MelowMeldrew

I am opposed to it personally, it makes the child feel unwanted and the parent feel inadequate. Made worse if the child/adult enjoys being somewhere else ! However in order to gain some sort of independence and allow Mum/Dad a breather, we get tired too ! respite has some valid point, but adoption ? no way, not an suggestion any parent would entertain I don't think. I've fought against any suggestion of my child living anywhere else, it would only be if I was completely unable to manage, even then I'd oppose and insist on more home support.

Yes I do, if you are blind or deaf, or lose a limb none of it is going to return. Why re-assess that ? Do they expect your sight will come back ? your hearing ? grow a new leg ?

The problem is they are not interested in the issue if it is obvious you need MORE help, they are only interested if they can give you less. As far as assessment goes, they only listen to their own, and I've been there when their own doctors supported a greater financial need and they ignored that too. It doesn't matter if you can prove it, they still can refuse to accept it. Now I wouldn't go anywhere near filling in a form or any kind of assessment without legal representation in attendance. They can't refuse to have you represented. They tend to take more notice of a lawyer with you. The prime mistake is trying to fill in any form or attend any interview without realistic help, you are bound to lose out. what is the point of medical declarations when they have the onus to refuse to accept it ? The real issue is getting legal representations sorted out so we can use it no-win no fee.

But you can't afford to ignore in case the 'rumours' are fact, it will be too late to object once the decisions are made. Changes to benefits can go through without parliament. Currently few doubt the media and the condems are out to remove disabled from claiming allowances, the media has drawn up against the disabled too, we are all scroungers, frauds and fiddling everything. Joe public laps it up, they want to blame everyone else too, the state cuts everywhere, our kids suffer. I would have though a potential reduction or removal of 40% of all DLA would cause some alarm ? even lower rate gives disabled an 'in' to other allowances, like help with council taxes rent etc, lose DLA lose them too... and support options it has a knock on effect.

It is to be replaced by PIP's, it was mooted many deaf people will lose any right to the DLA/PIP, and the new interrogations (Sorry assessments), will exclude many autistics and their parents too. The endless identical questions that apparently ask the same question all the time are designed to to find a reason to deny any allowances, 40% of current DLA claimants stand to lose out under the new system. You will have to get a financial advisor to fill in the forms and you will have to PROVE where every penny is going to be spent,anything that cannot be quantified will be refused.

I wouldn't adopt the online shopping option or i'd never go out the door. If there is service provision use it. Don't let the child dictate your entire lifestyle, having said that they succeed pretty well don't they ! When people ask me about autism I say just look at us we parents live the same way as they do.

My ONLY strategy is to not shop with him. If it is clear these areas stress him out then don't take him there. When my lad had meltdowns I just returned him home, there is nothing else I can do about it. What I am doing now is trying to get him to small shops, see how it goes then build up a bit at a time, having said that it has failed so far ! also buses and any sort of crowd will set him off. I'm not bothered what other people think personally, if we did that we wouldn't go anywhere.... if he sees adults behaving badly its hardly any example is it ?

I suppose I am relying very much on some success with the medication, feeling a bit dissolute now they are saying here it doesn't really work It isn't just the 10-12 weeks away alternative that bothers me, the fact it may be a lot longer than that, once a child is out of your charge, they tend to ignore you and consult the pros and then overrule you, while the child is still at school home, they can't do that without a fight. That is why I am questioning every word, every sentence they put in every report to ensure they don't control what is going on.... Until my son uses violence against another person they are not being allowed to say or suggest he does, you cannot be sure as time passes who will read the notes, it will possibly be someone who doesn't know you, your family, or the circumstances, they will then act on what they read. I'm all for treatment not for them having the final say.. This week I had them re-write his school review, and the social services re-write their input, and used his psychiatrist report to back me up, that is just twice in one week, you really do have to scrutinise every word they put down. They aren't right because they are pros.... There is a cumulative effect of 'assumptions' and innuendo and plain misunderstandings, that will make things very difficult if they are left there and you need support later on. Work on the basis they will do what is expedient to THEM, and not suited to your child, good basis to start from ! The law states the systems HAVE to adapt to the child, keep reminding them of that...

My lad seems only aggressive with himself no-one else. I hope the medication does work for mine, the consequences if it doesn't.... he has ALWAYS wanted to go to school even when at his worst, the routine mustn't change ! He has lost little school attendance, but his school work and involvement has ceased. They may try teaching him on his own at the school to reduce stress, which seems to be everything at present. I can't fault the school for trying, it depends how long now... if they won't try to cope with him, then he ceases to attend school for maybe GOOD. He cannot be clinically assessed within 100 miles of his home/school, so we would have to agree to him moving out for months or maybe longer... We are still planning ahead and hoping for the best. It must be awful when your child turns on you, but we will take it won't we ? Mine pushed me over a few times, but that was panic to get past me to the road not at me direct, and I had to restrain him doing that, even then he never directed his fists or feet at me.

We are still getting him to school, but they are saying he is not participating in anything at present, and they are constantly watching him and dealing with meltdowns. We rather fear they will pull the plug frankly, and state they can't continue acting as pseudo nurses in a ward, they are a school. This then puts us in no-mans land as there is no where else to go but a hospital ward if the medication fails to calm, there is no possibility of home schooling.. I am hoping to talk them into staying the course and hoping the medication calms enough to relieve the pressure on the school. They have upped the dosage today, I'm not encouraged the general view seems to be Risperidone has limited effectiveness. He is attending school but that is ALL he is doing. It seems a bad idea to add any other medication with Risperidone, Diazepam had very nasty side effects with it, in our case, there is no question of Prozac or anything else being considered.

My son was given Diazepam as well as risperidone, but the Diazepam was stopped pretty quick due to adverse reaction. The dosage he is on now is pretty low I think (?) less then 2mg a day. It would appear that because proper assessments have NOT been undertaken clinically, they are just experimenting with tablets. My lad rendered the dosage ineffective in days, let alone weeks. He is eating around the clock, and sleeping at the drop of a hat.... I asked the psychiatric Dr if he knew what he was doing lol he was none too happy I asked. I wanted to know WHAT experiences he had with autistics, he has had very little, which begs the question is he the wrong Dr anyway to see. Our children need to see specialists but there doesn't appear to be many, or, places where treatment counselling etc can be undertaken especially with children under 16. I've sought a second opinion on his claim there is nothing at all in Wales, or we are faced with sending him out of the country to England or somewhere, which we are not willing to do, as this is catch 22 we send him away, the people here then have no demand for the service. We may have no choices at all, who knows ?

My son is exactly the same as yours in all respects. Risperidone worked for 5 days only in my son's case and subsequent increases of dosage have had zero effect and his aggression and anxiety now daily, not twice a week as before, indeed is now 2 or 3 times daily. We are at the crossroads ourselves regarding being an 'in patient' except I live in Wales and there aren't any services they said, my son like yours also has poor communication to explain what is going on. I meet the psychiatrist tomorrow, time we questioned his approach I think.... however his special school appears to be giving up on him so that may push things quicker. They are saying my son needs at least two adults in support all day at school and sometimes 4 ! which again I will be questioning what the school is playing at. Put yourself in any child's position autistic or not and then faced with 4 adults coming at you, hardly a help is it ? I do it alone and manage reasonably well without laying a hand on him. I've fell out with his social worker now who lied on reports stating my son attacked us, when this has never happened his aggression is very inwardly focused not outward. The implications of leaving that on file are obviously very negative. A meeting Wednesday may mean I ask him to leave... and be replaced. It's a week of meeting that have all the hallmarks of open confrontation with his so-called support services. I asked for the NAS to be more involved with my son as support as they know the issues and SS don't, I got an e-mail that said like it or lump it basically, if I don't take what is given, even if it serves nil purpose, I have to pay £19 an hour to the NAS instead.... my choice !

Mine is 15 going on 16 and his self control has virtually vanished ! Huge meltdown this morning started at 5 am (Later than usual, it's usually 3am !), calmed by 6:45am, then attempted to destroy the living roomand the TV set at 7:15, then floored me. For some it gets easier, for me it doesn't. So much for Rispiridone, water off a duck's back to him ! He totally calls all the shots at home with his Mum, who is scared to say no to him... which makes it obviously a LOT Harder for me. He hasn't attacked us direct yet, but it is coming....

The problem is some autistics (I know mine is one), hasn't the effective communication to explain what is bugging him, so he will 'explain' the only way he knows how, with his BODY ! Mine has a number of quite serious breakdowns, we have as yet never identified what triggers them, have suffered the indignity of others suggesting 'home' has issues, to 'school issues' to TV programs to computer games, unusual noises, he has heard, nightmares, knife on the wrong side of the plate ! the list is endless and covers near everything he comes in to contact with. In that sort of situation how can you ever address it ? At present so long as my child avoids EVERYTHING ! we just about keep him on a manageable level. However our home and social life no longer exists as any norm, he is autistic so we have to live hi life and adapt our home to it. we're lucky to see daylight really !

Important to note no online test is VALID, if, you have a significant hearing loss. No online test will tell you anyway, if you feel you have a problem see a GP. If you want a hearing test do NOT Use online sites like the RNID, because many frequencies cannot be effectively measured, it is too dependent on what phone you have. We've seen people amplifying their phones to test their hearing erm... its a problem already then again it's what ENT depts are for.... Just because you may be unsociable doesn't mean you are autistic !

I think 10 minutes very tame (Sorry !), I have at least 2 or 3 HOURS every night, and 6 in the day despite medication, as I type I have been awake since 2:30am, 6:30am before he went to sleep, me ? no such luck ! We haver asked for immediate respite, after 8 weeks we can't cope with it, but worse neither is my son. MY son doesn't punch us but is completely out of control running into walls, doors yelling and screaming all night just for starters.. He hasn't sat in a chair for months, constantly pacing, running....I couldn't contain him last night, I feel I had no choice but to ask for help.

I was asked by social services to call 999 (Police), no WAY am I allowing the SS to label him a violent thug, and any restraint by the police (Not known for an understanding manner !), is going to trigger more from the autistic, stupid suggestion I suggest is to make things easier for SS than the autistic in crisis. Where, would they take these children anyway ? a cell ? no hospital will take them, and any referral takes months....... emergency services here will not even approach an Autistic with severe behavioural issues, let alone treat them, take it from me I KNOW they won't ! Parents have to weather it out best they can.

My son has just been prescribed this after very difficult behaviour and abnormal screaming and other behaviours, has anyone experience of this ? I read it is for schizophrenia ?

My son hardly ever sleeps, 4 hours would be his maximum, the rest of the time he is awake shouting and yelling or walking around in the dark... He is dog tired before he even starts school, and is having meltdowns there too... I have to sleep in the day time to ensure his safety at night....All I've had is meetings, about more meetings... and the NHS and social services arguing who does what, at present that means nothing at all, or for the foreseeable future either...

Wish I knew, my son has done this and there is nothing that seems to be a trigger for it. My son seems totally stressed at everything. We too get no warning at all. Do you take medication ?

I found after 12 meetings in 7 weeks with nothing at all happening it was pointless attending more of them. It's total frustration. Services such as his social worker and even the mental health team we are supposed to be with, all left me to it, even standing alongside while I argued for help for my son.... contributing nothing at all. I won't go near my general hospital again. They made it clear there was nothing to do even in an crisis situation which is what I had. Try 41 hours of being told to get the hell out, while your child is in obvious mental pain, and no-one suggesting anything else. I get the impression you are blaming me ? surely, that is the system outlook, it's always something the parent hasn't done ? I can tell you my tolerance level is very good, I have NEVER got to a point in 16 years where I thought I would ever have to call the 999 service, now I'm totally convinced I won't again, after being forced the once. I had no other contact despite the 'service provision' he is listed with and despite them constantly updated. I wasted 16 years of my life using these people. You can well understand how some parents get to the point of total exhaustion. That's what the system asks for apparently, If I fall over then they have to act, I didn't fall over quick enough. The resident Psychiatrist gave me a lecture on hospital politics, while my son was screaming alongside him....pardon me if I offended him by stating I couldn't give a fig basically, HIS Problem not mine, what the hell use is he ? There is a child needing help here. It's totally frightening you are faced with an NHS system that doesn't want ill people. You have no idea how many people I had to consult this week 19 professionals, not a single one did a thing. I'm going to bury the hospital after I do sort the support out.

Indeed they did and he said the same as the other drs, autistics should not attend a general hospital even in an emergency unless it is a physical ailment. "We mend bones, not brains..." There is a clear line drawn with patients with autism and MH issues, they don't want them there. All they do is phone a social worker and it's 'their problem'. I now know where I can't go in an emergency, so where do I go when I do have one ? Are their specialist short stay hospitals/centres for MH/Autism about ? there are none here.... Seems the policy is simply to drug our children to be docile without ever offering therapy or even an assessment... There was nowhere they can refer them.. All I got was another 3 meetings, can't now be bothered to go... I don't want to talk to them anymore unless they are offering a service to us, I said tell me that, I'll attend, talk is cheap.

He was taken in because there was a total breakdown and he was aggressive, I couldn't manage it. It is the first real meltdown I've ever seen that was an issue, but is now continuous and 24/7. I was treated appallingly by 11 drs I saw there over 24 hours, and they did not issue him with sedatives, 10 never examined him, and refused to help me calm him. I had a child in crisis and they made him and me worse, I was kept awake from 5.30am until 5 pm the next day near 41 hours, with not a single nurse or anyone helping me.. There is no system of referring an child that has lost total control, not even a stop gap to ascertain treatment, I and my child were just left, then told to go. I'll never phone for an ambulance again, or go to the hospital, they have made it clear it's 'my' problem... Even a social worker assigned to him would not speak up for us, I am considering asking he be replaced immediately. I don't care about their politics of mental and physical health, they did not respond to the basic need of a child. They contributed to more stress than there needed to be. That was 100% unacceptable, and uncaring. It is because health services won't talk to each other or work with each other. I'm no piggy in the middle for their politics. Once my child does get the right care, I am going back there and they are going to see how the media will react to their 'Care'. I'd certainly want two nurses carpeted and 3 doctors. It's worse than 3rd world care.

Well it was a situation I never thought existed. I always thought if the worst happens to your child and they have to go to hospital you will at least see professionals doing what they can, I found there was no NHS any more, I was totally shocked at it. What I saw was some sort of tiered health system that will help you if you have cancer a broken leg etc, but if there is a MH issue they don't want to know you and is isn't a health problem at all its some political football to play with and argue about. So in effect they said if my son has another episode, do NOT call for an ambulance or a Dr at the hospital. The MH team here said they will change the tabs to Respen (?) something but never gave me a prescription that will take another two meetings ! I'm a strong person myself, but they totally exposed me as vulnerable via my child by saying do not call us, it's your problem, I said it has always been my child and he's NOT the problem YOU are, you can't use my child as some political in fighting pawn over who does what. When a crisis comes it is then you find out what service really exists, I found there was none and my child's situation was not even a medical issue in a hospital, I was left wondering where do I go from here ? do I call for medical help or not ? Not, seems to be the answer. The entire medical opinion at a general hospital was Autism is not a medical issue they can address and it is a social one. Medical staff were apparently instructed NEVER to handle a patient too, even to prevent self injury, social services said the same,so, back to mum and dad then ! so how do they treat them ? They practically banned me leaving the hospital to help my wife who was diabetic, said you can't leave him here for us for even an hour. They relented after a heated discussion, but as I arrived home, a fax came I must go back again. A consultant never came for 6 hours after I returned and then they said they didn't want him on the ward, and there was nowhere else I could take him but home again. The stress of it all has made me totally exhausted and there is still the ongoing issue WHO is going to treat my child. ANother 6 meetings to talk about that I suppose. I told them today, I'm talked out with them.

I've had the mother of all meltowns these last 3 days, he was hospitalised, went totally aggressive, hadn't slept for days and then exploded. That was just the start, on emergency dept assessment we were left in a small room on our own with our son kicking off for near 4 hours, before some turned up and then said they will keep him in for observation, I was awake 25 HOURS trying to keep him calm on my own, the nurses ran off and left me to it me,we are not allowed to handle patients personally....He slept for 2 hours only and only after sedatives were give 4 times,which had little effect, Drs came and went didn't want to know, ended up with a seniorsdr coming to me and stating you will have to take him home we mend bodies nor brains..... A social worker came, an specialist I called from the MH team, and I stood there while they argued with the hospital, to no avail, the dr dismissed the social worker, me, my son and the MH dr with "It is a social problem, not ours, you still have to leave..." I cannot believe I am living in 2010 frankly. I am given diazepam for 14 days after that ? NOTHING he is under 16 or something... If he has another meltdown they said don't call us...