westie

Thanks all I will print your replies and look through them - there is a lot to think about. I have a lot of stuff to ask at the meeting tomorrow (there are some other issues as well recently, to be expected with such a big move) I appreciate your advice, and am going to have a look at the program you posted a link to sally. I will let you know how the meeting goes, and what the school think.

Just a quick question My son has just moved into Y7 (mainstream secondary has a statement)its his annual review tomorrow. They give you a breakdown by subject of his current attainment levels, and his expected grades at the end of the year. He is behind at level 3a in english and maths. In terms of english, a comment from the schools annual review report says that he struggles to read "beyond the literal" and his punctuation and sentence structure is behind. His handwriting is also difficult to read even for him. He writes capital letters at random, reverses letters sometimes (J is a common one, even though it is in his name) and he also mixes up left and right. He use an alphasmart for some lessons and the TA must write things for him sometimes (there is work in his books that is def. not written down by him!). He is also this week starting extra english lessons to bring him up to level 4 by end of year. In previous tests by the learning support service and during his assessments have given a lower than expected result (esp. reading comprehension) and he has always struggled with writing but I wonder if he has a specific learning difficulty? Especially I am worried about his maths results, he is currently at level 3a and this is the "aspirational level" he is expected to reach at the end of the year as well.... He has been at this level since 2008, so over two years It was commented on in last years annual review that he was still at same level as previous year in maths. Again could this be a specific learning difficulty and should I ask for some sort of assessment? He is doing well in science, level 4a and should get to level 5a! In some other subject areas he is average (level 3/4), and in art and french he is at level 2a (he hasnt done much french in primary, so this is to be expected and his poor motor skills/ pencil control mean I am not surprised about the art level). His gross motor skills are below average according to the school report for his annual review. What do others think, am I worrying about nothing or do you think I should push for assessment/more help for him (particularly in relation to maths?) thanks in advance! p.s. heading should say for past 2yrs sorry for error it will not let me edit now

Hi, sorry you havent found a contact yet. have sent you a message (whether it will be of any use is another matter). Good luck with your search anyway I hope that you manage to find a way to get your referral for assessment X

Would it be worth ringing/ emailing the centre you have found, and asking them some questions about the referral process? Maybe they will be able to tell you the name of someone in your area who has previously referred someone to them? Of course you may not feel comfortable with this and if so not really an option for you. I hope you find out a name of someone to give to your GP, so you can get things moving. Take care

good luck with the job application! X

http://www.liberator.co.uk/media/support/FundingPack.pdf Hi came across this whilst researching for some homework I have to do and it looks really useful and informative guide to helping you get funding for communication devices at different stages (i.e. school, further education, adult life etc) with useful tips and pointers to other organisations who may be able to help you. It is not specific to autism or Asperger syndrome, but maybe someone will find it useful!

Very sad to read your doctors response. I wonder if it is worth contacting NAS, the link below is I think the contact for your area and they may be able to give you a better picture regarding help and services in your area and how you can access this. http://www.autism.org.uk/en-gb/our-services/adult-and-community-services/adult-and-community-services-by-area/lancashire-service/contact-lancashire-service.aspx also having no idea about your daughters problems (I am assuming you are suspecting some kind of Autism spectrum condition as well?) I think it is incorrect to say that nothing can be done until she starts school. If her problems are apparent now then it may be better to start the assessment process early so thinks can be put into place before she starts school. The assessment process for both my children was started before the age of 3 and I feel an early diagnosis has been of benefit. Is there another doctor in the practice who you could speak to? Take care

Hi J's mum, Just to clarify, its not either of my children, I am asking on behalf of someone else. Their child is almost 3 and has been head banging from an early age and now wears a special helmet due to injuries received from head banging. now moved to sitting up against things and banging back/ spine as well/ instead. The child has no/ little speech as yet, but as professionals are involved things will hopefully improve. The parents are quite worried about whether the child will damage their spine by banging it so hard and so frequently. The feeling comment is probably something like why the child does this, it must provide some sort of comfort or stimulation to the child. Maybe some sort of massage could be worth looking into though, I will mention it. Thanks again some useful info to think about. D

thanks for this, have never seen anything like this, I have lots of books hanging around and I love reading so think I am going to look into it further! oh and good evening everyone! D

There is a programme available now, relating to this conference, see link: http://www.autism.org.uk/news-and-events/nas-conferences/our-forthcoming-conferences/pathological-demand-avoidance-conference.aspx

Thanks Karen, yr reply is much appreciated

nice idea!

Hi does anyones child with ASD bang their back/ spine against hard surfaces instead of their head? and if so what were you advised (if anything) about how to reduce this behaviour or what damage it may potentially cause to the spine/ back if continuing. This is not soft impact btw and quite frequent. Any ideas about ways to reduce damage (padded clothing or other solution?) padding surfaces is being looked into but obviously you cannot pad every surface so any suggestions appreciated. Have tried searching but no luck - most are coming up with head banging only. Thanks

Thanks for the reply. much appreciated.

hmm is it law, or just good practice, that you should get reports two weeks before, as my son has been statemented all his school life (he is now in secondary school) and I have never had any reports in advance??.....sorry to hijack your post Lizzie, just havent heard this before and its my sons review at the end of Nov. Thanks

check out these two they may be worth looking into as they are fairly close: http://www.the-malthouse.com/index.htm http://www.bedandbreakfast-accommodation.com/uk/staffordshire/bed_and_breakfast/alton_towers/wisteria_cottage.htm

I am sure there was a small hotel/ b and b fairly close to the park, not sure what it was called though. If I find out I will post the name of it on here for you. its got to be cheaper than staying at the hotels (we stopped in a campsite up the road, taking our tent which made it reasonable price however this was early sept. not sure weather is suitable now)

we took our two kids who both have autistic spectrum conditions. We had the tickets given to us by a charity called merlins magic wand but think if you took DLA letters you would get discounted tickets. We took the DLA letters for both children and went to guest services, I said to lady that both my children had autism and my friend had fetched her child and shown them DLA letters to get wrist bands to avoid the queues. She glanced at the letters, then gave us wristbands (a certain colour for the person with disability, and a different colour for the carers - one person with disability can have upto 4 carers with wristbands however all 4 cannot go on ride at once with person using bands to get fast access) they also gave us a leaflet explaining about park access and facilities for disabled people. It told you which rides were suitable, where to go to get on without queueing. It saved us SO MUCH STRESS. Where queues were short we just stayed in normal queue, at other times we used the disabled access points. Sometimes there was a short wait, if there were other disabled people in front, they sometimes asked us to wait till next couple of turns, I felt this was acceptable as it was still a much shorter time - some of the queues were an hour and a half. The staff were all very friendly and helpful. If a disabled person has a wristband then I think they have to go on with a carer generally, they cant ride on their own but you may want to confirm this... My friend had taken her child with ASD to Alton Towers for first time before we went, she took their DLA letter and got reduced price tickets, at guest services they logged his details onto a computer and then said if she came again then they would not have to fetch letter but just give their name and they could pull up details on computer and then they would get wristbands. AND if you buy one of those MERLIN annual passes (that let you into alton towers, thorpe park, madame tussards, chessington world of adventures, legoland, warwick castle and other tussard group attractions I cant think of name for) for the person with the disability then they give one to a carer for FREE! So she got one for her child and got one free. these are not cheap but if you can make use of them - more than a couple of visits you have your money back - then this is a great offer really.... She was also very impressed! The park is quite big, there can be a lot of walking but there are cable cars running to some of the park areas, and you can take it slow. Also the leaflet they give you warns about whether some rides are unsuitable for certain physical disabilities but certainly we did not get stopped and told that they could not go on any ride (my eldest got scared and changed his mind himself on one of the rides - the pirate ship) but he was not told he was not allowed on it. He went on oblivion, rita queen of speed, 13 (the new rollercoaster ride)and nemesis so quite why he was scared of the pirate ship I am not sure :-) with the wristbands you will save quite a bit of time so you can get on more rides, even allowing for walking time. Two day tickets can be a bargain but then you will have to find accommodation - two days would give you plenty of time to get around the whole park though.. Enjoy your visit if you decide to go.

if you can access the local library I would recomments having a look to see if they have/ can order his book. Someone sponsored him to go round the world and talk to experts in many countries and he has as a result put together this book which looks at the very early history, how things have progressed (in different countries) pioneering treatment in the past and current trends. I have enjoyed what I have read so far although is is far from being a novel, and there is no way with one read that I will remember all the prominent names, though I do recognise some from papers and information I have read before.

Spotted this on a google search, thought it looked like POSSIBLY an interesting book so decided rather than invest almost 30 quid I could not afford I would see if local library had a copy, or could loan a copy from the British library... anyway they bought a copy and phoned me and I am now about half way through it and finding it very interesting reading. Its not "easy reading style" but is very interesting, mentioning a lot of famous names in the autism world and I have actually found out a lot about the first people to work with, or study children with autism, or to develop programs or methods relating to helping people with autism (TEACCH AND LOVAAS). There are a lot of conflicting theories regarding the causes- some relating to different countries, and the languages that papers relating to autism studies have been translated into.... the refrigerator mother theory still persists even now in some countries because Bruno Bettelheims book "the empty fortress" was the first/ only book about autism that had been translated into their language....

soundalike = yes lookalike = no! like both the songs (is that a good thing?) oh and (3rd edit) re weebles. missed the ad but think its cool if they are back!

I gave up my career a couple of years ago to care for my sons (I had worked for 15yrs previous to this, from leaving school). I claimed carers allowance after I got DLA for my youngest son, who had just been diagnosed. My childcare had fell through, and because of their needs was unable to find a better solution to the problem than giving up my job. Claiming carers allowance meant I was able to also claim on the PPI insurance thing to get my mortgage paid for a year. This was a relief as I did not have to worry about mortgage/ insurance etc for a year afterwards, and this was my main reason for claiming it at first, but it has helped us a lot since then! I also agree with Nicky, because of my childrens needs I am restricted as to what hours/ times I can work (as you say you are), and indeed I have paid into the system for a long time, as has my husband. I also do some voluntary work while the kids are at school. This gives me something worthwhile to do and I feel contributes back to society whilst also allowing me the flexibility to be at home in the holidays, or if they are ill etc. This has also been of benefit as it has kept my skills up to date and I am hoping at some point in the future to get a part time, term time role (and hope the kids never get ill!)and not be claiming any more. How much would it cost for a paid worker to carry out all the duties you/ we do? Much more than £53 a week I suspect....It the same thing as caring for an adult who is ill or has a disability (I also care for my mum). whether they are your child/ mum/ dad/ spouse/ other family member you are doing such a lot that would cost a fortune, should you go to work rather than look after them. I think that carers play a very important role in society. Carer's allowance counts as taxable income, so it will need to be declared to the tax credits as an income, and (not being sure of your circumstances, and may be useful to someone else too) if you have a working partner who is of an lower income level meaning you can get working tax credit, and therefore things like free courses/ prescriptions etc then this extra bit of income may affect that and the loss of tax credit and benefits like prescriptions, meals etc may be more than the carers allowance. I would personally go to citizens advice or credit union and get some advice on how this may affect other income if you think you may fall into this category. Hope this helps!

Also may be worth contacting a local support group to see if there are siblings groups running in the area, some groups do offer support and groups for siblings of ASD, and the autism communication team ran some residential activities in the summer where sibs could do lots of fun stuff and get chance to discuss their feelings about their sibling with autism in an accepting and understanding environment. I think this would be of great benefit as its not always possible to open up to a family member as many are scared of hurting feelings etc. There may also be groups for your child with ASD as well, so they both benefit. the National Autistic Society also run Help 2 courses about supporting siblings (for you to attend), there may be one in your area see the link below: http://www.autism.org.uk/directory/search-results/pg=1/resources/8665.aspx Take care X

Sutherland house/NORSACA have published some booklet for brothers and sisters, one for autism, and one for able autism (asperger syndrome). I think these are pretty good at explaining some of the difficulties in a fairly simple way. They are about £3 plus post and packaging I think. See the following link for publications list order form (the siblings booklets are listed on page 2) http://www.norsaca.org.uk/docs/OrderForm-Sept09.pdf If you have a local support group then these may allow you to loan books that will help explain to a sibling, or try your local library. The charity cerebra also do a postal lending library, You have to register with them and then they send you a list of books, you contact them to choose one and they post to you with a stamped addressed envelope for you to return them. Not sure if they have titles relating to explaining to siblings but its worth a look. They also loan sensory toys. http://www.cerebra.org.uk/parent_support/Library/

Sorry for other long post, I would say from info I have read that you write the letter requesting access to the records, they have 15 days to reply and then you can go in and view the records and see which ones you would like copies of. If they think that showing you certain records will cause harm to your child then they can refuse to let you see them but they have to explain why.