jb1964

Hi Ichigo, just a quick reply before we have tea. I've shown my daughter your post and she's going to have a look on DeviantArt later to send you a message. I don't know whether you want to take off your account details from your post though just in case. Take care, x

Hi - yes my daughter also tried learning Japanese (speaking not written) but found it hard to concentrate. With the DeviantArt thing - she started at first by just viewing artwork she liked and then commenting on them - which sparked a small 'conversation' of such. It took a while to submit her own artwork as she was scared of negative comments (negativity is a big problem for her). As for the cosplay - we took her first to the Telford one which is quite small compared to London - she didn't dress up first time but was so impressed after her first visit - we were also very worried about crowds etc - but she was that focused on things of interest catching her eye that she was somehow distracted by the crowds (if you know what I mean). She had her picture in a cosplay outfit printed in the Neo mag a while ago. Also, even though her interests ease her conversation - last year at the London Expo - Billy West et al (Futurama voice overs) were there, although when it came to meeting them even though she had so much she wanted to say she was completely in awe!! I have shown her your posts and she asks do you have a DeviantArt account? Take care, x

Hi - my daughter is fine with animals that are quiet or careful - although she is petrified of anything that runs, is noisy or is fast or flighty around her. Take care, x

Hi - I notice from your interests they include anime and manga - my daughter doesn't come on this forum and until last year was petrified of 'talking' to anyone on the internet. However, because of her love of drawing especially japanese art we managed to persuade her to look at DeviantArt website - that was one year ago and over the months she started to post her artwork and slowly started to interact especially those that were specific to her interests (she loves Ace Attorney Phoenix Wright games) - and has the past couple of months even used Skype. She also loves the MCM Expo's and cosplay and has even agreed to meet up with some people next week in London (fingers and toes crossed that she's well enough as she's not been very well). At the moment she still struggles with everything from day to day but she finds it much easier to interact with people who have the same interests rather than 'small talk' conversation if you know what I mean. Hoping things work out for you too, Take care, x

Hi Mortisha, My daughter has x-linked PVNH (periventricular nodular heterotopia with the Filamin A gene affected) http://www.ncbi.nlm.nih.gov/books/NBK1213/ and http://www.lissenzephalie.de/pvnh_eng.htm Among other things it is associated with hypermobile joints but there is also a PVNH4 (PVNH with Ehlers Danlos variant). When we initially saw the geneticist she only had one other girl who presented with an ASD diagnosis - but now she has two and believes they are linked - also a PVNH support group I belong has quite a few children with ASD diagnosis or OCD/anxiety disorders etc. Take care, Jb x

Hi Trekster, My daughter also has hypermobile joints - we've just had an appt. today with the Orthopaedic Consultant as she's had problems walking since April(with her one knee) - he's said that her patella's ride high - he thinks this goes hand in hand with her hypermobile joints and the flexibility can cause inflammation and pain where the kneecap is bouncing around everywhere instead of gliding the groove. She's also had various blocks of OT to help with her hands (her fingers are particularly affected) and info on special equipment - she also had inserts for her shoes. Coincidently, HMS and EDS can be a variant of the genetic disorder she has which they believe is also responsible for her ASD. Take care, Jb x

So pleased for you Smiley - well done. Take care, Jb x

Hi A&A, I don't think that just an ASD diagnosis normally get high rate mobility - it's dependent on the individuals mobility needs which looks like your son is quite high. Take care, Jb x

Hi JCB - as Sally says I think the nursery will pick up on this and will suggest getting him assessed as they will want direction especially if he's in mainstream. As he's only 3yrs old and they can say/do 'odd things' and get upset etc - it's difficult really to comment on this. Hope you get some help from the nursery/gp soon. Take care, Jb x

Hi Jollypig, My daughter is 18 and also epileptic - this past year she is making some headway in explaining her behaviour after an event similar to what you mention. I'm not sure how your daughter feels about herself - but my daughter is very insecure, feels a failure at everything yet places high expectations on herself - she also thinks because of her behaviour she doesn't deserve anyone to love her or care for her and is also aware that she doesn't think the same as 'normal' people and this frustrates her. Very often if I ask my daughter to do something that makes her think that she should have done it herself without me asking her to do it she will feel firstly massively guilty and then useless for not thinking to do it herself - sometimes I also phrase things that afterwards I can see she's taken it as a 'slight' on her (if you know what I mean). I'm just wondering if your daughter also feels guilty because she didn't do it naturally as you or I would..... Take care, Jb

Hi Matt, Here is a link below for the NAS showing support groups within Wales - not sure which is closest to you - but we asked about the Caerleon one and unfortunately we were told it's full - don't know if the others have problems with availability. http://www.autism.org.uk/our-services/residential-community-and-social-support/social-support/social-groups/wales.aspx Take care, Jb

Hi Squox, does he have any other symptoms and it the tremor in both hands or one sided. xx

Hi 247, I know exactly what you mean but I have no solutions. We have a car so often she would go there should it happen but we've been in many many situations where a safe/quiet place hasn't been available and it is difficult. Take care, Jb x

Hi 247, My daughter is nearly 18 and showed aggression and self harming since she was around 7yrs old. Most of this surrounds times when her anxieties are increased - we might not have realised it at the time- but afterwards it becomes clearer what the cause was. Routine is a big thing for her which has got worse as she's got older - it is the one thing she clings to when her anxieties are high as it is the one thing in her life she feels she can control - also her OCD and anorexia tendancies also link in with this. We were once told by CAMHS that we have allowed her to use self harming as a coping strategy. My daughter has terrible scars and continues to use knives and scissors to self harm - CAMHS told her recently to make sure that the knives are clean first and that if she gets taken into the secure unit they will provide her with a sterilised self harming kit. It is very easy to judge parenting or motives behind behaviour - I have watched my daughter beg to die - being scared of her future and worry what will happen when we are gone. I have seen her covered in blood and using all her force to cut her arms, ripping at her face or smashing her head into a glass mirror - she does not respond to punishment, rewards or any known ideas given to us by CAMHS which leaves us in no-mans land. We do not give in to her and she goes without many things because of her behaviour - her behaviour does not improve if a reward is something she desperately wants - when her emotion overtakes her there is nothing that can be done. She has no friends, is socially isolated except for her immediate family and she feels desperate. I hope you get some help and that your daughter is one that is responsive to therapy or strategies. Take care, Jb x

Hi Smiley, My daughter is nearly 18 and has been on the pill since about 12yrs because of heavy irregular periods which caused her extreme distress because of the pain, irregularity and that she's petrified of blood. She's tried a couple and is currently on Loestrin 30 - originally they tried a low dose but it didn't regulate them fully and she had breakthrough bleeding which caused more distress. The GP's were really understanding and had many options available including injection etc. I'm sure if you make an appt. to discuss they'll come up with a good option for you. Take care, Jb x

Hi Mumble, My daughter takes after hubbie for her dry/dark sense of humour. For me being 'dry' isn't elaborate humour or a long funny joke etc it's a couple of words or one sentence that is said in response to a situation - something said, heard or seen. It's quite difficult to explain really - but it's like they have a different play on words when they hear or see something it can fire of a couple of one liners that is much deeper than in your face slapstick humour. Having a dark sense of humour can sometimes be a little near the knuckle so to speak - it could involve something that is considered delicate in conversation or people may think but don't like to say - although not always. Everyone is different in what kind of humour they appreciate - personally I love a dry witted person. Take care, Jb x

Darkshine - that made me smile - thought it was only our house that did that - although we didn't do the hamster thing though - he had his on little bath. Jb x

Hi, I can see others have mentioned the hair washing thing - my daughter was the same - the whole idea of bathtime for her related to one thing - hairwashing - which would raise her anxieties up massively as she knew what was coming - having long hair made it worse but having her hair cut was another major difficulty From having the water going over her head which frightened her to the massaging of the shampoo and then knowing that afterwards her hair would be all tangled and needing combing/brushing and also that the loud and hot hairdryer would be the grand finale!!! Also, scents, smells from bubble bath, soap, shampoo etc especially lavender makes her head hurt or feel sick - it would be plain bathwater with soap in a mitt (something very neutral like dove -she also didn't like holding soap in her hands) and not a strong smelling shampoo especially not fruity. The feeling after being in a bath too long affected her too - when your fingers or toes go crinkly and she was scared of having her nails cut. I found using a showerhead to rinse her hair off was better - temperature was also another problem - getting too hot makes her feel sick and too cold makes her scared - it was difficult to find a happy medium. We found that after a bath - giving her 20/30mins calming down time (she would usually feel quite faint afterwoods) before attempting to brush her hair or dry it helped. We also used the time in the bath to focus on something else - it became our time (mum/daughter) talk - she never opened up much or spoke much about school etc but that 30mins bath time would be our routine for her to tell me something that had happened that day however small. As she's got older (and she now has epilepsy) she showers which she copes with much better. Take care, Jb x

Hi Darkside, I don't really have any advice for you - but just wanted to say that your description makes me so sad - everything you've written has been described by my daughter. I wish I had something to help. Take care, Jb x

Hi Smiley - I can see from your other post that you say you can't have anorexia and also you're dismissing the BDD which I can understand - but whichever way you look at it you obviously have issues with your self image that are causing you distress. My daughter will be 18 in July - she has felt like this for sometime now although it would be hard to pinpoint when but definately at least the past 3+years. If I think about it I would say it started once she became aware of herself - that people in school called her names, spat at her, flicked food or stuck chewing gum in her hair, kicked her - said she was ugly etc etc - up until she was around 13 the children weren't quite so cruel or she didn't realise it was directed specifically at her. She self harms when she is angry or frustrated but has also tried to cut chunks off her stomach and face with scissors and knives when she is distressed over her image. She sees someone from the adult services once a month which is a total waste of time - they are struggling to find out whether it is her AS or something else and were hoping for support from the NAS but apparently this has now been on hold due to funding. She was ill last Nov and lost 1 and a half stone in 3 weeks - she has since lost another stone and is now 7 and a half stone and is tiny. I know that since losing this weight she is scared of putting it back on and watches everything she eats - planning what time she will eat and weighs herself regularly. Even though she is now very small she still thinks she's disgusting with a fat face etc. I hope you get some support with your problems. Take care, Jb x

Hi Smiley, Don't know anything about BDD but just wanted to say that my daughter has serious issues with self image. She thinks that she is disgusting and fat and ugly and she has become obsessed with watching programs like Supersize Superskinny. She too weighs herself regularly and has bouts of obsession with exercise. Hope things calm down for you soon, Take care, Jb x

Hi, We're not catholic but my daughter was confirmed at 12yrs - we went to weekly classes for about 8 weeks prior where they talked over different sections of the bible and her understanding was quite good - at around this time and following for a couple of years she read the bible daily although it did provoke lots and lots of questions that she found difficult to understand - but at the time it went quite well. Take care, Jb x

Hi Mumble - my daughter has this (diagnosed a couple of years ago)- she has it in most of her joints. I think it can vary from just one or two joints to nearly all and depends on how lax the joints are as to the severity of any problems. For my daughter, her knees and feet are the most problematic, which is expected because of bodyweight stress put on these joints - she also struggles with utensils or anything requiring strength and co-ordination. She got offered OT and PT but her anxieties got in the way and it's been put on hold at the moment. There are loads of gadgets out there for the kitchen if you find it difficult with your hands and also splints to help your thumbs/fingers. Have you been referred for OT? Take care, Jb

Hi Callum, This probably has nothing to do with what you're feeling - just wanted you to know that my daughter has epilepsy and has episodes apart from her seizures where her understanding/communication is impaired. The time involved can range massively and includes times where she cannot understand what is being said - she has said on several occasions its as though someone is speaking another language. She also has times where she wants to say something but cannot get the words out - her head knows what it wants to say but she cant find the words to say it and will just say like 'um' like when you're thinking of a word. She also finds herself in situations where she's forgotten what she was doing. Also, when she was seeeing the Neuro at the beginning before diagnosis - they mentioned that sometimes people with autism have episodes that are very similar to epilepsy like going into a trance and having lapses in communication leading to confusion - and they wanted to make sure it wasn't just that. Take care, Jb

Hi, Just wondering if this is sibling rivalry or something else that caused him frustration - i.e. you mention hitting in the car - his brother is 3 whereas he's 7. Three year olds can tend to be noisy etc and wondered if either the toys were annoying him (i.e. squeaking or musical etc) or the little one was shouting etc. Does your 7 year old cope well with noises etc. Take care, Jb