coolblue
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Posts posted by coolblue
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Just been to the swimming baths with the two kids.My son has now turned 9, and when we go swimming he has had to come into the female changing rooms if dad is not with us.
So I had a word with the supervisor and she showed me a disabled changing room that has its own shower. We can use that one. Which will be brilliant. And apparently most swimming baths should have this facility. So I thought i'd post so that other families know they maybe able to use that changing room. Having your own shower is brilliant too.
We had exactly the same issue, Sally. In fact, because my son has problems getting changed after swimming - he just stands there in his towel, shivering, and can't even start to think about what to do next - he needed support after school swimming lessons to help him get changed afterwards. But because he had a female teacher and female TAs, they couldn't go into the boys' changing area, so I had to turn up and we had to nip into a family cubicle in the girls' changing area - which I thought was highly inappropriate since he was nine at the time and there were a lot of girls getting changed in the main female changing room. I eventually asked why the swimming pool didn't have a disabled changing room. "Oh we have" they said "You just need to ask and you can use it." Now why did we have to go through all that? And why didn't it occur to me to ask about disabled facilities earlier???
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Yes its me again, sorry to keep going on about the same thing but I just don't know what approach to take with my son. As you know Glen 15, ASD, severe anxiety, very poor understanding and communication skills, was ill with a cold virus recently that went on for a long time, kept him off School 2.1/2 weeks. It's now half term this week, Glen has another cold would you believe?, but since being ill the first time around the 10th January Glen is not interested in anything that he used to like playing with, even his favourite 'the swing in the garden'. I can't get him back to his clubs that he used to like to attend. It is very hard work getting him to go to School.I am giving a good tonic now that was recommended to me by a pharmacist 'metatone' does anyone else recognize it? You can give this tonic when a child isn't well and also afterwards. I've only been using it a few days so too soon to tell if it will help.
It is just so frustrating though that all Glen wants to do is lay on the sofa with his pillow and cover (got a 'throw' now). Today I'ved decided even though he is sniffing away with a slight cold, no temperature though! I am going to be a little firm with him and get doing more, i.e. get his own snacks, wash up, do some colouring and hopefully play a couple of games with me.
Do you parents think that as a parent I am too soft with Glen considering his age? I tend to do everything for him, get and bring him all his food, snacks, drinks etc. Help him get dressed/ undressed, wash him u name it. I have a feeling what the answer will be somehow.
Anyway if there is anything that anyone can suggest to help get Glen interested in 'life' again please let me know I would be eternally grateful!
If he's having repeated infections, give him vitamin d. Most of the developed world suffers from vitamin d deficiency in the winter, because we're indoors so much. Cod liver oil might do for starters, or failing that a good multivitamin/multimineral supplement. Metatone only has vitamin B1 and a few minerals.
I agree about getting him to take responsibility, but I wouldn't start on getting him to do anything until he's properly better. My daughter (also 15) has had a post-viral syndrome for years. It turned out she had had (undiagnosed) glandular fever and vitamin d, omega 3 and omega 6 have done more than anything else for her recovery.
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I have nothing planned in ASD parents / professionals in the south this year as I get very few / no invitations from autism societies / professionals in the South. I must admit I am a little surprised - considering how many people seem to want to see me, and considering how spectacular some of my presentations are for parents / profesionals. It was like when I did the TV programme " My family and autism", thousands tried to contact me - yet I did not get a single invite to present at conferences! (I have only spoken in total at about 10 autsim conferences in 10 years - including world level ones- it should have been at least a hundred - and so much good could have been done to hundreds of thousands of children). We actually improve childrens lives in seconds.Publicising the kind of thing I do is so important for autsim - yet.......
I have to conclude that parents / professionals either aren't interested or don't believe that sensory interventions can have an effect. I sometimes wonder whether I am wasting my time. Sorry to be cynical - but things need to change - and nothing has in this area in 10 years.
There is a limit to how much I can help - but I look at conferences - the presentations have NOT moved on significantly in ten years. If there is not a paradigm shift then they will not for another 50 - with all the problems in ASD that could be addressed ignored. My contribution is small, but when there is a jigsaw - you need to have all the pieces. And at the moment half of them in the ASD jigsaw are ignored
This is a very interesting observation. I've recently been in touch with an audiologist who wrote a paper 30 years ago about ear problems in autistic children (auditory and vestibular), who, although he's published other research since, says his hypothesis that many autistic symptoms are caused by inner ear abnormalities, has simply been ignored by the autistic research community. Personally, I think it's because paper after paper and report after report starts by saying "no known auditory or visual abnormalities". Researchers read this as "no auditory or visual abnormalities" and prematurely dismiss what sensory researchers are saying.
Children with autistic characteristics are routinely screened by optometrists and audiologists who aren't even looking for subtle visual and auditory abnormalities (basically if the child can 'see' and can 'hear' reasonably well, why look further?), occupational therapists and speech therapists who think the problems are caused by the cerebellum or the bit of the brain that deals with language, and then, if they are lucky, someone trained in the diagnosis of autism who makes a diagnosis based on the child's behaviour. So the parent comes away (as I did) assuming that their child's eyes and ears are functioning normally, so it must be something more complex that's causing the problem.
I think it often is something more complex - calcium levels are often either too low or too high in autistic children, for example, and calcium is essential to human metabolism - but the eyes and ears are a very important clue to what's going on. IMO it's parents who between them have the pieces of the jigsaw. Researchers need to abandon 'top down' approaches and listen to the data. I'll see if I can get you to the W Midlands, Ian
cb
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... My P sqauts on the toilet he won't sit properly so his weight breaks the toilet seat,his solution is to put the seat up and sqaut on the solid rim
.....My stepson used to do that - until he fell in!
cb
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A sincere welcome this time, qwerty
Does your son have issues with balance? (Persistently twizzles, hangs upside down, unsteady on his feet etc.) My son refused to sit on the toilet and used his nappy for years and I think part of the problem was that he found sitting over a big gap very unnerving. He used to have to sit on the seat very, very gingerly, constantly checking behind him.
In the end we bribed him because he loves coins. A penny for every time he sat on the loo. We lengthened the time he was expected to sit in order to get the reward and after about a month... He was seven at the time.
Having said that, he does have dietary issues I'm sure. We haven't yet tried a GF/CF diet, but have found making sure he has one daily high fibre item, effective for the 'sheep droppings' problem. Wholegrain cereal bars, brown rice, organic fruit with skins on (this was a big problem because he struggled to eat the skin on fruit), prunes and the F-plan 'fibre-filler' - which he loves - have worked. Although you need to have plenty of water with the high-fibre cereal.
cb
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Hi, I am new here! Just wanted to share some links I found recently!http://childhealthsafety.wordpress.com/201.../britvaxautism/
http://childhealthsafety.wordpress.com/200...3/japvaxautism/
These graphs show how the number of children developing autism rose and fell in direct proportion to the number of children vaccinated each year.
Sincere apologies to the above poster if I'm wrong, but this looks a bit spammy. I'm not going to click on the links.
Correlations tell you little about causality. Autism is an umbrella term referring to characteristics that could be caused by a lot of different things - different causes in different children. Diagnosis is very patchy and variable and there's a lot of debate about it. MMR is a complex vaccination featuring a number of factors, some of which might impact on some children and not others. We need to do some carefully planned research to find out what, if any the impact is.
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Dysgraphia, like dyslexia or dyscalculia, is not a recognised medical condition, and therefore you can't get a 'diagnosis' as such. All three labels are umbrella terms and basically mean any difficulty with handwriting, reading or arithmetic arising from a suspected underlying organic cause (often unknown), not because the child has a dysfunctional family or has been taught badly. It can be useful if a trained professional has said, in writing, "this child has dysgraphia' (or whatever) because that can head off teaching staff and others who cast unwarranted aspersions on the way the child has been brought up or taught previously.
I strongly suspect that many cases the cause of the problem is a very basic and very minor visual, auditory or vestibular (balance organ) problem. The vestibular system affects eye movements, and you need good control of fine-grained eye movement to read, write or do arithmetic. But minor visual and aural anomalies are not looked for in standard screening tests, so educational assessments often include the words 'no known visual/auditory impairments'. Just because they are not known about, doesn't mean they are not there.
cb
(parent of 11 year-old who has always struggled with speech, reading, spelling, handwriting and arithmetic, but found, at 9, after several 'normal' visual and auditory screenings, to have visual, auditory and vestibular problems).
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I'm just trying to find the best way for my son (9) to be able to demonstrate and record learning. He isn't reading/writing independently. He has dyslexia, dysgraphia, poor working memory in these areas - yet a brilliant memory in others. I am trying to get some balance between him being involved in whole class work, but being able to actually learn and record his learning. His teacher thinks he should not spend any more time out of class on 1:1 stuff as she says it is making him fall further behind. However if he cannot read/write etc then what is the point of him being in class if he cannot do anything with that information. He has to be able to write or type or use voice recognition software or have a reader and writer.With his annual review coming up this is the opportunity to talk with the EP/LEA about this (and many other things). So I don't want to miss this opportunity to discuss these issues.
I feel that if I leave it, my son may make less progress. Then when he transfers to secondary school they will begin from scratch getting to know him. It could take a long time before he has anything in place for these difficulties.
Hi Sally
I'd be really wary about putting too much emphasis on reading/writing. I know that sounds irresponsible because reading and writing are vital skills, but making them a pre-requisite for accessing other learning can lead to a child getting seriously disaffected, because as well as not being able to do what they spend all their time practising, they don't even get to do interesting stuff either. I've lost count of the number of parents I have come across on on-line forums whose boys have suddenly begun to be able to read/write at around puberty, so don't give up hope.
My son (11) benefited most from a SENCO who played to his strengths and took a very 'light touch' approach to his weaknesses. That way he made a lot of progress in things that mattered to him (his class teacher said if none of the other kids in the class could answer a question, he knew ds would be able to - apart from maths, of course) and his self-esteem rocketed. He's now beginning to tackle handwriting and arithmetic voluntarily.
If your son can't read/write at 9 he *should* be getting support in the form of VRS, or a scribe, because his reading/handwriting problems shouldn't be being made into an obstacle to the rest of his learning.
I would also say that SATs are a measure of the school's performance not the child's and most secondaries re-assess the children in Y 7 anyway. They know many primary schools coach children for SATs and so they are not a good reflection of the child's overall ability. SATs reflect a very narrow range of skills.
cb
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Could it be a disturbance in the temporal lobe of the brain ?Several years ago, my sister used to say that she could smell lavender, when there was no lavender or lavender smell. An EEG detected a disturbance in her temporal lobe.The temporal lobe amongst other things controls the olfactory (smell) sense.
Also see Jamie Ward's work on synesthesia
cb
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>>>>>for k with food the thing that worked in the end was social eating with no pressure. if she refused to eat they just shut up her lunch box and left her, but she had to sit at the table until the other children had finished eating. gradually she started taking bites out of things, and we've gone from her taking one bite out of everything in her lunch box 3 weeks ago to eating everything in her lunch box 2 days running this week! of course i fully expect that next week she'll refuse it all again because that would just be too easy, but even a short burst of progress is something
I've found that what works in the end with *everything* is no pressure. Reaching your goal might take a lot longer than we as parents, and especially teachers as people with targets to meet, might like, but I know from bitter experience that ds develops strongly aversive behaviours when under pressure. Gentle encouragement, careful rewarding (we have had to make sure he gets many more successes than 'failures' - ie the behaviour has to be something the child can actually do) and patience have brought big benefits.
Ds had problems with the noise and bustle of dining rooms. If your little one has echolalia, auditory processing difficulties are quite likely, so she might find the noise overwhelming and finding a quiet corner to eat in might help a lot.
cb
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Hi Sally
We decided against Dore, partly because of the expense and also because the assessment centre was difficult for us to get to. Instead we tried Learning Breakthrough, http://www.learningbreakthrough.com/ which was just as well, because when we started 2 years ago ds (then 9) was well below baseline at all the skills. He couldn't throw and catch a beanbag or bounce and catch a ball - at all and would have been strongly averse to anything he felt he would fail at. Because you get the kit, a CD and an instruction book, you can tailor the programme to your child, so we haven't had to coerce him into doing it and he has enjoyed it. The biggest benefit has been that he has noticed a significant, measurable improvement with practice, and this has made a huge difference to his self-esteem because he has grown up thinking he is very poor at all motor skills.
I can't honestly say it has made any difference to his fine-grained skills in terms of reading, spelling, handwriting, maths, multi-tasking or working memory. These have improved but I don't know if that's because of the exercises or not. Having said that we haven't yet reached the point where we are actually following the programme exactly as instructed, because until recently that has been impossible for him. I'm sure most of his problems stem from poor vestibular function and so any exercises providing vestibular activation would be useful.
Our OTs have been very supportive and have given us lots of information, but we never managed to get a tailored programme out of them. Good luck with yours!
Sue
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Interesting question. I've been told my son's autism is due to 'anxiety'. He is sometimes anxious, but I haven't been able to find any research on a possible physiological link between autism and anxiety or showing that people with autism are physiologically more anxious than the rest of the population, as distinct from showing more behavioural signs of anxiety. Anyone come across any research on this?
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It's on the Every Child Matters website, so is the responsibility of the DCSF (or the DfES as was in 2004). I've had the interesting experience of writing to the DfES, local authority and my children's school (at about this time) about a particular issue. They blamed each other essentially, and I suspect this is the type of response you will get. Or, they will tell you about the autism education trust, autism bill, SEN training for teachers blah, blah, blah.Having said that, the more people that complain the better.
Just to add, it might be worth asking local authorities/ PCTs *why* the exemplar isn't being followed. Not in the sense of stamping our little feet, but in the sense of a genuine question, what is preventing it being followed? This isn't always down to money. For example, recently the training period for educational psychologists was extended and there was a dip in the supply of Ed Psychs. (Yeah, I know, it is usually money, but it would be interesting to know at what point the money isn't getting through.)
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We have also never had a multi team agency meeting. We have seen various professionals, but never more than one at any one time! And no-one communicated with the other professionals involved. We've never had a 'key worker'.Who is the person responsible for this document?
I would like to write to someone and tell them how far from reality their document is.
It's on the Every Child Matters website, so is the responsibility of the DCSF (or the DfES as was in 2004). I've had the interesting experience of writing to the DfES, local authority and my children's school (at about this time) about a particular issue. They blamed each other essentially, and I suspect this is the type of response you will get. Or, they will tell you about the autism education trust, autism bill, SEN training for teachers blah, blah, blah.
Having said that, the more people that complain the better.
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Parents having trouble accessing services might like to take this document with them to refer to next time they have an appointment
It's from 2004.
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Don't feel too guilty about not getting your kids involved with others. Sometimes it can do more harm than good. A couple of weeks ago we took ds (11) on a walk organised by a local autism charity. Brilliant we thought, just the job. Ds finds high pitched sounds and fast moving objects very difficult. Guess what? All the other children were of the shrieking, rushing around persuasion (nothing against that - it just isn't what ds 'does'). After an hour he had absolutely had more than enough and so we had to come home.
Yesterday we met up with some of his old schoolfriends (at different schools now) and their mums at a local pub with a playbarn. I know the mums really well, and their kids are as well brought up as you could hope for (which of course is why ds was friends with them). First ds sat with the boys but couldn't keep up with the conversation about mobile phones, so he came and sat with the mums. Then he couldn't cope with the cheese on his baked potato. (It did look and taste like plastic cheese, I must admit.) Then they turned up the piped music and so we had to go outside. The others then joined us and they went to play in the adventure playground. Another kid turns up. Next minute, he's got ds on the floor in a neck-lock. Took literally less than two minutes. Next second it dawns on him parents were present and he scarpers. Ds said that all that had happened was that he (ds) had told this boy his name and asked him what he was called. He replied 'shut up' and then said to the other boys "I can beat the c**p out of him" which he proceeded to start doing before anyone knew what was happening.
The last time we were at this particular pub (inside in the playbarn) I had just sat down with my coffee and ds had been on the apparatus for only a couple of minutes when suddenly he is at my elbow covered in blood. Someone had punched him on the nose. He didn't know who it was. I know he doesn't start it - he's a stickler for good behaviour - but because his arms and legs are all over the place and he has a speech impediment he seems to be a sitting target for the first aggressive child in the neighbourhood.
His response to these incidents has been much more constructive than it has been in the past. He's been pretty upset, but is now determined not to let it defeat him. Good for him, but I still wouldn't let him out there on his own.
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sight test will be a waste of time - you need a visual processing testAnd an auditory processing test. My son (10) has just done the TAPS test and has scored reasonably well on some tests and couldn't even do others. The NHS APD assessment is due to roll out over the next couple of years. See
http://www.ihr.mrc.ac.uk/research/apd.php?page=apd_imap
for info.
Sue
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Wow! All i usually get from mine is aregretably I have a number of pressing local concerns on my agenda so....
(you know the kind of thing).
Hi baddad
Don't know if you were aware of this, but if you ask your MP to ask a government minister for information or their comments on an issue, the MP has to pass on your query and send a copy of the answer back to you. I've been generally singularly unimpressed by the quality of responses from ministers, but this process does mean the government department concerned and the MP get a feel for the level of concern and issues involved. It helps if you know the name of the relevant minister, but doesn't matter if you don't.
Sue
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If the government say they are making plans to get the same results as the proposed bill, why do they oppose it so much? Is it because it would then be law and not just guidance?Joanne
It's because the MP who brought it is a Conservative. They want to pre-empt it, so they get the credit.
There's a distinction between 'guidelines' which are best practice which people are expected to follow, but which are not legally binding, and 'guidance'. 'Guidance' usually refers to 'statutory guidance' which consists of legally binding regulations brought in after the main legislation has been passed. This is supposed to offer the government the opportunity to fine-tune regulations which need changing from time to time, without having to go through the long process of formally changing legislation. In practice, it means they can frame a Bill in general terms, so no one objects, and then change the law without MPs necessarily noticing.
Sue
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I'd be very interested in reading it Ian. I've recently submitted a paper on sensory issues in ASD to a journal and am a former copy-editor, so should be able to get back to you by Friday. I'll pm you my email.
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I would strongly recommend writing a 'report' on your daughter in advance of the GP visit, Mirabelle, and anyone you see subsequently. Describe all the symptoms you're concerned about, including problems at school - get it onto one side of A4 if you can, two sides max. We've adopted a policy of writing to all practitioners we've never met in advance of an appointment - failing this you could take the report with you to give to them/remind you of what the problems are. If you don't do this, and you're anything like me, you'll forget to mention something crucial, or get sidelined by something irrelevant the practitioner brings up, and also valuable time is wasted at the appointment in data-gathering.
Also, get all communications in writing if you can. If you think this makes you look like a suspicious person, plead forgetfulness! Then you have a record of what people have said, when meetings were etc.
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Statements only apply in state schools. Some LAs retain statements of kids who are HE or go to independent schools. Others do not.I think you'll find that LAs have to maintain the statement and review it annually, even if the child is being home educated. Parents do not have to make the provision in the statement, because it applies to a school education, and parents should be providing their child with a suitable education anyway. Parents do not have to attend the review meeting. More info on the education otherwise website http://www.education-otherwise.org.uk/Lega...amp;Wls.htm#SEN
Sue
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Hi Lin
I de-registered both my children - one with CFS and another with ASD (no statement after two attempts) - 18 months ago.
By law, parents are responsible for providing their children with a suitable education. In legal terms, by sending your son to a state school, you are making a choice of provision in the same way as you would be if you sent him to an independent school or engaged a private tutor. The only difference is that local authorities are legally obliged to provide a suitable education if a parent requests it for their child. As you have discovered, there are often differences of opinion about what constitutes a suitable education.
If you de-register your child and decide to educate him yourself, the only responsibility the LA has is that of taking action if it appears that you are NOT providing a suitable education, or that he is at risk of significant harm. Although not legally obliged to do so, most LAs monitor home educating families through annual contact of some kind. Otherwise they have no responsibility at all for his education, as you, technically, have not asked them to provide one. The only way you might get support is if he is registered at a school, but cannot attend. You might be eligible for a home tutor, but hoops have to be jumped through and this is highly unlikely (couldn't get one for my dd).
A few local authorities have supportive, dedicated home education units, but they have a monitoring role, rather than a support role. I haven't heard of an LA that visits more than twice a year, unless there are concerns about the child. Most support will be available from other parents.
Yes, you can use the national curriculum. Yes, you can ask the LA to provide an education at a later date, but as always, you may not get a place in the school of your choice. Yes, your boy will be able to take exams if appropriate.
The LA has to maintain the statement and to review it annually, even if your son is being home educated. You do not have to attend the review meeting. You do not have to make the provision specified in the statement, because that is relevant to school. You should be providing a suitable education in the home environment, which would be different. You will not be eligible for any support from the LA.
LAs vary. We had a sort-of helpful visit from the inspector who monitors provision for children with statements, even though DS hasn't got one, and a woman from the local ASD support service came too, although she is only supposed to work with children in schools. These were both 'making contact' visits, really, and I don't expect any more. The LA has no educational obligation to your son at all, once he's de-registered, unless you are failing to provide an education.
You can still access health services; we still see the OT and the SALT has been invaluable.
I would strongly advise you to check out the education otherwise website at
http://www.education-otherwise.org.uk/
and also
www.he-special.org.uk/
There are a lot of parents out there, home educating children with SEN - our local Parent Partnership recently called a meeting with the LA because they were concerned about the number of parents who were doing this.
Hope this helps
Sue
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Who's to say that your perfect NT baby won't fall in with the wrong crowd when they're 16, become addicted to crack, end up living on the streets and turn to robbery and assaulting little old ladies to feed their heroin habit. Wouldn't that 'wreck your life' or would the parents just be relieved that at least they weren't autistic. Maybe your 'normal' kid could take to wearing a hoody and smashing up cars and knifing other rival hoodies and end up in the young offenders unit, but at least they'd be 'norma'l, eh!
~ Mel ~
This is a very good point, and often overlooked. You could argue that most of the world's most serious problems are caused by NT people. (Not sure if there is such a thing as NT, actually, but that's another issue.)
Compensation cost fears as ombudsman boosts parents’ power to complain about provision
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The Lamb report came out on 16 December. You can download it from here (pdf at top right)
http://www.dcsf.gov.uk/lambinquiry/
cb