NobbyNobbs

its not only course and rough fabrics- i wont touch silk or velour. i think its very hard to be so specific about something as wide as the autistic spectrum i can't follow any conversations if theres a lot of people talking ie my family of 13 round the table at christmas, i just sit in my own merry world with my funny hat on unless someone calls my name and speaks directly to me. its not intentional rudeness, i just can't follow all the words going different ways and have trouble working out who is talking in what conversation

the southampton ASD unit is one of the best in the country i think there are around 4 of these big research units in the country. its linked with the university and is a medical research unit so its got the best and most up to date methods (southampton uni is a big medical uni). i live 15 miles out of hampshire or i'd have been seen there. my ASD uni support worker came from southampton uni and she talked about the unit there, it sounds like a good place. good luck with getting the referral accepted! one point to make sure you raise is that since his assessment/diagnosis will be coming out of area what support will your primary care trust offer if a positive diagnosis is made. if there is no ASD specific service insist he is referred to the closest possible support service which will probably be mental health. it probably wont be possible for anywhere out of area to give him any sustained support. for example my PCT has allocated funding for 6 hours a week from a support worker to help me get out and about, plus 2-weekly meetings with a CBT therapist. the support worker is coming from an ASD charity, the PCT are paying them to provide it, so even if your PCT doesn't have the facility itself, they should pay for it to come from somewhere else!

my father actually got cross with me when i told him i didn't support it, he seemed to think that i should feel sorry for him but he chose to break the law. i get hooked into things - i took a degree in american politics and i've recently watched every episode of the west wing 5 times (154 episodes X 5), but i'm not hacking into government computers to investigate it and then deleting things!

thats the only reason the GP was willing to refer her straight away otherwise it was going to be a wait and see if it happens again thing (one of the few upsides to being in care). we have to keep daily records anyway, so its all noted down and will take a copy of these to the appointment at the hospital so that they can see exactly what went on on those days incase thats of any help. we have a fairly detailed medical history because she is so young, so health visitors and so on have got clear records (a dream situation, we usually have to work blind on these things) but obviously her life is rather more complicated than other childrens and other things have to be considered incase they are behind it as a medical condition or behaviour. we'll plod on, calmed down a bit now it was just rather scary when it didnt stop like normal

thanks for the information, i'd had a look at a few sites but most seemed to just describe the different types of seizure and say most people had certain ones. the doctor finally called back at 5 and said if she hadn't fully recovered by tomorrow we were to take her straight in, but otherwise to carry on as we are and see what happens. she said if we had any more problems they would move up her appointment but she seems okay now. will watch her closely tomorrow and see if she does it again. she fell off the chair this evening and didn't know why she was suddenly flat on the floor, but i had my back turned and shes so clumsy she may well have just slipped off the edge

soft play for us today, and it went better than I could ever imagine. we spent 3!! hours there, and i only had to go on things a couple of times with her before she got the confidence to do it all herself. amazed since she's got no confidence in her physical ability and gives up before she's even had a try. today she was lifting herself up to the next level all on her own and didn't cry/scream/hurt anybody the whole time! we even stayed for an hour of the big kids time after toddler club because she was so good

our 3 yr old has been having seizures recently. 3 big ones where she appeared absent, had rapid jerking in her legs and wet herself, and lots of what we think are smaller seizures where her legs jerk uncontrollably up and down but she appears still aware. she's been referred to the specialist by the doctors, but the appointment isn't for a couple of weeks and we dont know what to do for the best for now. today she had a massive (90 minute!) session of almost constant leg jerking and drifted in and out of awareness. at one point her speech was slurred and she was mumbling nonsense (unlike her). we were in the car for most of it and stopped off at the doctors (closer than A&E), who said they'd call us back later and decide if she needed to see anyone. HOWEVER, she jiggles herself around when she's excited and sometimes seems to be able to control her leg movement (if we ask her to stop it and put our hand on her legs it calms and stops) so i dont know if she was just in a funny mood, or having seizures. if its seizures next time it happens i'll take her to A&E because she was so upset this time, when she came out of it for little bits she was crying, but obviously dont want to waste their time if its just her messing about and she was crying cos she was tired as we'd had a busy morning. does anyone know anything about this, and if it sounds like it could be seizures, and what to do for the best, we know to call an ambulance if she's out of it for more than 3 minutes, but i dont know what to do for the best during these long in and out sessions. can you have multiple types of seizure? how do you know the difference between them and normal jiggling in a car seat? the doctors dont seem to be too fussed (its been an hour now and they haven't called back), but i know some of you have kids with epilepsy and wondered if anyone could give us some information or direct us to where to ask.

exactlyl how many weeks has it been? i'm in a different area but it took a while for me to get a letter confirming the referral, and then even longer before i saw anyone. if your area doesn't have an adult diagnosis centre then it will take even longer. have you tried going back to the GP to ask where you were referred to and if he's heard anything back? it might help as you would have a bit more knowledge of whats going on

i'm still wearing the same set of tshirts i got 10 years ago... i can't replace them now, and they're falling to pieces and the anxiety when i think about having to get different shirts to wear is just rediculous. i shouldn't be so worried about some bits of fabric but i am- so i'm putting it off and may find myself with nothing to wear fairly soon (thats happened with my jeans, i wound up wearing cropped jeans in december because they were the only things left i was willing to wear. i have 7-8 tshirts in blue/dark green, or rather that were originally blue/dark green and are now greyish, and jeans and thats all i wear, i just grab the next shirt in the pile each day and thats all the thinking about what to wear i do!

we had kids round to play. 5 hours with 4 kids instead of 1 to look after whilel their mum worked, but it was easier than having our one on her own. they did dressing up (a sight with the three extras being boys aged 10, 8 and 14 months!!), marble run, ran around the garden like maniacs and generally tired each other out managing to only break 2 toys in the process. we've booked in swimming and soft play sessions with them too.

i think its all down to circumstance. i would happily accept that the woman needed to ride on the path for whatever reason, but it wasn't just her, was a convoy of people who most likely dont all have medical conditions and i've seen it so many times before. they are the same people who park across our drive rather than pay £2 for the car park, leave rubbish, clothes, soiled nappies etc in the path/road rather than take them home or find a bin, dont clean up after their dogs and then complain when they aren't treated as a 'local' by the people who live here. mind you, its a creates a great community spirit with the people who do live here all year so its not all bad . i would never directly confront someone, i just find myself pointing out these little oddities then think i probablyl shouldn't have. the people who complained about the mower come down for a couple of weeks in the summer holidays and keep us awake all night singing, so i think we've sort of agreed an unofficial compromise - they make noise at night, we make noise in the morning.

i think they do trainer socks with days of the week on... multiple packs would need to be bought of course, for safety

this is a 30mph quiet country road and the kids were all on big bikes. fair enough if its a little tot with stablizers or one of those tiny little bikes, but this wasn't so. i'm also pretty sure that cyclists are meant to give priority to pedestrians unless its a designated shared path. this woman rang her bell and told me to get out of the way so she was just rude.

what's a cycle path? we dont have those round here . its all very sedate round here, average age is about 80 and the must-have transport accessory is one of those motorized mobility scooters with the arm rests so that you can get to the pub and back without falling over.

yup, i'm with you on that one. in this instance there was a very wide (5 metre) verge running on the inside of the footpath, we had a pushchair and toddler with us so couldn't walk on it (plus same lovely touristies dont clear up after their dogs). was just all very rediculous. mind you, i dont recon much to the morals of the average from-london tourist... they also leave used nappies in the road outside our house!!

well round two for us... my mother now seems to have it. just hoping the little one doesn't get it because she's not very healthy and as she's only 3 it could go very bad.

got finger paints and giant chalks lined up and waiting for a nice day. minimal clothing and a bowl of soapy water on stand by and we'll be all set for some messy fun soft play and the local park on the cards this week plus some friends coming to play one day... week one of 8 already survived

its a combination of it being mildly entertaining to remember the comment and getting to the mower before my father does and then having to sit there for 2 hours worrying about him having a heart attack while he mows the lawn (or more often mows half and gets bored ... its not that early, i wouldn't do it before 10 and thats practically halfway through the day!

i rarely enjoy having AS but one situation i do like it is when i can say/do something other people would feel bad about. ie - in the supermarket when an entire aisle is blocked by women gossiping, i will loudly say that they are too busy gossiping to move out of the way. usually gets a good glare... but they move we live in a big tourist area (blue flag beach) the other day we were walking along the footpath minding our own business when a woman on a bike dinged her bell, and told us to get out of the way she needed to get past... we were startled so moved over onto the verge and she rode past on the path, trailed by 6 kids all also on bikes!! they weren't little kids and clearly should've been on the road. i said (possibly rather loudly) that it was it was a footpath, not a road, and the woman stopped her bike and stood there glaring at me. fortunately we took a corner before we caught up to her or i'd have had to have a few more words about selfish women who think they can treat everyone else like rubbish just because they're on holiday. we've also been told off for mowing our lawn at 10am on a saturday because people are on holiday and don't want to hear that noise... so i now make a point of mowing the lawn every week during the summer holidays, nice and early. perhaps i'm just a rude person, but i really rather enjoy these few times i have the confidence to stand up for myself. i think my mother finds it pretty funny too, i get a lot of smiles when i've said things i shouldn't. anyone else do this?

does anyone know if recieving DLA classes you as long term disabled for entry to theme parks/zoos. the place we're going has a discount for long term disabled and a carer, but i dont know if i count - currently getting low rate care DLA. it doesn't say anything more on the website. we've been there before, but only as part of a large group so didn't have to think of prices and so on. is it normal to get disabled rates if you have DLA, or do you have to look disabled (wheelchair etc) in which case i wont qualify.

we usually go on all the foster care outings, but for some reason this year they've decided the best place to put everything is 4 hours away - not helpful with a 3 year old! so instead we are going to the library lots, going on walks, visiting family, going to the local soft play place (reasonably cheap at £5 for all of us) using tesco vouchers for the more expensive bits. we've just started having a music and movement session in the mornings - lots of sing-a-long kids songs and jumping around, although at the moment i seem to be doing more singing and jumping than the little one... colouring and playdoh, might get brave and get the paints out (after wrapping everything in sight in plastic to protect against the paint brush thrower) made a mini sand pit in the garden (old baby bath and some play sand - cost a grand total of £3) and of course the toy library - even more fun if the selfish so-and-so who has had the trike for the last 2 months would ever bring it back!

emails also a good option, for the most impressive 'sharing and thinking of you' attach a few piccies of things, the house, garden, places you've been to... or ask for advice on something (even if you dont follow it!)

TBH that all depends on the information given to the NHS direct person, unlike your GP she wouldn't have a letter from A+E, and all your history. she probably advised milk and juice because you said you hadn't been eating and would need to increase your blood sugar. refusing all options she presented for getting the medication would have put her back up with you seeming awkward and saying you wont speak to neighbours just sounds like a bad excuse unless you know the ins and outs of AS, more so if she misheard it as asthma. NHS direct is always going to be a limited service because they dont have enough information to do the job properly (which is why i never call them these days, they always tell me to call an ambulance anyway and i'm certainly not going to do that!)

who're you flying with? BA are deff screening pre-boarding at the moment, virgin are acting on obvious concern signs - coughing, sneezing, high temp etc.

i'm all for shortening the summer holidays (and was when i was in school as well!), so to suggest adding another month on the end... urrrgh. we're doing okay so far, have discovered that little 'un is actually better behaved without the influence of nursery