal physical and mental health. In the meantime we have sent in further evidence from the CAMHS Doctor and Daniel's Child P, this confirms that he has ASD Aspergers syndrome, high anxiety levels disorders and some learning difficulties. This also explains that where others of his age group (12 yrs old) without disabilities are living a more independent life, this is where Daniel cannot do this, he never goes out alone and I still also walk him to and from secondary school, there was incidents where the police had got involved as he had to be reported missing from school. (he cannot cross a road on his own etc). The list goes on and sleep.............whatever that is ??? well we are lucky if he sleeps at the earliest at 2 am and that is every night which is a constant battle. We still have to wash his hair, brush his teeth and his hair, and every day is the same from start to sleep, like I said whatever that is ???? Dan has terrible problems with communicating with others and never ask for help, especially at school...........I am a bit annoyed about the comment above section 6 (no 2) !! As most of you will know this is difficult for people with ASD, so to me the DLA decision maker does not have a clue !! Any advice regarding the tribunal hearing will be a great help to me, haven't had a date through yet but just want to be well prepared and know what to expect - thank you all again, sorry to go on, but I do feel Dan should be receiving this as his rights. I do feel though when we sent in further evidence and info before the appeal that they didn't read into this very well. Fingers crossed what we have sent in like I just mentioned above from the CP and CAMHS they will take this into consideration on the day of the hearing !! If Dan gets awarded then to my knowledge this will be backdated from Dec 2006 date of application. Thank you, I look forward to hearing from you. Cheers Di xxx

Hi all.. Hope your all enjoying the school summer hols so far..........okay its just the beginning, and hopefully we will get a summer lol. Anyway, regarding my son's DLA, we are now just waiting for the tribunal date for the hearing...............what should I expect ? Should I take Daniel ? Don't know if its the right thing to do or not, due to his anxiety levels, and putting him through it may not be the right thing to do either. We have since sent in further evidence regarding Dan's anxieties and his official dx of ASD -Aspergers, and where others of his age group without disabilities etc are living independent lives, he is having help, support and watching over 24/7 day and night. Letters were sent in from both the Child paediatrician and CAMHS, also a further letter from my MP. I just hope they take note of this evidence, and sleep wise (whatever that is) lol, Dan still does not settle until the earliest of 2 am due to his anxieties, half of the time I have to stay with him to settle him, as soon as he realises I'm not there he is calling me again. We probably get about 3-4 hours sleep a night and have bags under my eyes to prove this...............and so has poor Dan. So anyone that have been through this, please could you tell me what to expect ? I will be happy to hear of your experiences - thank you so much. Cheers From Di the nervous wreck.

OMG ! Thats is very bad indeed ! I thought it was bad enough with my son with ASD etc when we had to report him missing from school to the police.............and he is 12 !! I agree with what everyone else have said. Good luck hon and don't let them overlook this...............this is serious. Thinking of you. Di xx

Lol, and it is, so then Dan is off on the 3rd Sept which is the training day and back in on the 4th..........lol, must get my eyes checked out lol. Thanks for pointing this out to me. All have fun whatever you decide to do. Cheers Di xx

Hello everyone Wow well the school hols are finally here. Dan returns on the 5th Sept to yr 8, and this is on a Tuesday ! so again this means a 'teacher training day' on the Monday ! I cannot recall on having these when I was at school..........but it was many moons ago lol. A bit of sunshine would be nice lol No holidays booked this year due to a lack of funds, but hopefully some day trips if we catch Dan on one of his good days lol. So where is everyone going this year ? Whatever your doing please have a good few enjoyable weeks with our precious kids, have fun ! Cheers Di xx

Hi Well really I find it all confusing and have mixed feelings. My son was diagnosed with ASD -AS, high anxiety levels and some learning difficulties. My brother now 41 is severely autistic, due to lack of oxygen at birth (this is what the verdict came out as), same as my hubby's cousin who is also severely autistic both with no speech whatsoever. Yet I had a difficult pregnancy and birth, Dan was lacking oxygen too, so going by the reasons of my brother and my hubbys cousin I would say it was down to the births - that is my personal opinion on Dan, I may be wrong, but I do think this is the reason. My first son 18 now, the pregnancy and birth was all straight forward with him and yet no births are the same to my knowledge, he was born at just over 7 Ib's and Dan was born just over 8 Ib's. (Both born 2 days after given dates). Both of mine were constant grizzlers, but Dan a whole lot worse than Jamie, we were lucky if Dan slept in the day never mind the night. Cheers Di xx

Hi and thanks for your reply too. Daniel was given his official dx last week, and am waiting for the written report from the CAMHS Doc, which I hope will be here soon, as I am aware they need some sort of evidence to prove this, I can also supply evidence from his other specialist. I have checked out the Family fund website and I note it states we can apply if they are 'severely disabled' due to Dan with ASD Aspergers/high anxiety levels and some learning difficulties do you think he would be eligible ? What would they class as Severe ? Sorry for the questions lol, this is all new to me, and I don't want to waste anyone's time. I see you said your in the same position as me, I do wish you all the luck in the world. I will apply and let you know how we get on, good luck to you too, and thanks for your helpful reply. Cheers Di xx

Hi I didn't know anything about this, but would like some advice about this please . What do they class as income, obviously it would be what you earn from work, but what about Child tax credits, child benefits etc etc ? I am also waiting to see if my son will finally be awarded for DLA at a tribunal hearing, so I assume this would be included too, anc Carers ? Any info will be gladly appreciated, thank you in advance. Cheers Di xx

Hi, and thank you for your replies. Hopefully we should receive the report from the CAMHS doctor this coming week, the school SENCO and the ED P is also being sent copies of these. The Doctor did say he will add on the report what Dan requires at school and then hopefully in Sept when he will be in yr 8 they should have everything in place for him, with a bit of luck as I know there is quite a list so hopefully they will listen and go along with it, one of them is for somewhere for Dan to go whenever he feels he cannot cope, due to an incident at the school a few weeks back when he skipped lessons and hid, due to his anxiety. I do also know he will be in some but not all small group classes, as Dan requested to go into smaller classes when he spoken to SENCO at the meeting, he admitted to her that he cannot cope and gets easily distracted by noise, where SENCO said he is too able. He will still be under 'school action plus' and under an IEP programme, and if they cannot do a statement I just hope with what they have planned will work for him in year 8. I am also going to send a copy of the report to the LEA too, not sure if the CAMHS doctor will go as far as sending this to them. I will keep you posted, and many thanks again. Cheers Di xx

Hi all Wow !! I would like to check if my son age 12 just been officially diagnosed with ASD -Aspergers syndrome/high anxiety levels and some learning difficulties. I am waiting to see if he will finally be awarded any DLA, and would also like to find out if he would be eligible for FF if not awarded DLA yet ? Only my hubby is working in our household and wages dropped to less than �19K this year due to the company cutting down on hours. Do they fund for bedrooms ?, my son's bedroom is in desperation and it is very small too, he does not need a new bed, but due to the size of his room, built in cupboards would be a godsend, so he will have some space for his belongings. you couldn't even swing a cat in there. Any help and advice will be a great help, thank you. Cheers Di xx

Hi all Now that Dan has had his official dx of ASD Aspergers and high anxiety levels alongside with this, would he be automatically entitled to a 'statement of needs', he is already under the Ed pysc and SENCO, and we have meetings about 3 times a yr that include the LEA. Dan age 12 (yr7) in a mainstream secondary school is already on 'school action plus' and IEP's for his Social skills, numeracy and literacy and this has been an ongoing thing since he was 4 years old. At the last meeting in June with all of the above, Dan asked directly to them if it were possible for when he goes into yr 8 in Sept if he could go into smaller class groups, as he cannot cope in crowded classrooms where he gets very easily distracted by noise, but SENCO said she cannot do this as he is too able. Many of you may have read about an incident a few weeks back where Dan was skipping lessons he couldn't cope with where it came to a point that we had to report him missing from school to the police, as we did take him like we do everyday to make sure he gets there safely as he is vulnerable, but what he did was go straight into the school toilets for almost 2 and a half hours stressing !! Dan does not take part in PE activities either and stays with the 'head of year' when this is ongoing for others, his head of yr is his acting 'mentor' for the time being. When Dan was given his official dx the other day, the doctor said he will write a report to the school about this, and to list what help and support Dan should be receiving, as SENCO did want this advice from CAMHS as they had requested this. The doctor did say it is important to work on his anxiety levels and this is mainly the problem when he is at school. Any info and advice is a great help, although they say Dan is able, he is still behind academically, where he attends 'booster lessons' for the above as stated, but they should be able to give the support he is entitled to. We will also be receiving a copy from the doctor from CAMHS of the report, so at least in Sept we can check this out, but need to know further about a statement, if one is still needed or not. Sorry to go on, but I have no experience with this regarding statements etc, and I look forward to hearing from you, thank you very much indeed, much appreciated. (I am aware it can vary from region to region), we are in Torfaen (Gwent) in South Wales. Cheers Di xx

Wonder when Dan will receive his school report...........probably the last school day before the school holidays, but I do know they were sorting these out last week. It was bad enough when he was in the junior school.................always last minute so we couldn't comment on anything because by the time we received these it was then the school summer holidays. xxxxxxxxx

Thank you Lisa, Yes he seems to be fine about it and even reading more into it, such as on the brochures he was given and on the internet, he has realised he is not the only one. So we have been having a good time together this afternoon (I gave him the afternoon off from school), so we have been doing lots together, such as playing some boards games..........lol, ludo and I was not allowed to win lol. Cheers so much. Di xxxxx

Thank you all, I knew I could rely on you Do feel a bit on the numb side, but it has been 8 years lol, and it had to happen some time. Its been a long haul getting here, but at least we hope this will mean Dan will finally get the proper support he needs at school now. Thank you, you lovely people, where would I be without you ?, I have learnt a lot from you all and I would be at a loss without you all, so now Daniel's issue has been resolved we can relax, he hasn't said a lot, but we have tried to reassure him, in fact he has even had the full afternoon from school to help him deal with this, considering it was only this morning we were informed. He is now chilling on the X-box lol. Cheers again, much appreciated. Di xxx

Hi all. Just thought I would let you know of the update of Daniel my son age 12 of the outcome of his CAMHS appointment this morning, the Dr have officially confirmed the dx of what was suspected of ASD -aspergers syndrome and high anxiety levels. We thought it may have gone on forever, but CAMHS will not be actually seeing him now until next Jan 2008 for a review. All reports will be sent out regarding the dx to the school, his other specialists, our GP and a copy for us. The dr is also sending information and advice to the school in how to deal with Dan's issues, and what support groups to involve and so. I have been given a thick booklet called (GAP - Gwent Autism Pack) with support groups, stacks of info about ASD, and financial support etc. After all these years of battling we have got there in the end. Very tired now, so feet up with a cuppa lol. Di xxx

Hi Clare. Personally I would get Connor's toe checked out in case it is an infection. Daniel 12, he has had lots of time from school too, but most things have been genuine, and I used to hate ringing the school too, he's your son and not the receptionists, if she was in your position then she would do the same. We have Daniel's CAMHS appointment tomorrow morning, and he is already asking for the full day off and complaining !! You do what you think you should do Clare, the school should understand if you kept him off to check this issue out. Good luck hon, and hope Connor's toe gets better soon. Di xxx

Hi becci I feel I understand what your saying, my 12 yr old son is now under CAMHS, and it does feel like a finger is being pointed at us, as usual like they do, blame parenting skills, but I do know what your saying. I do tend to remind my son's specialists that I do have an older son who has had no problems and even just sat for his A levels etc etc, then they get stumped. Hopefully they will come to their senses and deal with that they should be dealing with instead of brushing things off. My son has his CAMHS appointment in the morning (Thurs), and I am just waiting to see what they come up with next, hopefully it won't be a waste of time, and lets hope they don't just keep going over and over the same process all over again, okay they have got to rule other issues out, but once thats done and dusted it should then move on. Fingers crossed to you, and so glad you have a great neighbourly family to talk to. All the very best to you. Di xx

Brilliant news, I have a lump in my throat, 'awww' And what an achievement, 'well done'. My ASD son is very lucky in that area, my sister in law has a farm, where Dan has his own horse, but he is an animal lover anyway, he says animals are his friends 'bless him' so now we are just trying to encourage him to take a lad who lives behind us to join him at the farm, as this young lad is pretty lonely too, so this would do them both good. Again 'well done' Di xx

Hiya Vicky and welcome. Your friends have done the right thing by advising you of this site, 'brilliant', everyone is very helpful and supportive on here. I only became a member myself a few months back, and the feedback I have received is amazing. You will find others in the same situation as yourselves, and will try to give you the best advice as they can, so keep posting ! And don't forget its only natural how you feel, as you are a devoted mum and want the best for your kiddies. Fingers crossed for you it will all work out in the end. Look forward to speaking to you soon, keep your chin up hun, you will get there. All the very best Di xxx

Hi. 'AWWW' I think this can be quite tricky really. I do hope your son is feeling okay now. My son now 12 he had done this a lot when he was in the junior school and when your son says 'its boring' that was also my son's words. It came to the point of where he was faking illnesses at times, such as feeling sick etc, and I must admit he was a good good actor too, many times I had kept him home then after a while he would ask for something to eat, to me if you feel poorly then you do lose your appetite don't you ? lol. You don't know what to do for the best, as my son even if he was feeling ill at school he wouldn't want to speak up about it to the staff, so then he would be suffering all day. I had noticed then he would complain of tummy aches on certain days, and realised this was on PE days, thats when I also realised he must of been faking some of the illnesses to have time off to avoid these lessons. As soon as I mentioned this to his school they said they will not push him to take part, then there were no problems after that. I just wish he had said something earlier to me. Maybe your son feels stressed about certain lessons that are due to take place on those days, then in my opionion this would be anxiety, I may be wrong, but perhaps its worth trying to find out if there is something worrying him at school that may have caused these tummy aches to avoid going to school. Hope you get the answers to this soon, and all the very best to you and your son. Good luck. Di xx

Wow, brilliant news Laine !! Submitting my form now then wait for a date of the hearing, they do say we have a better chance of this being awarded on a hearing ! Again fantastic news, now enjoy your brandy lol. Di xx