jb1964

Hi Missiwissy, Can't offer any advice sorry - but wanted to sympathise. Our daughter turned 16 in July and your one statement above struck such a chord and we keep thinking surely this can't be allowed to go on. Unfortunately though I'm not quite sure what support if any is available and it does go on and on and on. Our daughter was diagnosed at 12yrs old - and has been seeing CAMHS again for this past year because things escalated again (we've always had aggression issues) - but I have nothing constructive to offer from their input other than they've recently (since Jun) prescribed anti-depressants - and we've just been told this week that the anti-depressants can have impulsive/aggressive side effects - so it's a lose lose situation. When her aggression or self harming has been so bad that we fear for her/our lives we were told by them to call an ambulance and that she would be sedated - unfortunately this then can include the police being involved and the last occasion of her being taken to hospital - the A&E doctor asked why was she there? and didn't we have a plan of action from CAMHS in this situation? they didn't sedate her and just stood back (7 hospital staff) and refused to help my hubby while she was berserk attacking herself - it makes you want to cry.. Also during our appt. this week they mentioned transferring/discharging because she is now 16 - so I'm not quite sure how much time you have left for CAMHS input. Take care, chin up, Jb x

Hi Stressedout, Sorry that I have no advice I never went down the statement route with my daughter so have no idea of what is involved - but i'm sure someone will come along soon who will be able to help you out. Take care, chin up, Jb

Hi Mumble rocks, Can you sit down with your friend and go through different things that you're experiencing and they write them down for you before you go - i.e. is your friend good at coaxing out and explaining what you mean - I guess this is a little bit like what I have to do with my daughter I try to think of lots of questions associated with her problem to try and get specific answers (if you know what I mean). Hope this makes sense - I'm sure you'll be ok. Take care, Jb

Hi Teresa, A few years ago when my daughter first started to wear glasses she had a prescription and within 1 week she couldn't see - too her back and they re-sat her eye examination and said there was nothing wrong with the glasses and to see a doctor. My daughter freaked out over this as she took the optician to be saying she was lying (Sp*cS*vers) - I didn't know what to do as was sure the doctor wouldn't be able to help so took her to another optician just to have an eye test and check the prescription - I had to pay for the eye test but it came back a massive difference from 1.25 to 2.75. Do you have another optician who could just check the lenses for you - I'm not sure if they'd charge though. Good luck with the contact lenses. Take care, Jb

Hi Welshlass and welcome, I have a 16 yr old (daughter) who's just started college on a 3 day a week Media studies course. Fingers and toes crossed things work out for you and your boy. Take care, Jb

Hi Minerva, Obviously each situation is different - we've had similar problems with our daughter she is struggling to cope with everything and is becoming more rigid in her thinking as she gets older. Her self harming has developed as a coping strategy - CAMHS and ourselves are currently finding it difficult to move her away from this as we've been told it can also become addictive due to using it as a coping mechanism. We've also been told about the elastic band theory (although not by CAMHS) - however my daughter reaches the point of self harm within about 20 seconds from the initial upset giving very little time to use any intervention method but we're still trying..... Take care, Jb

Hi Mumble, With reference to the 'panic attack' thing - my daughter has both epilepsy and severe panic attacks which can be very similar in some respects - some of her panic attacks are not what I would ever call panic attacks to look at i.e. she doesn't hyperventilate or build up any sort of fear, they are either instant without any apparent trigger (although there usually is it's just so instant it's not apparent to me watching it) - or can happen if she gets sad, often she falls to the floor with her eyes closed and appears to be asleep although she can also fall and have her eyes wide open, she cannot talk or move but is usually aware. Afterwards she may not be able to walk or talk (or has severe slurred speech), for up to an hour. She can now differentiate between the two - the epilepsy she feels different beforehand - she usually starts to feel sick, can get flashy black images before her eyes and is beginning to know she has to make herself safe - i.e. sit or lie down whenever possible, her mouth also feels very dry. Hope you get sorted out soon - I think when you see the Neuro you should definitely mention that you saw your GP last year about these losses of time. Take care, Jb

Hi, My daughter has epilepsy as well as ASD - when the Paed. first started investigating - they told us that there are 'episodes' that are familiar with asd children/adults which can be similar to epilepsy but are not - they then carried out EEG/MRI's etc to rule those out. I think it's worth mentioning to your GP or Paed at your next visit. Also, make notes of these events - i.e. what time of the day, how long did he appear confused - when he's staring - how long is this for, how is his breathing/any noises, pupils, etc. I know it can be difficult to get my daughter to explain how she feels (and she's 15) - but a direct question like does his mouth feel dry (thirsty), or does he feel sick, headache etc - does he feel sleepy or have a nap afterwards? Take care, Jb

Hi Mumble, Hope you feel better soon - sounds like you've had a pretty rough time of it. Don't have any advice about the meningitis part - although for the asd/seizure link - I know when my daughter was being investigated for epilepsy they said its common for people with asd's to have episodes that are very similar to epileptic seizures and that they needed to discount that first (by EEG's/MRI etc) - also I know that high temp. etc can cause seizures (similar to febrile convulsions in infants). With reference to the 'losing basic words' thing - I'm not sure if that is a side effect from the meningitis - but it's definitely a description that's used a lot on the epilepsy forums - before and after a seizure my daughter can become very confused (not just as part of her asd it's something totally different), and this affects her thinking/memory and speech/co-ordination depending on the seizure - usually if she has a nap afterwards it makes her feel a little refreshed. You mention that you think you've noticed a pattern - my daughter is worse on waking up and when she's tired or not well/stressed etc. I think plenty of sleep and rest is essential and fingers/toes crossed for you that the appt.'s all go well. Take care, Jb x

Only just read this Bid - glad to see she's home safe and fingers and toes crossed that everything heals pretty quickly. Hope you're ok too - it's things like this that really put's everything into perspective and it usually hits you a while afterwards - just in case you suddenly find yourself feeling pretty weepy. Take care, Jb x

Bet you can't wait -this is so exciting - good luck and enjoy, Take care, Jb x

Hi Joanne, I had one of these a couple of weeks ago - everyone (well nearly everyone) involved with my daughter attended -i.e. CAHMS (CPN & Consultant), OT, Autism Support plus Head of Year, Deputy Head-teacher etc - and then my daughter could have attended (but chose not to) plus myself/hubbie. It's to try and get everyone to work together and bounce idea's of support etc between everyone and put a plan of action in place - in our case for our daughters exam timetable and leaving school. Take care, Jb

Many thanks, Jb

Many thanks, Jb

Hi Teresa, Would love to see some of your daughters work too - showed my daughter your post earlier this evening and she was like 'what!! - that is so weird' - we've had many discussions these past couple of months that she cannot be AS because she doesn't like this or that - all the stereotypical things that AS people are supposed to be obsessed with - she has been doing all these personality/as tests etc so it was lovely for her to read something she can associate with. My daughter flits between pencil drawings and copic markers - she hates painting - the avatar picture she did was the very first time she used her graphic tablet and I was so amazed - to be honest I bet she's probably only done about a dozen or so pictures since she had it - I think it's very very time consuming and makes her hand hurt (she has hypermobility syndrome) - although she holds pens/pencils etc awkwardly she can sketch in a few minutes - it's only if she uses copic markers or does something with a lot of shading in it that it tires her - although she cannot leave it and take a rest - she has to finish it. We made my daughters costume - she went as Trucy (or Minuki is the japanese version's name) a character from the Phoenix Wright Ace Attourney game - and I was surprised to see just how many dress up - she was so chuffed when other people dressed as characters were coming running up to her calling Trucy come and have your photo took etc. I think she would have liked to gone as Misa Misa (from Deathnote) and probably once this outfit gets too small Nanny and myself will have to get the sewing machine out again. Also when everyone did the Caramel dansen it was a joy - I even felt like putting my hands up!!! She also wants to learn Japanese - and can sing and recite loads of songs in Japanese or can tell me totally meaningless phrases that she's picked up along these sites!!! I did get her a learning disc which used some sort of picture assocation with sounds but she wasn't that impressed. Take care, Jb

Sorry for probably asking the obvious but what is a 'cdc' - not heard of it and couldn't find it on the jargon buster. Many thanks, Jb

'Victory is mine' he shouted........

My gosh does that really happen in real life (nurses being hungover - I mean - not that they're naughty!)- I always thought Holby City was so far fetched.......... Take care, Jb

Hi, Don't know if anyone saw the report today on the failing of proper care for those with learning disabilities (hope the link works - not very good at technical stuff!!). It mentioned on the ITV news at 6 - that the main reason being that more often than not professionals are believing the symptoms they suffer are linked to their condition rather than assessing them as they would anyone else - effectively being discriminated against. Definitely see a lot of that where my daughter is concerned. http://news.bbc.co.uk/1/hi/health/7959730.stm Take care. Jb

Well done Bid - keep it up - you will feel such an achievement if you do this. A lady I work with gave up recently and it was very very hard but she did it and I'm so proud of her - you can do this too. Take care, Jb

Hi, Never heard of this - - but assume you can buy over the counter - interested if it helps with anxiety etc and going to google in a minute - are there any side effects and can it be used if you have epilepsy (I know I've read somewhere that certain oils etc shouldn't be taken). Many thanks, Jb

Hi Teresa, Have the same problem - my daughter is slightly better now with clothes and will wear a proper waistband (providing it isn't tight or itchy or too thick etc) whereas for years soft elasticated waists were all she'd wear - comfort over style any day. I buy nearly all her clothes over the internet or from Asda etc when I'm food shopping as she won't entertain it. My daughter also loves anime, manga and all japanese art, culture etc - she too draws absolutely loads (she drew my avator with a graphic tablet about 3yrs ago - she's 15 now) - she loves to draw gothic loli style characters so last year I did take the plunge and order a couple of skirts from e-bay in gothic loli style which she absolutely loved - they're elastic waist and very stretchy and lace underneath in a black and black with dark purple she wears black tights with them and a dark t-shirt and looks quite trendy especially now as all this style has suddenly come into fashion - for xmas I bought her some arm thingy's and some frilly style t-shirts - again in black or dark colours but very very soft material - and making sure you can't feel any big seams etc on the inside. I also took her to the anime convention (expo) in London and Birmingham last year - they have a big drawing area which she loved looking at everyone's drawings but wouldn't draw herself - she cosplayed for the B'ham one (which was much smaller) - she coped absolutely fantastic because there was so much anime/manga etc - although I spent a fortune on books etc. Out of interest is the art website 'deviantart' - my daughter spends most evenings on there viewing all the drawings - although she won't submit hers as she thinks they're not good enough - she's so critical of her own work. Take care, Jb

Hi, I'm not quite sure what's going on with these statistics, half of me believes yes this has been going on for years - even thinking back to when I was young there were children in my class that I can definitely associate with similar behaviour to my daughter - but the other half is scared about where all the 'diagnosis' thing is going. I feel these days there seems to be competition even amongst how much each child has to cope with - it's a bit like when I was young I lived in a shoebox etc, and as Baddad says about 'soon everyone will be autistic' - it is scary that things seem to be taking that route. Looking back even into my own childhood - you could say I was quiet, withdrawn, shy, wouldn't make eye contact, insular, etc etc etc - but I know that I'm not autistic - I look at my little one who has millions of daily similarities with her elder sister (who's ASD) from texture to food, sensitivities, can't sit still, can't concentrate, literal thinking etc etc etc - but again I know that she's not autistic. Also at the risk of probably saying the wrong thing - I think the whole private diagnosis thing is even more scary - I'm not saying that it isn't needed - the service is vital to many who have massive waiting lists etc - but I've seen posts about recommending a private consultant that will be more sympathetic, what does that mean? - more willing to diagnose if you pay? I find it frightening too that some diagnosis is made after an hour appt. or a video observed - there is no way any childs (or adults) whole behaviour can labelled into a box after one consultation - anyone could behave in any situation differently at any given time and that goes for NT. I think diagnosis should be a lengthy assessment process - that will probably again be the wrong thing to say but I think if it's going to be done then let's have a full assessment, over a length of time in various situations etc - after all this is something they are saying is lifelong - that isn't to say that help shouldn't be provided along that diagnosis route in areas such as SALT, OT etc. It's a bit the same with ADHD - again I'm not saying that there aren't children who don't have this - but these days anyone who's a bit active/hyper is given the label - parents use it freely, teachers use it freely. My friends son went all through school with the teachers on her back about putting him on medication etc etc, even though I went on school trips where the teachers constantly shouted at him for 'naughty behaviour' when he was certainly no different from those others around him other than he got caught. When my daughter was little she would go berserk if I gave her a couple of yoghurts - she'd be bouncing, constantly running into the walls, couldn't concentrate, aggressive etc - eventually we narrowed it down to certain foods which helped massively - again I'm not saying that all ADHD children can be cured by diet - I'm saying that there is definitely certain behaviour in some children that can be helped by it - whereas these days they are labelled either by parents/family/friends or teachers at the first round. I have a cousin who's little boy is what most people would say is mega hyper - but then again if I drank 2 litres of coke and ate packets of Haribo's constantly I'd be pretty much the same (in fact give me a packet of smarties and I can't stop talking - which is very rare while I'm in work!!!) - and no matter how much you mention that perhaps he's sensitive to x or y - they won't even give it a go. Although once again I'm not negating from those who have AHDH - I just think the term is too freely used. It is becoming very difficult for professionals to see the wood for the trees so to speak - and it does worry me where all this will end up. Hope I haven't offended anyone - it's just I do believe there are some hasty diagnosis/labelling being made. Take care, Jb

Hi Daisydot, Don't really have any advice but I know my daughter would struggle with their explanation - if she didn't have a specific reason given - she wouldn't know what she has done wrong and could therefore definitely not learn from it - this would probably cause a big meltdown for her. Take care, Jb

Kicking myself really hard I realised I'd left James behind - my one chance and I'd blown it. Staring out of the window I started to sob quietly - what a.......