DaisyFulkirk

It took me a very, very long time to learn to recognise That Feeling as having a full bladder and needing to go and use the toilet. I have a catheter now for unrelated reasons but until I got my catheter I was still sometimes having accidents so until I was 23 years old. If I was ever distracted at all that would be a risk time, and also being very cold made me not be able to feel if my bladder was full. I mostly learned to manage it by being really careful to use the toilet as often as I could and setting the alarm function on my phone to beep every two hours if I was having a day of staying at home (reading books or playing computer games) and not having changes betwen what I was doing to help me remember to empty my bladder. When I was a bit older I had a long time in hospital while they were trying to understand what was happening with a physical health issue and the nurses there helped me to be more sensible about using pads as just one more tool to help me be comfortable like having painkillers if you have a headache, or a special chair if you need help to sit up. They were really good about helping me not be embarrassed and I noticed that my genitals were not sore or itchy any more once I was using pads, I think I must have been at least a little bit wet quite a lot of the time to get that sort of problem but I can't remember ever actually properly noticing at the time. To BuntyB I would tell your daughter that lots of grownups of all ages have some leaking sometimes and that she can have some pads (like the little Tena ones) so that she won't have a wet bum, and that nobody will know that she is using pads unless she tells them so she doesn't need to be worried about being embarrassed. I would tell her rather than asking so that she does not have any chance or risk of feeling like there is any sort of accusing happening because it sounds from what you wrote like she might be feeling embarrassed or defensive because that is the sort of thing people do if they are feeling defensive. I have little strips called reagent strips for urinalysis which you put some wee on and there are little squares which change colour to show if there are certain substances in the urine, for instance I would use one to check if I had a Urinary Tract Infection (UTI) by looking at the indicator squares for telling me if there is blood, protein, leukocytes (pus, yuk) or nitrites in my urine. You can buy reagent strips from big medical supply places, I go on medisave, or maybe you can ask the GP for some. Having your own at home means that you don't have to try to wee in a pot which makes it easier. I'm sorry that this message got very long!

Of course it is your choice and it should be respected but I wanted to make sure that you know that there is not and has never been any evidence to suggest that MMR is harmful to a child let alone that it could change anything for a child who is already autistic (except for protecting them from some potentially fatal diseases). Whoever told you that it is just a single injection for all 6 vaccines was lying - I can't imagine why someone would do that especially when it is so easy to check! Hope it goes okay whatever decision you make.

Hughey women like that who deliberately recognise and celebrate that aspect of themselves are often known in ‘alternative’ communities as Dommes, there are forums and dating sites devoted to helping people who are like that find their partner, I can tell you some more but this is more about being in a sexual minority than it is about being on the autistic spectrum, if you like I can send you a message or something with some more information?

I am pleased that there are people who remember me and who I remember still here! I'm very pleased that things are okay at the moment and that your daughter might be off to university. Daisy

Maybe we can make it clearer about what someone can do specifically to make sure that everybody can read their posts? For example, one of the biggest things for me is using carriage-return (that is another name for the enter button and it comes from when people used typewriters) to put space in their post so that there are not more than maybe 6 lines (or five or seven) and then a space. That breaks up the writing and I don't think it would make it harder for someone writing to do that, but it makes it a lot easier to read - so not very much effort put in but lots of benefit gained. The next biggest thing is not changing the font, size or colours of the writing in a post. It is different if it is in your signature because people can ignore or turn those off easily. One of the things I know that I do too much, that can make my writing harder for other people to read, is putting extra bits in brackets in a lot. My learning support tutor said that you can do it with maths because that's a formula that people learn to deal with the same way each time, but language and writing are so much more complicated that it does not work as well. I try to concentrate on making sure that my writing is clear and easy for everybody to read because I do not want anybody to feel excluded because of how I write not being accessible to them. I did some reading about writing documents in an Easy Read format last year and while I am not trying in particular to write in an Easy Read way now, I have ‘taken on board’ some of the things it said and I think that I write better as a result. I can write at an academic graduate standard but it is very, very hard work, I need a lot of help to do it and I am very tired afterwards. Also my support worker said it makes my talking sound as if I have eaten a textbook during times when I am working on a formal piece of writing! I do not think that anybody wants or expects that standard of writing on a message board and I also do not think that it would be any more accessible and probably actually less accessible than when people just write basic clear English. If my writing is hard for someone to read, please could you tell me and explain why if you can, because I would like to make it better. I'm sorry that this is a long post!

One of my parents ‘came out’ to me that they recognised in my diagnosis meeting with the clinical psychologist that they are the same as me eg I am autistic and so are they. I think that they are quite cautious about sharing it with my other parent (their partner) because Other Parent is very very neurodevelopmentally normal and not very tolerant of my/our autisticness with it. Which is sort of surprising given that as far as I can tell they are happily married and have been for something like 26 or 27 years. I think that Parent telling me that they had realised that they are autistic is one of the best things that could have happened in terms of how much easier it has made it to talk about what I find hard, being anxious or unhappy and things like that. I do think that Parent being autistic changed the way that they could care for me and my siblings but I think mostly in a good way. People I was at school with, once I had moved to an inclusive school where I was welcome and supported and valued, always used to say how nice Parent is and how much they wished that they had a parent like mine. I think that partly that is because Parent is very pragmatic, practical and calm and is also very consistent in how they respond to things. That always used to make me feel safe. In my family there are Parent (self-diagnosed autistic), their spouse Other Parent (as ‘normal’ as they get), me 25 with diagnosis at 19 and significant autistic impairment, Sibling 1, 23, who has some very minimal impairment, most noticably around coping with unexpected change, and Sibling 2 who like Other Parent is very typical socially and functionally and interestingly is also the only one who likes things like travelling (had a gap year between school and university a very long way from home) and team sports.

Hello! My name isn't Daisy but for the purposes of this forum it is. I am an autistic adult with a severe physical impairment. This is a very complicated thing to be. I used to use these forums a very long time ago but then things went badly wrong with my physical health, and I was in hospital and then in residential care for a long long time. It was horrific and I would do anything to stop any other human being from experiencing what I lived through. I think that people who work in residential care are very often abusive bullies and people who actually have respect for other people and who actually care about the people they are supporting are a very very tiny minority of staff in that sort of place. Now I am home again but a lot more severely impaired and having a lot more support. On the plus side this means that I know a lot more about support for people who need lots and lots of support from another person. I think I might know some forum members on Facebook. I have made a choice to keep my interactions here and there completely separate from each other, if you know me (or think you know me) from somewhere else please respect my choice and call me Daisy not any other name. You can always say hello by email instead if you want to! It is nice to meet you or to see you again, depending. ‘Daisy’

Hello Are you the same Kathryn who I talked to on here aaaages ago, like round about 4 years back? I hope so because I can remember talking to you about HE stuff way back when I was on here before. How are you and your daughter? ‘Daisy’ - now doing Distance Learning and absolutely loving it.

I think the problem much more than anything else is not schools that don't know, it's schools that don't care. My primary school were very pragmatic, they identified what I needed and did it, not worrying about labels and experts and money.

Hello new people and... um... old people. No I didn't mean it like that... or did I? Thankyou for all the welcome-backs. What does L&P mean please, baddad?

I went to mainstream school and finished four years ago. I got 8 gcses at grades A and A* and two and a half A levels - an A, a D and an E. As well as my autistic impairments I have a mobility impairment and a high IQ and need direct support for a lot of my learning. I think special school would have damaged me - I find it hard enough to cope with having to interact with lots of people who do not understand about autism now, I think I would find it even harder if I hadn't grown up with quite a lot of them in my class. I think being very different from the ordinary in mainstream school helped me because my needs had to be met individually, for me - not slotted into someone else's system. When I was 14 my biggest class had 20 people in, when I was 16 until the end of sixth form the biggest class was 10 people and I spent half the time at school in a group of either 5 or 3.

I went when I was 11 and I hated it. The noise and crowds and smells were horrible for me and I didn't get to somewhere quiet until we were back in England - even the hotel was noisy. I did like the rides, I liked one of the rollercoasters very much, but I found all the other things very hard to cope with. I know some autistic children mind noise and crowds and smells more than others though so I don't want to put anyone off just because it wasn't so good for me.

I look at people if I want them to know that they have got my attention, but I'm not very good at 'casually' making eye contact - it's always deliberate.

Hello everyone, I went away because I was in hospital and then moving house and all sorts of things but I'm back now. I think. I hope everyone is Ok and had a nice Christmas and New Year.

I like Google Maps http://maps.google.com/ it is like Google Earth but I find it a lot easier to use. It doesn't have as many fun features as Google Earth - no saving locations or anything like that, though.

They were allowed to offer non-European languages before, too. We had short courses of Japanese and Chinese in our GCSE years at (mainstream comprehensive) school and some other students took GCSEs in Farsi, Arabic, Bengali, Chinese...

I drive an automatic. I use hand controls (my feet are not strong enough to work the pedals) so I didn't have the choice of manual or automatic because it'd be complicated and expensive to put hand controls on a manual car. I like my car, I find it easy to drive and as far as I can tell it drives just as well as any manual car I've been in. I think sometimes there is a 'snobbery' thing because yes it's technically easier to drive than a manual car and it seems almost like people resent that sometimes.

Just another thought about the age thing. I don't think it is a good idea for a child to start at school and not have tried nuts yet. It would be much safer to find out if there is an allergy or not at home with adults and help closely available. Babies of all the other mammals that I can think of wean onto whatever their parents normally eat.

If she has really lost two stone in four weeks she needs to be in hospital. Two stone is a LOT, for an 8 year old, really a lot. Even one stone is a lot. One stone is 14 pounds or a bit under 6 and a half kilos. If you definitely think she has lost that huge amount of weight then it sounds like something is not right, even if she's lost a bit less than you think, a big enough difference to show in clothes fitting and things is quite a big loss. I agree with what Oracle said, if she was previously being OK on 'unhealthy' food then let her have them, leaving them out seems to be swapping one nutrition problem (junk food) for another one (not eating) and it sounds like she is going to get quite poorly. Another option from going back to the GP is to ring up and talk to one of the nurses at NHS direct, they're not always really good but they might have some suggestions about what to do. I hope your daughter feels better really soon.

Just remembered something! If you are going to give him a reward at the end make sure that he will get the reward when it's all over whether he is 'good' or 'bad', make sure he knows that, he is being rewarded for getting through it only, otherwise he will also be stressing about his behaviour losing him the reward which will make it all worse...

I am going to the protest, it is about welfare and benefit reforms and there is information here about it.

There is something I have been thinking about for a long time. I have just about finished my degree, and I am thinking about doing teacher training. My mum is a peripatetic (that means going round visiting different schools) violin teacher, and some family friends who are also teachers think I could do that too. I play the viola (which is sort of like a big violin) and when I lived at home and when I'm visiting my parents I go to work with my mum and help her teach and watch how she does it. I am teaching four pupils at the moment as part of a supervised project within my college and my supervisor (who was also one of my tutors for a big piece of coursework) says I'm really good at it. I really enjoy it, I've taught on children's holiday music courses too and I think I might be quite good at it, too. I plan lessons for my pupils on my own, show them to someone every week to check that they are OK and they always are, and teach on my own with someone looking in for a few minutes in each session. The problem is that to be a proper peripatetic teacher now they want you to have Qualified Teacher Status, which means doing some of your training as a classroom teacher. When I was a prefect at high school part of my prefect 'duties' was to help in lower-school music and maths lessons, and the volunteer work I have done recently was in year 6 at a primary school. What do you think? My mum doesn't think I could do it - I think I might.

I can. I think. How do I know if I can or not?

I don't think MMR has got anything to do with autism, I honestly don't, but even if it did I'd take a tiny chance of turning a not-autistic child autistic over a fairly significant chance of turning any child dead. Kids die of measles, can die of mumps too and everyone knows what happens to a developing foetus if its mum catches rubella. There's enough that really truly cannot have the vaccination because of allergy or severely compromised immune system or some equally major medical reason, and those kids (and little babies who aren't old enough yet) health absolutely depends on everyone else being vaccinated.