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About BusyLizzie100

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  1. And Asperger's is NOT a mild form of autism. This is what the NAS advises the media: DON'T SAY: Asperger syndrome is a mild/rare form of autism. DO SAY: Asperger syndrome is a form of autism Lizzie x
  2. My son is about to have his Y9 Annual Review, and I've read all the blurb in the SEN Toolkit and Code of Practice about what the Transition Plan is about... but can anyone actually tell me what it's likely to CONTAIN, ie what format it takes - are there certain headings that have to be covered? Are there any examples available anywhere, eg online? I know Connexions has to come, etc, although they haven't had any contact with my son yet. It all seems very mysterious!! Lizzie x
  3. Hi Dekra, I have three on the spectrum so their stories kind of overlap; I'll keep it as brief as possible! DS2 was born 3 weeks early but feeding difficulties weren't picked up (despite my concerns) until he was 10 days old when the health visitor weighed him properly and found he'd lost a quarter of his birth weight. Back into hospital we went because of severe dehydration and we've been 'in the system' ever since. His development was regularly checked. He has hypotonia (low muscle tone) and physio began at age 10 months to try to get him rolling and using his body. We got him crawling at 17 months and walking at 2 years. All developmental milestones were just on the cusp of acceptable. He was referred to OT and eventually SALT but was discharged after a few sessions. There was no real professional concern, although I was mystified by his presentation... MEanhwile I had concerns about DS1, who's 2 years older. He was very full on, and although no delays, he was referred to OT with suspected dyspraxia because, as I told the GP, 'He falls over so much and is constantly black and blue from bruises!'. This OT was different to the one that saw DS2, and suggested I read The Out of Sync Child, which is about Sensory Integration. I saw immediately how DS1 fitted the picture, but even more so DS2. Sensory issues are enormous for both boys, although they present differently in each. I went back to OT re DS2 and he began SI therapy. By that time I'd started reading more and more - DS2 had already been tested for Fragile X Syndrome and Muscular Dystrophy but they had been ruled out. I came across autism and again he fitted the picture. I clearly remember the moment I first posed the question to the paediatrician and OT: 'Is there any chance that we could possibly be talking autism??' In any case I though it could only be 'mild' (bear with me; I hate that expression now!). The paediatrician smiled and laughed kindly: 'Oh no, he has eye contact and is smiley and too socially orientated.' I was at my wits'end! I had one totally full-on child and one totally passive child. However the lovely paediatrician obviously did take my thoughts on board, spoke to the OT, the SALT and the nursery school, who all felt there was 'something' there, and she referred him to Guy's Hospital, largely with the OT concerns in mind. By then I was convinced that DS2 had Asperger's. At Guy's, Prof Gillian Baird and her amazing team 'got' him straightaway and diagnosed ASD, with possible additional learning difficulties (since ruled out); he was 4. By this time we were learning fast! We went back to the same paediatrician re DS1, thinking he may have ADHD, and she proposed Asperger's. We weren't surprised. We were referred to a multi-disciplinary team who confirmed her dx at age 8. I definitely feel that we as parents led the whole process, and were several times batted back with an airy wave; DS2 especially was consistently discharged by SALT and OT. Unfortunately for DS1 this attitude persisted right through his primary school education, since because he is extremely bright he is able to use his cognitive skills to cover up and mask a lot of his difficulties; however this has come at enormous cost and earlier this year he became suicidal. The support since diagnosis has been pants. Meanwhile DS3 came along, hit all developmental milestones super early and was physically a million times more able than the others. He appeared to have very obvious signs of ADHD, which the paediatrician confirmed at age 3. However by age 7 it was established that ASD was the prime diagnosis, although again because he is extremely bright and able its presentation can be very subtle - he is clearly very high functioning. At the moment, age 8, he is benefitting hugely from our experience (!) and his difficulties, or differences, are not causing too many problems. Autism is very much the norm in our household Lizzie x
  4. Eek, DS1 has got an extra tooth that needs to be extracted, then braces. He's 13. For the extraction, the options are local anaesthetic, sedation or general anaesthetic. The tooth is erupted, ie it's not ingrown or anything so hopefully not a tricky job. I'm thinking sedation might be the best - has anyone any experience of this?? Personally I've had wisdom teeth out under local anaesthetic and general, and I know which I prefer (general!) but I appreciate that a general is a big thing in itself. I'm really NOT sure he could cope with a local - the injection is often the worst bit!! Any advice? Lizzie x
  5. Hi Sally, How frustrating!!! Maybe the cancellations are because the tribunal's trying to rattle through all the fast-tracked transition to secondary appeals?! My friend was at tribunal in June for his Y6 son but they didn't finish, and have to go back in July to finish off. Presumably that second date had to be conjured up from somewhere??? Hopefully, as you say, fate is working in your favour... Lizzie xxx
  6. Thinking of you, Sally <'> >< <'> Lizzie x
  7. DS1's school is an academy as from today, 1 July. Does anyone if it's possible to read the funding agreement online? Do we, as parents have access? Lizzie
  8. Oh Tally, so sorry to hear such awful news. You and your family are in my thoughts. Lots of love, Lizzie x
  9. Fantastic news Feel really pleased for you <'> Lizzie x
  10. My youngest son is also 8 and also struggles with bottom wiping. For him I think it really is the idea of not being clean that worries him, ie adequate wiping and then hand washing. I think he also finds the flushable wipes a bit uncomfortable, too, since they leave him feeling a little damp down below... For my eldest, when he was younger his problems with bottom wiping had more to do with co-ordination difficulties, for example he had difficulty crossing the midline, which is OT talk for having difficulty using one hand on the other side of his body (or down the middle of your body). Part of his exercises involved doing big sweeping gestures, eg getting him to wipe the bath or windows or wash the car. He's pretty successful with wiping now, by the way, at 13, although we still have to remind about hand washing... and those flushable wipes do help. No answers, I'm afraid, but keep plugging away and praise and reward even the tiniest step forward. Try not to make it a battle and encourage him as much as possible. Hope that helps, Lizzie x
  11. I agree with JsMum. You can make an application for a statutory assessment yourself - if the LA agrees to do this then a thorough assessment of your son's needs will take place, which means the LA will seek advice from all those professionals involved with your son. The result would hopefully be a statement. If the LA turns down your application for Statutory Assessment, then you'll have the right to appeal to the SEND tribunal who really will listen to you and check all the evidence. However, the whole application and assessment process takes several weeks, and your son is due to start secondary school this September, which makes your situation tricky. I'm not exactly sure what you can do at this stage - I'd recommend contacting the Ipsea helpline (phone number's on the website) to get some specific advice. Hope that helps, Lizzie x
  12. Hi Parly, Just to clarify - was this an appeal to the SEND tribunal, or a panel meeting held by the Local Authbority? Thanks, Lizzie x
  13. With regard to my eldest, who has a diagnosis of Asperger's, the paediatrician now just calls it ASD. My second has always had a diagnosis of ASD. And my third, who is definitely high functioning and would probably previously have been diagnosed with Asperger's, was diagnosed with ASD last year. My view is that it's all autism and the ASD reflects the continuum notion. For the record, Asperger's is most definitely NOT a mild form of autism - my eldest son is currently experiencing far more difficulties than either of the other two... Lizzie x
  14. Hello Hayley, It's difficult to answer your query in detail without a little more information, but will have a go! I'm not sure who your appointment is with - is it with a nursery teacher, or educational psychologist? Is your daughter undergoing an actual assessment or has she had it? Is your child currently at nursery school? If you can let us know, I or someone else here may be able to offer more specific advice. Generally, however, if you have concerns over your child's special educational needs, you can apply for a statutory assessment yourself. This is the first step towards getting a statement - if the Local Authority agrees to assess then it will seek advice from professionals involved with your daughter in order to identify what her needs are and what provision may be needed to support her. After the assessment period this could then result in a statement of special educational needs that will indicate what type of school is appropriate. If you visit www.ipsea.org.uk you can download a model letter, which you can adapt to include information about your daughter, which you will then need to send to your Local Authority. It will assist your application if you have supporting documents eg reports from paediatrician/teacher etc. You may actually find it most useful to ring the Ipsea helpline, which is on the website, and an adviser can give you specific advice for your child. It can take a while to get through, but keep trying. Come back to us if you need more. Lizzie
  15. Interestingly, though, the LA wrote to Social Services to get their advice as part of DS2's initial statutory assessment, although we weren't known to social services at that time, so there was nothing they could say. The LA has to seek medical advice from somewhere as part of the statutory assessment; if you have no paediatrician, would they write to the GP? Interesting. Lizzie x
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