NobbyNobbs
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Posts posted by NobbyNobbs
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You don't seem to have a very supportive GP. You can always change your GP. You don't need to explain your reasons.this is my second GP! the first one said autism didn't exist so i left him... this one was supposed to be supportive but now... it seems none of the doctors at my surgery know anything about AS so they keep saying bad things. my aunts making me go back to the doctor with her, because i'm slow at processing whats being said so i walked out of the doctors room and 5 minutes later realised i should've said that one of the big things about AS is a high intellect and it doesn't mean i dont have problems. so shes going to babble at the doctor until i can think what i want to say.
oh and i REALLY dont want to get a letter from the DVLA because its unreversible. if as i get older i learn to deal with the sensory stuff better i dont want to be trapped by desperation now.
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ive only just been diagnosed so i have nothing, am getting no help apart from through the uni and it keeps just being thrown back in my face that i'm not disabled enough to get help, but disabled enough to need it! i had driving lessons but couldn't cope when something happened that was against the rules or unexpected. i might call (or get someone else to call!) the council and ask if i can use my ed psych report which states i have AS and learning difficulties. perhaps i'll find a nice person and actually get somewhere for once.
i'm on my own for phone calls at the moment cos my moms had a load of her tongue removed and can't talk!. my aunts watching me all day, which says something about the level of care i need (not enough to get DLA though apparently 
) anyway, i'll stop moaning now. -
i just went to my GP to ask for a letter saying i have aspergers for a disabled person bus pass as i can't drive. i was told because i went to university she wouldn't write a letter because i clearly didn't have a learning disability! anyone know of anything else that can be used as proof? i have an educational psychologist report but thats about all that i can think of. the form says learning disabilities count. i'm so sick of fighting everytime i try to get something to make my life easier
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Then she added that it is not possible to recover from depression and I just need to learn to live with it and take medication. She belittled all of my concerns about the lack of long-term support, saying that my pessimism was a symptom of my depression.Right now I have no one to turn to because my parents are busy trying to sort out my brother (who I am also very worried about), who is very unwell in India.
odd. i consider myself recovered from my depression. sure i have bad days, just like everyone else and there is the constant background worry of 'will it come back' but i'm off any medication and doing fine. i also was told the only support i could have was group counselling - completely pointless as i wont speak in front of a group of people - and that that was the only 'long term' support they would give me. but i still got better
i know its horrible while you're down but take the meds, get back up again and then you'll be able to see how to keep yourself up there. the one thing i did find quite useful was Cognitive Behavioural Therapy, and although this is like gold dust now there are websites with the work-sheets on and you can have a go at DIY CBT. makes you feel like an idiot at first, but really helps to control your thoughts. hope you feel better soon -
i went to the CAB, and the man said that i didn't stand a chance of getting DLA because there is no scientific way to prove i have aspergers, even though i have a diagnosis. he completely ignored what i'd said about them breaching their own policy, and went on a rant about how i didn't seem autistic to him. from what ive read on here people are getting DLA, so now i dont know what to do at all!
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does anyone know where it would be best to go to get an advocate for the tribunal thing for my DLA. they refused me using a GPs report from a GP i have seen twice who didn't have any of my notes and a report from a doctor who i saw 18 months ago for a completely different thing. when i questioned this on the phone to the DLA they said it was their policy to not use any report older than 12 months and i must be wrong on the date! i have it written in my diary quite clearly. i need to be able to argue this as it is so silly, but i cant write it down myself and my mother is ill with cancer so i cant ask her!
any suggestions appreciated
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they keep sending me letters saying theyre sorry they haven't completed my claim yet, but give no timescale. last i heard they were waiting for my GP to write to them. i asked the GP who said nothing had been sent to him so who knows what's going on
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i have seen plenty of parents who are starving, abusing and neglecting their children who swear that they know what is best for their child.
i also find the assumption that social workers dont have the interest in their job to go and look up what autism is about rather insulting. being a social worker for children is one of the worst jobs i've come across, its wages aren't great and the hours are terrible. these people have a genuine desire to help children and have to deal with the nightmare of having to return children to unsafe homes because the courts actually favour the parents and will always keep a family together if there is any chance of it working out. (and i've experienced that one first hand)
i can think of things that are far worse than someone checking you're able to give your child the care it needs, and then leaving. i find it reassuring that people actually care enough to report their concerns. in the room next to me are two children who went to school for 3 years without clean clothes or food. the teachers gave them extra free lunches because they knew something was wrong, but never reported it. it took a serious incident and police involvement before those children were taken into care, and that has to be the real thing to be worried about!
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does anyone know of a charity/organisation that can rent/donate/sell proper musical instruments (a 76 key keyboard or a piano) to a deserving child for not a lot of money? shes got to grade 1 in less than a year having never been near any sort of music before and shows massive talent, but we only have a broken old keyboard and she now needs the notes that are missing! we looked at buying new, but dont have �400-700 in our back pocket to spend
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oh my...
placing a child voluntarily into care (which is what those parents must have done) is completely different to social services sneaking in and putting a child in care to save money. SS can't just do that for starters. there are massive procedures to take a child into care, SS have to file with court, then get permission to take the child from a judge and its then reviewed, appealed and so on so SS will only take a child if they really feel that they are at risk and have a good case of evidence to support.
anyone can place their child into voluntary care. social services then have responsibility to provide suitable care for the child, but because it was voluntary the parents usually retain a large amount of say in the childs life. this is what is allowed SS to get children places in specialist schools this way.
the term looked after child as far as i know is used predominantly for children in foster and residential (SS) care homes, not specialist schools. looked after children (supposedly) get priority in education and some other handy benefits that are why the child got into the school be being 'taken into care'
and as for LAC reviews, they are just part of everyday life and involve a few social workers, a teacher, the childs legal guardian (not the parent, its court appointed), a medical professional and sometimes parents as well as carers sitting around to discuss problems and goals for the childs care.
the idea that social services is out to get your kids is one of the most annoying media created hypes ive come across. for starters SS investigating a claim, and removing a child into care are two completely different things. you can complain that SS investigate a report that an autistic child wasn't eating properly, but then are also outraged when they dont pick up on another child being starved to death. you just can't have it both ways and SS have to investigate all reports that are made, but can't investigate if reports aren't made.
this just seems to be another story of 'pick on SS' when they were trying to help a child get the care they needed in a backwards system.
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it's the age! my 9 year old sister is going through the exact same thing. every day she comes home and tells that someone or other isn't talking to her because they think she's horrible. she has no particular friends so seems to get it from all angles, but also talks about the close-knit friend groups she follows round and how they all fight and change who they're talking to/like. they seem to just go through a phase where they have to test the social rules by being horrible to one person and 'best friends' with another... then they swap, so that's good news for your daughter!
will she be friends with boys or are they gross and giggle worthy? boys go through the stage later so they might be a more reliable person for her to try to be around at the moment. that was my tactic anyway. they're also slower to mature so might buy your daughter some more time to continue her interests and grow up.
if i remember correctly we seemed to calm down somewhen in year 6 when the big scary of secondary school loomed and we suddenly needed to be friends with the people going up to the same school as we were.
a great story that sort of covers it in a round-about way is sleepovers by jacqueline wilson. although mainly about a secret disabled sister it does also cover the politics of childhood best friends and might be of use in explaining how fickle kids can be.
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my younger sister (9) was wet every single night until about a month ago. she has an alarm that is inserted into a pad in her underwear and as soon as she starts to wet it makes the most unbelievable noise. this startles her awake and at the same time jolts her reflexes, which stop her weeing. she then has to go to the toilet and take out the wet pad to get the alarm off again. she now only sets off the alarm 2/3 times a week, the rest of the time she wakes on her own and goes to the toilet in the night. we have only had one wet bed since taking the nappy away, and that was because she hadn't put the alarm in properly so it didn't go off!
she was referred to the eneurisis clinic who ordered the alarm for her, and also gave her a drug called desmomelts which reduce the amount of urine produced at night. we first tried the drug alone while she was still in nappies, and it did nothing for her, but the alarm has worked a treat. that being said her wetting was psychological so she needed the 'no option but to get out of bed' route.
we were advised lifting doesn't work because the child isn't fully awake, so unless you want to make your son run round the garden in the middle of the night that's probably not the best route to expect results from! they need to wake up for themselves
we didn't think we'd ever get C dry because she had such deep-rooted problems and everything we had tried had had no results (punishment, promises of treats, lifting, more punishment...) but she's so proud now and loves that she can go to camp and on holiday without having to have nappies.
edit - she was also wet in the day (and still is when she can't be bothered to go to the toilet) and so also had no problem with lying in a wet bed as we never used nappies in the day and if she didn't tell us she'd wet she was in soggy clothes until the smell/sight made us notice! she didn't respond to reward charts. with the alarm came a chart to track it for the nurse at return appointments. she loves this chart even though there is no treat attached to it for her. she just is thrilled that it is all working. and if she has to have the alarm for years until she can get away from it its not really any problem. we'd never go back to nappies as part of it was simply laziness she just wont get to go to a sleepover until she's fully dry.
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ive made the appointment to see the GP on the terms that if he is negative again i get to write a letter of complaint to the practice. what really bothers me is that all the steps so far were paid for privately by my university. he saw no paperwork, didn't ask for any details and questioned the professionalism of the psychiatrist who actually works part time for the NHS and does private work for the university to help speed up referrals within the disability office so its not like i've got a letter from the tea-boy!
unfortunately i just dont have anything to spend on a private diagnosis and i will not ever ask my parents. they said they'd put it on their credit card and i'm not having them paying something like that off for the next 3 years because the NHS can't sort its act out. so i'm back to playing the waiting game, but i'm sure i'll get there eventually, or go mad waiting
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unfortunately my GP is not to be relied on. when i told him what had happened at university and how i had a provisional diagnosis from a psychiatrist he said that autism didn't exist and that i'd been given the provisional diagnosis to shut me up and people just gave out diagnosis for ASDs because it was flavour of the month so i bet he'll use any excuse to not recognise a private diagnosis.
i've seen another doctor since who's referred me to the mental health team, but given no specific time-scale for anything, and didn't know if they'd do anything about it, but would 'decide if i needed a diagnosis'. so my mother is now forcing me to go back to the GP and ask for the application for funding be made. i really dont want to go back so he can shoot me down again, but it seems the only option left to get anything done in the next few months. its just very frustrating that noone will just get on with it and sort this out. if i went and said i thought i had cancer they wouldn't take months to decide whether they wanted to find out if i did!
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hmm... personally i suspect that some people are misdiagnosed because they have some traits early on that are just extremes of the normal development troubles (terrible twos and so on) and then get past these things and are magically 'cured'. so i suppose in my mind the diagnosis isn't true until there is permanence of the traits. obviously the way they manifest changes, but the same basic problems are there. i know people who were diagnosed on the spectrum at 2/3 who then turned out to be perfectly normal in their behaviours (not just coping but clearly not having any difficulties even in situations where they could not have developed coping methods), but retained the diagnosis, giving the impression that they got better and moved off the spectrum.
with the system of diagnosis being to tick X number of boxes on a form its bound to happen that at a certain point some NTs exhibit enough of the behavours at the same time to get a diagnosis, when they might have just been having a bad year developmentally. i'm particulalry aware of this as i have two sisters who could both tick every box available for an ASD, but are actually just developmentally delayed as a result of external factors, and have behavioural and social problems as a result. eventually they will catch up and be like other NTs their age.
although i completely agree early intervention is essential for establishing coping methods for the problems of people with ASDs i think its also a bit misleading to base a diagnosis for the 'milder' spectrum disorders like AS on only 3 years of life in which all children have to deal with massive developmental hurdles. personally i'd rather have a diagnosis from the latent 5-9 age group when they're developmentally stable, but learning the social rules that are the big problems for AS kids.
so i think what i'm saying is that perhaps the diagnosis system is at fault and that some children grow out of their diagnosis, but that its not possible to grow out of an ASD if that really is whats going on.
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not sure i count as i'm the one with AS but...
i was secretly put on some form of anti-depressant at 13. my parents weren't told what it was and i only worked it out when reading a list and recongnised the name of the drug! stopped that, then was given prozac somewhen between 15 and 17 for depression, but it didn't seem to do anything. spent the next few years changing drugs every few months as none seemed to have any effect (and lots of bad side effects!)
after one disastrous one where i lost 2 stone in 2 months because i couldn't stand to eat anything i felt so ill (and then started vomiting blood) i settled on citalopram for around 2 years. then got my dx of AS and realised the reason the drugs dont work is because i'm not depressed, i just feel guilty for not being like everyone else. now i'm 'off' citalopram, although i have to take one tablet a week because i'm having terrible withdrawl symptoms that dont go away - even after 6 months of not taking the stuff! my heart rate rockets, my muscles constantly spasm and i become so dizzy i cant even sit up. been referred to the mental health something or other because my doctor said 'hmmm... that shouldn't be happening' when i told her about it, and doesn't know how to stop it.
despite my mixed experiences i'd still totally recommend that anyone that needs that sort of help go for it. you just need a very honest buddy to tell you if you're having any negative effects you dont notice. the prozac made me so vague i have a year i cannot remember and apparently i couldn't carry a conversation because i'd just stop talking and walk off halfway through a sentence. different ones work for different people and its a trial and error thing although reading this back i'm beginning to think that i'm just not suited to antidepressants as i seem to react in strange ways (admittedly i also get insomnia from sleeping pills and my asthma gets worse if i take my inhalers!)
the only other thing i have to say is that i have fallen in love with 'rescue remedy' as it calms me down in any crisis so i dont get to the point where i feel i cant cope
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i'm 22 and i have the same food problems as your son. i also have AS and OCD, and go through phases where i just can't cope with eating at all. i feel extremely anxious, but find it hard to work out why. all this week i've been unable to eat the meal cooked for the family. i find that at these times if i get to choose i have texture meals - all soft or all crunchy... or somtimes a color one where everything is white. is he old enough to pick out his own food, even if its things you think aren't a proper meal? one of my dinners this week was milkshake, smooth yogurt and soft cheese!
any food has to be better than none, and if its anxiety led it hopefully will pass with time as he becomes more comfortable with foods and feels more in control.
when i was a child i was very underweight and my mom believes in old fashioned parenting (i was undiagnosed) so if i didn't eat what everyone else had, i didn't eat. eventually she had to abandon this plan because i didn't give in. i'd rather be hungry than put something with a nasty texture in my mouth. i also have trouble with the idea of something that's touched somethign else. if there's crumbs on the chopping board i wont eat anything cut on there, and this just builds on the anxiety. i also have massive heat sensitivity in my mouth and like to eat things room temperature. thats the part of the sensory issues i find my parents struggle with most - i'll quite happily eat foods that most people would only consider eating hot.
perhaps try giving him as much control over his food as you can bear - take him to the shop and let him choose things, then let him pick anything he'd be willing to eat for his meals, prepared in any (safe) way. let him prepare it if possible, pick his plate and cutlery etc... (i have certain spoons and forks i prefer over others) it makes my mother cringe to see the way i eat some things - tinned soup straight from the tin to a bowl with no heating etc. but to me its the best way to eat it.
if he's having trouble with contamination shop bought individually packaged processed foods are going to be a safe bet, i particularly like kids products with clear labels stating whats NOT in them eg munchbunch yoghurts - no bits!.
hope something in there helps
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i'm actually still officially at university next year, but am studying as a (very long) distance learner because i had so much trouble with living away from home. basically i stop eating and sleeping because there's noone to tell me to do those things. at the moment i have no responsibilities except feeding and cleaning my hamster - my one achievement. ive fed and cleaned her perfectly for over a year! so i'm mostly just looking into my options and getting an idea of what i need to be able to do before i can 'grow up' and move out!
my parents are fine with me staying with them but they drive me nuts if i'm home too long and i'm sure eventually i'm going to want to have my own home and all that stuff.
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i just found this on the news - http://news.bbc.co.uk/1/hi/uk/7464826.stmit really drives me mad when they do things like that. i'm sure it is horrible for the parents who have their children taken into care but the ones who are left out of the care plans are left out for a reason! kids who are trying to move on from abuse and neglect can't do so if the people who allowed the abuse and neglect to happen are around them every 5 minutes.
it might just be because i see things from the other side and pick up the pieces but the parents SHOULD feel guilt and failure. its funny how seeing kids half-starved and terrified takes away the sympathy for the parents... . their kids weren't taken away because they were too nice to them. it is very annoying when i watch some parents fight so hard to get their kids back and succeed, and then reports like this pop up which paints the whole system black.
they also make no attempt to put the sample into statistical light. 184 parents were questioned with 190 children being the sample. last i heard there were around 60,000 children in care in england. it also doesn't take into account the reasons for the kids being in care. you can quite easily find 183 people whose children were taken into care for sexual abuse by the parents, in which case of course they'd be left out of making decisions and would not have as much contact as they liked!
the report probably cost a forunte, and i'd certainly rather see the money spent on the kids that dont have any control over the situation they're put in.
anyway, thats my rant over
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does anyone know about options for where to live other than with parents?
i need a fair level of care to cope with everyday things, but living with my parents isn't ideal. they have two younger kids to cope with and it just isn't working out. now i'm out of university i really need to start looking at other options. so far i haven't been able to hold down a job as i become very anxious as soon as i'm tied to a particular location or duty, so there's no way i can afford to buy my own place, even if i could cope with living on my own. and as the product of a nice middle class family there's absolutely no way i can see to get a council house!
anyone got any ideas?
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not with a child but i sleepwalk and what you've described sounds very similar to what i did when i was younger.
i'd wander round the house, go into my parents room and talk to them, announce i needed the toilet to which they'd reply ... well go then!... and i'd happily wander off again and get back into bed (without going to the toilet). i will also walk down stairs and open doors, so my parents used to double-lock the front door incase i got out.
the worst ones were when i was having a lucid nightmare and walking at the same time, because i'd be out around the house thinking that whatever was in the dream was real because i could control it. i'd 'wake' screaming my head off halfway down the stairs or in the kitchen but was never properly awake and could be talked back to bed eventually.
sleepwalking and talking is an odd one. i would have vague ideas of what had gone on, but in my mind it was happening in my dreams. until someone told me what i'd done i didn't know it was real. does your son remember what happened in the night without you reminding him? because if he doesn't then the best thing is probably to not tell him. i found knowing i could do these things, but not control it far more disturbing than anything that was going on in my head when i was asleep.
i can't help with anything to stop it happening. stress brings mine on so perhaps a really good calmoing routine before bed might help your son?
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travelling on busses isn't so bad as long as you're a bit picky over when you go. i live in a rural area so all secondary pupils have to get a bus into the schools in the city... i never go on those particular times because its crowded and noisy. beyond that its mostly elderly and as long as you dont sit in the disabled area they're okay... i got on the bus on two crutches unable to put one foot down and some old bloke still kicked me out of my seat because he didn't want to stand!
as for bus times, there should be a travelshop in the bus station that is the 'main' one for the area who can advise about journeys. otherwise most bus companies put all their timetables on their websites which i find easier than going to ask someone. can you read the timetables? they're a bit nuts looking, but pretty basic once you get the general idea. and if in doubt, most bus drivers are really helpful and will tell you what bus to get if you're on the wrong one, and times etc. you can always work out one-way and then ask the driver to give you times for the return leg when you're on there.
bus etiqette - seems to apply everywhere i've been, but might be different in huge urban cities -
elderly sit at the front, then block the aisle with wide bottoms, shopping trolleys and anything else they can think of. and they will ask you to move even if there is a seat free in the row behind!
young sit at the back being noisy and generally horrible
the middle is for the confused businessman and anyone else who doesn't fall into the two other categories.
i'm actually excited that i can get a free bus pass now, because i dont drive and like to be able to go where i want without waiting for my parents to be free. none of my family can understand how i put up with busses and dont want to get my driving licence, but i have endles patience so the time and delays dont bother me.
if you want any help working out timetables etc, feel free to ask
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i've been recommended the OU for postgraduate work or a second degree. bikergal how did you find the self-discipline of making yourself do the work when there are other things to focus on as well?
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i used to chew everything. mostly it was the collars of my clothes, or my fingers, or objects such as small toys. it was a sense thing. i'm very picky about how thigns feel in my mouth, so if i find something i like the feel of, its gotta be there all the time! now i chew plastic straws and spoons. there is one spoon at home that has the perfect shape and weight and if i get my hands on it, thats it for days.
incidentally i also dont have the 'i'm hungry' and 'i'm full' thing either, but i dont think the chewing was related to that. have you tried giving them acceptable things to chew? my favorite is sugar-free chupa chups. once the sweet is gone i chew the plastic stick!
oh, and the glasses thing? the little plastic coating on the ends feels very nice and smooth in the mouth, plus as you twist the glasses, it doesn't move 'predictably' because its bent at an angle... i got through 2 pairs that way, until i was threatened with no more glasses if i did it again. i have to have the glasses to hide behind and protect me from looking at people (in my mind) so that was a big threat.
now i'm too smart!
in Beyond Adolescence
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that GP was just a joke... he had no notes and none of the reports from anyone i'd seen while at uni, but straight off said they were wrong and i was fine.
i think the bus thing wouldn't be such an issue but a return ticket to the nearest shops from my house is �4.80 so i dont go out. when i have my bus pass at uni i go out every day just to get out of my room even if i got on the bus, went to the station and walked back again. and its equally annoying that my dad who can drive, is perfectly healthy and able to walk gets a bus pass cos hes 60 but i dont, even though i actually need one and have a better reason than just being X years old.