bramblebrae

I dunno if I am or but i feel My son has been attending a holiday club via the SS, I had asked if he could attend specfic ASD club and was fobbed off that this one was mixed ASD/mainstream but is it heck its basically a �15 a day childcare and afterschool club. Anyway he has/is supposed to go this week (holidays here last 2 weeks) on tues, wed, thurs with an extra helper, called a link worker, provided by carers centre paid by SS too. First day, link worker couldn't come til lunch time but I was assured someone there had ASD training and they weren't too busy so just to take him - arrived, 3 helpers and about 20 kids - never the less I gave it a go. I phoned to check if he was getting on ok and if i should get him then(3.30pm) or leave him til 6pm the closing time - very narked off sounding lady said there'd been a couple of incidents but he was sitting quietly playing now (now said in a tone!) she described one of the incidents to me and sounded really shocked that it had happened. Note no one was hurt in either incident though 'shocking' one involved my son intruding on another child in there 'one' toilet and refusing to leave and then wandering around bathroom with clothing down as he had difficulty getting them up, never opens the buttons. Anyway I had to sign a report to say I'd read their incident log which they need to keep for some official childcare team thing I really don't know. Anyway felt really bad, I'd been really nervous all the way there to get him because the attitude of this lady on the phone but she wasn't nearly as bad when I got there. DS insisted that he really liked it and wanted to go back. So I took him - no phone calls of incidents or anything but when i got there and asked how he'd been same narky lady was like - no incidents as such but he just won't listen to us- I just don't understand what they were expecting they've been fully informed of the fact he has an ASD he's got the link worker there (who I actually think isn't any use thats the third I've met and they've all been 19 yr old girls (ageism?) but I've never seen them intervene - the one there on the first day just kept looking at me embarrasedly as the woman went on to account the incidents to me and I tried to explain why I thought they had happened oh and then at that point she said maybe I could write more about his behaviours in their enrollment form but honestly he's so unpredictable I really can't cover every eventuality that might happen and so often I say this might happen or that and then if it dosen't I'm treated like an idiot and get the usual 'he dosen't seem very ASD to me' speech as if I'm inventing it! I just feel like I can't win either way Anyway what was worse after saying this she went back to other club helper and the other one said something and they both looked at me then I overheard soemthing like 'no just leave it' and I really feel like something happened they haven't told me about. On top of all this I asked about the link worker and narky lady said oh poor lassie she was from out in the country, about 30min drive or 90min once bad traffic, and she had only expected to be needed til 4 or 4.30pm at the latest so they had just told her to go at 4.30. There had been big confusion over the times he should go and I never did get a straight answer so when he said he liked it so much I just said to him and the helpers if he wanted to come home at any point just phone- all of this club thing is for his benefit as we're quite isolated socially both of us it wasn't for respite or anything and i really had no problem with him going at all in terms of my time so they could of easily phoned me. The FSW(family social worker) who organised and myself had discussed times and we though maybe 10am to 4pm would be fine then when I met the clubs organisor (dosesn't actually work there but is admin as they have several clubs throughout city) said it ran form 8am to 6pm and if we were going to be late I'd have to phone and check where they were as they might go on a trip into town or something, then I checked that week they were defiently not going on trip but I was still confused about times. We don't get up early ,sleep issues, so I never took him til 10.30am both days and had said to them and FSW if he was enjoying it I'd rather leave him be till ending time as I didn't want to spoil his fun, heck I wouldn't of taken him back at all today if I'd had my way. Thing is he is still saying he likes it, he likes the new and different toys is what it is, from the brief conversations I've got from him about it, it dosen't sound like he's took part in any group things or played with anyone, maybe next to them as usual! I really don't know what I'm gonna do in the morning to be honest I'm strongly thinking of taking him to toysrus and just buying him this marble game thing he likes to play with there, I know he'd be happy with it. But is that me just copping out because I'm finding it hard and spoiling something he says he likes though I'm not sure it's good for him at all. I feel like me and my 'antisocial' ways do get in the way of his socialsing already as if I had friends with kids maybe he'd have more friends but I'm just not that kind of person I don't have any friends as such just aquaintances. I can get along with anyone usually on a surface level but not any closer than that. I don't want to be any closer than that! 2 fairly relaxed peaceful days at home I even had a nap without constant interruption and I feel more stressed than ever! it's not right! I seriously think I'm just not equiped to handle any kind of conflict outwith family at all, I've left numerous jobs because of it in the past, it's always at the 2yrs in mark everyone just gets too familiar with each other every time. Lorraine

Glad to here the meeting went well in that they've agreed he needs a statement. You never know hopefully with more support in school his overall stress levels will go down and things at home will get easier all round. Hope it all gets put in place asap. take care Lorraine

Just incase this is some sort of delaying tactic there using you know to get you to stop from calling the lawyers out...could you phone Lea lady discuss what PP said ie basically that she herself now thinks differently from the views she expressed at the meeting and ask her to put this is writing to you. Im just thinking if the meeting was minuted then what took place at it is all the 'official' descisions you've got but now things appear to have changed but only verbally I think getting something in writing at this point might help incase things reverse and who said what is changed. Sorry I'm not wording this well (do I ever lol) but do u see what I mean? It's all word of mouth and deniable later, written stuff is better to have and if they won't give it you now, you could go ahead with your plans as the were before. Lorraine

With all due respect to her teacher status it certainly give her no basis for deciding if someone is on the autistic spectrum. She can tell you what she sees but can't assume from this that he is not just because he dosen't behave like the kids she has experienced within a school environment. I wouldn't feel stupid you probably have a wider understanding of the broader aspects af ASD than she does as you have obviously spent time reading about it. Let the gp go ahead with his assessments and see what the trained professionals think though I do realise some people haven't had much luck with them either unfortunately but hopefully you'll get someone who can discuss properly with you your concerns. On a slightly different note ...I do wish people would stop indicating that ASD means bad behaviour, once my son announced in the shoe shop to complete strangers he had ASD and one lady says no you can't, you seem far too well behaved to have that... I was rendered speechless as on one hand she was saying what she thought I wanted to hear probably and on the other she was insulting ever autistic person in the universe! I mean my son has had what on the surface looks like bad behaviour as a result of frustrations within environments he can't cope with and of course the usual 7yr old cheekiness I get but I'm pretty sure it's not listed on the diagnostic criteria for any ASD. My son dealt with his frustrations by lashing out at anything nearby adult kid objects it didn't really matter (still does but after some anger management learning has learnt to walk away quite often-really depends on the incident and the reactions of other people involved) other kids with different personalities deal with them differently and some bottle them up til they come home where they really do feel much safer. hope you get some concrete answers though it's not nice in diagnosis limbo land but many on this board have been there before too and can give lots of advice and support so hang in there take care Lorraine

Hi This is probably a bit far fetched lol but I used to work for the benefits agency not long after it was changed from its old name DSS I think it's now DWP dept of works and pensions now or something I've lost touch with all the abbreviations anyway we used to get calls put through by numpties at the local council looking for dept of social services ie DSS when we were or had been the dept of social security again DSS! It beggars belief that someone working for the council and advising the public could confuse the two but it happened ...just wondered if there wasn't a mix up and the guy who you spoke to was actually a benefits officer and nothing to do with Social Services. It's probably not but I'm trying to figure out how on earth he could not know about direct payments it's been around for long enough now!! Ah well I suppose it shouldn't surprise me at all my Family support worker from the SS is as useless as a chocolate fire guard! hope you get somewhere with it all Lorraine

Also meant to say my son is 7 he has what I call mini obessions. Overall he loves toys adn always wants a new one but over time he's jumped form thunderbirds to batman to doctor who and power rangers with a bit of transformers thrown in oh yes and of course thomas the tank engine lol. He reads books alot and is very advanced at reading and it is a great tool for calming him down. He will read anything at all including my dads readers digest magazines. He's not really into the routine thing but i think thats becasue of me and he would learn better at home and we would both be more organised if we did have some routine but other than school times being fixed we kind of take things as they come which usually involves sitting watching dvd's oh reminds me the current thing is james bond we jsut got through all 20 films! waiting for new one in novemeber, or playing board games as it takes our fancy neither of us are very motivated to go out much though I am trying to improve this sometimes. lorraine

autistic spectrum disorder -kind of all encompassing diagnosis includes aspergers classic autism and also i believ semantic pragmatic language difficulties. my son has this diagnosis though during assessment APlD and aspergers where talked about. Clinical Pyschologist who diagnosed said it was best to leave it as ASD as things change over time adn she thought aspergers would get less acknowledgement from benefits school etc She jsut summed it up as he was on the autistic spectrum nearer the higher end?! Bit vague really but I think it's becoming more common. Lorraine

Hi when my son was first sent for assessement he was seen by a multidiscipline(sp) team adn the physio there reffered him to the orthotics department because he had markedly flat feet. He also walks on his toes and has slightly low muscle tone. The orthotics dept gave him splints(ankle foot orthoses AFO's) for both legs for past 2 years he's worn these adn they have kept his toe walking down. This year he has been moved onto stability boots and they are going to assess him after awhile and see how it goes but he might need to go back into splints again. The toe walking has come back alot with the boots but apart from the first couple of weeks when he complained of back pain he;s been fine since. what help are they now offering your son? I know the low muscle tone is defenitley related to ASD not sure about the flat feet as others non-ASD in my family have this and the toe walking is a sign of development delay not sure if specfic to ASD. His walking dosen't actually look different to me though I remember at nursery some kids making fun out of his running which he is alot slower at than his peers. His ankles used to lock into a fixed position between the age of 2 and 3, like after a 30min car journey when i tried to get him out the ankle wouldn't move for awhiel so he needed carried adn was most upset and I did have him looked at by hospital specialist (after asking gp for a referral 3 times and having to get my mum to come in and confirm what I was saying as she'd seen it happen too!),anyway specialist? thought he was fine maybe a little pigeon toe'd but all kids are apparently! Then nearer the time of assessment he was complaining of knee pain. sorry I kinda jumped around a bit there in a rush lol hope it makes sense take care Lorraine

Omg the poor family I'd only heard of the first attempt when her husband died. She must be so very desperate to continue trying to end her life again and again. Is no help been given to the family?? I can't begin to imagine what 35 years of constantly managing to look after her daughter must have been like, we know how little support there is now but i believe 30some yrs ago it was even worse. I see in my own parents now just how much age does tire you out and why indeed retirement is really needed by 60/65 though I suppose there are some spritely OAP out there but few of them have given 30yrs care to there children in the way parents of sen kids need to. I think your energy levels go down and everything is much harder and its even easier to become depressed by it all. I just hope someone is there for her this time and her and her daughter get the support they obviously need. Lorraine

Thats a disgusting way to treat a child. There taking what may be a disappointment to your son as maybe he feels like he wishes he could participate and making it ten times worse. Your son deserves an apology for the way this 'teacher' has treated him. I would be parked outside the heads office tomorrow til he found time to speak to me. It's really not on if they have a problem with the letter ie they dont' agree he should miss PE etc (though I can't imagine why they would but schools huh you never know ) they should take it up with the parent not the child ever. I'm total shocked by there attitude I mean detention for no pe kit when your not doing pe are the joking!! let us know how it goes hope your son is feeling better soon - oh can you stop them giving him the detention? take care Lorraine

Absolutely Fantastic News!!!!!!!!!!!!!!!

They want to know why you want a diagnosis?? that's ridiculous call me jaded but is the government trying to decrease the amount of ASD diagnosisis(new word ) or something? I would ask them what reason would a responsible parent not want a diagnosis? and if it was their child why would they not want one? It's totally bizarre i kinda understand it for adults with undiagnosed with AS who on the surface are mangaing to get on with there lives independantly because part of the criteria for a diagnosis is that it must affect part of their life socially or work wise etc (it said something like that in the DSM criteria) so the doctors ask to get a clearer picture of whats affected and how a dx would help them. But for a child the implications of not getting a diagnosis and therefore little understanding or support at school is so important do CAMHS actually know what is going on in the education system! Lorraine

My son rarely has breakfast maybe a carton of OJ in the car enroute. The last day of school before the holidays he had nothing for breakfast a packet of yogurt fruit flakes and a OJ for snack and we didn't have time to fix packed lunch so he went for school dinners as he soemtimes does where usually he'll eat 2 rich tea biscuits or cream crackers soem milk and yet more OJ. This day was a lunchbox cold meal day of a hotdog (even I think ugh to cold hotdog) in roll a carton of apple juice and a choc ice. So basically he ate the choc ice and that was it didn't even get a drink! School didn't tell me anything about this DS actually did and I'm gonna be having serious words when school goes back. They keep encouraging me to send him for dinners and I've just being doing it occasionally to show them he won't change not yet at least but there still persisting even though there not actually doing anything proactive to help him try new foods, they think he'll just conform on seeing his peers..it aint going to happen he'll starve himself first. A guy from the AWARES conference has contacted a solicitor to see if we have a case for disability dscrimination against the school catering service for not providing a lunch which my son will eat. So fingers crossed I can get some rules changed with it and we can benefit from the free school meals we should have been getting for the last 2yrs+. Lorraine

Hi there I'm gonna ovelook everything else you said and focus on one thing - which is probably really blinkered of me but here goes.. your nephew followed you...he didn't stay with his parents..there must be something about you he likes even if it isn't reciprocated....what exactly does he do to annoy you? is it really intentional? he's only 5 and in as much as you want your family to understand how you feel maybe you should try to understand them too included your nephew. Have you tried engaging him in a quiet game something involving whispering or sneaking about very quietly you know something of your choosing so it would change the environment around you both and maybe you could find a welcome and loving ally to have at these family times. I think kids can be alot more understanding than adults of others differences and if he learns now what u like dislike and vice verse he could be a lifelong friend. I don't get on well with people much except family and they do drive me nuts sometimes but my eldest niece was my best friend when her and her sister came for sleepovers the younger one and my DS would play together happily whilst me and Emma would chat and play lots of games we both loved like the sims etc I found I could just relax and be myself with both of them without any judgements in the way you get from adults. Maybe i was just lucky to be blessed with 2 lovely nieces unfortunately it didn't last as Emma died very unexpectedly 2.5yrs ago of leukemia aged 10. hope things get better with your family gatherings and that your feeling less alone by now Lorraine

<quote>The Rockstar spokesman said the game was "entertainment" and was "out of reach of people who are unable to draw a distinction between what's real and what's fantasy". </quote> I'm not sure how he reaches this conclusion. I would think that some people who are unable to draw this important distinction do get theri hands on games and this is where th eproblem arises. I would agree with Clare in that the tendancies have to be there first i don't think a game or DVD etc can cause a person to become violent. I play alot of games particularly MMORPG it's sheer escapism and I get something out of building up my character and succeding in goals such as I just completed all the quests available for my favourite game this morning (WOOT ) It lets me enjoy slaying monsters etc (not my favourite part but thats just me) safely and I can chat to others enjoying the same thing and discuss strategy etc It feels more like an intellectual pursuit than anything. This game is for 13 plus and I would actually make it higher not because of any violence etc within the game itself but it has a chat filter which is very easy to get around and some people just say the rudest things to each other usually the youngest kids and can be downright mean. Also console wise i just completed Da Vinci code PS2 now this was a 12 cert and my son did watch it with me as I played. He enjoyed it as a story and helped me with the decyphring parts as his atention to details was really helpful to me. There ws some violence in it but it would actually be aviodable almost completely if you were good at being stealthy which I'm not unfortunately! I just saw the fighting as something to get through to move onto the puzzles and progress. I will let him watch the DVD perhaps when it comes out as I've read th ebook but not seen the movie yet.. I'll have to decide on the 'fright' nightmare factor once I've watched it. Overall I'm much more worried about how words can hurt people and online bullying in chat rooms and online games across the internet can be very negative and may affect younger people. I will monitor my son very closely if he ever gets to chatting online with others in anyway jsut as I would his relationships in real life. I think virtually it is very easy to get carried away and say things to people you would never dream of uttering in the real world, well I have done this and regretted later once I've come to my senses but actually I really don't talk to anyone but family in the real world oh yeah and hollering at other '?drivers?' from the safety of my car with the windows up Lorraine

I wasn't too hung up on breast feeding as my sister had really wanted to and then just couldn't get it too work and became really upset over the whole thing. Anyway I gave it a go and DS took to it very well and very often. His father my ex was very distant from DS and I wanted him to take more part in everything and I wanted to be able to go somewhere without having to be with baby all the time so at about 6 weeks I tried getting DS to have a bottle omg he just wanted nothing to do with it at all he never took a bottle ever. At about 3-4mths he was weaned onto mushy solids and was slow at eating but seemed to enjoy it. I quite liked breastfeeding in the end and was enjoying the weight maintenance effect of it when literally overnight at about 9mths old DS just refused any more breastfeeding(I continued to eat as normal and put on loads of weight:() he was having none of it. I was soaking wet with leaking for ages because of this mind you I pretty much was the whole time it was all such a messy business the whole time really as though he got plenty of milk alot escaped too. Anyway at about 18/20 mths I don't know what happened he did the same with most foods and has been very limited food wise ever since. This week at last I've found a new food he likes cashew nuts only to be told by him 2 days later that he dosen't like his chicken pops anymore so that leaves cereal or porridge now for dinner oh or of course cashew nuts but I think too many of them will be just as bad as his chocolate and pringles obession. On saying all this he is a solid little guy but not over or under weight and above average for height. Lorraine

I would feel if your son is giving his opinion it would be best to take it into account as the biggest plus must be that it's somewhere he wants to go at least initially it can always be changed in the future if he realises it's not what he needs. On saying that I see how the nearest one which he wants isn't ideal at all making it very difficult for you ie let him decide but it could be disaster or do the tough love protecting thing and tell him it's whats best for him..however i think the potential for things to go wrong at any school is too high and can see a future of I hate this school and it's all your fault etc etc...Anyway I'll get to my suggestion at last... I would include him in your thinking more or less go over what you say in your post and write down all the pros and cons ..tell him exactly why u think the local one is the worst really and about how friends change over time and they could still see each other out of school, you know the sort of thing. Ask him to think about it seriously and then without promising anything ask him to list them in order of preference and why. Mind you you've maybe done all that already in which case ignore me lol!! take care Lorraine

Seem to have the same problem on a scooter though he will try for longer just can't conentrate on steering and making whichever vehicle go at the same time. Also panics the minute there is any kind of slope. Good idea though as I do think it is better to practise on for overall balance but he rarely chooses to go on it either. He has pretty good balance over his body like walking along little walls and climbing etc it's just when combining balance with co ordinating other body parts..mmh not even balance really its more he can't push scooter with leg or turn pedals and steer at the same time...he can't split his concentration in this way..mmh that was interesting (thinking out loud or out me fingers I should say!). That'll help me describe it better when/if we ever get to see the OT or Psych services. thanks Lorraine

" ...terms of how the DWP define AS..." Oh interesting can't believe you left us hanging there like that what did they say I'm really curious? Lorraine

Hi I couldn't make up my mind on this point so went to goggle and searched for 'aspergers "medical condition"' I ended up on this page here. Where aspergers is described as a behavioural problem under the heading of other medical conditions. Note there are several other categories such as neurological conditions they could have put it under. I know one thing so far I really do not believe it is a mental health condition or disorder though I do believe the likely hood of having an MH later in life is much greater. I'm defenitely not happy with 'behavioural problem' either...going back to look again.... ah ended up reading about the Diagnostic and Statistical Manual of Mental Disorders (DSM) it lists aspergers/autism and other ASD's so I think technically it is a mental disorder under this. I found an interesting article here about how they categorise disorders under mental medical or wellness and about how sometimes the line is very thin between mental and medical. Wow there is just to much reading there. Basically I remember when first going through assessments for DS some professional saying that autism is a physical disability rather than a mental one because there are physical changes in the brain. I believe that and neurology is a branch of medicine and neurology deals with disorders of the nervous system ie the brain therefore I think it is a medical condition all be it one where the damage is already done - a life-long neurological 'medical' condition. Some of the symptoms can be treated with medicines such as melatonin for sleep and perhaps the less proved GL/FC diets and fish oil sumplements. ah I'll probably change my mind tomorrow. I'm not really bothered what the terms they use, it is what it is, maybe there should just be a new Spectrum Condition section on all these forms. What does bug me is my sons last report from school which didn't have the SEN box ticked it just had ASD under Other: and the fact they say he dosen't have a learning disability, 'things' happen at school which wouldn't if he didn't have an ASD and don't happen to other children, this disrupts his learning therefore it is a learning disability in my mind. just my wondering thoughts Lorraine

Thanks for all your replies. It does give me alot to think about. As far as the actual bike riding goes I think we do have to keep trying every now and again- the lack of motivation from him dosen't help and I don't want to regret pushing him into it later but to be honest I can't see it going well cause last try after 5 mins he got it going but then cycled into a bush on the flat and that was it tears and howlers of I'm not doing that again replaced the big happy smiles of actually getting the wheels to turn. Anyway i wil try a nice big flat park with wide paths and see how it goes. I'm still waiting on a OT referral to discuss these type of motor issues cause they seem to be getting worse not better or if its from another side we're also waiting on a re referral to the clinical psych department cause a big part of it is he can't think about two things at once. He only plays with the singstar on the playstation or games which only use the stylus on the DS thingie cause using the 2 sides of the controller at once just frustrates him and I'm not sure if its coordination or concentration or whats wrong. Pc games which are only point and click with the mouse are the favourite though 2 button keyboard games will be tolerated to a certain extent. Thing is OT always said he was fine but I think there is something really wrong somewhere. At the moment I don't think he'll be able to drive a car when he's older and yet others are always saying how able he is and they can't believe there's anything 'wrong' with him, it just bugs me. Sure none of these abilities are the end of the world but people expect so much from him and don't realise what the future might hold and expect me to be all positive about it ...aargh think I'm heading on a downer ignore me- my sister and her family are going to Hong Kong for 2 weeks today, it's making me nervous. take care all and thanks again Lorraine

That's such an illegal exclusion! Did u do anything about it? or just keep him off? Sometimes it's easier to just agree with them but I'd be worried cause if they do things like that with no record they could deny they had said it later and blame you for the absense. Gosh can you imagine what would happen if we phoned up and said DS/DD has had a horrendous week at your school he won't be back til Monday he's needing a break! I can hear the SS knocks at the door just thinking about it. Lorraine

I think your ideas look great and after seeing that and hearing Jericho talk about it being like his sons I'm gobsmacked my sons IEP is utter rubbish - not that he's got one in place at the moment as I was told they were still doing it and now we're in middle of October holidays here. I am going to have to get some advice guys when/if I actually get the new one. All the startegy part ever says on my DS's is with minimal support or none thats it. then there is some seemingly random target like 75% of the time or once a day for things like lining up correctly when coming in after lunch. I've had me head in the dark as usual though it maybe is he dosen't need help in some areas but I really liked your self esteem plan and I'm sure that would benefit him alot. I'll have to ask the autistic outreach teacher to have some input to as I don't think she does at present, which i should of checked on before- ugh I'm so reactive and so want to be proactive sometimes things just do not occur to me! thanks for alerting my brain to what it's been missing think it might of fallen out too! Lorraine

Hope all goes well got me fingers crossed again

Hi I'm up here in the freezing north too. Is L going to or has he been assessed to see if he needs a co-ordinated support plan? That would be equivalent to the English Statements. My son hasn't so far I've never had to push it quite that far and he has got 121 support now within a mainstream setting with no base unit involment though there is one within the school if it becomes neccessary. They were quite good and someone from the base did some anger management stuff with him when he was having an aggressive period in Primary 1 before the 121 was put in place. I didn't take much care at all in what school I picked it is a bit large the school DS is at now but they are quite good with having reviews with the ed psych every term just not so good on general awareness of exactly what high functioning means - there first stance when anything goes awry is that it's nothing to do with DS's ASD because, well I don't know why just cause they are so ignornant of the actual facts surrounding our kids. Anyway knowing what I now know and what has helped us the most is the autistic outreach teacher and she would have been available to give advice and help my DS which ever school he was at within the city - the real difference is that some schools don't like taking advice from outside sources even though they all work for the same ed. dept sometimes it even comes down to the individual and there isn't really much to help choose the actual teacher your son will get. If your city has some advisory outside resource they use such as a specialist autistic outreach teacher or maybe they have a teacher from the nearest special school who can advice lol 'normal' teachers on matters involving ASD I would ask to talk to them and see if they can give you pointers about which school would be best for L. Hopefully you'll get an honest bod who will be able to tell you which schools take on board her/his advice and treat their ASD kids appropriately. Hope you get something your happy with soon. Try not to worry about it to much. Lorraine edited : for political correctness (her/his)