KarenT

I haven't been on these pages for years and have just popped back today to have a browse around, and your post leapt out at me. If you haven't already found the information you need, Contact A Family have an excellent guide to claiming benefits at 16, including PIP: https://www.cafamily.org.uk/media/1039341/pip_guide.pdf

Thanks Baddad. Good idea to contact schools etc and ask if they've used it. I'm meeting with the Autism Outreach teacher next week so will ask her too. I haven't seen the SALT for months. At our last meeting she suggested we continue with what we were already doing with an Emotions Vocabulary and give it some time before changing things. That's worked quite well and J is better at recognising feelings both in himself and others, though he still has difficulties with expressing his own opinions and thoughts. Not sure if it's worth investing £75 on another Emotions tool if he's already making good progress with the paper resources we're using already, which might be better invested in getting the SALT to encourage this aspect of his communication development. Small steps again, as ever Thanks again Karen x

I've been sent this link by a SALT as a possible way of approaching J's deficits in understanding and expressing emotions. The SALT hasn't seen it herself, nor does she know anyone who has used it. I'd consider paying if people had had positive experiences of it but otherwise it seems a lot to pay. Has anyone on here used this, or have their children used it in therapy sessions at school/elsewhere? http://www.loggerheadpublishing.co.uk/products-page/feelings-emotions-resources-10/feelings-and-emotions-dvd-ref023k/ Hope it's OK to post the link on here - I'm not familiar with the rules about such things these days. Thanks Karen x

Take care, Karen. You have contributed a lot to his forum and deserve the break. I know where you are coming from - I often feel it's time for me to go but I stick around, just don't post as often as I used to. Keep in touch occasionally, let us know how you get on, and good luck for the future. Karen x

We've been snowed in for a week here, masses of it (Gateshead). There's about two feet in the garden, and every time I go out to put something in the bin I have to scrape off another two inches that's appeard since last time. I've never seen snow like this and I'm very old indeed. It was -9C here yesterday during the daytime - horrible. There are still quite a few main roads blocked or unpassable in the outlying areas, especially A66 and A69. Even the three-lane stretch of A1M has had some major difficulties this week. Karen x

Really great news Bid (only just seen this). It must be such a relief after all this time. Another one here who can't believe it's nearly two years. Thanks for updating. Karen x

I wept like a baby . J was mortified Great film though, better than I'd expected. Karen x

I qualified for a voucher over a year ago when J was already being home educated - no statement and obviously not at SA+ as he was no longer in school. My family support worker at Barnardo's did the paperwork. She wrote a report about J's longstanding social communication problems that had not been supported in school, and carefully mentioned that he'd been at SA+ before being withdrawn. IIRC I did a report myself giving my reasons why I thought he should be considered for the scheme. We got a reply within a couple of weeks. The only snag I found is that they give you a very limited list of SALTs who will accept the vouchers, as Cerebra's scheme only covers practitioners who are listed on a specific professional register (forget the name now). There were very few in our area and I only found one who was willing to work with us, and she dropped us after about four sessions to take a career break. However, I have since found out that other SALTs not named on Cerebra's list DO work with the voucher scheme so it's worth asking around just in case, though obviously that means more phone calling for you. It's a great scheme though. J was never going to get SALT on the NHS with his very specific needs and although we only had a few sessions with our therapist she was very helpful while we had her and I learned a lot - certainly enough to be better equipped to support his needs myself. Definitely worth going for. I didn't get a report though, although I was supposed to. Unfortunately our therapist disappeared off the face of the earth and didn't tie up loose ends before she stopped working for us, but it was definitely what she was supposed to do. Perhaps specifying from the outset that you'd like a report would be a good idea, to be on the safe side. Karen x

What worries me here is this word 'disruptive'. I totally support schools having more power to manage pupils who are wilfully causing disruption in class to the detriment of other students' learning. No problem with that at all. But what about a child who becomes agitated and unable to cope because their basic SN needs have not been met, and by that I include support in learning how to manage their emotions in difficult situations? This happened to my son so many times in his last few weeks in schools. His anxieties, sensory difficulties, emotional deficits, disorganisation and stress were not supported in any way and he was left to manage completely on his own. When it all got too much for him and he lost control he was restrained as a default measure (and by that I mean physically grabbed and not using recommended techniques) and carried off in hysterics. Did it help? Well, it got him out of the room but so the teacher could continue her lesson but it left him very badly damaged. Is that acceptable? I think not. He wasn't the only one this has happened to. I know of many other children who have had simlar treatment from schools which failed to give adequate proactive support and teachers who didn't know the difference between badly behaved kids and those who simply reached the end of their coping limits because they needed a bit of help and it wasn't given. I know that a child losing self-control IS disruptive, and it does need to be dealt with. But I worry that liberties will be taken in classrooms because staff now feel they have a right to restrain any child who is causing them problems and they will be supported by their seniors if they do under any circumstances. Karen x

I'm very concerned on the reference to 'when teachers can use force'. I feel very strongly that this will be abused and children will be restrained inappropriately as a matter of course. This happened to my son in a 'nurturing' primary on many occasions and it did an enormous amount of harm. I am very relieved that my son is no longer in the education system. Karen x

My son is definitely lazy. His consultant says it's part of the ADHD component of his diagnosis, but while I acknowledge that as part of it, I'm also aware that laziness is part of his personality. For me, it's important to separate the two as they have different meanings and reasons. Medication improves his focus and motivation to work, but on a personality level he'll still move the earth to get out of something if he can Karen x

Rannoch, when my son was still attending school he came out at the end of each day so exhausted, stressed and angry that he could barely speak or eat, much less engage in an additional programme of social skills development. The fact of his attending school vastly limited his opportunities for social interaction outside those hours because he simply hadn't the resources available within him to cope with it. He's making good progress now but only because I'm able to cater to his specific needs by balancing his academic and social curriculum to what's right for him, something that two schools were determined to not even try. Karen x

Caroline, it sounds as though your son's teachers are almost treating the social skills group as a reward for completing class work, and it's been taken away from him for not doing so. That's not right, IMO - each is equally important as the other and suitable arrangements should be made to accommodate both. On a personal note, I home educate, have done for the past two years. J is a very bright lad, potentially could do very well indeed, but his poor social skills limit his ability to achieve academically. He too has strong ADHD presentation for which he is now medicated - there have been some significant improvements but we're still working on optimising the drugs and social problems persist. At least half of our week is spent on social and emotional development with a definite slant towards independence. These are, in his case at least, more important at this stage in his development than academic achievement. He's very bright, will always be very bright, but my feeling is that he needs to develop his social side first to enable him to access his academic education with the best possible outcome. He will always have the intelligence to allow him to study more effectively once he can cope with a group learning environment. I think for us it's finding a balance that suits and will enable him to grow most effectively. J has absolutely dire organisational skills so I have to allow for that - he cannot plan his own work and is poorly motivated so we have to share responsibiity for that at this stage, though we're aiming towards him being able to do so independently. We have to recognise what's within his limits and give him reasonable challenges to push his boundaries, but a lot of these problems stem from his ADHD anyway so can't be resolved overnight. Digressed a bit there, but to summarise I think it's about balance between the two, depending on the child's individual needs. I agree with what you've said about everyone needing social skills to some degree and it's much harder to get on in life without them, so they must take a high priority in anyone's development.

I used a template letter from the Office of the Information Commissioner http://www.ico.gov.uk/for_the_public/personal_information/how_manage/access_info.aspx I believe it costs up to £50 to cover photocopying charges, admin etc (same for PALS medical information requests). It is worth being very specific about the type of documents you're asking for then there is little room for error or misunderstanding on the agency's part. Could save time later. Mind you, you're not guaranteed to get the information you're after. I got very little from my son's school (little more than his attendance record and address ), and they even claimed that my request was against the Data Protection Act. Eventually, the school claimed that I'd already been sent all relevant information so they couldn't provide any more - at that point it became a very difficult argument of one person's word against another's - legally I suppose the school could claim to have fulfilled their responsibilities even though they clearly hadn't. Oh, one other thing - teachers' personal notes aren't included in Freedom of Information, nor info about your child that appears on another person's file, so you would have less chance of access to those. IMO staff may use this loophole to avoid making detailed on-file recording of a particular child so that parents don't have access to this information. Hope you're more successful than I was. To be fair I had a lot on my plate at the time and couldn't pursue it as much as I'd have liked, so maybe you'll fare better. Karen x

The Cerebra guide is excellent, probably the best advice guide for DLA I've seen, so please do use it as it's very helpful. I too applied for DLA for my son before he had a formal dx. His first assessment at our local hospital was inconclusive and school claimed there were few significant difficulties there (he had no school support at all, thought he should have), yet we still got an award of middle rate care and low rate mobility which has continued. There were very few reports from professionals that highlighted the extent of his need yet my contribution was sufficient to convince DWP that the claim was valid. He's just received an award at review which will take him to his sixteenth birthday. I recommend not writing directly on the form but to compile your claim in Word with the same headings. Some of the box sizes for your answers are ridiculously small and I think that's intentional - they give you insufficient room to give comprehensive answers then when they refuse an award it's easy to say you didn't provide enough information . Writing it in Word means you can give as much detail as you think relevant without restrictions. The only writing I put on the form is the duration and frequency boxes in each section, signatures and dates where required, and See Attached Document in all the boxes. I bullet-point each heading with Key Difficulties then Additional Support Needed, with a full written explanation below. My last application ran to 26 pages, on top of which I enclosed as many reports as I could lay my hands on, including emails from SALTs, OTs and other agencies where there were no formal reports because that showed that there was involvement with these services. It's also useful to give a list of appointments, phone calls, emails etc that show how much time you're spending on supporting your child. I also give a sample of the visual supports we use - social stories, 5-point scales etc - anything to show the effort that goes in to keeping him going. As Jaded said, you probably don't realise how much you're doing above and beyond what other parents do for their NT children - it becomes habit and you just accept it. But that is essentially what child DLA claims are about - demonstrating how much additional care they need compared to another child of the same age. It can come as a surprise to realise how much you DO do. A word of warning. The forms are horrible to fill in as you focus on the worst of your child and it's easy to feel down when you're filling them in. Take your time, do a little bit each day and remember the positives too. One parent advised that while you're writing the form you keep a separate piece of paper beside you, not part of the claim but just for yourself, on which you write down lovely things about your child. It helps to balance things out a bit. Good luck. Karen x