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dekra

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Everything posted by dekra

  1. I get exactly where you are coming from here Noskcaj. It appears some people can't seem to understand that a desire to socialise and the ability to do appropriately are two different things. The seem to understand classic kanners autism and they seem to understand Aspergers but they can't seem to understand that a child with speech difficulties might reflect kanners in some ways but more Aspergers in others. The number of times I've wanted to scream "but it's a spectrum condition". Yes he has strengths that some children on the spectrum do not for example he doesn't have a major problem with routine changes (although he does on a small scale, clothes have to go on and off in a certain order for example - NEVER try putting socks on before trousers) so again they are imo failing to dx more due to abilities rather than inabilities. It does frustrate me at times but we have gotten to the stage where we are happy with things and the change of the name on the dx is largely unimportant at the moment. Ironically the only difference it would make would be explaining to outsiders if something happens such as inappropriate contact with a stranger.
  2. My opinion on this is that everyone is entitled to their own opinion but they must also respect that others have their own opinions. That doesn't mean to say one is right and the other is wrong. Understanding that and learning to respect others and their opinions even if you do not agree is an important life skill. As you said before consensus is important but also conpromise. Somethings you should never compromise be it dignity integrity or similar but other things compromise is a hugely important thing. My big example of this is I never wasted my time with guys I wasn't that into. I was alone for many many years (kept company by my obessions but that's a different story) and the guys that were interested in me I wasn't interested in them. I was not prepared to waste years of my life in the wrong relationship like I'd seen so many others do just because they had to be with someone. When I finally met my husband everything was so right we just clicked but as the years have gone on in order for our partnership to flourish we've had to compromise on things we'd not have considered when we were single. And as a couple we've had to compromise things we liked to do to become parents. All these choices and decisions whilst taking away some of out personal freedoms and choices have greatly enriched our lives. Outwith personal relationships compromise still plays a role in wider society. Basic law and order is a prime example of it. At some point in the lawless history of civilisation people realised having the freedom to steal and harm and kill might be useful for some but not for others and that it was beneficial for the community as a whole to have rules (ie laws) to prevent such actions. Thus people compromised their freedom to act as they choose to instead being free to act within a set of guidelines that was on the whole better unless you were the person thriving by killing, stealing and maiming. I also agree with what you say about being judgemental. I am a student nurse and if 2 people come to me for treatment, one poor, homeless and smelly and the other rich and well groomed I should not treat either of them differently because of that. Neither if the poor man is polite and kind and the rich man obnoxious, they still deserve equal care. The only difference in anyones care should be what is required for that individual not who they are what they have or how they act. Having said all that it can be difficult to put such good ideals into practice but that doesn't mean it shouldn't be done, too many people don't bother with things because it's too hard.
  3. No Sally he does not have a statement we live in Scotland don't need a Statement here and he's just turned 5. The language unit doesn't feed into a particular school. He will go to the mainstream high school which is about to be built to replace the local school and is due to be complete in 2015 so when he goes in 2020 it should still be state of the art and hopefully well provisioned for additional needs children. I feel confident things are going well and that the professionals involved in his day to day care are co-operating and also keeping me in the loop. we have regular review meetings and I am able to contact them directly at any time if I have concerns or questions. Again with the OT I think it is different here in Scotland and it is needs driven not diagnosis driven - even with it being diagnosis driven his dx is language disorder and developmental delay so there the dx as it is should be advantageous to me. The OT waiting list is around 4-5 months at the moment and I know this from talking to OT's themselves whilst I was working with them recently.
  4. Actually I see my "crushes" all during high school and early adulthood as one of my signs of ASD. It always went beyond just a crush it was a full scale obsession and at school with nothing reciprocal from the poor lad who's year it was to be obsessed over. I was borderline stalking these guys unfortunately. As an adult I simply transfered these obessions to guys whom I'd had a brief liason with (drunken snog) and who had moved on to the next conquest. Only once did I ever get like that with a person that I actually had a friendship with. All the rest I had no relationship, not romantic or friendship beyond a snog once. I think I needed the imaginary possibility of a relationship with someone it was never going to happen with as I was not really in a position emotionally to have a proper relationship.
  5. Quick update Sally. Finn has his ADOS in May and his scores were below that for diagnosis. They have given dx of developmental delay and language disorder. He was signed off from the hospital team and referred to the community paediatrican whom he saw last week for the first time. She has agreed that in the months since his assessment his language skills have developed but his social skills have not and this may indeed indicate ASD might be the relevant diagnosis. But what she advises and I agree is to leave things are they are at the moment as Finn is getting all the support he needs at school, she has also referred him to OT for his fine and gross motor skills (still can't hold a pencil properly and finds it difficult to make marks on paper) and as he has this support and a 5 year DLA renewal then they will leave re-assessing for a while until it's clearer or until his needs change and having that dx is important.
  6. I try to limit my direct contact with people outside my immediate family. Facebook is great for me keeping the appearance of keeping in contact without actually having to do it IYKWIM. I am a student in a class over over 170 last year and in all those people I managed to inadvertantly made one friend. I wasn't looking to make friends but it just sort of happened towards the end of the year. I wouldn't call it a close friendship but still it is a friendship rather than the aquainanceships I have with everyone else. This year however this person is in a different class and we only see each other in passing so it's back to the social media contact and an odd coffee or lunch break where were have the same times off. This doesn't bother me, in some ways it is easier to know I can go back to my social isolation rather than making the effort to socialise daily with this friend.
  7. Lynda had a point I agree with an a point I disagree with. Whilst the link with ASD is not proven I agree that it is also not proven but neither is the fact that the sky is blue or the grass green proven not to cause it (sorry that sounds very flippant and it isn't meant to be I just can't think of a more approprate analogy at this time of night) so I disagree there. I also take into consideration that there is some evidence which whilst still needing further research shows there are possible repercussions from immunisations. Lynda has taken the IMFORMED choice in this respect over her decision not to immunise and that's the best anyone can ask. I have been given the same informed choice and MY choice was for me the benefits outweigh the potential risks. What bothers me is people not making informed choice but being scared into not providing life saving treatment due to irresponsible scaremongering by uninformed people.
  8. I do not and have never believed the ASD/Immunisation link claims. Now that the study has been proven flawed and should never have been published the damage from the claims are there to be seen in the number of measles outbreaks amongst other negative health effects on thousands of children that were not immunised. Some of these children actually died from or had serious side effects from preventable illnesses such as measles mumps and rubella plus other diseases that are prevented by other vaccines that were not taken up. Knowing all that and knowing there is no scientific link did not stop me being worried slightly when my son had his vaccinations and I was almost sick with worry taking his younger sister for hers and you know why? Because irresponsible scaremongers like this that's why. I will happily listen to any properly researched and validated evidence to show a link but until that ever happens then I firmly believe the childhood vaccination programme is an important public heath facility that all parents should seriously consider.
  9. Fear is an emotion too. As I already said emotions may or may not have tangible or what you call "real" advantage but is feeling good not advantage in itself? Yes the less subtle emotions like fear are tied to survival but so are the more altruistic feelings. Self survival can be promoted by the survival of the greater community and similarly the happiness of a community can benefit the group and the individual. But that is digressing, you may not agree with my original arguement and if you don't understand what I mean by an intangiable benefit I am unable to counter your opinion but I still stand by my original stance but I respect you disagree also.
  10. I'm sure this is a contentious issue and each answer would be as individual as the person answering but I think for you if this is how you feel then this is the right position for you. Happiness is hard to find and if you are happy, content and confortable with who and where you are then that's fantastic.
  11. "Age of the geek baby!" - Alec Hardison, Leverage. Great programme and Parker, damaged goods due to parental abuse or AS or both?
  12. Oh yes it would be so much easier if they could dx just with a blood test or a scan etc, but whilst I do think they are likely to find a suspect gene or a certain microscopic brain problem I think it will still become a mixture of these things and still be a subjective diagnosis are I think the there is not one single cause but varying causes and varying degrees of effect even with people with the same clinical signs. Hopefully at least if they identify these areas diagnosis can at least be more definate sooner so people can get the appropriate help as soon as possible rather than waiting for signs and symptoms to manifest and be identified.
  13. What I meant ST was that there isn't a test that you can just draw a blood test and check for it or pee on a stick. The diagnostic criteria for ASD involve tick boxes of signs and symptoms that accumulate. The "tests" that are performed to aid with diagnosis of ASD are a conglomeration of expected results for given set of difficulties. In certain individuals it's clear they fall on the spectrum in others it's not so clear.
  14. I disagree, a feeling whilst not tanglible does exist. If feelings weren't advantageous or disadvantageous then there would be no benefit from feeling good and no problem feeling depressed. But in actual fact feelings and emotions drive the world even for ASD sufferers who may struggle to understand and relate to emotions or to understand the emotions of others that doesn't preclude them from having them. Oh if only feelings and emotions didn't matter then there would be so many less mental health issues.
  15. I think Karmadestiny has a point, eye problems are so common that it would be very difficult to see a clear correlation between them and ASD,
  16. I do not believe in selflessness. Yes people appear to act selflessly but in almost all cases (except possibly running into a burning building on instinct etc) those selfless acts do infact give the supposed selfless person something. That might be a feeling of selfsatisfaction or they enjoy the acolades they recieve or they simply enjoy whatever activity it is there will be a benefit for them somewhere and that "selfless act" will actually fullfill a need or desire of the person undertaking the act. They may not even realise it and believe they are doing it for pure motives but even a pure motive is still a motive.
  17. My husbands psychiatrist when discussing ASD told him everyone has autistic traits but that does not make them autistic. It is only when a significant number of those traits manifest together can it be classed as ASD. ASD is just a blanket term to describe a collection of signs and symptoms. As you know there is no definative test for ASD and there is no "cure" - some people are very obviously on the Specturm others borderline. Just where does NT stop and ASD start? Without a dx myself I sometimes look at my behaviour and thought patterns and think oh yes obviously have AS and at other times I think I'm NT just quirky and socially inept. I am probabally one of those borderline cases, a bit of both or neither one or the other depending on how you want to look at it. Try not to get hung up on one particular area. Also just as not all people on the specturm are the same with how their ASD manifests neither are NT people all the same. Humanity is one big jumble of confusion. My advice is to take others on individual terms and not to get hung up on if someone is NT or has ASD or has mental health issues or a particular sexual orientation (remember that was a "mental illness" until not to long ago) or if they are selfish, they are lazy, they are the life and soul of the party (how is that just so effortless for some?) and so the list goes on.
  18. I think speaking to her is important, you are placing a whole lot of trust in her and as I said previously you do need to think of the future and taking time to build up a relationship with someone you trust now maybe helpful in the long run. Also playing devils advocate myself here - if you win the battle with the council to keep Glen where he is at the moment will the same battle not arise a year, 2 years, 5 years down the road? Maybe it might be worth considering the long term benefits if a suitable placement is available closer to home. IF there is a suitable placement then whilst in the short term Glen might be distressed but there won't be a constant battle to keep him where he is and he's closer to be able to establish a better home visit schedule then it may be worth that short term difficulty. It isn't just about Glen it's about the family unit remember, you are important too. Less stress and better contact for you is important IMO and you might think me nasty for saying that but it might be worth that sort term distress to Glen for him to have you at your best for him.
  19. I really don't know anything about advocates sorry Jeanne but my concern would be that an advocates job is to speak for Glen not for you. And whilst you want what is best for Glen and what you feel Glen wanted - their interpretation of what is best and what Glen wants maybe completely different so they could be advocating for something completely different from you with both of you believing you are acting in Glens best interests. Neither of you may be wrong in your beliefs but you may find yourself at loggerheads. There is also the fact that sometimes Glen's best interests and what Glen wants may be different things. Is an advocate obliged to carry out Glen's wishes or act in his best interests? Do they have a judgement call between the 2 as a parent would and if so do you trust the person appointed to make that sort of judgement call. Sorry I've not really helped but personally whilst it might take a degree of pressure off you it may also remove a degree of control you have and I your circumstances I would worry about that. On the otherhand you need to think to the future, will your daughter be able/willing to take on the advocates role that you currently fullfill if something were to happen to you. Maybe it is time to pass it on to someone else.
  20. I had a bad squint as a child, now as an adult I have learnt to control it but I am still short sighted in 1 eye so I wear a contact lens in 1 eye only. The other eye has a tiny tiny prescription so my glasses I have for spare do get a mild correction but for lenses there is not enough to bother with. My right eye is good enough to compensate for the bad left eye and I can go without glasses/lenses but I tend to get headaches if I go without for more than a few days at a time. My son recently had his pre-school eye exam and has very good vision. That said, I believe I have ASD but have no official DX and son's DX isn't ASD at all although Dr now agrees that maybe he is on spectrum after all but if he is it won't be Aspergers as his speech and language is badly effected.
  21. Does sound like a hypo to me in that case. Wobbly, shaky, dizzy is exactly how a hypo starts for me including a general feeling of "vagueness" as it starts to hit. Do try the fruit/lucozade in that case for a while, experiment with what works quickest and best for you and maybe even if you eat the banana or whatever as you are getting changed back to street clothes it may fend the feeling off altogether. Also follow up the fast acting engery with something a little slower release like a digestive biscuit so you don't just delay the crash until a little later.
  22. Raydon beat me to the hypoglycemia suggestion. Try eating a banana or drinking some lucozade after your exercise and see if this reduces the impact of the low. Even if you're not actually officially hypoglycemic during these times, if your body naturally sits at the higher end of normal for your blood sugars and the exercise drops those levels to the low end of normal you are still experiencing a relatively sudden change and your body reacts by causing you to want to do all you can to conserve energy.
  23. As the title of this post suggests we have seen a new paediatrician the hospital team referred us to for on going monitoring. This Dr has said we agrees with us that yes ASD might very well be an appropriate dx after all. She has also suggested as Finn has appropriate support in school which would not change and as our DLA award is for 5 years that at the moment there is no need to look into changing labels and this can happen at a later date if appropriate when his needs change or it becomes more apparent that it definately is ASD. I think that is fair enough, he IS getting the appropriate support. We will see this Dr 2/3 times a year and at any time if we have concerns we can contact her for another appointment and if needed she will get us referred back to the hospital team. Also in the meantime she is referring us to OT for help with his fine and gross motor skills. We are unsure if he needs the OT input urgently enough to add yet another person treating him but as the Dr says lets get the referral done as it takes a number of months to be seen so when the appointment comes in we can decide then if it's too much for him. Also he is still getting his 4 afternoons a week with the language unit plus the specialist SALT from the language unit will be coming into the school for 2 more sessions a week starting next week. So that will be 6 sessions of speech and language therapy a week.
  24. I actually thought James Arthur seemed to have some ASD mannerisms on Saturday.
  25. Sally I think you should appeal. I know it's a lot of work for only potetially 1 more night but that's still DOUBLE what they have given you so far. I would also appeal and try to make a point of letting the panel know that your LA have failed once again to meet their obligations to your son and failing to take the advice of social services etc forcing you to appeal. I'd make a point of raising this as an issue in some respect - I don't know if you could do it to the panel or if you could maybe go to a local counsellor/MP and ask them to look into the repeated and deliberate failure of the LA in respect to their obligations to you and your son.
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