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Lyndalou

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Posts posted by Lyndalou


  1. When (I say when not if because this sounds very positive) you get this situation resolved, is there any way you could receive some kind of compensation for what you have had to go through? If they are admitting your case has been dealt with completely incorrectly and they have caused you a huge amount of stress, affecting your health in general would this not be similar to being in an accident that isn't your fault? I'm normally not an advocate of 'compensation culture' but if what is happening to you is happening to many other people then the Government need to take responsibility for their mistakes.


  2. Hi Titan

     

    Welcome to the forum. I'm 40 and self diagnosed. Unfortunately, I haven't as yet got (and may never get) a formal diagnosis.

     

    Although everyone with an ASD is different, there are also a lot of things we have in common. It can be very helpful to find out what you can about the condition in order to understand your own difficulties and past experiences better as well as recognising your strengths and skills! I personally found Tony Attwood's 'The Complete Guide to Asperger's Syndrome' a good 'starter' book to read.

     

    Lynda :)


  3. Hi Pamela

     

    Welcome to the forum. My little boy is 5 years old and is in P1 at a Special Needs school. He was diagnosed at just under 3 years old as having High Functioning Autism. Up until the diagnosis, he had attended toddler groups and then 2's group. He was due to go into mainstream playgroup at that point.

     

    I flagged up my concerns, primarily about my son's speech, to the HV when my son was just under 2 years old. I actually had no concerns at all apart from this back then. Yes, my son refused to wear reins and lay and screamed on the ground if he was pressed to do so but I put this down to him being independent and stubborn, yes, he didn't point or make eye contact too much when he wanted something and instead he led me to it but he smiled and giggled so what was the problem? He could do simple wooden puzzles easily and recognised and could recite all his numbers up to 10 and back and knew the alphabet by around 20 months old. I thought that he was simply clever and his speech was slow. Within 5 minutes of observing him at just over 2 years old, the Paediatrician said she had concerns he was autistic and would be prepared to assess him. I was shocked because the thought had never even come close to crossing my mind and I was angry too. The Paediatritian was excellent in retrospect. She didn't push me to go down the road of assessment and agreed on a compromise of my son attending speech therapy. It was over the course of that year that I began to see more and more of the 'unusual' behaviours that can be attributed to an autistic spectrum disorder. At toddlers he walked round the walls, keeping a distance between himself and other kids and at one toddler group he would scream as we went in the door and we had to leave, at music class he couldn't sit in circles or follow direction; he often wandered off and did his own thing and when he began 2's group he would gravitate to a table and do the same puzzle repeatedly (and very well!) and before we went in he had to touch all the badges on the cars in the car park. When on any play apparatus (from toddlers on) he would get off if another child got on or sit blocking their way with a 'frozen' look on his face.

     

    I am mentioning all these things because you may have seen something similar with your son. Early diagnosis (from my point of view) can be very very helpful in opening doors to services and support for your child and it can be crucial to understand the reasons behind the behaviours your child is expressing. For instance, I now understand that my son's problem with reins was a sensory problem and is closely related to other clothing and issues with 'restraint' etc. The problem on play apparatus was due to his confusion around other children and knowing 'rules of play' in order to play and interact in the 'typical' way. It also demonstates the anxiety which can form a large part of having an ASD. Screaming going into toddlers was due to a combination of a fear of another child who had screamed in his face and startled him which showed his difficulties with unpredictability and possibly too that he equated being screamed at to going to toddlers. I also recognised that he was much more comfortable in larger rooms with higher ceilings and better natural light. The very little I understood of my son's problems back then helped me make the decision for him to do a split placement for 2 mornings attendance at playgroup, remaining in the group and the staff he had been with for a number of months pre-diagnosis when he turned 3 years old. The diagnosis also meant that a referral was made via the Paediatritian and Educational Psychologist for him to attend a special needs nursery for 3 mornings per week.

     

    It sounds like you have the best start for your son right now in that there are professionals taking your concerns seriously. Diagnosis may not be suitable for him and in fact, although the speech therapist can form an opinion, there needs to be a thorough assessment of all his needs by a multidisciplinary team to determine whether or not the diagnosis is correct. From what you say, the ball is rolling for that type of assessment to take place. What you have to remember is that although they will be looking for signs that development in certain areas is delayed or 'different' to 'typical' development, they will also take into account skills your son might have which are actually ahead of his peer group too. The key is that it is outwith the 'normal' range, much like my son was (and is) with certain of his abilities. This is called a 'spikey profile' because he could be very good at certain things - my son draws 3 dimensional drawing of houses at the moment - but very behind in other things - my son is not fully toilet trained yet.

     

    Best Wishes

     

    Lynda :)


  4. Hi Jacks0n5

     

    Welcome to the forum. The honest answer is that all you can do is be there for her; let her speak when she wants to speak and let her cry when she wants to cry. Depression can be a destructive force and it can drive people away so just you being there for her in one way or another will be helpful for her. Feelings of emptiness, anger, despair, worthlessness and all the other negative things you can think of form part of the 'Depression' package and as well as being very difficult and isolating for the person experiencing it, other people round about the person can be affected. If you find it difficult to keep in touch with people but want to maintain this relationship, you need to understand that it might not be easy. Having you around might make her feel better but depression is not just being low and something you can shake off so she might not want to talk at times or could even point the finger at you if things aren't going well. You might have to take a few things on the chin and not retaliate if she is accusatory or 'off' at times. This doesn't mean you should be a walkover but you might have to think through your responses because as in AS, when someone is depressed they can take criticism or 'questioning' to heart and might not readily see that someone is trying to help them. Compounding this, there is often a sense of 'failure' in depression (just one of the negatives) too.

     

    Maybe you could set times meantime to Skype, talk online or on the phone. That way, it's a bit like an appointment and means you won't be stressing that you might have gone 'too long' before speaking and set times to speak for a short period could be good for your girlfriend because it's very easy to let things slide with depression.

     

    Best Wishes

     

    Lynda :)


  5. Just try to put this over the best you can tomorrow. Moods can be affected by all sorts of things; a woman's monthly cycle, the foods we eat etc as well as chemical imbalances in the brain. Sometimes medication can help as it 'evens' moods out and sometimes it can badly affect a person, making their moods worse. Some small changes to lifestyle can have a huge benefit on how you feel but I know how easy it is to fall into a rut and sometimes it can be easier said than done to change established habits, especially if they give comfort.

     

    It's good you will have support tomorrow at the meeting. Hopefully the trainee SW will be able to fill in any gaps in the information you want the Psychiatrist to know.


  6. Smiley

     

    You have the right to question the side-effects of any medication you are potentially going to be prescribed, especially if they have previously caused side effects that have caused you distress thus counteracting any good they may have done. Obviously, you have a clear concern about weight gain and other difficult side-effects to cope with so you do need to raise these concerns (like you say) with the Psychiatrist to choose the best medication option for you. However, I would try not to obsess over this particular medication as you aren't actually on it but instead try to focus on speaking as openly and honestly at your appointment tomorrow about how you are feeling.

     

    Lynda :)


  7. I know this sounds like inciting criminal behavior but if you are evicted then I strongly recommend destroying your house by totally smashing it to pieces. Leave the landlord with a ruin.

     

    In all honesty, I would think this would get Stuffed into all sorts of bother. I don't think he has inferred that the landlord has been in any way to blame for the current situation and in fact has been quite understanding?

     

    Stuffed, I really hope everyone is continuing to support you to try to resolve this somehow. Really don't know what to suggest but it's completely understandable that you are feeling the way you are. Can you stay with anyone meantime? I know this is not technically classed as 'homeless' and doesn't help pay the rent you are still due but it could give you a chance to regroup with a roof over your head. :(


  8. That sounds like fun - reading Broad Scots novels - and the best way to read them is aloud! I find it very hard to read Scots without reading out loud and I find it quite strange that I grew up with it all around me yet I don't recognise so many of the words in the Scots Dictionary. I recommend 'But n Ben a Go Go' (adult futuristic novel) by Matthew Fitt (but not to kids! I don't know if it's in the curriculum around here although when I was little we did quite a lot of Robert Burns...

     

    It would be nice to hear about your visit to the Storytelling Centre if you go :)


  9. Best Wishes Amy. Hope it goes well at the GP's. Concentrate on telling the GP the problems you have and have always had, the things that cause you problems on a daily, weekly or regular basis. Don't overemphasise the 'female' profile because many GP's have a basic understanding of AS and this will be based on the established diagnostic criteria and not a 'work in progress' that Tania Marshall and other professionals interested in the female presentation of AS are in the process of producing. I also wouldn't overemphasise any of the 'positives' as you see them because the route to diagnosis is firmly planted in the 'Deficit Model'; ie. the things that are the 'disorder' or the things that cause problems socially etc

     

    :)


  10. I do at some point intend to go to the Scottish Storytelling Centre in Edinburgh which I think would be a great experience. However, it's far away for a day trip and don't really know how they cater for children with ASD, for instance if they have sessions which would be suitable for children who found it difficult to sit still for a period of time or had problems being close to other kids. I'll have to look into it.

     

    It would be helpful if in this country we embraced our local brogue or dialect and that it was promoted in schools. I think it's very hard for kids to become interested in local culture and traditions, including local stories if their own way of speaking is seen as 'lesser' than what is the accepted 'norm'.

     

    As an aside, my kids really enjoy watching 'Old Jack's Boat' on CBeebies which is Bernard Cribbins as Old Jack who tells tall tales of adventures out at sea.


  11. I would echo what Sally has said but obviously if your son is very highly anxious he would need to be supported in speaking to a Social Worker. I would definitely think he is an emergency case. Have you considered contacting an independent advocacy service to see if he could get someone to help him speak to anyone he has to come in contact with during this time? I used to work as an advocacy worker and in Scotland (I don't know about the rest of the UK) a person is entitled to have access to an advocacy worker if they have mental health issues or are learning disabled who are independent of the organisations or services the person needs help in speaking to. Although the main focus of our work was in helping people speak to health professionals or social services, inevitably there was a huge crossover into housing and benefits etc. We could not help sort out benefits ourselves - this is not the role of an advocacy worker - but we could push for answers and information and help the client complain. People are considered on an individual basis and can be worked with both short or long term, depending on how long it takes to gain an outcome.


  12. Hi Object

     

    I can see Finger Bear has a personality! Unfortunately, we have to be careful with puppets in this house as my son has a real aversion to that...and Teletubbies from babyhood.

     

    I tend to see things as all 'interconnected'...humans having an impact on history and the geography of the landscape which leads then into archeology, development of language and culture including music and art....blah-de-blah. More than anything, I find it fascinating that each generation seems to see itself as 'better' or 'more evolved' than the last when the truth is if 'civilisation' fell tomorrow it'd just be like in 'Lord of the Flies' or 'The Walking Dead' (and now 'Revolution'...yippee!) and we have little of the old skills to call upon now because we are so reliant on computers and technology (my Grandad used to knit his own socks for goodness sake!). However, we never really change however much we change...

     

    I must admit that I never watched 'The Killing' - sounds like you really like it!

     

    Lynda :)


  13. Thank you Starlight for your post. I was quite taken aback that my friend had had the experiences she has had as it had never been discussed before. She didn't go as far as say she had been abused but she had certainly been 'used' in many ways and is clearly very hurt by how she was treated - hauled up in front of leadership for 'infractions' brought to their attention by other members of the church and making herself ill because she was expected to drop everything and help out other members when directed to do so. It made me feel for her just listening to what she was saying. I don't think she had mentioned anything before because she is still in the 'guilt' stage about leaving the church.

     

    I'm sorry to hear that you are struggling with (definite) C-PTSD due to your own experiences. I really don't know if I 'disassociate' but for a long time I have recognised I can't get close to people and even when I think I have it can take one small thing and I feel a huge gulf opening up. My sister got married 6 years ago. She had invited people from our church past to the wedding and I felt really stressed about how I would react if I had to be around them. Thankfully, the main players couldn't come but my first boyfriend's mother was there. It was clear that she didn't like me any more than when I was a teenager and so I felt myself reverting to that age again. I was pregnant so I could make the excuse to escape quite early and get away from her. It was probably around then too that I was on a city break with a friend and we were invited on the street into a church that did outreach work. I thought that it would be okay but as soon as I set foot in the place I started to shake and wanted to get out again. My friend saw how uncomfortable I was and we left pronto.


  14. It sounds like you are doing everything the 'right' way, if there is such a thing. I have been concerned myself about my son not being treated 'the same' way as other children if I 'separate' him from his peers. However, by virtue of the fact that he has a speech disorder, has processing difficulties, gets anxious and confused around other children and the rest, he already IS different to his peers and many other 'typical' children see him as such. Therefore, I've decided that the best course of action is to 'cherry pick' if you like the children I want to be in my son's life until such time as he is in a better position to choose wisely himself. Or at least, he will be in situations where responsible adults can oversee how other children interact with him and he interacts with other children.

     

    Having been the victim of bullying much of my life, I believe very strongly that many behaviours seen as 'normal' childhood / adult behaviours are sometimes insidious or covert bullying behaviours which are 'under the radar' of what parents/teachers/other people think is bullying and therefore they can be more easily disregarded. Girls especially can be very inventive in the ways they bully in order for it to go unnoticed. I would be more worried about the girl who tries to get your son into trouble than the other boys. She might even be the instigator of more obvious bullying by the boys.


  15. Bullying is the right word for what you are describing. It comes in many forms and just because it is not necessarily 'witnessed' does not mean to say it is not happening. If your son has a diagnosis of ASD, your son's teacher should be aware that your son may not be able to understand boundaries but also that he may not recognise he is being bullied or be able to say he is. In the way your son's teacher dealt with this situation, I would say that this could be interpreted as 'colluding' with the bullies.

     

    I would ask for a meeting with the Head Teacher as soon as possible to discuss the situation, explaining that there have been incidents outside of school with the same children. The more your son is afforded little protection from the adults in a position to do so, the more these children will feel the power lies on their side and they will begin to think they are untouchable. It needs nipped in the bud now. What can be problematic of course is that bullies can escalate their behaviour if they are 'told on' or think their power has been taken away so it is all the more necessary for responsible adults to be in charge and be aware of bullying in all it's forms.

     

    I would not let your son out to 'play' meantime with these children. If you think their parents would be receptive it could be worth speaking to them but it's maybe best not to go down that road. It is pointless thinking that these relationships will in any way help his social skills or increase his confidence as the opposite is more likely so he needs to be taken out of this situation altogether imo. It might be better to look into organised activities meantime. I will shortly be looking into getting one-to-one assistance so that my son can access various activities. This is because, outside of school I can't consider my son playing with other children in 'free play' and his playdates are supervised as I would not feel happy with him playing with many of the 'mainstream' kids round about. I have already seen how 'differently' they treat him, ranging from other kids ignoring him, trying to get him into trouble and giving him dirty looks and once a younger boy pulled his trousers around his ankles and smacked his bum in public. Their parents of course don't seem to see this happening or see it as 'normal' child behaviour and don't seem to see these things as a precursor to bullying or actual bullying. There are a couple of exceptions to this and I am sticking with those children (and parents) meantime. My son is quite a lot younger than yours but I think by the sounds of it, your son has very limited ability to stick up for himself as my son has. I am thinking along the lines of Boys Brigade, Beavers, Gymnastics class etc. Do you think your son could benefit from this to help him learn the skills to cope with what he is experiencing and to learn who are more likely to be friends and to recognise the signs that someone isn't?

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