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