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rag31

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About rag31

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  1. Hi there My dh has AS and since we found out about it it has helped loads. We now discuss contentious issues by email and I can't tell you how much that has improved our relationship! Also I am having to try to overcome my 'politeness' and stop expecting my husband to know that I mean one thing when I say something else ("I'm fine" when clearly I'm pissed off!) and also to tell him when I want something instead of waiting for him to notice the signals. Also, when I fail to tell him what I want or need (it's really hard to change this in my experience!) I have to work on not getting irritated when he doesn't realise. I've realised now that most of the problems over the years have been purely as a result of us misreading/misunderstanding each other. I wish we'd known years ago about this because many of our problems would have been easily avoidable. I'm now really conscious about things that upset my husband that he hadn't talked about and I hadn't noticed (see, works both ways LOL!) and I can empathise about that. Knowing is very very helpful, but I have to say that when I first realised my dh had AS I went online and found various forums and websites that were extremely depressing and pessimistic and upset me for a while. Especially as my children more than likely have AS too - I don't want to think of them as these horrible people that they seem to be described as everywhere. Because I am their mother and I know they are not horrible at all. They are wonderful, loving and fantastic! :-) So, we try very hard, we go through some rough and some good times, but I see us growing old together and enjoying our family and activities together over the years. This is due to our increased knowledge about AS and the understanding that this awareness has allowed us. Becky xx
  2. Hello Thanks very much for that link, and also to hear from some women with AS (though not had an easy journey by the sound of it!) My daughter is 9 and has not been diagnosed, but shares some of the AS traits with her dad alongside tourettes. Despite lots of opportunities to make friends she has never had any friends and I'm wondering if any of you AS girls could give me advice on ways to help her make friends/socialise? Thanks, Becky xx
  3. Firstly, my husband has just had an assessment and been diagnosed with AS. This is after many years of us knowing something was going on, and three years of knowing it was probably AS. He has some of the traits strongly, some not too bad. He also has tourettes, as does his mum and sister. They all have voice clearing, and various facial/body tics. The main reason for seeking the diagnosis was to shed light on our children. We have 4 children, though the eldest is from my previous marriage and is NT (and thus, teenage NT girl is utterly baffling to DH! LOL) But our others: 9yo girl was always considered very 'shy', she developed at a 'normal' pace - walking/talking etc. In infants at school her yr 1 and yr 2 teacher both said that there was something unusual about Ella. She was lovely, no problems, quietly got on with things but she had no specific friendships. If someone was friends with her she happily went along with it, but if not it didn't bother her. This is apparently very unusual for young girls. Then in yr 3 she was put into a very disruptive and noisy class and found it extremely upsetting. She cried every day because the children and teacher were always shouting. She has been home educated for just over a year and it really suits her. She still has no specific friendships, though socialises regularly with children of various ages. She also has all the signs of tourettes (throat clearing and regular facial and bodily tics). My 8yo son has always seemed sociable and had friends so I had assumed there were no problems. However he always had strange rages where he'd glaze over and nothing could stop him, he'd be rigid and screaming sometimes. Moreso than 'normal' tantrums but not that often. He developmentally was quite late with sitting up/talking/walking etc but only a few months later than other kids and he developed normally. My dh has recently said that ds is just like he was at that age. He basically plays the joker, doing stupid things that other kids find funny and thus feels popular and has a bunch of children around him. However, he doesn't really have friends other than parent-imposed ones iykwim. Then we get to the 4 yo! (sorry for the essay!) Sam as a baby couldn't be put down, he needed to be carried constantly - lucky as I had a sling and didn't mind. He couldn't eat any form of solid food til he was 18 months old as any lumps made him gag. He crawled and walked normally. His speech is very delayed, we have seen SALT who were pretty useless as we already did everything they would recommend at that age. Now at 4y 3m old he is starting to talk in sentances but they are the 'wrong' way round iykwim. Example - he will ask "this table what colour is it you think?" and things like that. 6 months ago, aged 3 he had a vocabulary of a handful of words and hadn't put 2 words together yet. He has had major problems with transitions - until recently it has taken us 2 or 3 weeks to make the transition from one pair of shoes to the next, I've had to smuggle in new bigger clothes and made sure they are similar to the old ones so he doesn't notice, he refuses to come out of nappies, he will not happily stay with anyone apart from me and recently DH and so on. I have had to give up work as he's so distressed by me leaving and I just couldn't handle seeing him so upset. Since I gave up work he's stopped biting his nails (he actually bit 2 nails off his fingers before) and is much happier and making developmental leaps. He obsesses over programmes on TV. First it was Thomas, then a film called space buddies etc etc. During these obsessions which can be a few weeks or - with Thomas - years! he wants to watch the programme/film over and over again. he would watch them 5 or 6 times a day if we let him. He is also obsessed with trains, planes, automobiles :-) Not only Thomas but any train now. We have umpteen of those 'trainspotter' books that are just photographs of different trains. Bearing in mind all of this - and apologies for the splurge - I am just considering now our next move. We have been told that 4 is too young for an assessment. Having looked at some of the assessments for kids it would be, he doesn't have the language skills. I don't know what he's imagining iykwim. However, I think it would be very useful to have a diagnosis - not only for help and support but also for telling people. Kids in the park keep asking why he doesn't talk, parents are asking why he's still in nappies etc. It would be so much easier to be able to tell them iykwim. I would appreciate if anyone could tell me if their children have been/are similar to any of mine, how young their LO's were assessed and diagnosed, any advice or comment really. Thanks, Becky xx
  4. Hello I have had a similar experience to everyone else here. My youngest is only 4 and also has a physical condition which my MIL has disregarded as 'unimportant' and asked us if it's real or whether his doctor is a real doctor. (He actually goes to Great Ormond Street for his treatment - obviously, they often deal in 'made up' conditions GRRRR) So, my husband has just been diagnosed finally with AS and his mum and sister have the traits strongly too but he can't tell them because they think we are just enjoying labelling everybody or something! She thinks I'm making stuff up all the time and is totally unsympathetic. We have 4 children and the only child with any 'label' is my youngest (at the moment!) so we're hardly label crazy! My family, on the other hand, are kind of supportive but never dismissive. They are interested and sympathetic iykwim. But they don't really know much about ASDs (apart from my brother whose son has Downs Syndrome and so knows quite a bit about various things as they suspected he had an ASD at one point too). I have to say, the worse thing for me at the moment is friends who think that my 4yo is only the way he is because of me. I find this utterly depressing and upsetting. I have responded to his needs, not created them! <sigh> Becky xx
  5. Thanks for all your ideas guys :-) I think that slowly slowly will work for us all as a family. I like the idea of 'his' space in my room. He has his space in his siblings room which he enjoys in the evening before going into my bed when he's tired. I may place another bed next to mine and then gradually move it away... I also like the idea of getting photos of places we might be staying to prepare him for it, I think this could work :-) And like the idea of taking bedding - I have only taken our pillows before. I always take a fan as we have a fan on in the room to zone out outside noises and that really helps. I have found with the cup thing that he will voluntarily switch allegiance to a new cup if we take him shopping to choose it, so it's not a big issue at the moment. Thanks for all the ideas! Becky
  6. I don't know in relation to SALT but for my sons other condition we had major NHS problems and so paid for a private diagnosis. The doctor then referred us back into the NHS himself - sending our GP a letter with the diagnosis and advising them what further professionals we would need to see. We were referred down to Great Ormond Street by him and it wasn't disregarded at all. Becky
  7. My little boy tends to like things certain ways, for example only drinking out of a certain cup, food kept all separate, always having a train with him etc. Mainly we are laid back and I don't consider these things problems that need to be 'fixed' at all but there are a couple of things which make family life tricky. For example, he doesn't like to go to sleep anywhere other than in my bed in our house. This is not normally a problem but it also means that I try not to go away or on holiday if it can be helped as we end up having a hellish time with virtually no sleep. With 3 other siblings this is tricky, and our family all live far away so it means we rarely visit. Is there any way of overcoming anxiety and helping him to be happy or even just able to tolerate being away from home? There are a couple of other tricky situations too, but I am wondering if anyone has found ways of helping young children cope with things that terrify them? Or is it best to just wait for them to grow out of it? (I am ignoring a friend who insists we are being soft and should force it!!!) Thanks, Becky
  8. I've never heard of AS partners before, but have seen a couple of other yahoo groups and forums where if you had just discovered your partner had AS you would feel like it was just disastrous. A lot of the people seem to feed on fear and being a victim. That sounds harsher than I mean, but I haven't stuck around any of them as it was too depressing. Becky
  9. Hi there I understand how you feel. Despite hearing on here about the positives of diagnosis I have been a bit wobbly about it. It seems irrational but I know it will take away any ideas - no matter how small or stupid - that he might still grow out of it :-/ I am just seeing my GP tomorrow to ask for a referral and I feel like vomitting so I have no idea how I will feel before a proper assessment. Hope it went well :-) Becky
  10. Thankyou for all your replies. I do home educate my children, so that is why he won't be going to school. :-) It seems there is no negative to diagnosis as far as everyone here is concerned. Another question - where can you go for a private assessment? Thanks, Becky
  11. Our local CAB has an advisor dedicated to assisting people filling in forms, and know how to word things and fill them in properly. If we decide to apply for DLA then I would definately go there for expert help. Becky
  12. My 3yo has been a ferocious nail biter since he found his nails. He has pulled off both a thumb and big toe nail, and his nails are bitten down to 3 or 4 mm at most. It doesn't seem to hurt or bother him so I'm not too worried about it atm. He does it when he is anxious or stressed, and when he s going through a stressful time he bites and chews almost constantly. So, I have no cures unfortunately but just to say 'I hear you!' Becky
  13. This sounds like a good book, I will keep an eye out for it. Thanks for the recommendation. Becky
  14. You could write to your local newspaper if you have one, and ask to be kept anonymous. They probably love this kind of thing (ours does!). That way you say thanks but it doesn't have your name attached iykwim. Becky
  15. I am still wondering about going for a diagnosis for my 3yo. I am trying to weigh up the pros and cons of seeking a diagnosis for him. He won't go to school so he won't need an SEN or any help there and I would like to know how a diagnosis will help us and him in other ways. Are there other services or pros that only come with an official diagnosis? I don't know if there are or not. Do health care professionals think you are weird for not getting one? We see various health professionals for his other condition and the SALT has recommended we see a community paediatrician and I wonder how they will react if he obviously has an ASD yet we don't seek any kind of diagnosis. Also, if we can get DLA is it helpful to have a diagnosis or does it make no difference? So, information on the positives and negatives of seeking a diagnosis would be most appreciated. Thanks, Becky
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