emmasmum

Really pleased to hear that - sounds like you had a great time! Carol

Yes I 'm not sure I follow head teacher's reasoning. Probably best to speak to the after school club staff - they should know about any funding they can apply for if it's needed. My son had 30 hrs 1:1 at mainstream school but has never needed 1:1 at after school clubs. I always used to explain his SN and they kept a closer eye but that's all. HTH Carol

I think it very much depends where you live. In Hampshire, school transport are adamant they will only transport to and from the home address and will only provide transport for normal school times. Some schools have made their own arrangements for transport to take children home from after school clubs, the rest of us have to go and pick them up. In Hampshire childminders and childcare settings can apply for "CHIF" funding (childcare inclusion fund) which will cover the childminder's extra costs (if she takes less children or needs to hire an assistant) or appropriate support at after school club. I don't know if this is a national thing. Here, they also are using some of the Aiming High money for this purpose. The Childcare Act says that local authorities need to ensure there is sufficient childcare available for all children, including those with additional needs up to age 17 so I would be inclined to contact your local child and family information team (was previously Children's information service) and ask their advice. Hope this helps, Carol

Welcome to the forum. My daughter was diagnosed with ASD aged 14 (last year) - she was also thought to have dyspraxia as a little one. I hope you find this group helpful, Carol

Hi there, my son (rare chromosome disorder - not asd) goes to an MLD school which specialises in ASDs. They have an ASD unit for the pupils who can't cope with too many classes in the main school but try to integrate as much as possible. I'm not sure how able your son is academically? If he is high functioning then you'll want to be sure that the school can cater for him academically. My son's school does have pupils sitting a number of GCSEs, but they are in the minority. HTH Carol

I believe that, regardless of renewal date, you get adult forms to complete in advance of their 16th birthday. Our son's renewal was set for his 16th Birthday. With the DLA form comes an extra form where you say whether your child is capable of managing their own affairs. I ticked no. Sometime later (5mths for us) they arrange for the local pensions service to come out and check for themselves. My son has significant learning difficulties, so it was fairly straightforward - I explained that he has no concept of the value of money and is very vulnerable. We had to provide ID for him and me and that was that. At the moment his DLA is paid into a joint account between my husband and I. The DWP man said they'd prefer it if it was a sole account in my name or, even better, a joint account with my son. He left it as is for now though and we can let DWP know when the new account is up and running. HTH Carol

sorry I didn't make myself clear - we are appealing against refusal to assess. I think the 22nd is when I have to let them know who will be attending the tribunal. LEA haven't told them yet as they said they can't confirm because it's half term.

Thanks everyone. I see that NAS now have a tribunal helpline so I might see if they can suggest some private EPs. £500+ is manageable - but one I was told about was £2000+ which is beyond our means, even though if she got a placement at an independent school/college it would be worth it. I have grave concerns about how she will cope with leaving school and moving on to college as at the moment she only feels secure at school if her best friend (only friend) is there. It took her ages to find her way around the school and every year she struggles to get used to new teachers/new expectations etc. IPSEA advised not to shell out for reports now, but to wait to see if they have to do the assessment and get them for that, which is why I've not done anything. IPSEA also said the LEA would likely approach me to reach agreement before their evidence had to be in but they haven't so they either think they have a really strong case or are trying to call my bluff. Emma is already seeing CAMHS - the Aspergers diagnosis was via them and the phsychologist referred her on for CBT following the diagnosis as she has very low self esteem and confidence. The GP said she was suffering from depression but we haven't had that diagnosis confirmed by CAMHS, although they are fully aware of her difficulties. The Aspergers diagnosis said she would benefit from being educated by someone experienced in ASDs but I suspect that's far too woolly to mean anything. I have to have my form confirming who will be attending in by 22 June - I suspect I'm too late to engage an EP and add their details to the form, but a written report would probably be better than nothing.

We just found out about ESA from another parent. My son has a rare chromosome disorder so it seems he can claim from his 16th birthday - he will be attending a SN course at college from September. I'm shocked that DLA don't send something with the post 16 renewals.

mmm - I'd dispute that she gets 10 hrs of support. There might be LSAs in her lessons but that's because she is in lower/mid sets so they've got quite a caseload. However, I know it's not going to help at tribunal to criticise what the school are providing. I do know what you're saying though - Em does badly in exams too and you're right - her low attendance (coupled with zero motivation) probably don't help any. I'm just so angry that she went so long without things being identified and put in place. If they had been (socially I mean) maybe she wouldn't be having such a hard time now. I would have also liked EP to assess her again and give us some strategies around her memory problems and confirm that she doesn't have dyslexia/dyscalcula

DD (14) was diagnosed with Aspergers last year despite the LEA EP telling us last summer that she would be highly unlikely to have Aspergers. She was assessed at age 6 as being on 73rd centile cognitively, which we were told was high average. Primary school had her on school action but didn't really do anything to help and refused to accept she had social problems. At the end of primary school we found out she had auditory neuropathy - a hearing problem. She transferred to secondary school with a hearing device (similar to radio transmitted hearing aid). Moved onto school action plus. Secondary school focused on the hearing problem, though they did put in place E-LSA and backed me up when I decided to try for assessment for Aspergers. EP (before the diagnosis) recommended Em have weekly emotional literacy sessions, social skills work and circle of friends. The emotional literacy stuff took a long time to get started but she was finally referred to school counsellor in February and that is now happening. Social skills training hasn't happened and nor has circle of friends. Em dropped a GCSE for "study skills" where they help her with her homework and coursework. Her target grades are 4 Cs and 3 Ds - her progress is below expectations in 3 subjects. We have been told the D target for Maths is challenging. LEA evidence due in today - they have emailed it to me. They say Emma's cognitive scores are within the average range and so is her attainment. They say she is having 10 hours of support per week provided by the school. They say a statement won't add anything and by the time it is in place she will be leaving school. They say do an inclusion partnership agreement which school have already said is a waste of time. School say they're doing all they can. They don't support our request for a statement. Emma's science teacher commented the other day that cognitive tests done when a child is young often don't hold true as they get older - this is the first time anyone has said this. The basis of my frustration has been that she scored high average cognitively so should be achieving Bs and Cs not Cs and Ds. She is also depressed and having CBT due to her very low confidence and self esteem and has low attendance levels because of this. Will I be laughed out of tribunal. They way they've put it makes perfect sense - have I been misguided? I spoke to IPSEA before the LEA sent me their reply but to be honest the person I spoke to was quite wishy washy and didn't really help. Thanks Carol

I strongly advise you look at the Cerebra guide to DLA - you can download it or be sent a hard copy for free from www.cerebra.org.uk It's FAB. Also, NAS has some good autism specific advice, HTH Carol xx

I knew it wasnt going to be easy to go shopping for clothes but... My daughter (14, diagnosed last year with Aspergers) lives in skinny jeans, t-shirts with fun slogans and hoodies. She obviously wears her school uniform (polo shirt and black trousers), but that's the variation of her clothing. We go to Australia every few years to visit family and it's a real battle to get her into shorts - she will only wear them on the very hottest of days. She's not worn a skirt since she left infant school. Today we needed to go out and get her something to wear for her work experience interview. The instructions are smart casual - no jeans. I agreed with her that school trousers would probably be OK - so she just needed a suitable top. She hates clothes shopping with a passion - refuses to even look at the clothes I suggest. I did manage to find a plain black linen shirt which she grudgingly approved of - she's tried it on at home and looks beautiful in it. My son had his prom a few weeks ago and my daughter was talking about how she'd like to arrive at hers. Today I saw a beautiful dress but she wouldn't even let me hold it up against her. She said she won't go to her prom as she hates dresses and hates discos. It really upset me and I'm trying to analyse why. I sat and cried in the car on the way home and so did she - she thinks she's a disappointment to me, but it isn't that. Of course I would like her to enjoy the big party they put on to celebrate the end of school. But also I think her self esteem must be so low to not even be able to face trying on a dress and I have to take some blame for that. I have always told her how pretty she is, but obviously that wasn't enough. She's a size 8 with blonde hair and blue eyes - why does she think she looks so awful? Last year we had to go to an event in London and I'd told her jeans weren't allowed - we had the same sort of battle - in the end I allowed her to wear jeans style trousers which weren't denim - she's not worn them since. I did persuade her to try on a dress but she cried her eyes out in the changing room and refused to look in the mirror. No real point to this post, but it helped to write it down - thanks if you got this far Carol

When we first asked our GP he was going to refer us to paed also. However, when i told him what she had said he referred us to CAMHS instead. My daughter's primary school maintained all along that she was just a loner, a daydreamer, lazy and that she always had lots of people to play with. (my daughter told a very different story and to this day we don't know why they made it up). I've obtained my daughter's educational record (we are going to tribunal for statutory assessment) and in it the primary school had recorded that ADD and Aspergers had been ruled out!! Follow your instincts - you know best. It does vary from area to area as people have said and NAS (or a local autistic society/NAS branch if you have one?) might b able to advise you on how it works locally. We're in Hampshire by the way so probably not the same paed :0) Carol x

My son turned 16 in April. He has a rare chromosome disorder and significant learning difficulties. First I had to chase someone coming out and had to resend the forms I'd lodged saying he couldn't manage his own affairs. Then he had a letter saying someone was going to see him to help him apply for DLA! I phoned them and they said it was the wrong letter. I am angry that they say they will come "in the morning" or "in the evening" and won't give a more specific time. They are coming next week as I said I didn't want to take him out of school to wait around for a morning - will keep you posted. Hope your appointment goes well.

I'm sorry - I'm not sure of the history of this but the first step is to phone and ask for an explanation - why are they disputing what you've put on the form? The second is to ask for a review of the decision - another decision maker will look at the claim and see what they think. The third is to appeal, but before you do that you may wish to ask for all the evidence they have used in reaching their decision. It might be that someone has contradicted what you said (eg: GP/Dr) HTH

How ridiculous! I'm now wondering where you live as it sounds like the paed my daughter was seeing from age 6 to age 8ish - as useful as a chocolate teapot. Insisted she had dyspraxia even though physio/ot assessment ruled it out and said she was "too sociable" to have Aspergers. Roll onto age 12ish when I contacted her to ask for a referral for an assessment for social communication disorders - she said nothing more she could do - GP would need to refer her to CAMHS - he did and finally, at age 14, she was diagnosed with Aspergers! She did see a speech therapist as part of the assessment - at age 14, so your daughter isn't too old. It isn't down to school to refer her either. Our paed kept saying we should see the educational psychologist but they can't diagnose Aspergers and, in fact, a few months before we went for the assessment told us it was highly unlikely she would have Aspergers! Makes me so cross. It does depend on the area you live in but my advice would be to go back to your GP. Tell him the paed agreed that your daughter has problems but said she couldn't help. Ask him to refer you to CAMHS or whoever does the diagnostic assessments in your area. It probably comes down to funding or something stupid - if paed refers she pays. You could also ask NAS for advice. HTH Carol

It's any help the child needs and it could be for something they would like to go out to if they had the help. I included things like buckling him up in the car/closely supervising on the walk to.encouraging him to participate, interpreting instructions for him, etc etc Have you looked at the cerebra guide and the nas helpsheets on DLA? HTH Carol

I think the problem is, as someone has said, if you are saying he lives at your ex's address then they will say to apply to that local authority for a statement. I do think it would be worth pointing out to them that if he did have a place you wouldn't be seeking transport. I'm not sure you could ask for transport from your ex's house to the school as they would have contracts with local firms and if they use a local firm then it would still have the same cost implications. If it's the right school for him and you can demonstrate that there are no closer schools that can meet his needs (which it sounds like you can) then the cost of transport is irrelevant. They couldn't (I don't think) refuse to place him there on the grounds that the transport costs were too high if it were the nearest school that could meet his needs. HTH Carol

He is entitled to reasonable adjustments for his disability regarding the interview, so it would be appropriate to let them know beforehand and, if he'd feel more comfortable, to have you present. HTH Carol

We've been through it, although at the time Em hadn't been diagnosed. The removeable braces are awful and Emma was so upset. Her orthodontist said she had to wear them all day and night, including meals, from the off, but there was no way she could manage to eat in them. I did let her remove them for meals, and if we were going somewhere special or if she wanted to have sweets/fizzy. She took Ibuprofen for the pain and, in the early days, we combined this with paracetamol. She had to go and have them adjusted regularly and when they were adjusted it was painful again for a few days but not so bad as the first time. The removeable braces did get easier - I mean she could hardly talk at all when she first got them but after a time she could speak pretty well in them. Emma refused school when she first had them - she's been bullied and was worried this was another thing that would make her a target. We had to reinforce the message that it wasn't a choice of school or no school it was a choice of braces or no braces. She'd also been teased about her overbite so she did really want the treatment. When she went back to school (after a week or so) the SENCO sent a note around to her teachers asking that they be sensitive and not ask her to speak in front of the class for a time. Things that might help: Before and after pictures of people who've had braces - maybe a social story about the treatment? Some sort of planner or timetable showing how the time will increase from 2 hrs a day to so many hours in the evening to all day at school etc etc. I wasn't prepared for how difficult it was so I have every sympathy for you and your daughter. Carol xx

Cerebra have a sleep helpline and also can do home visits in some areas: http://www.cerebra.org.uk/parent_support/s...t/sleep_service HTH Carol x

I found the notes that accompany the new forms really easy to follow. The cerebra guide to DLA is very useful (from www.cerebra.org) - although it's based on the old forms question by question, you can still have a look and find the questions that are asking the same thing. NAS also has some autism specific advice on their website. Good luck! (and don't forget to photocopy!!)

IPSEA have an excellent refusal to assess guide which can be downloaded free from their website. I'd strongly suggest having a look at that and trying to get through to their helpline before you send the form off. HTH Carol

You can claim DLA without the GP's agreement but there is a strong possibility that they will write to the GP for input - they usually like some sort of professional backing of what's being written and if she's not at school and doesn't see CAMHS then she'll struggle with this. It sounds like this GP is abit "old school" - I'm pretty sure you can claim DLA for "mental health" reasons. It seems like the ideal option would be to change to a more sympathetic GP - is there another at the same surgery she could ask to see?