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Lyndalou

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Everything posted by Lyndalou

  1. On a more positive note...my lovely new boxes have arrived so going to have some fun tidying up the office :-)

  2. Well done on your venture and thanks for posting. My son did some horse riding at the age of 3. We did it to try to get on top of some of his sensory difficulties and he did enjoy riding but not enough to carry on after a break but it's not for everyone! It was very helpful for him however in starting to learn to tolerate things he hadn't done up until that point so I would encourage anyone to give it a go. Let us know how things go and stick around to read the posts
  3. Stuffed has posted here about his current situation on another thread.
  4. Could you appeal to his sense of logic at all Bed32? When he says things like 'I will always win' could you explain to him that this is not an entirely accurate statement by using examples of when you have been successful in something or instances where other people have 'won' (got better grades at school or achieved something he hasn't)? I'm not in any way suggesting you attack his self-esteem but just that you explain to him that it is impossible to win all the time and at everything. Also, why does he have to win? As a child I never liked to be 'beaten', whether it was a spelling test or singing the loudest or winning a running race. Truth be told, I'm still the same. However, I was always compliant and always followed the rules, unlike your son. I challenge authority much more as an adult. Perhaps his rules are much more internal ones where everyone else goes against those rules and if he sets the rules then he is likely to always 'win' in his own mind? If he likes to win but when he goes to school against his will he does nothing all day, how can he expect to keep 'winning' if he doesn't do the lessons? 'Winners' need to learn in order to keep up their game etc.... Maybe he needs examples of people and what they have had to do in order to achieve what they want to in life. Even if gaming is his principal obsession, if he wants to work in computing in the future then logically he needs to learn other things and do what other people want (at school, uni and the workplace) in order to succeed and even if he says he'll be an entrepreneur and doesn't need all those things, how does he logically expect to get anywhere if he can't do all the things he is required to do to run a business? I know he's only 9 but he sounds like a bright boy and he might start to 'get' that he's actually harming his present and future chances if he continues to fight you at every turn?
  5. After a gradual descent over the last few months and a plunge over the last few weeks, I have now achieved the accolade of complete social pariah locally. Very very upset :'(

    1. Lyndalou

      Lyndalou

      Think I've used up my empathy quotient tbh but you never know :-/

    2. matzoball

      matzoball

      You need to go easy on yourself - just give yourself some time.

    3. Lyndalou

      Lyndalou

      Thanks Matzo - that means a lot :-)

    4. Show next comments  9 more
  6. There are some excellent books out there, written by adults on the spectrum. One way my life has changed for the better is that now I understand my sensory difficulties much better. In fact, again it just didn't occur to me that it was in any way unusual to hear tiny noises or to freak out when my feet get wet (in shoes) or I get very upset when the wind whips my hair. I just thought I was very short-tempered and a bit irrational! My mum can sniff out (quite literally) almost imperceptible smells so I thought I just got my keen sense of smell from her and it again was quite normal. It turns out that I have quite marked sensory difficulties (confirmed by an OT) but without me investigating it I had no idea! It has made some positive difference in controlling my anxiety in these areas and as some of my son's sensory difficulties correspond with mine somewhat it means I can be aware of things in the environment which might or does affect him - if I didn't know that I know my life would be more stressful than it is. Also, just knowing the differences in how a person with AS views the world (not that I didn't know I had certain viewpoints and ways of thinking before) from so-called NT thinking has helped me pinpoint all the various difficulties I've had in my personal and worklife. Good luck with your trip to the GP.
  7. Hi Bed32 I hope this comes over the way I intend it to first of all. I feel there is a big difference between a child with ASD being resistant to doing something due to the fear it may engender (and by that I mean, fear of what they are requested to do because they have ''performance anxiety' or of the activity being frightening in and of itself) and not wanting to do something because they are requested to do it and they don't want to do it and they are able to manipulate situations to ensure they don't. I am aware that PDA is now considered a stand-alone diagnosis in it's own right (and I'm not going to say I know a great deal about it because I don't!) and I acknowledge that there must be a subgroup of children to which this diagnosis MIGHT apply. However, I sit on the fence as to whether it should be applied to the majority of children who exhibit this kind of behaviour. I believe children with ASD can manipulate situations to their own end although fear can be a dominant factor in the reason for this behaviour. I was able to quietly steer things in the direction I wanted things to be as an older child/teenager and could be quite underhand. The only difference I see between what you are describing and what I am describing is that your son is using more overt means and I used more covert means to get what I wanted. At 5 my son already is quite vocal in remonstrating against what he doesn't want to do. At the moment he makes a lot of noise about being encouraged to dress and undress himself. There is often a lot of lying about on the floor, procrastinating, screaming, huffing and the rest. The school agrees with me that he is capable but just doesn't want to do it as he'd like the easiest option; ie. me doing it for him. He just doesn't get that option. Unless he is very tired and/or we are in a real rush he MUST attempt to undress or dress himself. I know your son is a bit older and the sanctions are limited but I feel strongly that there are certain rules he must adhere to or certain things that are non-negotiable within a parent-child relationship. Other things can slide (a bit) and you have to choose your battles wisely but your son has to know that you are in charge and not him. Otherwise, you will become a walkover and things will only get worse! I think even the fact that he recognises the sanctions are limited is very controlling. I would gradually try to incorporate 'healthy' activities into his routine that perhaps he doesn't want to do. Lynda
  8. Hi Juls Maybe you could give this lady a call? www.valeriesutherland.com I have spoken to her myself in person although I've not used her services. She provides a counselling service with a specialism in working with younger people on the spectrum. My understanding is that she has children on the spectrum herself. It is private but if the NHS are unable to provide a service for your son which meets his needs it might be worth considering. However, having undergone counselling and other forms of therapy myself in the past, I would suggest that doing 'general' counselling is helpful but I would agree that a more specific approach using knowledge of ASD would probably be more useful for your lad to help him learn to control his anxiety. It does sound like the professional wasn't clued up 'enough' if they invited another person to be present at your son's first meeting. I'll be pming you later. Lynda
  9. Can I ask? Why is this piece exclusively about living with a husband with Aspergers? Why not a partner of either sex who live with AS or same-sex couples? I would hope that any piece would show both the positives and negatives and explain what living with AS is like in sympathetic terms from the standpoint of both the partner and the person with AS. There are those who have successful partnerships and those who don't and having difficulties (like in every partnership) may not simply boil down to whether or not one of the people within the relationship has a condition which stereotypically (often) assumes that they cause their partner distress or makes them a difficult person to be around. Best Wishes Lynda
  10. I would resist the temptation to call his crying 'fake' even if it sounds like it is. For years my mum told me to stop 'putting on' on a laugh and this was not the case at all. It can be difficult for children with AS to gauge how loudly or softly to speak or even how to laugh! It sounds really like your son is looking for sensory input, even with the biting although this must be incredibly hard to deal with! If his pain threshold is so high, he might simply not 'feel' things the way you would expect so he's trying to in what seems like disproportionate ways but probably not to him. If he doesn't understand emotions and facial expressions, this might be why he is laughing at you when you are in pain yourself, not that he is being mean or nasty. Every time my son makes my daughter cry there can be a different reaction...he might put his hands over his ears and scream if he didn't expect the noise or he might laugh because he thinks her reaction is funny. It is explained to him every time that she is crying because he has hurt her or given her a fright and she is upset and he has to say sorry too, even if he didn't mean to do it. Sorry for short reply - should be getting ready for school!
  11. Still don't know what DP means . Without a diagnosis, I have still been able to learn a lot about what my problems have been and what they are. I learn something new everyday. Sometimes, it's a 'Wow' moment and quite joyful and sometimes I feel a profound sense of sadness, especially with regard to very difficult past experiences. My emotions are not stable at all at the moment primarily due to not being able to gain a diagnosis but that's just me and not you.... Being bullied at work has always played a significant role in my life. I think I got so used to it that it became 'normal' and perhaps this is the same for you? However, it's not acceptable to feel unsafe and on edge in the workplace and as being at work accounts for many hours in the day perhaps this is a good reason to request an assessment for diagnosis? I know it's the principal reason I wanted an assessment at first as work has always formed part of my core identity and how I feel good about myself. It was only as time went on that I realised that the struggles I have in other areas of my life are not that 'normal' either but again I am so used to the struggle (and it's very difficult to gauge how my own struggles compare to other people's struggles) that I didn't even consider them to be of much importance. You have to decide if a formal diagnosis would assist you in dealing with your own particular struggles. I personally don't think I would be able to access any more tailored and specific support than what I have done in the past in order to deal with ongoing mental health difficulties but in some areas this is possible and services and support are growing (slowly). My own wish is for validation and raising awareness of exactly what ASD is, partly as my son is on the spectrum and I would be fighting for a more equitable world for him and partly for younger females to be recognised at an earlier age than many still are. Best Wishes Lynda
  12. Hi Amy Welcome to the forum! It is a personal decision as to whether you think pursuing a diagnosis will be helpful for you. I am self-diagnosed but not really through choice - I have actively pursued a diagnosis but have not been successful. Diagnosis for adult females can often be a difficult thing to achieve and the diagnostic process can be an emotional rollercoaster, before during and after (although I do know and know of people who have been diagnosed reasonably 'easily' and the diagnosis has not made much difference to their lives) so you need to be sure that you want to go through it and that you have support in place. Sorry, does DP mean your other half? I think 'mild' as a description for level of functioning is very misleading. If you read the various anecdotal evidence written by females on the spectrum and also the research of people like Lorna Wing or Tony Attwood, you will see that all through life many (not all) females may demonstrate a 'subtler expression' of the symptoms of AS in relation to their 'male counterparts'. However, 'subtler expression' and 'mild' are not the same thing. It is believed that many females internalise rather than externalise their confusion or distress and that they can learn to be 'good' rather than act out in order to try to fit in with other women and that there are more 'controlling and passive aggressive' aspects to their character rather than physical aggression. This is certainly the case for me and for many women on this forum. Look up www.aspergersgirls.wordpress.com . I must admit that (for me) everything this woman blogs rings true for me. Lynda
  13. Our new addition to the family...Sugar the hamster :-)

    1. Merry

      Merry

      What does he look like? Is he friendly so far?

    2. Lyndalou

      Lyndalou

      She's still a bit timid..still at the early handling stage but not bitey. She's black, brown and white and poops for Britain ;-)

    3. Merry

      Merry

      :) Sounds very cute!
  14. Hi amberzak I think the main decision you have to make is do you really WANT to be a teacher? Is it what you really want to do? If it is, then accept the help you are being given and try not to feel guilty about it. I'm not going to pretend that I like people to think that I can't cope or fulfil my duties when I'm in the workplace but tbh, if I could access the help then in future I would, knowing how I have struggled. From the posts you've made before, it sounds like you are a committed hard worker and that you've been willing to put the effort in to be as good a teacher as you can be. Even if at some point in the future you decide to give up teaching, would it not be best to finish your training and get your qualification and THEN decide what direction you take? Keep going. You can do it! Hold onto the great feeling you had today when that little boy said he enjoyed his lesson. Lynda
  15. Still working for me Smiley - does take a while to come up though! I think the 'Maternal Bond' bit is quite like the 'Empathy' argument, I think we have it and demonstrate it in a different way than is percieved as 'normal'. I looked up what 'Maternal Bond' means and the general jist is that you 'act in a motherly way' or have 'a motherly bond' with your child. Absolutely no more explanation than that! To me that means nothing. I am a mother but I know I do not (some of the time) act in what is considered a 'motherly way' if I compare myself with many of the mothers I come in contact with. Often, if my children cry, practically I know they need attention and I know they need help but my first reaction is 'make it stop' (the noise), then an analysis of the situation (I suppose a bit like triage in A&E) and then the emotional part kicks in. It can take anything from a couple of seconds to half a minute. Is this a lack of 'maternal bond' that I do not immediately feel their pain or know their needs? Often too, if I see rather than hear an incident or accident I act quicker and feel the emotional response quicker too whereas I think 'normally' mums are programmed to hear the crying etc and react (?). It's only a hypothesis though. I cannot stand 'schmaltzy' and 'cheesy' quotes about kids that other mums do; to me it's sentimental rubbish and means nothing. It made me feel nauseous when there were mums on my fb page who made a huge song and dance and talked about sniffing their way through a box of Kleenex when their children went to nursery for the first time and they felt 'bereft' about their 'babies' going off on their own. Is that having a lack of 'maternal bond'? Yet, I'll fight for my kids tooth and nail and ensure they are as healthy and happy as they can be, their bodies and their minds are exercised and they are given every opportunity to grow into balanced, educated and respectful individuals. I'll research every ailment, try to ensure communication with the people I need to work with on my children's behalf is kept open and steady, keep them clean, feed them well and try to be respectful of their individual personalities. Is this lack of a 'maternal bond'?. I really think it's all in the perception...
  16. I don't think I've come across a much better article than this. Well written and evocative and tells it like it is...especially the part about nobody listening. http://www.thestar.com/news/investigations/2012/11/17/the_autism_project_mothers_with_asd_ask_why_scientists_are_missing_girls.html
  17. Aspie Village is a UK based forum. I know someone who uses this forum and they go along to meetups which I believe are arranged throughout the country from time to time and (I think) there's also live chat.
  18. I know it's not quite the same thing but I have hypermobility in my joints and I get a lot of back and neck pain because of it. Last night I was kept awake because of my wrists and fingers and ankles playing up! It was confirmed by the chiropractor I see but it's probably not bad enough to be classed as Hypermobility Syndrome. What the chiropractor does is quite similar to the treatment you get from a physiotherapist (or at least the end result is). Is it worth asking for a referral from your GP to a Physiotherapist who might be able to help you control the pain you are in?
  19. Has Jack ever been under anyone for his bowel problems, like a Paediatritian? For instance, have they given any idea how you could manage his 'episodes' and what could be causing it? I can totally understand why you are so frustrated with the school being unhelpful - it's really disruptive for you and Jack. Have you thought about getting him tested for any food intolerences? I'm not sure what else to suggest really but are you still considering looking into getting Jack placed at another school?
  20. Special It does sounds very confusing! Have you written down a list of your symptoms so that you can show them to the doctor? It can be really difficult to remember everything you want to say when you go to the doctor. My dad was back and forward to the GP for 2 years with all sorts of strange things and after 2 years he was sent to a specialist who 'joined all the dots together' and was able to say he had a condition which is pretty rare! What I mean by that is that you might be having all sorts of problems but on their own or even some together it might look like you have another problem than Ehlers-Danlos. However, even symptoms or problems you are having that you didn't think were connected or important when added together with other symptoms could provide a different picture for the doctor. It's often like solving a big puzzle. Have you asked anyone to support you or help you with trying to get this diagnosis or are you doing it on your own. It might be good to get help and maybe ask for help from an Ehlers-Danlos support group to find out the best way to go? All the best Lynda
  21. Hi Special From what I can gather from having a look at some information about Ehlers Danlos, it looks like it can be quite difficult to diagnose! However, I think that they should be telling you what they are testing you for - it's your right to know! It must be frightening that your GP and the specialists say different things to you. However, a lot of the times, doctors (GP's) only have a set of symptoms to refer to and only have a limited knowledge of many many conditions so sometimes it's only their opinion or best guess. Specialists are just that; they know a lot more about a specific set of symptoms than a GP might in the fielsd they specialise in and this is why you are referred on to them from your GP. However, if things are really hard to diagnose or very rare they still can be making a best guess based on their experience and knowledge and don't always get it completely right! Lynda
  22. Oh no! This sounds like a toughie. As Jeanne says, digestive issues can be a part of having an ASD but it doesn't affect everyone is my understanding. However, I think that it may be worth considering that the bowel problems COULD be anxiety based and/OR have a physiological reason. Fear can loosen your bowels and also make you pee yourself.
  23. He's maybe associating the shop with new cars and cakes and anticipating it before he goes. Although you stay calm and explain to him at the time that he isn't able to have those things, he might not be able to understand this. Last year while on our holidays (in Wales!) my son had a terrible meltdown in the street. What set it off was that his dad had allowed him to climb onto a wall and have a walk around it so a bit further down the road he wanted to walk on another wall but as it was a garden wall we wouldn't let him climb on it. He was already struggling as it was a new town, we'd dragged him around the shops and he was a bit tired and now we wouldn't let him climb on a wall. He didn't see the difference between the walls and it didn't matter when we tried to explain the difference. These days, I try to anticipate these types of things and provide warnings or tell him what is going to happen ahead of time if I can. It also helps that he's now a little older! Maybe you can 'transfer' the idea of a car or cake to another 'treat' if you go to the supermarket and talk about it before you go, even as early as when he gets up so he gets used to the idea. Something like you will go to the park or he can have a nice pudding at dinner but change the 'treats' each time. This might break the habit that's been formed....just an idea!!
  24. Is there any other shop you can go to if you think it's the shop itself that's making things difficult for Jack? Even if it's just to go to another store to see if the same thing happens there? I know someone mentioned internet shopping before as an alternative - do you think that could be an option too? I know that when I did it for a while it had it's pros and cons in that quite often you got stuff that was almost at the sell by date and you couldn't be on the look out for bargains but it was straight to the door with no stress of buses and walking for miles with heavy bags!
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