bb1976
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Posts posted by bb1976
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My opinion to you is please be very careful of camhs there are many sites where they have gotten things wrong or not done enough. I have been stuck with them for 4 years and when i finally had enough and tried for a second opinion they turned really nasty to quote my sons lady '' If you dont do what we ask you to do then we will MAKE you do!!'' I now know they didnt want my son to have asecond opinion because if it comes back he is aspergers then they AGAIN have failed. So they have used me as a scape goat and are trying to pin mbp on me which they have used to get my son on the at risk register to MAKE him stay at camhs. I find them very sneaky and underhanded. Your camhs may be different but i am not intouch with a group of parents all with exactly the same stories. And all being accused of the same thing. I hope yours goes well but please be careful xx
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Dear L, Everything you have said is my son. He is now 11 and tells me there is something wrong with his head. he calls his voice evil Michael and he himself is good michael. when he draws himself he has two faces. evil michael tells him to hurt people and do really nasty things. he doesnt like this voice as its ''deep and growley'' i asked him if it sounded like him whe he was angry and he said no. This voice mainly appears when hes upset and angry. people including myself have witnessed him have a full blown argument with it as he doesnt want to do what its telling him. he punches himself in the head to shut it up. he told me not long agao that eveil michael is taking over and when he does you wont have ''me'' anymore. ofcourse i got very anxious about this but Camhs dont believe any of it they have accused me of planting these things to get attention how SICK is that!!!! so i am fighting for a second opinion as i feel my son is infact aspergers. there are cases of aspies with voices i have spoken to diagnosed people with them. So i have been doing my own research as no one in my town is the least bit helpful. You really need to look for someone who specialises in these areas as michael has now tried to commit suicide 8 times due to lack of control and the voices. This will be an up hill struggle as alot of people wont listen? After asking for help i find my son is now on the at risk register as apparently i OVERLY asked for help so obviously its me who ill not my son.... Yes really clever people where i live NOT. But i wont give up as my son needs help to cope with all hes struggling with. I keep his needs as my main focus then whatever they throw at me i can deal with. I am in the prossess of a second opinion which i also had to fight to get. Good luck huni if you need to chat to me further leave me a message and friend request? my heart goes out to you and your son BIG HUGS xx
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Hi i was just reading through the site to see how others go with camhs as for me the have been utterly useless. We feel that my son may be aspergers camhs have sturng us along for 4 years doing absolutely nothing so i decided to go for a second opinion. after they found this out a letter turned up in my sons file at the doctors basically saying that my son who is 11 is fine and i have mbp!!!! to stop any more attempts at a second opinion. I have been convering with three specialists who are horrified at my treatment and agree that my son sounds like an aspie. I tryed to take us away from camhs so they went to social servises and got him put on a protection plan to make him stay at camhs. if they were as good with help as they are at backstabbing they would go alot further!!! my son has attempted suicide 8 times because he feels he doesnt fit down here so whats the point in living and tells me if i loved him i would let him. apparently thats me planting these thoughts in my own childs head ppfffttt they have no clue. i know of four more sets of parents in my area being told they have mbp by camhs as we seem to be the scape goats when they get it very wrong if i had any advice it would be avoid them at any cost..
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Thanks Spam.
I will definately look out for that book, my forms have been sent now but if I am rejected or when it is time for renewal it sounds invaluable. I really do hope we can get this award, I am starting university to do nursing in september and want to be able to give up my part time job so I have time with the family. DLA will allow me to do that and still be able to do the things that my son enjoys and to have the time with him to do them.
I was turned down twice and had to go to trubunal without a diagnosis for my son and at the tribunal the board stated that he should of been diagnosed by now an even told me to go to my local mp for help as my son really needed it? good luck and dont give up x
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Well the big day finally happened.
We got the overall impression that it went well for our side. But you never know until the final decision.
We didn't really go through parts 2 and 3 in the way everyone usually does it. The Panel wanted the witnesses to give evidence ie. both EPs, then both SALTs etc. And the Panel asked questions and allowed me to come back with comments to things the LA side said.
The LA did not come up with anything additional. It was agreed that the Autism Unit is both full and not suitable for my son. So all the LA could suggest was more of the same, putting in the level of provision at his former school - which he is unable to tolerate for more than 2 hours a week child led activities, and where he refuses to go into the playground.
We had late evidence of an Anxiety Disorder to submit, which proved he has deteriorated even further and has mental health issues that only the independent school could meet as CAHMS/CP work with the school team.
The LA did throw a number of accusations eg. that our son had not 'refused school', but that I had 'withdrawn him'. I was allowed to respond to that and detail the papers which demonstrated that I had actually been ensuring he had attended school to the point that both I and CAHMS were uncomfortable with the level of force I was having to use, and that once that 'force' was withdrawn he did not attend - and indeed would have been out of school months/years earlier if it had not been for my determination to get him in.
At the end the Panel allowed each professional to raise any major issue that they felt they wanted the Panel to hear. And they allowed me to give a closing Statement [which I put together to respond to each LA witnesses on details I felt were inaccurate or not a true reflection of what had happened or what had been done.
I feel that I said practically everything I wanted to say, and that everything else is in the Bundle.
The level of provision for SALT/OT/Dyslexia Teaching that our expert witnesses had recommended was agreed and none of the LA side challenged that. So the Panel have to decide if that provision/therapy could be provided within his former school. Which we argued it could not because (a) he won't attend, and (
it is not cohesive or flexible enough, © any funding is year on year and not standard and (d) he moves to secondary next year. It also went to costs with the LA trying to provide figures of 'no cost' to the LA. I had obtained the costs of what his placement funding actually is from LA documents and the SENCO had confirmed that figure to me in an email, which the LA tried to refute, but couldn't because it was from their own documents. And we used the Judgement whereby the cost of provision has to be applied to both sides [LA placement and Independent Placement], and if that is adhered to, the independent placement is better value than the LA buying in the provision.
We also pointed out that my son is due to transfer to secondary school next year. That there has been no Annual Review for 20 months. That any provision into an LA maintained school is 'year on year' funding, and not standard.
We've not slept at all last night, going over and over what everyone said and how the Panel responded to it. The Panel were VERY annoyed at the LA Officer who having agreed the level of SALT provision our son needed as per our independent report, then said they could provide that within a budget of £1250! The Panel commented that that would just about cover the SALTs travelling expenses.
My side kept telling me that the Panel will read through the Bundle again, and that I must have confidence that they will not only read what is there, but also what is not there, and what the LA/school did not do.
I really felt like my son finally had his day in court with a Panel who were listening. Can't ask for more than that really. I just hope they see the futility of trying to work with his current mainstream school, especially as our Independent EP said he was not mainstream material, and the LA did not argue that point.
The SENCO tried to argue that he had made progress, but my independent SALT pointed out that since 2006 the number of words he can read/write has halved. To which the Panel responded to the SENCO "are you still saying that he has made progress?"
Anyway, we've got the agonising two week wait. And obviously will post the result.
Well done to you for putting a great case forward good luck in getting what you need for your son big hugs to you xx
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are S.S involved also? as surely if you 'were' MBP they would place michael in someone else's custody care home for his safety and well-being? so if this was the case he wouldn't be living at home with you?! seems bit confusing mystery to say the least on CAMHS part seems like haven't got no real anything proof /evidence to base the MBP on at all? everything seems complicated!
XKLX
I know!!! yes ss are involved they dont have proof nothing no assessments or any thing they just wanted michael back at camhs when actually i never stopped him going? i feel quite bullied tbh. x
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tbh i am not sure there is a way bk with camhs as from the word go michael hasnt liked or trusted his lady i have had to encorage him to go every week and had some major flip outs on his behalf at being made to go but there must be other places he can go for support. i have put my sefl forward for a psycologyst aswell as i need to off load how i feel also. i hope to get things sorted i need to step back and clear my head and work out where to go from here. I think that camhs feel they are more important than they actually are and keep being told by friend they are just a general practice and have no right to refuse michael a second opinion or diagnosis. but i will fight tooth and nail to keep my son i have done nothing wrong. Beth x
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puberty and hormones is hard/difficult period of time for any 'normal' teen but added into situation ASD and makes things more tricky stressful to tackle at times as lots of changes that go on during this time emotional ,physical and can be confusing to try and work through aswell as having an idea he may possibility have an ASD may complicate things even further for him who does he live with have S.S take him away from you does he live with foster family somewhere? but you not allowed to know where?! have i understood this situation correct? situations have 'improved' for me though i still feel suicidal quite abit and rush of depression hits me all of sudden which hard deal with manage and handle as you feel so lost i have taken several OD's ended up in hosp until early hours of morning from hours of scream shouting verbal abuse getting physical with my parents ending up in me being restrained and also self-harming ( cutting myself) your son sounds depressed do you think it could be that? making him think he'd be better off dead no here anymore? and low self esteem together?
XKLX
he still lives with me huni and i will fight tooth n nail to keep it that way
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Hi bb1976,
I think the best advice is to try your to remain as calm as possible in your interaction with CAMHS.
However badly you feel they are treating you, if they are making serious allegations against you, you need to present yourself as a calm, rational and responsible adult. However justified you feel, this will not be achieved by accusing them of incompetence in an emotional way.
Your advocate should be helping you put together your case in a calm, professional manner, backing it up where you can with written evidence, etc.
I do hope you find the help your family needs very soon.
Bid
Thankyou i am calm around them just not when i speak about them lol but yes i bare this in mind thanks again x BB x
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my mum was accused of being 'overprotective' by my junior's school SENCO and along the lines of MBP and by your situation it can be very hurtful and angry as nothing is proven or true can be soul destroying and wreck family lives and evident here really that's sad upsetting that if S.S have accused you of having this M.I that havn't looked into in further by assessing you by MH professional team doesn't make sense as they havn't got no proof!
sounds like him hurting himself is him trying to express his pain hurt inside his head etc and letting out his inner frustration confusion .... you can only take so much then you 'snap' 'break down' and i've reached that point before where you feel like nothing and no-one can reach you to help you out of situation! my advice is trying to find something else that help him release him emotions/feelings safely like sports ,exercises activities he enjoys to calm/relax him when feels like everything is 'out of control'
i would get in touch with NAS and see what they suggest...
XKLX
Thnka i will do this. i bought him some budda tea light holders as he likes to sit and breath while looking at them. i try my best to understand how he feels but i know i could never fully get it. it breaks my heart to watch the war i see in his eyes but i do intend not to give up and help him to the very best of my abilities as is my mum and sister. thanks again x
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Hi.
Some people with ASD have in the past been described as hearing voices which professionals would describe as auditory hallucinations.However it was fequently later found that this was because the professional did not understand what the person was describing.So a person may describe their thinking as a voice in the head but this is not the same as actually hearing voices.
Professionals in the field of ASD would usually say that this was a miss diagnosis because of a lack of understanding of ASD.
There is solid research evidence of a larger proportion of people with AS experiencing depression than would be expected within the normal population.However this could well be due to the difficulties faced by people with AS in areas such as finding work.
However there is as far as I am aware no scientific evidence of any link between what would be called major mental illness [bi-polar disorder and psychosis or schizophrenia.]
which are the main forms of mental illness for which hallucinations are recognised symptoms and ASD.
It is possible for a person with ASD to also have Bi-polar or schizophrenia however this would be a coincidence.
I think this is important because early diagnosis and treatment for anything unusual like hallucinations can make a huge difference to how well a person copes so anything new like that should be taken very seriously and not just thought of as part of AS.
Also a person with AS who described their experience ''as hearing voices '' who had had a diagnosis of ASD since childhood would always have described it that way.Children are not diagnosed with bi-polar or schizophrenia.However if an adult with AS described a new and different experience of ''hearing voices'' then this would be worth investigating through a referal to CAMHS or an adult mental health team.
Karen.
My son has the voices and mostly all traits of as. there is also scitzaphrenia and bi-polor and autism in the family but camhs are saying i have done this to my son personally!!! they have been a major let down for my son he feels he doesnt fit and the wors he feels the more suicide attempts we r getting he hits his teens in two years so adding hormoans to his now state of mind is not even to be bared thinking about but camhs refuse to admit they are wrong?
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i was diagnosed years ago as having psychotic episodes,ive just recently been diagnosed with aspergers and on one of the leaflets i was given, it says that a small percentage of people who have aspergers also have these, but it also says that this usually happens in adolescence, im 40 now and still having them x
Where did you get the leaflet hun as i am wanting to go with as much evidence as possible to make them listen my son is now attempting suicide as he cant cope and they wont listen?
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Do sensory hallucinations have any relation with ASD?
When I told a therapist, she said it was likely I was simply hearing my own thoughts, and I never brought it up again, because I don't like people questioning my honesty.
I am fighting for my son to be assessed for asd/aspergers and he hears a voice in his head which is not his own so yes you are completely right you should never question what you know to be right xx
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Thankyou, yes i took this to them with my mum (who they say is an unhelpful influence because she supports me as are my sister and my best friend.) they say its all hear say and they dont listen to that!! I find them highly annoying and disrespectful and full of there own importance, to quick to judge and only do half a job, they took back ground information off me about child hood sexual abuse then used it against me. i have been told i have over loved, protected, cared for my son and this is y he is its utter rubish. he needs an independent assessment b4 the teenage hormoans add to his allready difficult stages of his life all he has in me and my family and we r basically muddling through best we can to avoid him hurting himself again? do you have any other ideas? xx i have a complain going through about camhs since that they are now trying to say i have muchousens biproxy to cover there failure of michael. i have an advocate doing this with me i also have an advocate for helping me fight who is horrified at their treatment of me and michael. Ours is a small town and i now feel a usless one at that but i will fight for my son as all i want is for him to feel good about himself. He is saying things to me that(he doesnt know)his dad used to say to me and he did commit suicide? (michael thinks it was a car accident.)
Can a child have asd and aspergers or just one or the other?
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Hi bb1976
I've edited this post to remove the personal information, which could easily identify you, such as your son's name and date of birth, and the names and location of professionals you've been involved with. First names and initials are generally OK to use.
I don't know why Camhs have responded in this way. Have you told them all the information you've given us here about how increasingly stressed your son is?
K x
Thankyou, yes i took this to them with my mum (who they say is an unhelpful influence because she supports me as are my sister and my best friend.) they say its all hear say and they dont listen to that!! I find them highly annoying and disrespectful and full of there own importance, to quick to judge and only do half a job, they took back ground information off me about child hood sexual abuse then used it against me. i have been told i have over loved, protected, cared for my son and this is y he is its utter rubish. he needs an independent assessment b4 the teenage hormoans add to his allready difficult stages of his life all he has in me and my family and we r basically muddling through best we can to avoid him hurting himself again? do you have any other ideas? xx i have a complain going through about camhs since that they are now trying to say i have muchousens biproxy to cover there failure of michael. i have an advocate doing this with me i also have an advocate for helping me fight who is horrified at their treatment of me and michael. Ours is a small town and i now feel a usless one at that but i will fight for my son as all i want is for him to feel good about himself. He is saying things to me that(he doesnt know)his dad used to say to me and he did commit suicide? (michael thinks it was a car accident.)
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noise,light situation as with only eating certain foods and clothes sensitivity is sensory issues common in ASD sounds like could be high possibility of ASD there as lot of classic main signs e.g lack of eye contact solitary child the voices in his head i have personally experienced myself and is scary frightening when my MH issues was playing up has CAMHS assessed for ASD at all?
i put a knife to my own throat and said wanted to die as don't belong fit in anywhere so can empathise with your son and as there is 2 ASD children already in the family i would say needs investigating further looking into and researching has bi-polar and schizophrenia also been looked as he could have ASD and MH probs such as bipolar etc? depression? also common in ASD is obsessions with certain objects,thoughts etc have CAMHS not done action plan of what happen next where u go from here? as in support/help?
XKLX
CAMHS have gone to social services accusing me of having muchousens biproxy strangely enough that happened after i put a complaint in about them then i was told on a one to one that if i dont do as they say they have power and influence to MAKE me do what they want, again they went to social services and have managed to get my son on to the at risk register to tie my hands on getting a independent diagnosis?? i am at my wits end they have been sneaky and underhanded at every turn and have stopped all attempts made by me to find help for him myself. they said the genetic side is hear say and are not interested in any of it. so now i am looking on here for things that will help me and my son get him assessed by someone who specialises in his area of expertise. its horriffic that they say i am to blame i have all my family and friends back me up to say i am a calm and sane person they have no proof and have never had me assessed either so i can proove myself. Its sooo nice of you to tell me about what you went through i hope things have improved for you? Michael is now just about to hit the hormoans so im petrified things will escilate and he wont have the support he needs to cope through it? i welcome any help and advise tyou can give me Many thanks for your reply xx
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Hi all, i will fill yous in with a brief history of my sons problem!
Cameron was diagnosed with ASD at age 4 he is now 8, he goes to a small school which has 2 year groups in each class, he has a statement of 20 hours per week.
The problem i have is another boy in his class! lets call him Fred! Fred is also 8 years old and has a diagnosis of ADD, he has a statement of 5 hours per week.
Fred and Cameron have been at the same school since reception, they have always had a stormy relationship! but as they are getting older its getting worse! Cameron thankfully is generally a gentle boy (which im thankfull for as he is a full head above most of his year group) but there is going to come the time when it all gets too much for him and he will snap! Fred is a small boy for his age, very clever and manipulative!
Fred seems to be attracted to Cameron like a magnet so myself and his mum have tried to socialise them outwith school to try and calm things down at school but to no avail! it almost always ends up as a nightmare! Recently at home Cameron has been unsettled and not been himself i just put it down to the fact that im pregnant, but last week when i went to school to pick him up his teacher came out to me and asked for my help in removing Cameron from the class as he was sitting on the floor sobbing about an incident which had happened earlier in the day with Fred. It took me 30 mins to get Cam off the floor and to get a rough explanation of what had gone on! basicy what i could gather from what Cameron and his teachers said was - Fred had spent most of the morning annoying Cameron and wouldnt leave him alone, it then got messy during morning break and Cameron bit Fred on the leg and Fred scratched Cameron on the face! Now both teachers told me that its really wasnt Camerons fault and that it was totally out of charactor for him to do that! (he is not completley innocent) thay both agreed that he had been goaded into reacting by Fred Cameron told me that Fred had spent the morning calling him his bi£*h! now something else which is bothering me is the face that Cameron is refusing to wear certain pants and sox as Fred has told him they are gay!
Ive phoned the school and i have a meeting tomorrow with the senco/headteacher and Camerons 1 to 1, i just dont know what i want the outcome to be! ive enquired about another school for him, but i really dont want to have to move him! i just dont want the rest of his school days fogged by Fred!
realisticly is there anything the school can do?
sorry if ive rambled on
Have you tried the next step up from school? They must have to answer to somebody? is there a school ombudsman? its worth looking into this is not allowed to happen and i find that school dont tell us half of whats going on as they turn a blind eye to it anyway. good luck x bb
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Thanks Mel,
I just have the feeling that although everyone is "concerned", that nothing is actually going to be down until we are again in "crisis" with him having full blow obsessions. I think he is on the cusp of getting much worse because he is gradually getting worse and more and more odd things are being noticed eg. wide eye blinking, mouth wiping etc. No therapy has been suggested yet, as they wanted to think about it. Infact CP and CAHMS have not done any work with him at all, it all seems to revolve around them talking to me about how he is coping!
i am in the same position as you camhs decided i was the problem not my son as soon as i started questioning there methods the have tried to lable me with a personality dissorder and my son is apparently fine when he clearly isnt dont let them keep it to you if they do this they have already decided it is you causing it? ask to go else where if you child is 13 or over there are many more places to be refered to good luck xx you can go to your local mind charity i have found them very usefull for phone numbers and other help x
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This is my son if any one has any ideas please help me x
As a baby Michael woke3 to 4 times every night and continued this until he was 4 yrs old. As he got to 9 months old and the ‘need to entertain’ stage, he was very hard to amuse and got upset allot. He only tolerated being held to be moved as he did not like being nursed.
As he developed he was a solitary child who insisted on his personal space and had to be asked before being cuddled or kissed as he would get very distressed if this was done spontaneously and he wasn’t expecting it. This ‘personal space’ also applied to talking to people. For the most part he didn’t do eye contact and if anyone tried to talk to him he would turn his head away and totally ignore their presence and anything they said. This was in his home and outside. We adapted to his way of doing social contact so that it was still possible and slowly, over time, he has become tolerant of affection by close relatives although, with the exception of Beth, it is neither volunteered nor reciprocated.
When he was first able to sit up on his knees and balance he started bouncing against the back of the chair (he continues to this day and has given himself a sports injury).This is accompanied by what his Nan calls his war dance song. It sounds like the American Indian chants- a series of unrelated hums, timed to his bouncing.
When he became mobile he started digging loose plaster out of the wall and eating it because ‘I like how it crunches in my head’. In spite of being told it would make his tummy sore, as soon as our backs were turned he was at it again. She did manage to stop the plaster eating. It was around this time that he started eating sponges because ‘they are squishy in my mouth’, and again it was something it was impossible to stop him doing as he stole them and hid with them, no matter whose house he was in. Eventually Beth started buying him baby sponges as they were guaranteed to have no chemicals in them (Beth was told this was fine as long as he didn’t swallow them by Dr B. and just hoped he’d grow out of it. Then scrungies came out and so Beth was able to stop buying sponges of any description because ‘they didn’t sell them anymore’ and got round it that way. She had already told him that washing up sponges had germs in and, at 7, he understood that.
He started developing obsessions. His first was toy cars at a very young age. They all had to be different. By the time he started school he had approaching 500. He knew if Beth got him one he already had (this was the first time he gave Beth a black eye by throwing at her because it was one he already had. He got really stressed out at things not being right) and also knew when one was missing, what colour it was etc. and there was no peace until it was found. The next fixation was running concurrent to this one and then beyond. Real cars, parked on the street. Beth started him noticing the colours to help him learn his colours but he took it to the nth degree because he needed to know all the makes (she had to learn them) and when that stopped being enough he wanted to learn the specs then how an engine worked- he soaked it all up and went on at great length (to anyone who was unfortunate enough to stand still long enough) about them. One of his problems was that he was convinced that there was only one way to get to a place or back home again and became hysterical if we tried to take him a different way. Beth used the cars to change his ideas by pointing to another street and telling him that there were better cars on that street so that he focused on that rather than the change of direction. It is quite possible that the ‘being dead’ is another obsession that is filling his head, equally as intense as the cars but allot more dangerous. He still doesn’t tolerate change. Every time he was left at playgroup he got seriously upset. Then he got sort of settled then he had to move to infants-stressed out again -and Beth was on the receiving end of all this-then moved to juniors. By then he’d realised that after the summer holidays you had to have a new classroom and teacher so the stress started about 3 weeks in. Now, leading up to the summer holidays Michael was getting upset because he knew he was changing schools. He got upset on a visit to his new school and had to be taken somewhere quiet until he calmed down.
Another normal thing that shows his obsessive tendencies was potty training. He managed to become trained during playgroup (they helped with this) and Beth had a potty at home which Michael would use only where no-one could see him (this also applied to dressing and undressing). He became dry at night after he graduated from the potty to the toilet but insisted that he kept pull ups on JUST IN CASE because he couldn’t bear the thought of being wet. He also insisted that Beth went with him however many times he got up in the night. As this was up to half a dozen times she got soo tired she ended up sleeping in his room because it was easier.
All the way through this he insisted on being with no-one but his mam. He got tired very easily and was still using a buggy to go to playgroup. He was (and is) suffering from a condition called pica. This led to not only the plaster and sponge eating, but Beth having trouble with him eating. If it didn’t feel right in his mouth he wouldn’t eat it. He was also reluctant to try anything different, which became outright refusal. He would only eat lemon curd butties, microwave chips, toast, whatsits, skips, quavers, certain flavoured yoghurts with no bits in, dry buns, fairy cakes, and milk from a bottle and not a great amount of any of them. Beth put vitamin drops in his bottles at the suggestion of the health visitor. He didn’t stop having a bottle until just before the junior school when he graduated to a cup and straw. Mrs W, a special needs helper at the juniors, was a great help with broadening his diet as she did baking with him and Beth and then him alone. They also did taste testing in the class and he got allot of support and encouragement when he put anything new in his mouth. His diet is still very limited and he can taste the vitamins so he won’t have them or any of the different ones on the market for children. He still eats dry bread and microwave chips, also uncut loaf, squeezy strawberry yoghurts, tub monster munch strawberry yoghurts, pears, apples, bananas (have to be perfect with no marks even on the skin), grapes, melon, oranges and pineapple, his version of a McDonalds is a dry toasted bun, a few of the fries, the drink and the toy because he won’t eat any meat because it has been an animal, pizza crust with no topping, spaghetti from spaghetti Bolognese with some juice on but none of the bits-he did try it but didn’t like it, sausage roll with the meat removed, croissants (only the diamond shaped ones, not the curly), pancakes, weetoes, frosties, ricicles, weetabix, toast(without jams has crusts, with jam crusts removed and has to be a specific colour of toasting), butties and beans, beans on toast where he says where the beans go on the toast or he won’t eat it and because mum always gets it wrong. He will try things mum gets for herself but doesn’t like them. These sounds allot but the average day’s menu is:
Breakfast -Glass of milk, sometimes cereal
Dinner -Dry cracker, packet of crisps, freddo bar, squeezy yoghurt and a drink
Tea -2 slices bread as butties, or chips, once a week McDonalds, or toast etc in small amounts.
Supper –sometimes take bread or something to bed with a drink.
He nibbles at the fruit at home if he fancies as it’s always available.
There was (and still is) trouble with his clothes. If it doesn’t feel right on his skin he won’t wear it. Now, if an item is washed a few times before he tries it Beth can sometimes get away with it, but if it is tried first and not right, no amount of washing will help.
From he was about 12/14 months old Michael has attacked Beth when frustrated. This included hitting, punching, biting, kicking and throwing anything he could lay hands on at her. She was very upset at this because it was over everything including being picked up, dressed, nappy changes. He was quietest when just left alone with his bouncing. When he got to the ‘terrible two’s’ this increased in ferocity and she couldn’t do anything with him. This made her feel like she was doing something wrong because other people’s children weren’t like this. She had to stop taking him shopping because the lights, noise and too many people had always upset him and made shopping hard but it became impossible and she had to get a babysitter so she could shop for the weekly supplies. This is still the case now.
When he was about 2 she had approached the health visitor, Alison, to see if she had any suggestions of how to stop him attacking her and to help with his feeding problems. She looked into the situation and had regular meetings with Beth. Each few days he presented with another thing that had to be done a certain way and battered and bit her to the extent that she couldn’t stand anymore and Alison arranged respite care for her for 1 hour a week. This would have helped but Michael wouldn’t go anywhere with them and, after a few tries, Beth gave it up because their time could be used elsewhere with children that would enjoy it.
When he was about 4, because of all these traits mentioned above, his aunty Sue and his Nanna approached Beth suggesting that these seemed to be autistic traits and that perhaps a visit to the doctor was in order. Beth decided to leave it for a while and see how he did but, after a particularly bad time with him she went and saw the doctor who referred her to Dr. B at ____ General. Michaels Nan went to play cars with him while Beth explained everything and Michael was put before the board to be assessed for autism. They left it as undetermined because he had the traits but there were a couple of things that weren’t autistic so they wouldn’t commit. Beth carried on seeing Dr B. at regular intervals until, at seven; he became very depressed because he was recognising he wasn’t the same as his peers. He was having allot of arguments at school because he couldn’t get time alone and was alienating friends by screaming at them to leave him alone in the playground. He explained that if he made them fall out with him they would leave him alone. It was around this time that he first started mentioning the voice in his head. He said it was putting him down; telling him he was useless and worthless and he should be dead. The other thing it did was give him things to say when he was arguing with people .Beth and Nan tried to explain that when you think it sounds like someone talking in your head but he disagreed saying that the voice didn’t sound the same as his did. One day, after losing it with Brandon he hit him so hard on his head with a playstation pad that he gave him concussion. He was off school next day and when he went back his mam, Julie, told them what had happened. He has violently attacked Brandon on a few occasions including trying to stab him with a screwdriver for very minor things but that Michael reacts to. This had really upset Michael as he calmed down and was made aware of the wrongness and seriousness of his actions. When Beth was talking to Julie at the front door Michael disappeared upstairs to calm down as Beth thought. So she decided to go and make a brew. She found Michael on his knees, sobbing, with a knife to his throat. He’d decided that the injury to Brandon proved he was evil and that he had to die. This was the first time. Beth told Dr B who said that it was outside her area of expertise and referred them to CAMHS. There have been other occasions since then and even as a matter of general conversation Michael explains that he doesn’t belong on this earth and that he should be dead because he doesn’t fit in. He had a friend, Daniel, who was sleeping over and witnessed Michael have a ‘rage’ and it frightened him that much he fell out with him and won’t come back. This really upset Michael, who can’t understand why, when he’s alright now, Daniel won’t come back. On top of that Daniel has started calling him names like ‘schitz’ and ‘stresshead’ and ‘freak’ at school which is upsetting and angering Michael.
The rest you know.
All of these things have been going on since Michael was too little to be influenced and too young to be told anything.
All these problems are Michael’s own and the only difference is that he is older, stronger, now scares himself because he might really hurt someone, is going to find it allot harder when puberty kicks in properly, and needs proper help and coping strategies in place so that he can control himself better.
He has told me that other m is getting stronger and when he takes over I won’t have the nice one anymore. Having read up on aspersers it usually comes hand in hand with something else. We have 2 autistic children in our family, and his father was diagnosed schizophrenic. His uncle bi-polour and his granddad spent most of his life in and out of mental institutions. But Camhs say this is irrelevant I have no idea how to bypass the useless people to get my son the help he obviously needs?
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On 11/2/2004 at 1:39 PM, sonia said:Hello everyone,
As a family we have visited Legoland this year numerous times. As a child with ASD my son Nathan is entitled to one carer admitted free so my husband does not have to pay. Even better, when you arrive at lego land, go to guest services and get the free carers pass and also the child with the disability gets a red stamp on hand and the other members in the party a black stamp-exit pass, basically you do not have to queue. This is great for our children who have difficulty queuing. A very stressfree day!!!!!
Sonia xx
My son has not been diagnosed but does recieve DLA. Does this still count? B x
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<!--quoteo(post=292228:date=Jul 20 2010, 04:32 PM:name=cmuir)--><div class='quotetop'>QUOTE (cmuir @ Jul 20 2010, 04:32 PM) <a href="index.php?act=findpost&pid=292228"><{POST_SNAPBACK}></a></div><div class='quotemain'><!--quotec-->Hi
Thanks JSMum.
No one could get baseline tests because R wouldn't allow it - he was abusive to the doctors, attempted to kick the door down, cried, and ran out of the place on 4 occasions. Beforehand, I prepared him with a social story, once there, turned it into a game by asking Robert to guess my weight, height, etc. I even had a blood test done to show him that I wasn't in pain, etc.
YoungMinds have been great and on two occasions, I've spoken with a Psychologist who actually works with Lorna Wing. Sadly, as we're in Edinburgh, the structure/services can be quite different.
SS intitially offered a specialist community nurse to help with the challenging behaviour, but changed their minds because R's IQ is above 70. Our local disability team no longer recognise children on the spectrum as being disabled and so are handled by general team.
I've had a look at the safespace website and they look fantastic. I've found that by holding R tightly, and effectively turning his bedroom into a sensory room can help, but I really think he needs professional help and medication.
Just spoken with GP who will contact CAMHS and ask for emergency referral. He's actually quite understanding (his son used to attend same nursery as R and I think it's all quite close to home for him ie could just as easily be his son with these issues).
I take on board what you're saying about the police and if I have to phone them I will.
Thanks again.
Caroline.<!--QuoteEnd--></div><!--QuoteEEnd-->
I would challenge the over 70 IQ as your son is disabled, they shouldnt be using the IQ as a criteria, your son NEEDS provisions and services, so I would request they put it in writing, and then go throw the complaints appeal, I really do advise you ring NAS to get specific laws in Scotland but they shouldnt be refusing him services just based on his IQ.
If R is that aviodant on his bloods then it obvously does need a specialist hospital that can do the bloods, ONE that are use to challenging behaviour, im sure there is techneques they can use to take blood, how many children are the same when it comes to bloods, surely they can find a way to do the bloods?
It does sound even when medication/safe room are in place you bottom line need more support at home so I would again get intouch with NAS to find out your sons Rights to support.
CONTACT A Family also information on community care provisions, you should at least be entitled to short breaks and recreation/social activities, read my social care and solisitor post.
I know its not easy about the police, believe me, its not the option I like to opt to either.
JsMumx
please becareful when being sent to camhs i am having a horriffic time with them and so are many others on here x
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Hi
My son (8.5 - has AS) has been at playscheme today (organised and run by our local autistic society). When I go in from work, I could see that he was tired, but clearly kiddo was fighting it. Not the brightest idea in the world, but hubby played a playstation game with him in his room. It ended in the inevitable situation where kiddo go upset presumably because he was tired and he was losing. Using my keys he dug them into hubby and then tried to hit him with a sweeping brush. Hubby got out of the way and sloped off to bed to leave me deal with the fallout as usual (he works early shifts). Kiddo then demanded he go onto the computer and I objected on the grounds of his behaviour towards his father and that he was over-tired. Kiddo started on me - name calling, shouting, growling/snarling, then battering himself in the face/head, biting himself, nipping himself, crying, screaming, etc. This went on for around 40 mins. I'm so tired, I wasn't up to doing anything other than ignoring it. I was able to see him out of the corner of my eye to ensure he wouldn't cause serious harm (ie thankfully this time, there was no knives involved - this isn't entirely unusual). R was hurting himself for a host of reasons ie he wanted my attention and to get me to change my mind about letting him on the computer, he was expressing his frustration and anger in the only way he knew/was able to at that point in time. I also told him that hurting himself didn't change anything - in fact, he's likely to end up with a sore and bruised face. Gradually, he did calm down, but gave me a barrage of abuse stating that I treat him like a baby - his friends get to stay up late ('friends' are NT and get to do what they like!). I told him that he was very very tired and had been upset and cross, shouting, name calling, hurting himself and his dad and he was in no mood to play a game (if he were to lose, all hell would break loose!). Kiddo then went to bed of his own accord after the marathon self-harming session and eventually fell asleep.
In honesty, under the circumstances (kiddo was tired - any attention was likely to add fuel to the fire, and there were elements of attention seeking behaviour as well as frustration/anger issues), I doubt I'd have done anything differently. Just curious how you folks handle yours when they start hurting themselves.
Caroline.
Mine is now 11 his first suicide attempt was at 8 i have to talk him down from the rage quite often repeating myself. he has used knives so i removed them, then a drill, then a patatoe peeler then a screw driver have had to have a total over haul of my home to make it safe so he now punches himself in the face, strangles himself or head butts walls. when he does these i keep an ear open and a sneaky eye but when they reach this point there is no talking you have to let them calm down first. what ur doing is what we all have to do. my son has no diagnosis as camhs refuse to give him one. hope that helps x
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Sorry your right I should have been a bit clearer. We are involved with the local CAMHS but they are dragging their feet like you wouldn't believe to undertake a formal full assessment for Aspergers. The ED Psych is utterly useless I mean totally incompetent and has done nothing to sort this out. I don't know what else to do to get this assessment sorted because I've been told it has to go to a special panel and the waiting list is 2 years!!!!!!!!!!!!!!!!!!! All they keep saying is that he does have very strong Aspergers tendencies blah blah blah, but I can't get anybody to actually do a proper assessment and give me a straight answer.
The reason I would like a private assessment is to basically confirm what I already know, which is that he does in fact have Aspergers. That sounds a bit arrogant doesn't it, but my instinct is so strong about this I'm not prepared to wait another 1 year for services to sort themselves out. Believe me I'm more than happy to be proved wrong, but it's so frustrating when I can't get a straight answer from any of the professionals involved.
Not sure if that is any clearer lol.
Cheers
yorks
can i ask what the symptoms are that your child has as i am being fobbed off also?
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I think I'd go back and hammer at CAMHS/The Ed Psychs door if in your position - put it in writing that you want a firm diagnosis one way or the other rather than a 'traits' diagnosis that means nothing. I'd also ask them - in writing - if they come back saying they can't diagnose, for a referral to someone who can, and an explanation for why, if they couldn't diagnose, they have not told you that in the first place rather than wasting your own and your son's time. Within that, ask them to send by return details of their formal complaints procedure, as you feel that it seems you have been referred to the wrong service and no one within that service has advised you of the fact despite (x number of) appointments and meetings.
All that stuff about 'special panels' and 2 year waiting lists sounds like BS to me. I can't see how there can be a 'panel' to decide if your son is elligible for assessment(?) - either he's not diagnosed and needs to see someone or he is and doesn't. I don't see any way that a 'panel' comes into the equation, and I would ask them, in the strongest terms, to clarify what they mean.
Whatever you do as far as CAMHS are concerned do it in writing and make sure that anything they tell you is in writing. If someone phones you 'to save time' say 'lovely - thank you; but now we have saved time can you please confirm everything you've told me in writing, so we've saved time <i>and</i> have a permanent record too.'
I know all that sounds a bit of a pain in the bum, but easier in the long term (and less expensive) than getting a private dx which the LEA and ed psych dispute anyway. And if they come back and say, well his dx is ADHD and not ASD then at least you''ve got a firm definition to base any further discussion around.
Hope that helps
L&P
BD <img src="http://www.asd-forum.org.uk/forum/public/style_emoticons/<#EMO_DIR#>/biggrin.gif" style="vertical-align:middle" emoid="
" border="0" alt="biggrin.gif" />i have learned this the hard way they took me in a rrom and told me if i didnt do what they told me to they had power and influence in other companies and will make me do what they want. i am now investing in a mimi recorder i wont be caught out twice!!
Advice on 6 year old son's behaviour
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Hi you describe my son when he was 6 yrs old hes now 11 and tbh we have the same melt downs now over roughly the same things. noise no patience. attention. plus alot more now. he was reffered to camhs but i have found them to be useless and unwilling to help as they try to blame bad parenting which is rubbish my son is my world and all i want is for him to feel good about himself and not want to hurt people and himself. Feel free to add me as a friend huni i hope you get this sorted. Kepp going to your gp till someone listens huni he needs proper help to learn to control his violence and emotions. xx BIG HUGS xx