ameretto

Thanks Karen. Might have to resort to starting our own school, lol

ANyone at all??

I'm just on my way out, so don't have time to post properly; but wanted to say that what you have written makes perfect sense and i'm sure a lot of people here will have experienced something similar. If you feel counselling or a diagnostic assessment would help you in any way, then go for it.

Hi, My DS is now nine and i very much recognise him in what you are describing about your own son. Ds's range of 'acceptable foods' has grown ever so slowly but steadily over the past 3 years. What worked for me was to introduce new things in very very small stages; for example a slightly different type of chicken nugget; for years only dinosaur shaped ones were acceptable for some reason; the day he ate jungle animal shaped nuggets i remember sneaking out of the dining room to dance round the kitchen (sad cow, i know!). Also cutting his raw carrots into different shapes (discs not sticks, i mean, not intricate flower shaped creations!), just to introduce the idea that things did not always have to be EXACTLY the same. I have also spent more time than i care to remember putting for example Sainsbury's potato waffles into a birds eye packet (secretly of course) and other things along those lines- partly to find out what was an actual taste/texture issue and what was 'habit' (can't think of a better word) PLUS partly to stop him becoming obsessed with / stuck on the exact taste of certain brands. Also; he went through a stage of being obsessively interested in all things 'space' so i remember a long but painfully subtle campaign i dreamt up to convince him that chicken burgers were just 'planet-shaped dinosaur chicken nuggets', starting with just pointing them out casually in the supermarket, but not even attempting to buy them, etc etc (took a good 3/4 months until we got to the point where he actually ate one). I can't even remember all the similar schemes i've dreamt up over the years- and i think you definitely need a sense of humour to do it. Maybe 9 out of 10 of my little ruses about food have not worked, but the other one in every ten HAVE, so to my mind it's been worth it, because, so slowly its hardly noticeable, his food intake has widened. I've just read this all back and realise it sounds completely demented, but i'm sure some of you will understand/ recognise. The only other thing i would say is 'try not worry' which might be hard to do, but gets easier once you realise they are not making themselves ill. As far as the weightloss goes; get him monitored regularly by GP or practice nurse; it might be that it is just a growth spurt that is causing his current 'weightloss' / skinniness (my DS went through a similar thing aged 5 and has been tall and lanky but healthy ever since) and they will be able to reassure you. If he is actually malnourished he will stop growing taller- so it is worth keeping an eye on his height too- if only for reassurance. GOOD LUCK!!

It's a good starting point; it's not complete yet, but a couple on there i'll follow up. Anyone else who can give me some pointers?

Thanks, David, i'll have a look.

Hi all, Wonder if anyone can advise me? or just share their experiences/knowledge? I am looking to return to London in the next couple of years for career reasons, but obviously with as ASD child it is important i get it right in terms of schools. DS will be due to transfer to secondary school in 2009 and that would be a good time to make the move, so thought i'd do some forward planning and research. He is very academically able but will need significant support with organisation, somewhere to hide from playground chaos, an understanding of his sensory issues etc. So what we will need is a school that can cater to both his academic potential and his ASD. Mainstream with an ASD unit/programme would be ideal. Perhaps even a grammar/selective school? Problem is i'm having trouble finding this kind of info without trawling through reams of junk on ofsted/ london borough websites. I've already been looking for three weeks and haven't discovered much. I'm prepared to consider any area in London, if i can only find the right school. I've heard Haberdashers Askes's Hatcham college in Lewisham has ASD places but know nothing more than that (and the school haven't got back to me which isn't encouraging i think). But all suggestions/ info gratefully received. By all means PM me if there are legal/discretion issues. Thanks in advance!! Natasha

I have to agree that NAS are very good. Deep breaths, think twice before each step; it's a game of chess and you mustn't let them think you are ruffled by any of it. I must say i ###### hate these types though. Good Luck Ame

I educate my son at home and specifically checked this issue. You can join or remain on any waiting list you choose (which is what i will do when secondary looms). It may also be worth starting the process for a statement which you can initiate yourself whilst home educating (or indeed whilst he is still in school). Ame

Sounds like fighting talk to me - do you know if any professionals that were involved in the statutory assessment made any recommendations that would support your preference? Ame

P.S. It is the mtcustomblankets (in MotherEves links above) that i prefer so far but havent had a price yet, have a look and see what you think. I had a direct web address for that lady if i find it, i'll post it.

Lynne, Ok, thanks- i will add your name to the list of "interesteds" and come back and let you know a price once i have had enough quotes and shipping estimates back to cost it. I'm aiming for about ?80 per blanket, certainly less than 100, but only for high quality, washable quilts (inc. the shipping). There are five of us interested at the mo; and i reckon we need 10 minimum to secure the discount, so if you know anyone else who could be interested, by all means ask them. I will supply my full off-line contact details to anyone who wants to go ahead, won't expect the cash upfront and can arrange to be paid through Paypal if preferred. The other thing to bear in mind is they will be made to order, and shipped by sea rather than air to keep costs down, so may take 4-6 weeks from the order date to arrive. If anyone else is interested and happy with these arrangements please either post or PM me. (I will get a weighted quilt for my ds if it kills me ) Wish me luck, Ameretto

They are basically thin duvets, incorporating a great many individual pockets, each of which contains beans or similar to provide a very weighty blanket like a hundred or so small bean bags (the type you throw) sewn together. The pockets are supposed to mean the weighting can't shift at all and remains even. There has been research in the USA that 'proves' they are of great help to ASD dxed children in feeling calm, secure, sleeping etc. I have looked at the possibility of making myself but was put off by the fiddliness and need for such high quality to withstand washing and tumbledrying. I will investigate those links though as maybe there's an easy way? Offer still stands, though, if anyone is interested in a bulk import. Ame

Hi all, After reading a lot of positive stuff about weighted blankets about nine months ago, i have been searching ever since to find a seller in the UK, with no luck. I feel pretty optimistic that my ds would respond well to one of these from experience of other sensory issues and some very convincing American research. They are available in the USA, but as they normally weigh between 7 and 14 pounds, shipping is very expensive. In desperation, a friend and i are trying to negotiate a bulk discount from a US producer and wondered whether anyone would be interested in making an order with us; the more we order, the cheaper they will be! Alternatively, if anyone has experience of using weighted blankets or knows of a UK supplier, could they please let me know? Any information gratefully received! Cheers Ame

CeeCee, I have no idea about what may have caused the difference in outcomes, but i am pleased that you and your daughter have been so lucky in terms of recovery. I will certainly try to find the magazine and read the article. The problem, i think, with rare conditions is that, because of their rarity, they get less publicity and so it is harder for parents to contact others in similar situations. It also means that the rest of us are uninformed and have poor awareness of these conditions. It might have been the rarity of the condition that persuaded the magazine to publish the story? Maybe there could be an opportunity for you to raise awareness by approaching magazines with your own story? Of course that entirely depends on how you feel about privacy. Natasha

Steve, This is fantastic. Great timing too- i needed a bl**dy good laugh. Made me think i really should get around to being assessed, though. The NTs look far more deviant and unfathomable than the ASs from where i'm standing. Have we met this mysterious 41 yr old, newly dx-ed Aspie? Or are all resemblances to real individuals purely coincidental? Thanks again, Natasha

Oreo, I'm glad i could help I like reading too. If i'm worried, the first thing i do is read everything i can find about the thing that is worrying me. This always helps me not to worry so much. I hope it helps you too. Good Luck Natasha

I hope it goes well for you both, i'm sure it will. Natasha

DAS and Oreo, I also found this on the NAS website (full link at bottom of page); What will the assessment be like? A social worker will visit you at home to carry out an assessment. They will complete some forms about how much care you need each day. They need to take into account a number of different factors when completing the assessment including: Breadth of needs The social worker should look at the impact of your needs on your day-to-day life, not at the needs alone. For example, if you have high levels of anxiety you may need someone to be with you to calm you down when you get agitated. You may also need help with going out to the shops or to work because these activities make you anxious. The assessment should be comprehensive and should include consideration of the following needs: personal/social care; health; accommodation; finance; education/employment/leisure; transport/access and any communication, psychological or other needs associated with the ASD you have. Preferences The social worker should try and find out what your likes and dislikes are. If you hate noise it would not be appropriate for the social worker to suggest you go to a day centre near a busy main road. If you find it hard to express your likes and dislikes then you may want a friend or advocate to be with you during the assessment. The social worker should also speak to your parents or carers to find out about your likes and dislikes. To find out more about advocates go to question 9. Future needs Even if you are coping OK at the moment the social worker needs to consider what needs you may have in the future. In the future the amount of care you need may change or the people who are caring for you at the moment may not be able to. Because your needs may well change the SSD should arrange a review of the care plan and the services you are being offered at least once a year. SSDs all carry out community care assessments slightly differently. This means that we cannot say for sure what questions you will be asked or how long it will take. If you have health problems or do not have suitable housing, your social worker should let the relevant professionals know and they should also assess your needs. In some circumstances they may want to work with your GP or seek an assessment of your psychiatric or psychological needs. 6. What services will I get? If you want to carry on living where you do at the moment If you currently live at home with your family or by yourself and are happy where you are then the SSD may offer home-based services. The range of home based services that a local authority can provide are outlined in the Chronically Sick and Disabled Persons Act 1970. These services can be made available to both children and adults and include the provision of: a. practical assistance in the home This might mean having someone come round to help with cleaning or cooking, or they could help you with paperwork such as bills and letters. If you have physical needs practical assistance could mean helping you to wash, dress or get out and about. b. radio, TV, library etc This could include the purchase of a personal computer or a hi-fi system. c. lectures, games outings and other recreational/educational facilities. Recreational/educational facilities include places in day centres. These services must be provided outside the home. d. assistance in travelling to community-based care services The local authority is entitled to charge for transport provision. However, they must ignore the mobility component of Disability Living Allowance (DLA) (if you get it) when making their assessment. e. home adaptations f. holidays g. meals (at home or elsewhere) h. a telephone http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=296&a=3273

Oreo, This is a link to some information about Care assessments; http://www.direct.gov.uk/DisabledPeople/He...0436&chk=ocTdkG A care assessment is what the social worker will do to try to help you. Perhaps you and DAS could look at the information together? Natasha

Well done, Bov, Just goes to show that doggedness pays, no matter how many obstacles are put in your way. Hope your son will be happy. Natasha

Lindy-lou, I have been in a very similar situation to yours a couple of years ago. I think the worst thing you can do with a resistant or defensive person in any situation is to push too hard. However, your instincts are well worth listening to. I understand the concern about 'seeing ASDs everywhere' but you haven't raised the issue for your own entertainment; i am sure you have thought it through thoroughly before speaking and if you think you can see Autistic traits, then it is more than possible that they are there. As far as i am concerned, the parent of an ASD child ( i mean you!) is as good an 'expert' on ASDs as any professional, purely because of the nature of the spectrum. I'm afraid that all i could honestly reccommend is a softly softly approach; you are clearly a conscientious and much-needed friend. If the issues you can see so clearly remain (and they will if they are ASD-related) then the mother will be forced to recognise/address them in time, and then she will need her friends, especially the intelligent, clued-up ones such as yourself. Natasha

Link isn't working, Steve

Bullet; My son has a diagnosis of High Functioning ASD and your description of your son reminded me forcefully of his behaviour as a toddler. So i think the referral route you are on is certainly worth pursuing although of course your son is still young and there may be alternative explanations. How is your husband reacting to the situation and referal? I have noticed that often fathers resist any suggestion that their child may not be 'perfect' and this can cause tensions in relationships, but there is no harm in an assessment and i think your instincts are sound. About the 'Norfolk Broads' thing; i'm quite new here too and it confused me at first. It is a measure of how much you post in this forum, not a reference to geographical location; if you hang around here and chat long enough you will become 'Snowdon' and so on. Good luck, Natasha

Great Idea! Here's ours; 8 yr old Mainstream school. In school (just about) No Statement and two years after dx not even an IEP School taking funding for our child via the SEN register but reluctant to provide any adjustments or even accept that anxieties and difficulties are due to ASD. Had involvement with SALT, dietician, general paed consultant (for stomach probs) school SENCO and community paed psych consultant; dietician and SALT were v. good, psych consultant (ASD specialist) a complete star, others useless. Seriously considering elective Home ED at the moment Child extremely depressed, punches self and makes suicidal remarks. No medication No successful outcome yet Several years of trying to get appropriate support Family life completely revolves around child's anxieties, distress which have worsened considerably due to school's complete failure to provide suitable support. Child usually reluctant to going out at all and very anxious/ depressed. Location - South East England