SarahSH

Hi Julianne from what you say it sounds to me as if they might be offering what they call accommodation under section 20 (of the Children Act 1989), which means you're still in charge, you're just asking for a bit of help. If it is section 20, it's voluntary, and doesn't mean you sign away any rights or responsibilities. It can't be offered if anyone with parental responsibilities objects, and you can take your child away at any time. don't know if that's right, it just sounded as if that's what it might be all the best, Sarah

Hi Joanne I work in CAMHS and we have multiagency meetings with other professionals when there are several people working in different ways with a child, and we think the child could do with everyone around them knowing what's going on and working together. There might be someone from school, someone from a mental health team, and any family support or social worker that might be involved. From your point of view, you'd meet everyone working with your child if you haven't already, and it would give you a chance to let them know how things are for you at home. Not saying these meetings always work like a dream - depends what's happening elsewhere. In my experience they tend to be difficult if things with the child are difficult and feelings are running high, and calm if everything's going OK. Hope yours goes well all the best, Sarah

Hi Dee, I agree. maybe the person you saw was not too aware of what living with asd can mean - whatever their job title. I recognise autistic traits in myself, my ex-husband and two of my children, and only one of us has a diagnosis, because his problems in accessing the world are more apparent. But he certainly has insight into his difficulties and strengths as a person with aspergers, no question. I think that's an inappropriate guideline s/he's using. The other thing that comes to my mind is, why would an adult diagnosis help you? I don't mean it wouldn't, I just think it's worth considering. If you can read lots about it and both begin to see your partner's behaviour in the light of what you both begin to understand about him and the way his mind works, maybe that's all you need? Well not all you need, but you know what I mean. If it makes sense to the two of you, and gives him something to frame some of his responses, then that's got to be good - without anyone else telling you what you already have discovered to be true. all the best Sarah

Hi janine Can't help I'm afraid with which way to go but I really know the feeling. I have often felt the same with my son, now 16 - do I let him tune out because he needs it after being 'out in the world' and over-stimulated, or do I try to interest him in things? I sometimes think part of his problem now is that he has spent so much of his time tuned out, that his mind and body just haven't had the same amount of practice that other kids have at the things that he finds difficult anyway, and so he's further out of step. But then, it isn't a race, there's no set time to do things I suppose and he will develop at his own pace. Although that does rely very heavily on me being a kind of spare head for him, for the things he can't /doesn't want to deal with yet. I suppose that's the thing - the can't/won't issue. Your son is so much younger that maybe 'can't' is a much bigger part of it just now. I think for us, I've probably been a bit too ready to let him laze about because i thought it was all too much for him. I don't know - sometimes I feel I've overdone the pushy mum stuff too, trying to get him to do things in lists of more than one and he's ended up feeling got at and stressed. It just feels like such a tightrope which it's very easy to fall off either side. guess a mum's place is in the wrong! But we need our downtime too don't we all the best Sarah

Hi Josie sounds like a horrible situation. Have to wonder though, we know what's going on for you and it's plenty, but what has brought this on for your husband? Sounds to me like he's wrestling with something too and I wonder what it is. Before you rush off (I've done it myself before now, so I know how you feel, but it wasn't a good idea for my kids and not for me either really because it wasn't thought through) maybe it would be worth seeing if there's a conversation you could have with him. Not so much about what he does or doesn't do, but about what's bothering him at the moment. Just a thought Good luck whatever you decide to do Sarah

How fab! Congratulations! Light at the end of the tunnel- what a great adult/child ratio now you can settle and enjoy these last few weeks knowing you can prepare him well for starting take care, Sarah

You poor thing how dreadful! <'> Think that's really appalling what those kids have done to your son, even though he had the good sense not to do iwhat they said despite their fake promises. Thank goodness - that's your support for him paying off. Let's hope he does get that place, so he can grow and flourish without that kind of stuff happening. Our kids lives are hard enough without having to fight off that kind of bullying fingers crossed, Sarah

Yes I agree - visit all the ones you can reach if you can't or don't want to move, and don't worry about presenting it - that can come later. Of course it must feel right. If it does, there'll be someone there who will help you make the case. Good luck Sarah

Hi Shona my son is 16 and doesn't have DLA. He has a similar reaction to what he sees as interfering 'help' which stigmatises him. The help he got at secondary school was like that much of the time unfortunately, despite my best efforts to make it more invisible. (Got an ex-husband who reveres authority and was on their side, which didn't help.) We've found a sixth form (after the usual blood sweat and tears) which is great on invisible help, and has really small groups. It's mainstream but the bad news is it's fee-paying. Me and ex are dividing the cost, and I don't earn that much, but I think it's worth it for the input over the next two or even three years, to set him up for whatever comes next. Hopefully university, but who knows. He does have a diagnosis, though. Does your son? I wonder if that might be enough at that stage to get a bit of support. Bus routes etc can be managed with a bit of planning and practice, can't they - especially as they grow up. my son got the bus home from bowling with his new year group last night - same bus as he gets to come home from school, and from same stop thank goodness, but all the same - really really never thought I'd be able to say that, the bus bit or the bowling bit. New head of year had managed it so that he was in a group with her and some other kids who would not bowl him out of the park, and he didn't come last and had a really nice time! Now that's the kind of help I like! Good luck with sorting out his post-16, it's pretty tough isn't it Sarah

It's tough isn't it - v painful to see them go through such pain about who they are. I'm sure you've probably done this but we coped with it by talking about AS as a way of thinking, definitely not an illness. I know some people including Ros Blackburn talk in terms of "incurable" etc, but that's just not how we've ever thought about or experienced AS in our house. It seems to me (and I'm not a medic but this is how I've talked to my son about it) to be about being very very sensitive to what's going on around you, and needing lots of gaps in contact and stimulation because of this. It also means you're going to get pretty anxious, with all that stuff - sights, sounds, smells, feelings - washing around you and in and out of you all the time, with no sure way of keeping it all out. It can make you want to try quite hard to control your world in case it gets overwhelming - which it often does. And that kind of level of awareness means it's hard to see the wood for the trees, because there's so much information coming in, so it's hard to pick up on social rules and begin to tell what people might say or do. That's got to be pretty confusing and add a whole other level of difficulty. To us this makes it seem pretty understandable to protect yourself by separating off sometimes, or getting in a panic/state in response to overload, or trying to control your environment as far as you can. I'm not saying my son is never sad about it, he is sometimes. But we do use the term aspergerish quite often as a compliment meaning likeable, sensitive and sort of one of us! Don't know if that's any use, take care <'> love Sarah

Yes - agree about the triangular pens and angled board. Looking at my son try to write when he was younger, you had to wonder how anyof us do it, the grip seemed so tricky. Thick triangular pencils helped him for years. His grip is unusual now, ten years later, but works fine with normal pens. Sarah

Hi Chris nothing very useful to offer unfortunately except good luck! I know where you're coming from and was in a similar situation myself a few years back when my son now 16 started secondary. We had no friends to swap with either. I tried the usual childminders - got a list from the council of ones in the area, but they were understandably organised around the local primary schools and he would have had to do quite a journey unaccompanied to their house from school to meet them there. And would have been with children quite a bit younger of course. So we didn't do that in the end, although you might be luckier and find someone who just happens to be near at hand. Another thing I tried was to ask around and even advertise in the newsagents locally for an 'honorary granny' who might come in after school with him and just be around while he did his own thing, but got no offers sadly. In the end we had to just work our hours around school hours, with one of us taking him and one picking him up from school each day. It was difficult. He did go to a relative one night a week after school. Then as he got older he had his own key and I just got back as soon as I could. I know it's a very long way off from where you are now, but I have to say, it did get easier with age. By 14 he had a taxi home and could let himself in fine and get a snack/start homework/watch TV till I got back after work about an hour later. By 15 he was getting the bus and it all began to get quite a bit easier. Feel for you though - it's not easy. Good luck getting someone to help with it Sarah

[quote I don't think this 'too much in my head' is a excuse but then I am her mum and could be letting her get away with too much? What I normally do is make her have a time out to calm down then we ask how many things she has in her head, normally its 20 and we count down from 20 to 1 and she is 'all better'. I don't know if I am doing to wrong giving her a get out clause? No I don't think you are - sounds like a really good way to help her deal with it. Doesn't sound to me like a situation she was trying to create - maybe the school are trying to teach her what she can and can't control but they don't need to bother because I would guess she's already very aware of what she can't control and has to try and accommodate. Think your approach sounds lovely and just what she needs - now all you need is someone at school who doesn't always see it as a battle of wills but as a need for help in managing overload. OK there might be a battle of wills occasionally in there too sometimes, but not this time - as everyone has said, in the dining room just being there is stressful for our kids. good luck with getting through to them - maybe she just needs one person in school who understands, preferably someone like a teaching assistant who can do what you do and sit with her, helping her count down and calm down all the best Sarah

Hi Lisa really feel for you, it's so hard and lonely isn't it <'> My son (16, aspergers) has struggled through mainstream, just about. But didn't make any friends there, and was in bottom stream classes with kids who were really struggling in other ways, so didn't have appropriate level education really. But it did mean the groups were smaller, so that's why I accepted the compromise. He doesn't have any friends at home either, so like you it tends to be just him and me, especially now school has finished because he's done his exams. Don't know where you live - we live in the midlands and I haven't been able to find much. Every now and then there's a hope of something, but it has not materialised into anything that he can join in with. The sad thing is he does want to find a friend now I think, other than me and his dad, but there just doesn't seem to be anybody. We are checking out chess clubs... well I say we.. he's not keen but I feel I want to give it a bit of a push because if it works he'll be so glad. Take care, hope you have a good day out today love Sarah

Very sorry to hear about your nan and grandad, bikemad - must be tough for all of you. My guess is, your son already knows and that's why he asked last weekend. Yes he'll be very upset but it's not something you can hide from him - he'll pick up on your sadness anyway. Not easy but think he does need sitting down with and talking to about it - that's just my view, anyway. Take care, Sarah

Hi Cat I would really like to join and will send you my email address as a PM. My son is a very young 16 and has it all just around the corner think. He is starting to hope girls notice him (I heard him talking to his sister) but looks way younger than his peers, voice hasn't broken yet. Plus he talks in such a formal way that people find it hard to be relaxed and joke around with him. So would love to talk to parents in similar position, Sarah

My kids are older now (teens and twenties), and it's been my experience that taking responsibility only seems to come after I've been prepared to not exactly take it for them, but at least acknowledge that's how it seems to them at the time. They may well be able to say later that they were blaming the wrong person/thing, but at the time I have found it defuses the situation if I say almost humorously, 'Must be my fault I suppose', or if it's a more furious situation, 'I bet it feels like it's all my fault, doesn't it' They do seem to be able to admit things more now - I think it was the shame that they couldn't bear, and somehow me taking it a little bit (not completely) seemed to make it less terrible and something they could come round to admitting later. Much later! Sarah

just a thought - maybe you could try saying 'you think it must be my fault, don't you' - kind of taking it a little bit, but not completely. might work! worth a try? Sarah

I agree about talking about it and finding a way that seems natural to your family - whether it's the paddling idea or circuits/wired idea or any other way that feels like the way your family talks. We did talk about it with my son (now 16, diagnosed about 8/9), but not as a disability, as a way of thinking and seeing the world. I suppose I'm just saying I couldn't separate my son from the way his mind works, so I can't talk about it as a terrible thing or some kind of disease or even badness like the school above. I genuinely don't think there are only two ways, the NT way (what's that?) and non NT. I think each person makes sense of life in their own way. Granted some people find it harder than others, but they also see things that others don't, that seem totally obvious to them. AS seems to me to be an intrinsic part of my son's personality. I have found his perspective on the world to be original and fascinating and I have learnt a lot from him. I certainly would say that he has to overcome obstacles that other people don't, but I admire him for that and he knows it. Those obstacles are often a result of extreme sensitivity in my view, which has a lot to teach those of us with thicker skins. He's also had to learn to deal with the fact that even though he's so sensitive, he still can't always have the world re-arranged around him, much though he might prefer it. I've found AS (in him and in other people we know) to be very much on a graded scale, depending on how stressed he is, how much information comes in at once, age, situation, all kinds of factors. It can feel like a real problem sometimes and has certainly not made my son's life any easier. But there's no doubt he's a real original and I'm proud of him, and I have tried to talk about his AS in those terms. all the best, Sarah

Hi Lisa sounds like the real issue is that they aren't really taking his needs into account enough and providing for them. There's no way they should just send him home like that - it makes your working life impossible for one thing, and it doesn't solve the problem for another. I would write and ask for a meeting and really put the ball in their court of how they plan to meet his needs more effectively than they are at present. You probably have already done this but don't be embarassed to ask to meet as many times as you need till you're satisfied with the provision. broadly speaking - i know it can't always be perfect. Get whatever ammunition you can from what they say in the school prospectus/website they want to do for inclusion and meeting individual kids' needs. Don't know if you've come across the 'Every child matters agenda'? - says every school should be helping kids enjoy and achieve, among other things. The statement might take forever and they might well be reluctant to go through the process, although it can be a great lever if you do manage to get one. But in the meantime, yes they're offering a bit of one to one which is good, and access to the senco room which is good, but maybe the rest of the day is still just too stressful for him to cope with. Don't let them tell you what he 'should ' be able to cope with, there's no 'should' about it - if he can't actually cope with it, then he can't, so things need to be changed so that he can enjoy and achieve. Whatever it takes. Hope they listen and offer something more for him, love Sarah

Hi JsMum Hope you feel a bit better this morning. It's horrible when it comes over you like that. Take care of yourself today, and don't ask too much of yourself <'> love Sarah

Hi Caroline your thread struck a chord with me too. Difficulties with breastfeeding - Yes! very much so. And no, he wasn't my first or even second child. I was expecting it to be a doddle but he was just like you describe, feeding 20 hours out of 24. he's dyspraxic now, so i wonder if he just couldn't get astrong enough suck. I used to be aching for him to really latch on hard, but seemed to nibble gently instead. The milk wasn't as much there as a result, so I never really felt he'd had a good strong feed. He was very unsettled and it was a really frustrating, exhausting time. It drove me crackers and went on for about six months. he took to bottles Ok after that, suppose it was easier to get the milk out. Glad it's going better with Blue take care, love Sarah

Yes couldn't agree more - in same situation myself - and bubble life is really tempting sometimes. But who's it for? We may feel happier in a way, knowing they're safe, but it's not really fully living, is it, for anybody. Think it's a real milestone you've passed yesterday. Well done!!!! it's scary stuff. My son now goes both ways on the bus to mainstream school - he's (a very young) 15 and it took the best part of five years at secondary school to get to that stage, so I know what a hurdle it can be. Congratulations Sarah x

Hi Kate I really feel for you <'> it sounds like you're coping for everyone just at the moment . About taking your son to granny's funeral, I can really see why you might think it would be a good idea not to, partly to give your husband space to grieve without worrying about the effect, and also because of what he might say. I know people are understanding, but we had a terrible experience at the funeral of a friend's little boy. Our friends lost him tragically early; it was just the worst thing in the world, everyone was in tears and my son said 'this is boring!' in a quiet moment. it was just awful. I know it was nothing to the loss of their son, but i still felt terrible that he said it. Hope you find some way to mark the end of granny's life with your family in a way that might make more sense for your son. Sarah

Hi Kate yes, my son always did that on the stairs when he was younger - 15 now and doesn't do it any more, but it still looks like an effort. It used to look like it was way too high for him to stretch swinging each leg up in turn, so he went up one foot at a time and then brought the other one onto the same stair, like a toddler. He has an AS diagnosis, but also dyspraxia, which I gather goes with it sometimes but not always. The paediatrician said something about weak muscle tone, which means it's like he's going against more gravity than most people, like walking through treacle. Doesn't do the tommy cooper thing, but does hold himself kind of stiffly a lot of the time, as if he's having to work to hold himself together. Doesn't automatically know where his body is, if you know what I mean. Makes life so much harder - just carrying himself and getting to places needs thinking about. Wonder whether it means you might kind of forget where your hands are, unless you keep them ready? Sarah