Lyndalou
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Posts posted by Lyndalou
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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
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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!
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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
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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
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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
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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...
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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.
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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.
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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?
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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?
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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
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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
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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.
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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!!
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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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Can anyone go with you into school Arno to speak about this suspension? Could your parents arrange something with the teacher of the class or the Headteacher? I can understand that you are very upset about this but have your problems with the class (the chaos and noise) ever been fully discussed with the school. I warrant a guess that it was more that you appeared very aggressive and became quite violent (towards the door) that has landed you with a suspension EVEN THOUGH you feel fully vindicated for becoming so angry.
Often, we become angry because we are trying to keep in check all of our emotions, get confused about why we are getting so upset and like you, if you are trying to get away and can't then things reach boiling point very quickly. Is there anything in writing that the school is meant to provide in order for you to be able to keep calm, concentrate and not become overly anxious?
The question still remains as to how to go back into that classroom after this episode and I absolutely agree with Oxgirl that sometimes you just have to fight the fear and face the difficult situation. However, I think you need to fully discuss your current problems with the school first. I have been in similar situations and it is terrifying but it often is the only way to learn to deal with it. I do think though that you would need to apologise to the teacher and the other student before any resolution can be made. This is not saying you were entirely in the wrong but all sides in a disagreement need to take responsibility for their own actions (even if other parties do not apologise) and this does not make you look weak, it actually shows that you are a strong person to address your own difficulties.
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Hi John and welcome to the forum
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Hi again
Of course you are worried and it's totally understandable. You are in a situation that is totally new to you and experiencing things that often don't form part of 'normal' parenting. You are seeing your other kids having difficulty coping with the behaviours your wee one is showing and his little brother is getting attacked. Do the twins share a room? Is he actively seeking out his brother to bite him or is his brother coming near and being bitten? It does sound like it's getting very hard to handle so I do think it's a case of trying to see in what situations the lashing out or biting is happening in order to try to minimise it. These behaviours will be caused by something but they can also just become habit and if it provokes a reaction it could be that that is the reason...he might simply like watching the reaction on his brother's face, not necessarily to be 'bad' but just because it's interesting (my son used to do this a lot and still does sometimes). Or it could be that he gets too near and 'in his face' and it's a way to get space back. However, you can't have your other children getting hurt. My son went through a 'bitey' phase but I think he was a bit older. I must admit that explaining to him did no good and he kept on doing it and one day he bit down hard on me and I just reacted and bit him back. I'm not advocating you do this tbh but my son didn't bite me again!
I can also understand that you don't want to worry your family. It probably wouldn't hurt to speak to someone you trust though as simply going through the assessment process can be hard and it would help to have some emotional support. I took my mum to a couple of appointments during the assessment process and both sets of grandparents are kept informed of developments as they happen now.
If you are on Facebook you might want to look at the Autism Discussion Page - you could read the information and there's no need to comment - and the author has had a lot of experience of working with children across the autistic spectrum. There are a lot of other pages on there too but some are complete bunkum from my point of view but I've no qualms about advocating this page.
Lynda
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Hi Jayone
Unfortunately, I was turned down for an assessment for a formal diagnosis - a mixture of the GP thinking she could 'diagnose' me and then passing her views onto an unsympathetic Psychiatrist who disagrees with adult diagnosis and a consultant who has limited understanding of how AS can manifest in females - so I'm self-diagnosed.
Part of the reason I'm strongly advising you to get all the information you can and get support is because of my own experience. However, you already have had a professional involved who has formed an opinion based on their work with you and tests they have conduced so you stand a good chance of having your concerns taken seriously - if you could get the report the CPN did then I think that would be helpful too.
My son was diagnosed with High Functioning Autism at just under 3 years old. This is what led me to researching ASD in general and then ASD in females in particular. In some ways my little boy is very different to me; he has a speech disorder and uses a lot of echolia whereas I was a precocious speaker (I was still echoliac though and drove my mum mad!) but in many ways he's very like I was as a child like with his musical ability and being sensory-seeking in terms of jumping, swinging and spinning. What led me to seek an assessment is that I had been looking for 'answers' to my problems for a very long time and suddenly, in front of me I saw a description of myself!
A lot of the assessment for ASD is based on early development and normally this requires some input from parents or other significant adults. It has to be 'proved' that the onset of symptoms was before 3 years of age - things like repetitive behaviours and 'unusual' play and/or lack of imaginative play come into account. Again, you can find all this information - it comes under descriptions of the 'Triad of Impairments' - on the NAS and other websites.
Prepare well and be clear about the difficulties you have and you can do no more!
Lynda
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Hi Jayone
If you go on the NAS website there is information on it about how best to approach your GP if you would like to request an assessment for Aspergers. You are able to print out this information which you can then take along to the GP with you. However, I would suggest that it might be helpful to take someone along with you to the appointment if you think you might not be able to get over what you want to say. I make this suggestion because I took this information to the GP and it wasn't even looked at - unfortunately GP's may not be particularly clued up on what Aspergers is and how it appears in adults. If you have been under mental health services for anxiety and depression, you might have an advocacy service in your area who could provide an advocate to go along with you to the appointment. You would need to meet the advocate first though if you wanted to do this as they would need to discuss your situation with you so they could support you in a helpful and meaningful way. When you make your GP appointment, you might also want to consider asking for a double appointment if you can so you can speak without feeling totally rushed. At my GP surgery your appointment 'slot' is 10 mins but you can discuss a lot more and be much more thorough if you have 20 mins! Remember, that the GP is NOT the expert. They might have had some experience of working with people with ASD or they might not. Either way, they refer on to the professionals who can assess you who have expertise in the field.
All the best
Lynda
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I must admit Gary, I find this quite difficult with regards to trying to think of adaptations which could cover a wide range of issues affecting those with ASD. Perhaps it's because it's open ended and I'm not quite sure where to start.
If there's one thing that I would probably think straight off the top of my head is the strip lighting you find everywhere (maybe not quite so much now?). Our kitchen at home is quite dim - it is to the back of the house and doesn't get much natural daylight. We deliberately went for 'daylight' bulbs which I've found do replicate daylight quite well and don't have a buzz! Every workplace I've been in and most shops seem to have flourescent strip lighting and they are awful...glaring and buzzing... which does make you more stressed than you need to be!
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Hi Mummyof 6
Welcome to the forum. I hope you manage to find some answers and support here.
Do you mind giving an indication of where in the world you are? From what you are saying, you are doing everything right by following up with the Paediatritian for an opinion and advice.
Something that jumps out at me is the fact you say your son has always been very independent and never stays still. I can't relate to the regression you describe with regards to body contact and speech but my son was always very 'independent' and never stopped moving from very little. At this age he repeatedly did puzzles (which he was very good at) and became interested in making 'lines' on the floor of his toys or household objects. He also began to 'stack' things and could get very upset when things wouldn't balance etc and was always very interested in switches and buttons at the same age as your son. I am mentioning these things as you may be seeing some evidence of this which can be interpreted as not playing in a 'typical' manner. My son also had very limited pointing and waving and would tend to tug on a sleeve and direct to things he wanted rather than indicate by pointing.
If your son has had a number of health issues from birth then this will have to looked into to see if any problems have been caused by this although what you are describing could also fall under some of the symptoms of ASD.
Sensory problems can be a big part of having ASD. It's possible that your son is avoiding body contact if he has over-sensitivity to touch for instance. If he is being touched when he is finding this difficult (I'm only surmising here) or feels frustrated in any way, this might be the reason you are seeing him become so distressed. My son loves being touched, hugged and tickled but there are also times he can become very upset and angry if he is touched when he doesn't want it.
All I can suggest right now is try to look for the things that 'set him off'. Although I appreciate it will be upsetting for you to back off from your little one if he is not wanting hugged, this might mean that he will not feel 'threatened' and therefore not lash out. If it looks like he wants to be on his own, give him some space for a while. Be aware that your other children coming into his 'space' might also be upsetting for him especially if he is doing his own thing. My son is old enough now to explain to him that it is unacceptable behaviour to lash out at his sister but equally I also take my daughter out of the situation if she is 'crowding' her brother and I can see the signs that something is building up.
All the best
Lynda
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Hi Rob
Thanks for posting and welcome to the forum. It'll be great to hear about your progress - it sounds like quite a challenge! Patrick sounds like a lovely lad and with your support, I'm sure he'll manage to get through this difficult time.
Lynda
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Hi Whitestar, welcome to the forum
Anxiety - Beta-Blockers
in Medication
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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