LizK
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Posts posted by LizK
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In general we have had good care from the medics, the EP, Early Years Team, Autism Outreach and school. My first HV made some less than helpful comments about how DSs developmental issues was down to me and we have gone to war with SALT and could answer yes to some of your points regarding them.
Lx
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Hi,Well, I managed 2 days of lectures and I have to say it was fantastic!! The main lecturer, Luke Beardon, was awesome, his delivery was great and his genuine understanding of asperger people helped to make sense of what we all struggle with, personally and professionally. I have one more day of lectures in a fortnight and then decide what to write my dissitation on.
Too tired to say any more, especially as my eldest son decided to runaway from home after my first day and we spent most of the night trying to locate him and he is kicking off again tonight, refusing to go to school aaaaagggghhhhhh!!!!!!
Stella x
I've heard Luke Beardon speak too and he is absolutely fascinating. He really has got into the mindset of the autistic person not just from the carers perspective but the person themselves too
Lx
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Surely school should be doing this? Or getting help from outside source rather than putting the onus on you. My son had a visual timetable at school which has been put together with help from SALT and Autism Outreach. School have the software though so can add to it as they wish and are great at supplying me with pics for our one at home
There are a couple of useful websites http://www.do2learn.com/ and http://www.childrenwithspecialneeds.com/downloads.html which you might find useful. I use a piece pf laminated coloured card with velcro strips and opposite side of velcro on the cards, get the latter from WHSmithsLx
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I think that whilst most of us are experts at spotting the signs of autism and know as much if not more about it than some professionals unless we have had specific training we are not experts at picking up the other conditions that can present similar to autism. See this a lot in cyberworld where someone posts asking about an autism diagnosis and whilst it could be autism it equally could also be a parenting issue, other neurodevelopmental problem, attachment disorder, developmental immaturity. Not everything that looks like autism necessarily is iyswim
However from a personal perspective I would have loved to have talked to someone about my concerns about my son at the age of two and been given some useful advice rather than the wellmeaning but empty reassurances I got. I think acknowledging the woman's concerns about autism and giving her practical advice as to how to proceed now is great but I wouldn't take it any further than that though sounds like you did not
. Lx
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I found it made my son's sleep worse
I've read that this can be a side effect of the omega-6 oil especially Evening Primrose oil. The only pure omega 3 supplements I've found are capsules which he's too little to swallow. There is some vague link with evening primrose oil and epilepsy too. I keep meaning to try the Eskimo kids brand which our local health food shop sells to see if that affects his sleep. At the moment we try to make sure he eats oily fish at least once a weekLx
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DS, just turned six, is very clingy and gets anxious and upset if he is left anywhere without me. The only place he is happy to be left is at school, home with daddy and he will stay at his LSA's house reluctantly LOL! Anywhere else though is a big no-no and he refuses to be left. He's the sort of child who is desperate for friends but doesn't really know exactly how to go about being friends. It's all a bit confusing for him. This wasn't too bad when he started school but have noticed now that his peers aren't quite so accepting of him as they were which upsets him (but that's another post) He loves playing with other children (in his way) and is always asking if he can have a friend home for tea after school even if he spends half the night ignoring them or talking at them about his latest interest! I'm trying to encourage friendships by having his classmates over for playdates but he rarely gets asked back
Part of the problem is that he won't go back on his own. he's been asked tentatively a few times but when I say that I have to come with him (which also means my 3 yr old comign too) the invite never gets firmed up. Makes me sad in some ways though I guess after school when you are tired and cooking dinner you don't want a mum and toddler along as well. My question really is how to deal with his clinginess not just for the reasons I've outlined above but in case he needs to go to someone else's house for another unexpected reason. Also means that it's hard for DH and I to go out without him and sometimes we do need some time together. I'm torn between leaving him be going with him so he feels secure and confident and hope that over time he outgrows this clinginess. On the other hand I'm worried he will never outgrow it and be the same as a teenager and on that count am wondering if I should try leaving him at someone's house for short periods of time on his own and gradually increase as his confidence builds. I have a good friend who knows him who is happy to do this but am worried it might make his anxiety worse
Has anyone had any experience dealing with this?
Thanks
Liz x
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Has ADHD been excluded? Just that he sounds similar to my friend's 7 year old child who has ASD and recently diagnosed ADHD especially with the manic hyper episodes. Her child's life has been changed by ritalin and one thing she has noticed which surprised her was that her child no longer complains of feeling tired and having 'down' episodes. Was almost like the hyperactivity or energy put into having to concentrate tired her child out.
Whatever is going on must be very difficult to live with the uncertainty and not being able to get an answer until older
Lx
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Leicestershire, fab autism outreach service if you can get it, poorly resourced LEA similar policy re reducing statements and trying to tighten up further and lots of tribunals. Derbyshire still statement along the old' lines I believe
Liz
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This is why my son has a diagnosis of HFA not AS as he has a speech delay. The best explanation I've seen is that in AS the child has normal early speech development in the first 3 years of life and are of normal or above normal IQ. That is related to early development of spoken speech but they still have the other communication difficulties associated with ASD like not understanding non verbal communication or pragmatics of speech. So they might speak Queen's English but not be able to hold a conversation.
I think personally it is just semantics and a diagnosis of ASD is actually a better diagnosis that separating this into its own arbitrary category which is fairly meaningless. My son functions better than a friend's child with AS despite him being further along the spectrum and allegedly more 'severely' autistic. I think the whole criteria around diagnosis are due to a revamp because of the vagueries around all this
Lx
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I enjoyed the programme too and loved the way two people with AS were just so different rather than the one size fits all approach that most TV programmes seem to follow. Jos superficially seemed an obnoxious chap who typified all AS stereotypes whereas Daniel was self effacing, insecure and wanted to give him a big hug. The struggles he faced were more subtle but poignant. I couldn't decide whether Jos was a less likeable character because of they way his AS affected him or because of his personality or maybe his upbringing and parenting. Just as some NTs are less likeable than others surely that goes for those on the spectrum. I did feel though that he was being opened to ridicule to a degree by how he was portrayed and the sequences towards the end when he was struggling with his emotions about not getting on the team. Felt sorry for him. His AS (and personality maybe) was certainly going to make his ability to function in every day life difficult and I think anyone who thinks that AS is 'mild' should watch this.
Lx
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Buttin' in but when we went last year we got the Disabled Pass from the Town Hall which was worth its weight in gold. We didn't use it all the time, if teh queues were short enough for DS to manage we queued as didn't want to abuse it plus too many rides in quick sucession =overlaod adn queueing let him chill but for when the queues were long it was great. DS found the noise and hubbub hard but we took his ear defenders which made a massive difference and hired a pushchair which he hid in whenever he wanted to zone out. He had a great time, loved the Buzz ride too as well as anything that span! Food was a bit pants too, not a patch on WDW. Best place we found was a restaurant that did a buffet near the castle, make sure you prebook though, long queues
Lx
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Our son was diagnosed in the NHS system but we have used private SALT for therapeutic input.
I would do your research properly if you are going down the private route to make sure you are seeing an actual expert in ASD not just a self proclaimed expert. Although longer wait we felt m$ore confident in the diagnosis of the local paediatrician than the person we would have seen privately. Privately does not necessarily mean better and in the private sector you may not have the coordinated access to EP, OT, SALT that you might in the NHS. Again depends who you pick so do your research. There are various private well respected diagnostic centres though that you can go to, I know there is one in Nottingham and London and I think you can get a quick diagnosis there as you get seen by all professionals. There are issues too with LEAs or schools not taking any notice of private opinions which can be annoying. My son's private SALT report was discarded for the one of the NHS SALT who saw him only twice
I think there are concerns that private reports are not necessarily objective as they are commissioned by parents who pay the person doing the report so more inclinced to tell the parents what they want to here and some private workers no longer work in the state system and so are out of touch. I also think that the state reports tend to state what is the bare minimum whereas a private report will outline the optimal input often which the state cannot meetLx
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My nearly 6 year old chews everything. He's like a dog! I think it's partly sensory and part not outgrowing that baby reflex to chew. DS has chewed since he was a baby and often the first thing he'll do with an object is put it in his mouth. He is undersensitive to touch and I think he likes the sensations he gets from mouthing objects. We have set things he can chomp on like his chewy tubes or teething rings as he has a habit of chewing on his toys and breaking them. He chews more when he's anxious or agitated too. His AOW gave me a chapter of a book about oral-sensory issues in autism so it's fairly common and it suggested activities like fizzy sweets, sucking thick milkshakes through a straw, blowing bubbles to give this stimulation in other ways. I'm sure my son will be a gum chewer when he's older!
Lx
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We moved house 10 days ago, same locality just a bigger house a few streets away. So things like school, local shops and so on have stayed the same. DS1 nearly 6, was very attached to our old house and didn't want to move. We tried to prepare him as best we could, visited the new house, made him a social story picture book and school were very good in chatting to him about it. He was very upset on the day of the move and it is taking him time to settle. For the first 5 days he kept randomly bursting into tears asking to go back to our old house. He has become even more clingy and follows me around the house wanting to know where I am and has started waking more at night again. When we go out in the car he wants to drive past our old house and stares at it longingly. It's been a hard few weeks as he was just settling down to being back at school when the move came. Most days he tells me he doesn't like this house and can we go back to our old house and the other night he forlornly asked me when he could go home. I told him this was our home but he said that was the old house not this one
. He seems sad, is more unsettled and is more aggressive when he's not an aggressive child. I hate seeing him so sad and upset, could cry for him.I know this is to be expected, our old house was his security and he thrives on routine and structure but it's hard seeing him so. Our new house is bigger especially the garden. We live next door to a classmate which he thinks is great but as far as he is concerned there is nothing good about the house. It's hard to as we still have boxes around and the clutter is irritating me let alone a child who gets visually overwhelmed. He still can't get to all his toys and is frustrated by dial-up on the PC as we are still waiting for broadband
His room isn't the same which has made him sad and although we intend to decorate it as soon as possible to be like his old room we can't do it straightaway. I can't get hold of the wallpaper border either as Next has discontinued the range.Oh, I just hate seeing him like this. He's a gentle vunerable little soul at the best of times so when he's like this it's particularly hard and all those protective maternal instincts kick in yet there seems nothing I can do to help him
I don't know whether it simply is a matter of time or whether there are any things we can be doing to help him feel more settled.Lx
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Adam's has various sensory issues being under sensitive to movement, touch and proprioception and over sensitive to noise. His issues with noise are largely due to unexpected loud noises like the whistle being blown at playtime though he is quite happy blowing his own whistle as loud as possible at home
at he is in control! I think he has some issues with auditory processing and has difficultiy filetering out and ignoring background noises which can either overwhelm him or make him hyper. He is showing no obvious signs of visual processing problems or under or over sensitivityFrom what I've read on here especially Ian Jordan's informative replies and in books on the subject there is often a link between different sensory modalities and a child with hypersensitivity to sound might actually be secondary to an underlying difficulty with another sense? Think that's right. He sees an OT and has a programme of activitities in place to help his proprioception and movement issues and interestingly when he has had a lot of proprioceptive input he seems less bothered by loud noises. Aside from wearing ear defenders in noisy situations we have done nothing to address his issues with noise and his hypersensitivity causes him a lot of distress. I also wonder whether his inability to filter out nosie or process it affects his concentration and language ability, he has a 18-24mth speech delay. I have vaguely looked into auditory integration therapy but the scientific studies do not seem to support its benefit and I am concerned that if his hypersensitivity to noise is secondary to something else then it won't work - and it's a lot of money.
School are trying to desensitise him to noise but letting him blow whistles and make noise which he loves. However they took away his ear defenders at playtime and he got very upset and I think they are missing the point. It's not just noise per se but it's unexpected noise that is out of his control and he needs his ear defenders for that. I also thinks he likes the firm pressure they exert on his head too
I think his noise issues do need addressing if that is possible. I don't know what to do, have procrastinated about what best to do and of course there is an issue about cost too. Do I need to get visual procesing checked despite having no obvious signs of difficulties there? How can you assess auditory processing? Has anyone got any personal experience or advice. We live in the Midlands
Thanks
Liz x
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Just read this thread with shock and sadness for what you've both been put through but glad to hear the last few days ahve been a big improvement and you have professionals working to help
<'> Lx
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Not sure if I've waxed lyrical about this chair from Ikea before but's is fab for autistic children with sensory issues - see here
DS loves his. He is undersensitive to motion so he can sit and be spun in it or stand on it and spin. On the other had though if he wants peace and quiet he'll crawl into it and pull the hood down and chill out
Just thought I'd recommend!
Lx
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My son has been back for a week and he's still finding it hard to adjust. He's got the same teacher too so the change hasn't been that big. He's just been very quiet at school,his LSA says he gets times when anxiety crosses his face and he's been more subdued in the evenings and started waking at night. His school have been lovely and his LSA has done everything she can to help him settle in this week and I hope we are doing are best at home to yet he is still unsettled. I find it so hard, feel so helpless knowing that despite everything being done that can be he's still an unsettled worried little boy and there is nothing aside from giving it time that I can do to protect or help him. I know he will be fine in time, he loves school but these first few weeks are always hard
Lx
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Nice thread
My boy is so sweet natured, kind and innocent and always tries his best. His behaviour has improved massively over the last year, his speech is coming on well and he's such a delight
Can I do a proud LSA post too
'cos she's been fab since DS went back , really aware and sensitive that he's finding the transition to his new class hard and spent a lot of time and thought this last week helping him to settle inLx
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I think it was Lorna Wing who called the third part of the triad lack of imagination but it is now well recognised that imagination is only a part of that and it is more accurate to refer to it as lack of flexibility of thinking that encompasses routines, obsessions and so forth. if you look at the diagnostic criteria for this country ICD-10 or the in USA DSM IV (scroll down) you'll see that imagination only forms one aspect and a non-mandatory one. It is also referred to as impairment of imagination not absence of imagination two different things.
My son is nearly six with HFA. He has symbolic play in that he will make a pretend cup of tea or another activitiy that has been modelled to him or scaffolded upon a recent real life experience. For example he loves cooking and will do pretend cooking usually based on what we have done together or the latest episode of Big Cook Little Cook
He will sometimes re-enact his favourite TV programme. What he can't do is have the same sort of spontaneous imaginative play his peers engage in. My DH works with pre teens ASD children and he says some of them have the most amazing imagination, usually sci-fi related. The issues then often are that they don't know where the boundaries between reality and imagination lieLx
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It was great. Very well written and dramatised. Loved how your sympathy with the different characters changed throughout the film and how at the end it wasn't just that the parents had not been giving David enough time and attention but how too they had been babying Ben. Made me think as I think I could end up babying DS1 if I'm not careful and that is not a good thing. It was thought provoking too, made me realise how it's so important that children with SENs get enough input and support, not only for their benefit but for the benefit of the family and sibling but equally that that intervention should not be at the detriment of the other brothers and sisters. I frequently worry about my youngest son and would completely hate for him to grow up resenting his older brother for stopping him doing things or feel less important or pushed out by us. They get on really well now which is a start but I do wonder how he will be when he's a self conscious stroppy hormonal 14 year old?
Lx
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I dislike the ones along the lines of 'I'm not naughty...I'm autistic' as I think they give out the wrong message. I want people to understand my son's autism and the effect is has on his behaviour but I don't want to use his autism as an excuse for poor behaviour because sometimes he can be a little s*d autism or not! I personally don't feel comfortable publically displaying my son's diagnosis as a slogan on a t shirt, I know he's only five but I sort of feel he should make that decision, like I am breaching his confidentiality. I also want people to see him as Adam first not just as an autistic child, I think the public still have an awful lot of misconceptions about autism and not sure having a label slapped on him advertising this fact will actually help. Saying that I can understand why parents would choose to use them and only this week was talking to a lady who found they had been a life saver for her son and her family this holiday. I do have an Autism Awareness phone charm (that keeps breaking
) and I quite fancy a T shirt for him with a small logo saying 'It's ok to be different' or something along those lines. I'm not that much into slogan t shirts anyway tend to avoid them for the boys if I can which isn't always easyLx
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Thanks everyone and
<'> to those who had a difficult summer.School is back now so we shall see what the next year bring!
Lx
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Don't think the programme gave an impartial viewpoint surprisingly enough! Not convinced either child had just ADHD, other things going on which might have affected how thye did and things like the boy downing a large bottle of diet coke was hardly going to help his behaviour
. The study too needs to be interpreted with caution. It was based in the US where a lot more children are diagnosed with ADHD and ritalin used far more liberally than in this country. An alternative explanation would be not that ritalin was less effective but that a proportion of the children never had ADHD at all but due to parenting issues so of course a behavioural management programme would help in these circumstances. The were various counfounding factors that haven't been mentioned either like the fact that the children on ritalin who were discharged back to primary care did worse than those on ritalin who stayed under the psychiatric service possibly due to poor compliance in the first group. The sad thing is that whether the study is valid or not there simply are not enough behavioural support programmes available for children with ADHD so any amendments to guidelines may well be a moot point
Lx