KezT
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Posts posted by KezT
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It is a really difficult situation - as you say, if you refuse, they will see that as a sign that you need to be sectioned, which will be much more difficult to get out of in the end, so I would say, on balance, that you will probably have to go along volunatrily.
Just keep as calm as possible, repeat what you know to be true, and go along with their tests and stuff. Hopefully, they will be satisfied with their results at the end of it, and you can try again with getting the medical issues sorted, with the added bonus that they can not try to say it's a MH issue, as that will have been determined already.
MH is still very much in its infancy imo, but we are slowly understanding more. It is hardly unknown for one doctor to believe everything is down to X when in fact it turns out to be nothing to do with X, but is all about Y, Z and Ω! In most cases, when really looked into, sanity will prove itself. You have a DX of ASD, and the pysch's will have to take that into account in their reports. Also, there will (probably) numerous people involved, so a single person's opinion will not be enough to sway the outcome.
I don't think it is something you can run from - it will just reappear and be even more difficult to deal with next time.
So when the referral comes through, just take a deep breath, think positive, and go along with it.
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DS would live off pasta and maybe nasty sliced white bread if it was up to him, but we've always taken the attitude that mealtimes are a social occasion and he has to learn to participate. He has rewards for trying new foods - all he has to do is put one (reasonable size) piece in his mouth and chew at least once
He used to need to have new foods introduced dozens of times before he would do that, but now he usually tries a new food on the second or third time we make it.Some have been great successes
Some have been spat out. These will usually be tried again at some time in the future - we have explained to him that tastes change over time, and he accepts this now - especially since he goes off foods as well as starts to like them - and we accept both ways.I am lucky in that he is, if anything, slightly large for his age, so I never felt desperate to get food into him (although there have been times I was worried!), but I have also always said that if he does not eat the food he is given, there are no alternatives. Partly becasue I refuse to get into the habit of cooking 5 meals for 5 people each night! but partly because I think it is important to eat what is available, and not give children free choice all the time. All my kids can eat fruit, yoghurts, veggies and water at any time during the day tho (DS doesn't much, but sometimes he decides he likes a fruit!)
we also work hard on using cutlery properly - still not really there, but working on it. This is more about helping him not to be bullied TBH - and hopefully to help him attend all those social food functions that exist in adult life - restuarants, dinner parties, dates......
At school he has school dinners. I never gave him a choice - a cooked meal is more nutritious, more hygenic and much cheaper than any packed lunch I would do - never mind the time saved! He is not able to do this on his own yet - still needs individual assistance to help him chose (otherwise he choses bread, pasta and potato each day!), and also to remind him how to eat - he has a tendancy to stuff food into his mouth so fast that he chokes on it.
I think most foods are more about texture than taste. On the few occasions he has explained what he doesn't like it has been texture - he also eats the most disgusting combinations of mushy foods! But on the whole, we have more successes than failures, and he is eating a good variety of foods. I feel this is such an important thing for us to teach theem as children - they will probably have less varied foods when grown up anyway, as they get to chose & cook it themselves, so I want to know I have started them off with as many choices as possible. I have seen too mnay people have serious health issues over restricted diets
Glad you have had some success. Hope you can build on it
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I repeat, from a legal point of view, you can only sue someone if there has been negligence.
Any parent who is concerned enough to think about taking PLI out is obviously (IMO) not likely to be a negligent parent!
If an accident happens that is truely an accident, where all reasonable precautions were taken, and all legislation complied with, no-one can be sued REGARDLESS of the severity of the injuries sustained (there is a separate fund for criminal injury compensation, and most professionals have insurance for "accidental" injury - check out your professional association insurance small print!)
As I said, unless you deliberately send out a child you know is likely to cause injury/damage without any supervision/controls, you can not be sucessfully sued. Even if someone was stupid enough to try, they would lose - and your household insurance may well cover any legal costs you have anyway (always worth checking this - many people pay for additional legal costs cover on many insurance policies, when they are already covered!)
Plus, civil court actions against individuals are really not worth the effort in "minor" injury cases. Very lengthy, expensive, and they are unlikely to get much compensation since it is often done on how much you can pay, not on a set amount - and lets be honest, if you don't pay, they would have to go back to court to get another order to make you pay, which would cost them even MORE money and time.
From a legal perspective, I can not see ANY reason for parents to take out this insurance.
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From a legal point of view
You can only be sued if you have acted negligently. therefore, if you know your ASD child is destructive or physically violent, yet you send him out on his own, you could be sued for any damage he caused (in theory - in practise he'd have to cause a lot of damage to make it worth anyone's while suing you!) Equally, if you know that your ASD child is going to throw all the stuff of the shelves at Tesco's cos he doesn't like blue, but you insist on taking him with you to Tesco's each week, you could, in theory be sued for the damage.
HOWEVER, you can NOT be sued for damage caused if you have taken all reasonable precautions. ie: if you keep destructive child under strict supervision at all times, or go shopping in Sainsbury's instead of Tescos etc....
I can not see ANY need for this insurance. I am appalled NAS is promoting the concept, let alone the specific company!
(Foster carers are in a slightly different position - because they are paid to look after the children they need PL insurance as part of the H&S legislation)
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There is some interesting research going on out there:
^ Ashwood P, Wills S, Van de Water J (2006). "The immune response in autism: a new frontier for autism research".
^ Stigler KA, Sweeten TL, Posey DJ, McDougle CJ (2009). "Autism and immune factors: a comprehensive review".
^ Wills S, Cabanlit M, Bennett J, Ashwood P, Amaral D, Van de Water J (2007). "Autoantibodies in autism spectrum disorders (ASD)".
but ultimately I agree with
Although some abnormalities in the immune system have been found in specific subgroups of autistic individuals, it is not known whether these abnormalities are relevant to or secondary to autism's disease processes. As autoantibodies are found in conditions other than ASD, and are not always present in ASD the relationship between immune disturbances and autism remains unclear and controversialThere just doesn't seem enough evidence out there to make me believe - and I have no intention of stuffing my child full of revia atm - horrible drug. DS "only" has AS - it's not so debilitating that he would need to do that to his physical body. DH is already on a varient of the same family of drugs - not somethig to be taken lightly.......
On another note MS isn't fully agreed to be an autoimmune disease either.
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Autoimmune diseases are treatable - not curable, and not always fixable, but most autoimmune diseases react to drugs.
AFAIK there are no drugs that manage the symptoms of ASDs - not in any credible numbers in any credible success rate.
I have never heard a scientifically evidenced suggestion that ASDs are autoimmune - has anyone else here?
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HelloMy grans cousin has MS and that's on my maternal side. Have you tried looking at google scholar? Thats a site for academics that need research papers about various subjects.
There is a treatment for MS that has also helped autistic's in America. Its called LDN (low dose naltroxene) when tends to improve immune system responses in various patients. It can also help with fibro and ME but unfortunately AFAIK isnt around in England.
Considering allergies and ASD run in families and celiac and ASD runs in families it wouldnt surprise me if a link was found between MS and ASD in families.
Sorry i cant be more specific.
Alexis
LDN is available in UK - called Revia (I think) and used in autoimmune disorders - still dead expensive so you need to have shown little response to traditional treatments to get it. At final trial stage I think (give it out to lots of people and record bad side effects) so still counts as an experimental drug.
AFAIK ASDs are not autoimmune diseases........
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My dad has MS and my son has ASD. I think the ASD runs through my father's side rather than any other, from my limited knowledge of the past few generations.....
I have never seen a connection before though - there are lots of neurological issues out there.
Still, who knows. My cousin has MS too, diagnosed a couple of years ago - when we asked, years and years ago, whether MS was genetic we were told, "no, but it does run it families"
My dad and cousin have different types of MS - dad is degenerative and cousin is remissive. Not even sure how similar they are as a neurological disoeder, let alone any similarities with ASD. If you discover anything, that would be very interesting....... are you in touch with the MS society? they spend a lot of money on research and might be interested in your idea? -
I don't know if this is something you want to consider - it depends on your own circumstances, but our solution to the early morning problems was just to avoid it
DS is allowed to go straight into class when he arrives at school and is a something monitor each term - I think he is fruit monitor this term, taking the free fruit over to the infants classrooms. Last year he was stationary monitor, setting out all the pencils etc on each desk (until there was an issue with the scissors )The school is good about putting stuff in place during the school daty, but it is difficult for them to control before/after, and a bit unfair to expect them to really.
Or you can give him a pep talk on how important goalie is in the game - then he can join in and feel valued?
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Do you want Aspies/ASD's/parents/friends...?
As a parent, I'm happy to complete a questionnaire - what do you need from me?
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good article - i was surprised at it TBH
If you had bothered to read it SP, you would have read
followed by about half the article explaining what the beneficial aspects are..... But all that doesn't change the fact that people with AS "suffer" from the bad bits of AS - especially in some situations.But far from being a disability, there is an argument that Asperger's syndrome can in some respects be beneficialRead more: http://www.dailymail.co.uk/health/article-...l#ixzz0SZQGfxRZ
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He has had a MRI scan, as well as numerous x-rays etc to check for dislocations. There does not seem to be any physical problem, it is definitely psychological/neurological - his mother says "he will grow out if it" and won't take him to pysch's tho.....
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obviously you know both your son and the school best, but it is possible that he is doing Ok at school - some ASD kids spend all their energy holding it together at school then all that anxiety & other issues come bursting out everywhere else - be that home, clubs or CAMHS. \if that is the case, it might be that the school is not being deliberately awkward, but honestly thinks he is doing well..... are there any specific incidents that you know of that you could discuss with them? or a member of staff you particularly trust? or would your son be OK with you "sitting in" the school for a day to see what is really going on?
What is it you want to achieve for your son? If you are only looking at the school setting, and he is doing OK in his mainstraem school, they are right that he is better staying mainstream! perhaps its worth asking CAMHS if they would attend a meeting with you & headteacher to discuss out of school issues so the school understand what you are talking about when you say he is not doing OK.
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My second cousin is about 3 1/2, and his grandmother (my aunt) has been concerned about possible ASD for a while. Recently he has started "cutting off" onE of his arms - he lets it hang completely uselessly right from the shoulder, and will not use it at all. there are no physical problemS, many tests have shown this. the arm continues to hang even when the boy is running/playing quite happily. this usually lasts a couple of days at a time. I reckon it could be a sensory thing?
has anyone else heard of anything similar - his mother does not consider there is anything wrong with him, and his grandmother would like to find some literature so show her if remotely possible.
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Well, the first session was yesterday.
There were parents of 7 children there, 3 of whom had ASD's and another awaiting a dx
The session itself was not the most illuminating, concentrating on how to play with your kids (which I know, and do, and occasionally teach ), but it was nice to talk to other parents, and the course generally looks like it should be OK.I think we're probably the most expereinced parents there tho - we were giving a lot more advice than we were recieving LoL, but on the whole I'm feeling rather relieved that everyone there seemed perfectly decent
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CAB are quite good too - we fill in DLA forms all the time, so know what sort of things to put down. But it is staffed by volunteers, so they will not necessarily have any autism specific knowledge - you will need to have all the right info to give to them. Some CAB's have specialist Disb advisors and some even have specialist childrens disb advsors, but not all.....
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OH's social worker sorted out all our direct payment application - she asked what we wanted, then wrote a report saying we needed double that! then after a while, we were approved. OH is now an employer and it makes no difference to his IB/DLA etc.
The whole process was handled by the social worker, and no other professionals were even asked for their opinion as far as I am aware (although I expect the diagnosis & prognosis were checked). Much to my surprise, after just about one year, they haven't come to check out who we employed or how it's going!!! the money just appears each month, and gets paid right back out again
Direct payments are means tested - we did a bit of additional arguing (through the SW) to get out of the top up payments they originally requested.
Social workers are an varied bunch - I still haven't managed to get one for DS - possibly becasue I put a formal complaint in about childrens SS last time I had any contact with them
I feel it is unlikely I will ever get one now..... But I'm not pushing. If your SW isn't helping, you may need to push. -
hmm, sounds like your school is not making "reasonable adjustment" for your needs, which is unfair (and illegal). Do you have a diagnosis (not toally necessary, but it helps)? An IEP/Statement? Have you/your parents/relevant professionals had any meetings with your school? You need to explain what is needed first, then start fighting to egt it if its not forthcoming
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Blimey - you must have been trawling to find this thread!
It was the first one with MMR in the title on the top page when I went to "vaccines" - I don't usually bother to contribute to these threads as I know most of the people here have already made up their mind that there must be someone to blame for autism, and no amount of evidence will ever change thier minds
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To know whether it is unfair, we need more info....
has the school made any other provisions for you? like, can you go sit in the library or office or somewhere to chill out for a bit? Did you know it was going to be a particularly noisy lesson today, or was that just the way it went? What age are you and what size is your school. Do you have any help in school at present?
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http://news.bbc.co.uk/1/hi/health/8268302.stm
New study shows no rise in autism rates sicne the introduction of MMR - therefore the chances it "causes" or even "triggers" autism seems even less likely.
The study discussed above just showed that children with digestive problems may have had the mmr - what has that got to do with thier autism? Neither of the autistic people in my family have digestive problems, one is too old for the MMR and the other had it. I don't consider that was anything to do with his autism tho.
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How old is he and what are his day to day problems? he may well be entitled to some DLA, but that is done on a "personal care required" system - ie you need to be be able to prove he needs (even if he doesn't get) someone to help him complete day to day tasks
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I am quite sure that someone close to me is an aspie, in fact I am pretty much convinced, I haven't pushed any conversation about it as when I brought up the possibility he was adamant that I was 'reading too much into things'. I think he is basically happy with how things are for him and doesn't want to see it.Good luck
Ditto - everyone close to someone I know knows he is Aspie, but he won't hear a word of it
He was even tested for autism as a toddler, but didn't quite "make the grade" back in the very early 70's cos his speach was so advanced.... but he has his life sorted and is happy with the way things are - so it is not our place to tell him stuff he doesn't want or need to hear. (although sometimes I gossip to his mum - it makes her feel better about his childhood LOL) -
3 years is the standard length. If they think a lot will change they often go for one year. You probably got 4 years last time to take him to 8 years old, which is a big cut off point for many child things. They will probably do renewable awards right through his childhood, cos poeple change! You can get indefinite awards if the condition is permenant, but I don't think I've known one given to a child, and for adults, only after their third application has gone through.
Indefinite awards are usually rechecked every 5-7 years anyway.
Treatment against my will?
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Do you have a support worker/commuity outreach professional who could come along with you?
I would also recommend getting some proper legal advice about this - especially as you say you have evidence to back up that it is totally the wrong treatment for you!
You could start with CAB - they are free, and will, at the very least, be able to tell you your basic rights and refer you on to who else might be able to help. Most CAB's do a drop in service - just turn up and wait to be seen by an advisor, although with some you have to phone to make an appointment. Your uni welfare people might be able to help too - I can't remember, are you still at uni or have you left now?