NobbyNobbs

after i got my diagnosis i was told by 4 different people that they had always thought i had AS, but didn't like to mention it incase i got offended! i think people should have a responsibility to help. oh and these people were all ones who had a lot of experience working with people with AS

i know all about the wonders of a late diagnosis. i was also diagnosed at 22 after a friend with AS insisted that i had it and in the end i decided to pursue it. i was always just told i was depressed, anti-social, shy, any excuse for either doing nothing at all or to put me onto drugs to mask the problems. i suspect there's a time-bomb waiting when they start to adress the issue of passive AS girls.

we had to rip up the carpet in the downstairs loo because it got so disgusting when we had a 6 year old boy staying with us. now we have lino tiles and one of those funny toilet mat thingies which goes in the wash once a week to keep the smell awat

another problem might be he's not getting there soon enough. perhaps have a clock set up to tell him when to go and try to the toilet? we had to do this with our non-toilet trained 8 year old girl. might be easier for him to concentrate on what he needs to do if he's not hopping desperate first she used to have to go every hour, then every two, then three... gradually it worked (she also peed everywhere before) otherwise fisher price or someone like do a portable urinal thing that might be a stop-gap while hes getting better control over his aim. i think i might have seen it when in america but i'm sure someone will ship it over here. ** i just looked it up and it flushes water so i doesn't smell and mounts on the wall... how great is that?! ***

i dont think my parents would appreciate me trying that one! they check on me through the night to make sure i'm not up to no good. (plus we have young kids in the house who wander into my room randomly) and i figure with the toothpaste anything is better than nothing. i tried all kinds of adult ones, for a while i was okay with an apple and mint one, but then decided it tasted horrible. Shona - i also recommend searching down the side of the bed, under it and in the bottom of wardrobes and drawers for underwear (i was a hider when i was little). i absolutely hated putting my underwear in the washing basket because then people would see it. would your daughter be able to do a wash of her own, even if it only had underwear in it? (wasteful but soooo much better than the smell!) does your daughter like swimming? another common AS thing is sensitivity to wetness, when i'm having a bad day i do a strip-wash instead of shower because then i only have to deal with one part of me being wet at a time. you could suggest that one if it might be a possibility.

i chose green for mine... only to be kicked out into a smaller pink one (with frilly pink curtains to match :shock: ) i love the green but hate the type of paint used in both rooms. its that light reflecting stuff because we thought it would help with small rooms. it gets dirty very quicly. if i accidentally knock a book against it while reading it leaves a mark and then it bugs me like mad, but washing doesn't help because then the rest looks messy! i like blue but find it makes me spend too long looking at the walls and has to be the right shade or i get really cross, wheras the green is nice, but i barely notice it.

how about thinking about some changes that might help make it more comfortable for herto be a bit cleaner? i hate brushing my teeth because the toothpaste tastes too strong, its taken me years of hunting to find one that i'm okay with (store brand kids mint stripe stuff). same with shower stuff, if it smells too strong i wont touch it. perhaps have a look at what's about the house and see if there are particular themes - i get given a gift set of magnolia bath stuff every year... i hate the smell! as for clothes, i wear my clothes, then i sleep in the same tshirt but have different bottoms, then everything goes into the wash (or the big pile on my floor) in the morning. i can't stand sleeping in the pyjama tops because they all feel wrong but obviously need to wear something! clothes for me at least seem to be a real routine thing. when i was younger i was bad at changing them round to be washed but now i have my set route to deal with them and all hell breaks loose if i can't do it, but at least i smell better and i absolutely could not stand using deodorant when i was younger (sadly very young). the roll-ons felt like someone putting honey under my arms. the spray ones felt fine when i finally got my hands on one so that worked out, but again i had to watch the smells a bit. might not be true for others but while i feel annoyed at the time for being nagged i also understand its the only way to learn to do things properly when you have the attention span and avoidance rate i do.

i attended a workpath appointment today and after the advisor there went through my needs and so on she produced a list of benefits i might be on and proceeded to go nuts when i explained what was going on with the DLA. she says theyre just messing with me and i have to keep arguing and eventually they'll give in, so monday i'll phone the number to check they're processing the appeal and tell them i'll be sending a letter querying what exactly about the GP letter they're using as evidence as i dont see anything in it. i'm also writing to the PCT asking for them to tell me how to register with an alternative doctors surgery since we live in the catchment area for only one so noone else will take me. i'd complain to the surgery itself but the practice manager is the wife of one of the doctors so you can imagine how far that will go! my sisters medical notes, address and phone number were released to a pharmacist by the doctor husband after the pharmacist managed to stab herself with an epi-pen my sister had given in and for some reason became convinced she'd caught HIV and nothing was done about it when my sister complained! so much arguing just to be treated in a civil manner by someone you're meant to trust with your life...

so far - refused first time on grounds of an out of date report for a benefit claim, plus statement from a doctor not my GP. asked for it to be looked at again removing report and doctor letter refused second time, out of date report removed, along with 18 of the reasons why i wasn't eligible, GP report still there. ask for it to be looked at again, plus request a copy of the GP report so i can point out how wrong it must be since the doctor didn't have my notes plus full written statement of reaasons finally get copy of GPs report, no statement of reasons. GP report confirms i have the conditions i listed on my claim, but doesn't say anything else. nothing in there would indicate that what i had said about my needs was wrong. in sections asking for information on how the conditions affect me the doctor simply wrote 'nothing' twice and then said i had difficulty breathing when asthma plays up. all but two of the reasons still listed are in contradiction to my medical history (no risk of self harm (its in my notes!), no need for support when outside the house (i have agorophobia, so panic attacks, irrational behaviour, and ankle injury which means i fall a lot and can't walk on uneven ground without injury) etc. i've stated this in the letter... but this is the third time i've said it so i dont expect it to be listened to! so do i write another letter (i already had to send in my appeal form because they took so long to find the gp report the dealine would have been passed)? it isn't possible for the conditions i have to not affect me... if they didn't i wouldn't have them and noones contesting that so shouldn't it go hand in hand that they affect me?! or should i do what my parents say and just accept that i'm not going to get anywhere and give up? i really thought i had enough to claim and if i didn't i'd be fine with that, but they dont seem to be making any sense and their decision doesn't seem to be based on any fact. they just seem to be saying no and ignoring things so they can have a reason. my mom keeps saying that i'm not disabled so why would i get it, but i thought it was based on the amount of care you needed above the normal for your age rather than being in a wheelchair or the like? maybe i've got that wrong too

i tried that one, my brand new 'specialist in mental health' GP said she didn't care about it and it wasn't any of her business what my life was like (but she was sure if i just went out and got some friends i'd be so very normal and happy) ive had one letter saying they hadn't decided yet, and now two saying no to everything. my parents are now begging me to stop trying to get it for a while but i dont want to let them win. hopefully yours will be nice and straight forward

the other thing is a warm bath will relax the muscles so that he will poo if he has trouble controlling this anyway. we had a girl who wouldn't acknowledge she had wet/soiled (age 7) and hid her dirty clothes after walking round in them all day denying she'd wet. we would literally have to smell or look at her underwear to see and even then she would deny it. perhaps try giving him set toilet time - 10 mintues where he HAS to stay on the toilet every day. with nothing better to do he might find himself going then and get into the habit. books and small toys that can be disinfected are handy for this to keep him entertained, but nothing too big or he'll get distracted from the task in-hand. if he's resisting being cleaned up by you it would suggest he's embarassed by it and the throwing of the poo is an attempt to make it disappear. have you tried a flannel or baby wipes he can try to use himself? you can always wash hands afterwards if its messy at first - i find huggies wipes are very wet and thick which can be handy.

i said that i wished they made GPs go on the course and she said they were all offered training, but most just refused. i got loads of good advice on how to access the limited services for adults and got some questions answered that had been bugging me. on top of that my mother went too so now she knows a bit more about how things are for me. the course leader focused on understanding behaviours rather than forcing change and confrontation on people with ASDs and how to make changes with minimal stress and anxiety we are both agreed now that every foster carer should be forced to go on the course so that kids with autistic traits as well as autism can be handled in the right way. that said there were a couple of people on the course who just could not understand it at all and came out the end of the course having not taken anything in... still saying they'd shut an autistic child in a room if they broke something because they were probably doing it on purpose one of the things she said she would use the video for is for courses in mainstream schools to help staff understand how simple changes can make so much difference, and just how horrible it can be for an autistic person in the system as it stands. there were several people on the course who had children with ASDs who clearly were completely overwhelmed by the fact that someone was explaining it so they could feel what the child was, and then know how to actually HELP the child rather than just cope with the problems.

i just got in from attending the social services autism training course for people working with looked after children. normally i hate these courses but i have to say this one was amazing. the woman leading the course really knew her stuff and explained things in a really good way so i've signed up for the level two one which should go into more depth. it was all about the sensory overload point being where a jug overflows and how its alreadyhigher for people with ASD so it reaches overload far faster and how to positively react to the behaviours that this triggers and even better she was so impressed with how i explained my sensory difficulties she wants to film me answering questions to show at conferences and other courses!

on the 14th i'm going on the foster care training course for autism. i'll try and relay what things get taught on here. i hope it'll be of interest to some of you to know what is taught in the system (and its probably not a lot) as this might help you when seeking special provision away from foster care. there are two courses, i'll be doing level 1 this time, and then level 2 in january, both one day courses. (ive been trying to convince my mother that she wants to take on foster kids with autism since my diagnosis because they seem to have trouble finding placements and she can already deal with me!)

yup. plus working with stupid people is a right pain! you get grouped up against your choice and half of the people did NVQs in tourism and childcare and who knows what and haven't got a clue what way up a book goes. (no offence to NVQ people but my mother is currently doing one and my goodness, no brain needed for that one). then they just sit around going 'duhh' until you tell them what to do. i'm all for ability streaming. some people are very very good at being bricklayers and hairdressers, and some people are very good at being scientists and doctors. not everyone needs a degree. at my 6th form if you hadn't applied to universities you got constantly pestered by the staff to do so. in the end only two people got away with not applying and they both went into the Army/Navy! i can't get the job i want because in order to do it i have to have an NVQ. there isn't anything higher, its NVQ or no job and i think my brain would fall out of my ears if i had to do my mothers work, so no job for me being clever now excludes you from certain work, because you HAVE to go to uni instead.

ahh, i loved brownies. now i help out at cubs. they're great thing if you can get your kids to stick with them because they learn so much you couldn't show them. i can still remember how to make a pin cushion out of a coffee jar lid, some fabric and some cotton wool! i can't believe these clubs dont do a second hand uniform system these days. we used to hand over anything we'd grown out of that was presentable, and in return we'd get what we needed in the next size up. i think i only bought one pair of those skirt short things and a jumper in all the time i was there. we got given a full set of clothes (trousers, shorts, dress, apron, shirts, jumpers...) to borrow for camp because they had so much stuff! suppose its a case of disposable culture being too strong these days

i know in the case of my uni (Swansea) the only way they can build more facilities is to literally pick the uni up and move it somewhere else! they looked into it but picked to move it to llanelli and noone who doesn't know welsh can say that right! needless to say that idea seems to have dropped off the table. it seems that rather than spend money on better facilites they just drop the number of classes in certain departments. one of my biggest issues with the uk system is i pay the same fees as someone on the law course, but they get 12-14 hours of class a week, and i only get 6. the only reason i can see is that law have their own facilities and we dont as for fire safety, they would say they had unexpected turnout for that class if inspected. i know of one lecturer in my departments who refuses to teach any 2 -> final year classes with more than 15 students in, which is great if you can get on her classes, but a nightmare at the same time because it puts more pressure on the other classes.

its a wonderful(!) result of a certain politicians goal to send everyone to university. my department had 5 lecturers, 4 academic years for the course and an annual intake of around 150-200. 6 modules per academic year. for first year there were no options so there were 200 people in each module. one tutorial per semester with 30-50 in each! no wonder so many people drop out. the other three years you choose 6 out of 8 courses, but the drop out rate is so high class size does go down thankfully!

ive pm'd you about a company who make if from any fabric you want with any design

ahh, i remember that situation fondly. our department was based in one of those two room temporary huts so we didn't have tutorial rooms or lecture space so we were dumped wherever was free... cue a first come first seated situation. if you didn't get to class 15 minutes early you didin't get a seat, if you didn't get there 5 minutes early there wasn't even space to sit on a step! then again i was used to it. i had a GCSE class with 46 kids in and only table space for 36 kids (and that was literally as many seats as they could cram in the room, we had to shuffle in based on where our seat was and then couldn't get up again!) if everyone was there that day some people had to sit on chairs in the doorway and at the teachers desk. the good news for you SG is that by the time you're a month into term only 15 people will be showing up again. its always mad the first couple of weeks then people get bored and dont show due to being drunk/lazy/stupid or all three. good luck next time, hopefully some will have fallen off the perch by then our tutorials average 15-30 if we have more than one a term in first and second year, theres just not enough hours in the day to have less when there are 60 in the course. (that and lecturers are lazy) third year it seems most people have quit the course because numbers suddenly drop to about 12 per class total!

if all else fails, do you know someone who uses insulin or the similar who she could see having an injection in a very matter of fact way (obviously if she refuses tomorrow now!) we had a diabetic dog who i used to have to give insulin injections to and have been a lot less squeamish after learing the 'proper' dynamics (ie, grab, jab and throw) he just used to look at me like i was nuts and trot off quite happily). obviously she can't go round jabbing people but it might help to see how normal it is?

ive done my appeal form now, thats waiting to go in the post tomorrow. i'm going to write to customer services tomorrow as well (only so much torment in one day, i've already had to phone student loans and the LEA today, they've kinapped �1000 of my student loan because i'm living at home... but i still have to pay rent!) ive gone through every point on the letter i feel is wrong, said why, given examples, consequences and so on. ive just got to add that i haven't got the letter and GP thing yet. and i've quite clearly stated i do not want the GP letter used, why and that i have asked this before and it wasnt noted, included the letter that said it last time and highlighted it. hopefully that will do it, although if they can't find my file they're not likely to be looking at it anytime soon. i'm now sending everything by fancy post and teh reciepts are going in my claim folder incase of any more losses. i'm going into the main CAB tuesday to see if anyone has any idea of my rights about the time the claim process has taken, and potentially could take. i also have to phone the helpline again tuesday to see if they've found my file... not sure what i'm meant to do if they haven't, i might wait until after i go to the CAB and ask that too! staying positive and VERY determined now

i'm with madme. can she have the jab somewhere that feels a bit safer for her? the vaccine is a tricky one because it has a time limit age wise and once that's passed it doesn't work. obviously its not an 'essential' vaccination, but i'm of the 'every little helps' persuasion. another thing to bear in mind is that if you can get her to see a kids nurse they may well jab it in her while she's not looking- a very handy skill it shouldn't hurt if done well, just sting while the liquid is going in. are they still BCG-ing or have they stopped that now? that will be the bigger hurdle if its still running, because its two lots of stabbing and the first 6 punch thing stings.

theyve lost the file in wherever their filing place is. the staff there apparently dont know where it is cos its not where its meant to be! i have copies of everything but they wont accept them so i'm just stuck waiting

well when i stop seeing what i said in the life of every child that lives in this house then perhaps i'll believe its not true but for now i'd rather not add to their issues because its not a comfortable truth for people. if someone will bully someone for having glasses/red hair/the wrong clothes what makes you think that not living with your parents would be any different? they miss out on school activities, clubs and birthday parties because they live too far away now, or have contact, or have to see a social worker - they are different by default as soon as they go into care. they dont WANT to be different, but thats their life so personally i'd rather spend some time thinking about what toys i buy and giving them at least one part of their life where they can be like everyone else in their class. as for things like CBeebies every kid ive babysat or looked after has watched them well past the target age. you've only gotta look at when you take them on holiday and they know all the words to the songs when at kids club