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Lyndalou

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Everything posted by Lyndalou

  1. Full time mum Getting paid for a job well done is very satisfying No
  2. Hi Alibird It must be very difficult for you to be stuck in the middle of your son and husband when they are arguing. It isn't an inevitable part of having AS although being strongly opinionated and wanting the last word can be very much an AS thing. Learning compromise and accepting that other people have their own opinions and needs are key skills (in my opinion) that are central to learning to get on with other people. If this doesn't come naturally then it has to be a conscious effort to do which is not an easy thing but can be achieved. How long ago was your husband diagnosed? Has he had any contact with support services or has he been offered any life skills training? He might not think that at his age he requires to do this type of thing but he is one half of the example your son has of what acceptable behaviour is. I know that last year locally, the NAS rolled out a course for adults with AS called 'Social Eyes' which was all about learning key social skills. It might be worth looking into whether something similar would be available for your husband. This type of thing can be quite thin on the ground for adults so it is worth looking. Does your husband accept his diagnosis and does he understand what his own issues are? There will be reasons that your son and husband clash and it's finding out what they are and heading them off at the pass or learning to deal with the argument and apologising for any poor behaviour. Do you know the signs that something is about to kick off? Do they know? You are right - this arguing needs nipped in the bud now before it gets out of hand. Your son and husband will get into a cycle of this negative behaviour and it will be hard to break it. Your son will see this as 'normal' behaviour and it could escalate - after all, dad does it doesn't he so why should he control his own outbursts? On days that I am feeling low or very anxious I have a lot less patience with both my children and my husband. I am very aware that I am my children's example and I really can't complain if my son or daughter copy me. We can't always get it right all the time but we do have to be aware of our actions on our children. If your husband is under pressure, if there are sensory issues or obsessive thoughts he is thinking then if your son is making a noise/jumping about/asking questions etc then he might have a shorter fuse to deal with this. At the same time, your son will be contending with his own problems and if he can't recognise what they are he is going to have to have adult guidance to help him negotiate those problems. Can you talk about these problems with your husband or does he refuse to acknowledge that the arguing is upsetting you and making home life difficult? I know there is also counselling for partners/families on the spectrum but I don't know if this is offered on the NHS or if you have to access it privately. However, I think certainly from my own experience that your husband just has to face up to the difficulties his AS causes (and this can be very difficult and painful) to himself and others and then he will be in a better position to make adaptations which will make his life (and ultimately yours and your son's life) less volatile. When I buy books, I tend to go to Jessica Kingsley Publishers. They publish a number of books about Aspergers Syndrome. Some books are written by professionals and some by parents who are on or off the spectrum about family life and AS issues or about living with an AS partner. Lynda
  3. Hi Liz You are going through a heck of a lot at the moment and it's little wonder your head is all over the place. You have just moved premises, you've obviously been struggling with certain colleagues and your boss and now your workload has doubled. What is the reason for your trip into work on Monday? Are you going to be speaking to your boss about your job and the pressure you are under? You obviously are extremely stressed and worried about this visit so is your therapist providing moral support and helping you put over what you want to say? I totally understand as I've been extremely stressed in the workplace and sometimes the anticipation of something happening is worse than the reality and then sometimes the reality just has to happen so you can get it over with and go on. Is there any possibility that you can get signed off work (probably best after you have made your visit) so you can try to get your head straight? Would you even consider looking for another job if your relationship with your boss is so difficult? I absolutely know how tough it is to look for another job when your confidence and self-esteem has nosedived but I found myself in a situation a few years ago where I was being bullied on the job, being refused training that I sorely needed and was given no support from my manager and I had to look for another job because it was breaking me. I was very fortunate that I found another job after a number of months of searching myself - I know in this climate there is no guarantee of getting what you want or need - but it would give you something else to focus on doing at least! All the best, Lynda
  4. Don't worry about this with regards to yourself Smiley. It hasn't been long since your difficulties were recognised and you received your diagnosis so in terms of 'Optimal Outcome' (which is essentially 'losing' your diagnosis whether you had it in the first place or not!) this report is not referring to you or how you 'present' as such. In the eyes of the professionals your diagnosis is valid as are the problems associated with AS.
  5. Lovely tat Watergirl! Really like it. I've always been too much of a wuss to get a tattoo but I've always had it in mind to get a copy of a picture of a warrior on a horse which is depicted on a standing stone from my home town. Alongside the butterfly, it is a motif that is ingrained into my mind and depicts how I've always felt I've had to be...fighting my way through life. I used to go to the museum when I was a young teen and just stood looking at this stone!
  6. I read the ASAN statement about the recent Fein Report - www.autisticadvocacy.org. In it, they discuss the narrow parameters within which the researchers judged the study participants to be 'cured' of autism. Firstly, I believe some of the participants were judged to have only 'slight' social impairment to start with by the researchers. How did they decide upon what was 'slight' social impairment? Was it that they chose children who were actively seeking out social situations as opposed to children who kept themselves separate from other children? Doubtless the study would not have included children with the classic 'in their own world' symptomology. I would warrant a guess that those children were also therefore more motivated to learn appropriate social skills from a young age and that there was a certain amount of 'copying' behaviour in evidence also from the early years. ASAN are very concerned about this report and I personally feel that it shows how little the scientific community really know about autism and how we learn and grow. One of the concerns which ASAN expresses is that there was no mention of differences in executive functioning, distress or mental health concerns, repetitive or restricted behaviours or interests within the autistics studied. The researchers based their decision that these 'former' autistics had lost their diagnosis based on the fact that they had made friends and 'appeared' to function within normal limits - much the same reason I was told that I could have been eligible for a diagnosis of ASD 10 years ago but not now. In my report there was no mention of my ongoing difficulties with friendships even though I have friends. There was also no mention of anxiety, depression and paranoia. On a personal level, I think this report reinforces the gulf between what 'true' knowledge of what autism is and what it isn't , who autistics are and what autistics can achieve and it makes me feel very sad . It gives hope of a 'cure' when the reality is that living with ASD can be very difficult every day even while at the same time we can achieve great things and are just as important in a different way to everone else....sorry - little bit of a soapbox moment .
  7. I think you have a fair point Canopus. The Scottish Daily Record has a front page spread today about the absolute lack of funding in Scottish schools. By all accounts (and you have to take it with a pinch of salt - it's the Record after all), the teachers are buying some basic equipment out of their own pockets because there isn't an adequate amount delegated in the budget to items such as textbooks and jotters. If that is the case it is appalling! I think that in this day and age computers are not just necessary, they are crucial. However, it's probably all within the '3 R's' ballcourt in that there is a huge reliance on computers (and calculators etc) now in order to source information and do work that there wasn't a generation ago and not so much emphasis on rote learning, the basics of reading, writing and spelling and memory skills. There has got to be something in it when Universities and employers are saying that young people today don't have certain skills that are seen as prerequisite to certain courses or careers. So, I think that more staff and more basic life skills training, emphasis on teaching good nutrition and providing textbooks should be brought to the forefront and computers should provide a more ancillary role not a central role.
  8. I think I go through spurts of 'reinvention' - don't know if this is the same thing or something similar. Since my teens I have identified (if you like) with the image of the butterfly because of the metamorphisis it goes through. I used the butterfly motif in my art work at Art College and I always have a few butterflies in various forms around the house. I used to think that the reason I was drawn to them was because of their beauty and how delicate they were but some years ago it occured to me that it was simply that they could change and that they could fly away. I never have a complete personality change. I simply copy bits of other people into my own personality or the way I look and I think I can trace this back to around the age of 10 when I started looking at the other girls and recognised that I wasn't as tidy or pretty, fashionable or popular. Up until this time it didn't bother me at all that I was mostly untidy and unkempt and that my nails were bitten to the quick. I had to wear specially made shoes all through Primary and it was only about this age that my mum allowed me to wear shoes like the other girls wore and I remember how happy I was to get the fashionable shoes the popular girls were wearing at the time although I didn't look fashionable at all in any other way so i still stuck out like a sore thumb!
  9. Hi Fleur This sounds like a very difficult situation you are in and I hope that the Ed Psych will help your son manage his angry outbursts. If you are on Facebook, have you heard of the Autism Discussion Page which is written by a man with 30 years of experience of working with children on all points of the spectrum? Just type in this into search and it should pop up straight away. To date, I have found most of his posts very useful. He writes very practical and succinct information about all sorts of problems which people on the spectrum can experience and there have been various pieces he has written regarding aggressive behaviour and the various triggers that can lead to aggressive outbursts. I have been very pleased to see that he always says that ASD explains various negative behaviours but does not excuse them. This is also what you have to try to remember - there are reasons your son acts in this way but it is far from acceptable. He needs to learn to vent in more appropriate way although it sounds like his need to control everything and everyone around him in order to feel 'safe' is overwhelming. This will take a lot of time and effort if he has got into a pattern of doing this repeatedly. I would also say that if much of his talk revolves around killing and violence then personally I would try to stop him absorbing as much of this type of material through his games and TV as possible. For instance, could he be encouraged to join a martial arts class where he could channel his aggression and learn self control? Best Wishes Lynda
  10. Well, I've been reading a bit more about 'Optical Outcome' or more to the point, the recent report which claims that a small percentage of children who have a diagnosis of ASD go on to lose it some time in their teens or early adult life and become indistinguishable from their typical peers (except for a residual problem with social functioning possibly). I know I 'should' be able to wrap my head around that one. In fact, I suppose I should jump up and down with excitement at the prospect that there are people out there who have all sorts of difficulties in childhood and then somehow, for some unquantifiable, not-quite-sure-how-it-happens kind of way....they just lose it. But only after years of intense intervention....hmmmm! Oh, and some of them have anxiety or depression instead of ASD. Maybe it's just that I reckon I am one of these people who have achieved 'Optimal Outcome'. Mostly, I look normal and if I hide it well, I act normal. Therefore, I must be...normal. Not to worry, I just have chronic mental health problems instead. Officially, I am 'sometimes' autistic. I am only autistic during periods of stress or when I am in un ASD-friendly environments. Anyone care to explain to me how I KNOW I'm in an ASD-friendly environment? Or how does that work when I'm pretty much always stressed? I asked a therapist 'So, am I autistic 6 months out of the year and am I consistently autistic for those 6 months or am I autistic one day but not the next or autistic in the morning but not in the afternoon?'. I guess this is 'Optimal Outcome' but who knows?
  11. Lyndalou

    new here

    Hi Bill Welcome to the forum! Lynda
  12. First of all, whether or not your concerns amount to 'anything' in the longterm, they are valid concerns that you have every right to bring up with your HV. It may be that your 3 year old is just a bit delayed and will catch up with his speech development or it could be that he does have some kind of speech disorder or delay associated with ASD. Either way, if you can get a Speech Therapist involved as soon as is possible then it will aid his development. I totally understand that you must be worried, especially as you are having such a hard time coping with Jack but it's maybe best to try to not get too ahead of yourself. Ask for advice - since Jack is currently undergoing assessment for ASD it is a perfectly understandable and appropriate thing to do if you are worried about your wee one's development - and if it is flagged up then the professionals are in the loop and they can advise if it's likely that he needs to be monitored. The fact that you are seeing possible similarities with Jack in itself could mean something but you have to also bear in mind that everyone with ASD has different difficulties to different extents. <'> Lynda
  13. Hope your partner got home safely and that you managed to get some of your knitting done? Sorry you had a panic attack this morning but it sounds like all-in-all you coped really well .
  14. Other thoughts... There's a group which meets that is for children more of your son's age group on a weeknight in our nearest city. They meet in a Secondary school so have access to a large sports hall and they have a sports coach who comes along and teaches a bit of basketball and other ball games. I think they might get local authority funding for rental costs and to pay the sports coach. I looked into my son possibly going to a gymnastics class. He is only 5 and he has a lot of problems following instruction so it's not for him meantime but the gymnastics coach told me he had some boys with ASD who attended his school who were a bit older. I have also considered trampolining. I also looked into the possibility of group music therapy/music lessons. There was no-one locally who provided music therapy (that I could find) but I was put in touch with a music teacher with a number of years of experience who currently comes in independently to teach a couple of pupils at my son's school (again older kids). My son now does individual lessons with her and she is great with him and very patient. She really mixes it up with him him to try to keep his interest and has done things like move the reading light off the piano which was distracting and upsetting him and understands when he has to 'plink' the top key after everything he does! Perhaps there is a similar person youu could access to do music with the kids?
  15. Hi Heather Just have a few thoughts... Don't know much about what EBD schools provide but I'm assuming that there are rooms for chilling out in...music rooms or sensory rooms/snoezelens, outside and indoor play areas etc? I'm still not entirely sure if you are thinking about a lunch club throughout the school day or on weekends and the reason I'm making a differentiation is that I know that at my son's school, a lot of emphasis is placed on mealtimes and the social aspect as well as encouraging the kids to try different foods if there are sensory issues so I don't know if you would be able to have a club during this time at your son's school? There is a local school near me where a weekend club meets for kids with Special Needs overseen by the Social Work department. They have the use of certain rooms including a sensory room used by the school special unit and have access to outdoor areas on nicer days. My son has just been referred to this. I wonder if you could negotiate something similar with the school or get the Social Work department in your area involved? There would possibly be the question of liability so I'd imagine there would have to be some kind of contract for use of equipment etc if you were meeting outside school hours....not quite sure how this type of thing works, sorry! I have also quite recently been involved in an activities group locally. We have used various venues for various activities so we have conformed to the rules laid down by each individual venue. Our central activity was a free gym play activity (exclusive) which was held within a large room with padded cushions on the floor and various gym equipment including balance beams, assymetric bars, trampolines and springboards. It meant that the children could spread out and do their own thing or come together to play as they wanted. Bowling was also something we have done which the kids enjoyed although the noise was an issue. We had to ask for the music to be turned off for instance - my son really struggled with this. Again, it's an activity which they can do side by side as opposed to having to play 'together' as such. I negotiated craft sessions with a local ceramics workshop and discussed the needs of the kids and what we wanted to achieve at length. 'Closed' sessions were decided on so there was no disruption and the kids could be given the chance to focus for as long as they were able with instruction given by the owner. She had equipment that would be suitable for children with dyspraxic issues etc. Swimming is also an activity that was decided upon (again a closed session). My son's school has a pool attached so perhaps your son's does too? However, I would think you'd need qualified lifeguards on duty so possibly it wouldn't be a practical suggestion. Various people can be approached for money. If you were needing funding to do trips out in a minibus to a park or the seaside you might be able to ask Rotary clubs or Round tables for money. We got some money donated to us from a local Playgroup even. There are also various charitable funds which you can apply to for specific reasons so you might want to go down this route too? Lynda
  16. Hi Gareth Welcome to the forum and for your introduction. It's nice to know a bit about you and hope you enjoy your time here. I've edited your post (slightly) as it's best not to give out too much personal information as this forum is open to non-members to view as well as members. Best Wishes Lynda
  17. Hi Mike We probably don't see it all but there are certain things like what you are talking about - members posting too much personal information and various issues that may be upsetting to other members - which when seen or when our attention is brought to it, can be edited or moved by the moderating team. Members are contacted to let them know the reasons why certain decisions are made. The idea of an over 18's area (private) has been discussed quite a lot recently but as it stands there are no plans for this to be put into effect. I'm not sure if a screened area for members only has ever been discussed but can let the other moderators / hosts know of your suggestion. Please flag up anything you think is of concern Mike in future (and anyone else!) and keep the comments coming. Lynda
  18. Turns out my lil girl likes waterfalls as much as her brother does! Lots of 'wows' today! :-)

  19. Hi Heather and welcome to the forum. I hope you enjoy coming onto the site and that it is helpful for you. You must have had a real fight on your hands all those years trying to get your son diagnosed. It must be a relief to finally 'get there'! Are you thinking about a lunch club at school or outside of school? Do you know the other parents and what do they think about your plans? I'm sure that there are lots of ideas that could come out of discussion with them. There will also be funds you could access if you had overheads you needed to cover, I'm sure. I'll have a think and get back to you. my children are needing their bath! Lynda
  20. Hi Noskcaj I can't remember if you've seen anyone for continence advice or not? I know this came up before and it's really good to hear that there are times that Jack is dry! However, if the school are taking him to the toilet as frequently as they are then I would suggest that they are 'catching' him and it might not be necessarily that he is recognising he needs the toilet. Is there any way he communicates to let you know that he might be needing a wee? For instance, my son jiggles about, can't seems to concentrate and makes 'funny' noises. I can ask him if he is needing to go to the toilet and often he says 'No' so I'm not convinced that he always knows when he needs to go although at other times he asks to go, often when he is desperate. So, a lot of the time even if he says 'No' or is a bit unhappy about it, I tell him I'm taking him anyway and he can be pretty relieved when he pees! It felt like a backward step to put my son back in nappies to poo in but we decided to do this some time ago but only again if there are 'signs' he might need to poo. This is because he refuses to poo in the toilet and after 2 months of hell with he and I literally at screaming point because I was determined to get him fully trained, it was a case of choosing our battles and trying to get things calm again. Normally, he goes in nappies after dinner because this is the 'normal' time he goes but it can be straight after school. We don't call them nappies though, we call them 'poo pants' so he can distinguish them from his 'normal' pants and they are only for pooing in and for overnight in case of accidents. Maybe there are times when you could use the compromise of nappies, if you are out and about and it won't confuse Jack. It could be he is wearing 'out and about' pants or something. If you are trying to juggle the other kids and deal with other behaviours Jack has, this might just take the pressure off. Other times like in the house try to take him 10-15 minutes after he's had a drink for example or when it 'looks' like he might need to go. Remember that he might not really know himself! I try to keep a close eye on what my son eats and drinks and at what times to try to keep some regularity and to try to predict when things might happen. I know this might be tricky for you but it could be worth a shot! Lynda
  21. You sound a bit calmer and more in control right now? I'm glad you had a good chat with your partner and maybe that will be helpful...a bit of 'normality' - him doing his thing where he is and you doing your thing where you are! You've got a plan for tomorrow and that's great too. It's definitely something to focus on and keep any negative thoughts at bay. Well done for finding ways to get through a hard time .
  22. Hi Nicolax Welcome to the forum and hope you can find some answers and support here. In order to obtain a diagnosis it will have to be established that your daughter has problems across what is called the 'triad of impairments' which includes problems with Social Imagination, Social Communication and Social Interaction. The best place to start for quite a comprehensive overview of what ASD is is probably to go on the National Autistic Society website. Obsessiveness and repetitive behaviour can definitely form part of having an ASD as is difficulties with making friends and resultant bullying. Mental health issues (including paranoia) can be common problems that can exist alongside an ASD although they are technically not part of the condition. However, there are a lot of other issues that will have to be present too but from what you say there must be enough of those issues present for CAMHS to be considering it. The main thing about your daughter getting a diagnosis is that it should open doors to her getting more of the support that she needs. It also means that you (and she) can start to understand why she might act and react in the way she does and help you to learn ways to cope with the difficulties associated with the condition. There isn't a great deal of 'formal' literature out there about girls with ASD but more and more is starting to be written. Jessica Kingsley Publishers publish a variety of books on ASD's in general and women and girls with ASD in particular. Best Wishes Lynda
  23. Hi ebichu64 Is there something that you've thought about doing for a while but you've never got around to doing? This might be the time to do it when you can emerse yourself in something that takes up your whole focus and attention. It might take your mind off being on your own during the day. You are doing all the things that I would do which is switching off the phone at times you know you won't be getting a call from your hubby and locking the doors. Maybe stick a sign on the door saying 'Please don't ring the bell' or 'No callers please' to discourage people turning up unexpectedly too? I know I can be a bit uneasy when I'm here on my own overnight. I might keep certain lights and the TV on. Hope you are managing to keep calm right now. I really hope that on Thursday the doctor gives you something to help get these attacks under control because it must be so frightening for you. I know it's not much to suggest but have you tried camomile tea - I find this quite relaxing - or milky drinks like Horlicks? I've cut right back on my caffeine intake too which has helped my anxiety levels a bit. Do you have favourite smells that calm you? For a time I slept with my husband's T-shirt (a bit sad I know!) but it had his scent on it and was reassuring. Hugs, Lynda
  24. The guy across the road running his power washer for about 3 hours solid today....drove me nuts! The weird 'whine' of our Sky+ box - drives me insane! My daughter's lamp!
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