Help getting CAMHS involved maybe a huge mistake ?

[evilstoat]

This is quite a long story but I'll keep it as short as I can, and fill in any details if requested...to put it simply I am

at the end of my tether...and will refer to children as A being the eldest at 10 yr s, and male, B being 8yrs female, C

being 6 yr s and male, and D being 20 months and male if he needs to be referred to.

 

At the age of 3 yr s B had an unexplained febrile convulsion, several in fact, one of which lasted more than 15 minutes,

everything was checked out and was fine, an unexplained virus was apparently the cause of a rapid temperature, we were

concerned, but the health professionals reassured us that B would be fine.

 

We took their word for this, and carried on as usual. But we did notice B's behaviour had changed from being a placid

child, who plays well with others, to a child who hated any kind of physical contact, who also got very frustrated, had

regular meltdowns, was violent to her siblings, and was quite domineering when it came to games, or if things were not

going her way.

 

We obviously knew there was a problem, and contacted our health visitor, GP ect., the EP saw her at pre-school a few times

to see her, but we were told on numerous occasions that she was fine, and had no significant problems.

 

Things got worse, her behaviour got more an more extreme over the next year or so before she went to reception at the

primary school, we chose especially because of their good track record with parent school relationships.

 

B gradually got worse throughout her time there in the infant part of the school, the teachers (all except one) seemed to

be losing their patience with her, and got a bit over physical with her on a couple of occasions, we were trying to be as

co-operative as we could, sometimes I would be called up to 4 times a day to come into school, and watch her being

disciplined from one teacher to the next, for her behaviour.

 

Things got even worse when she started to repeatedly leave school grounds, because how upset she was getting, we were told

she wasn't leaving school property, but when a friend who worked at the school told us in confidence, that B was halfway to

the corner shop which was 1/4 mile from the school, we started getting really concerned.

 

We confronted the school, who hadn't informed us B was leaving school grounds, they claimed there was no such incident,

this is when my wife and myself decided we were not being told the truth, the last incident at that school was when B tried

to cross the main road outside the school, and a teacher accidentally injured herself trying to stop a car running her

down, we decided she wouldn't go back until B's safety was guaranteed at her time at school, the school never replied to

the two identical letters I took them in person, also communication broke down with the school, and we felt we couldn't

trust them any more in regards to honest behavioural feedback.

 

My wife and myself decided to take a gamble, this was the last resort, to change schools, we didn't know what we would do

if this didn't work, as we were so upset, that she had gone almost 4 years with no real support from the school she was at,

they couldn't control her, her self esteem had dropped to an all time low...she was saying that she wanted to kill herself

and the violence with her siblings, had got to an extreme level.

 

We did change schools finally, as there was no talk of a SEN statement, even though my wife and myself were trying to

convince them all that time at the school.

 

We decided to change the school of B's siblings too, as it meant logistically it was an obvious choice, I will just mention

that, C has a Full SEN statement, and A was supposedly displaying "Autistic tendencies" at the old school.

 

The new school they all attend has been great, admittedly there were some misunderstandings with the provisions on C's

statement when he first started but, they really made an effort to make up for it, they have done so well with C, and he

seems to be enjoying school, A was originally on school action plus, then the new school decided that his progress was so

good at the new school, he is off that now, and does very well, also having a lot more friends, and his attitude, and mood

has raised also, he's quite upbeat when he comes home from school now.

 

But B is still having problems, the school B is at now fully supported her assessment for statement, and she has been given

18 + 5 hours, which the school say is nowhere near enough, but it's a start...she has this reviewed I have been told

today, next week with the EP.

 

Now we get to the really upsetting bit, which I don't know where to turn, I have not been given the official diagnosis yet,

but was told by my GP that a specialist thinks I have Asbergers, I won;t go into too much detail about this, but I’m just

waiting for an official diagnosis at the moment, and find all this fighting really hard...we use to use smacking as a last

resort punishment, up until we realised it did nothing to help, we stopped smacking some time ago, although a lot of people

disagree with this, we used to find it much easier to quickly stop B's behaviour, we feel it did nothing to help, and

hence the reason we don't know, we all know there is a line you never cross, with physical punishment, and have been

brought up well enough to know what that is.

 

We have been seeing CAMHS with B for sometime now, about a year I think...we wanted a diagnosis of her behavioural

disorder, if thats what it is, so we could understand it more, and do the right thing by B...since we have been seeing CAMHS

all they have done is play into B's hands by, what we think is spoon-feeding her questions and possible answers, they have

told us today, that we once had a social worker round, to asses our household, this was to do with B having an off day at

the old school and telling them she was being hit, I presume it was the smacking.

 

My wife was the usual one they wanted to see, but I’m starting to build up a better picture in regards to what is starting

to manifest itself, they were questioning my wife, about the times we used to smack, she got quite upset and emotional when

they asked her about it, asking if I was violent with her, and how often I used to smack, ect.

 

We think we are going to lose my daughter, she likes to play the "Mummy and Daddy hits me" game, she smirked as she said

that in the last session my wife went to, and feel she thinks there is some great place where she will be able to do as she

pleases, but I’m scared she's on the way to getting taken from us.

 

I fully support the school she is at now, they have so much patience, and empathy for her problems, I have been known to go

to the school to help with her behaviour on numerous occasions, and even participated in lessons with her when called, as

she didn't want to join in with her TA.

 

I feel I have lost the battle, all the teachers are very supportive, and have done nothing but help so far, and we are very

grateful they have given so much time and dedication to her, and to C which they have helped a great deal.

 

The final straw was to call CAMHS today, and say, that we don't need another appointment,, as it's too upsetting for us

all, the school have asked us not to bring B back to school after the sessions, as she's too disruptive, and violent

afterwards, and they don't want her to be excluded.

 

I am starting to resent the fact B says all these things to CAMHS during these sessions, and why can't they see we only want

help for her, why can't they see between the lines, B finds it highly amusing, as she does when she accused her TA of

assaulting her the other day.

 

What can I do? it's been 5 years so far since problems began to show, myself and my wife feel we have no fight left, and

quite often feel if we really didn't care, or brought her behaviour to anybodies attention, that this would have been dealt

with years ago, B can barely read, or write, and we also fear for her siblings safety too, she has to be constantly

supervised, every minute she is at school or at home with us, she has been found trying to strangle my son C, he is always

the soft target because of his ASD.

 

Please give me some advice, we are startig to feel she is slipping away from us

 

thank you

Edited September 28, 2010 by evilstoat

[louloutinks]

Oh dear what an awful situation to be in. The thing is with SEN children (and kids in general I think) do not understand the implications of saying such things. They do not realise the consequences. My son is autistic and if he has bitten or hurt someone at school, I do not let him have his reward of half hour on the xbox. When he was supposed to come home on transport, he has said 'he is scared he will get hurt' and refused to get on the bus. When he did come home (after getting on the bus!) the transport lady told me what he had said with a strange look in her eye at me for goodness sakes!! I questioned him why he said this and his reply was 'I wouldn't get my xbox and I am scared of robbers' - this was after saying it was the school staff and then the transport lady he was scared of. Now I cannot make sense of this really but how would it look to other people?? Doesn't make me look good does it lol! Also he went missing at school and the police were called - he was found in his camouflage, hiding in a bush. So I went to where he was curled up in a ball and he was saying 'don't hurt me' then too. He thought I was someone pretending to be his mummy apparently.

 

I think the kids do get confused because of their needs. I am sure that the social services will see it for what it really is and will let you live in peace. It must be an awful worry for you and I hope it comes to an end soon.

[cat26]

Can not offer much help , but boy no how you feel!!!, been dealing with CAHMS for over 18 months with my daughter , come out meetings thinking well thats not helped us again ,, ... good luck my thoughts are with you xxxx

[louloutinks]

Can not offer much help , but boy no how you feel!!!, been dealing with CAHMS for over 18 months with my daughter , come out meetings thinking well thats not helped us again ,, ... good luck my thoughts are with you xxxx

 

So true. My son was with tier 2 then had to go to tier 3 - we was allocated 6 appointments - now where is that going to get you with a child with autism and terrible temper, feeding, sleeping, etc issues!!

[Bookworm]

This is quite a long story but I'll keep it as short as I can, and fill in any details if requested...to put it simply I am

at the end of my tether...and will refer to children as A being the eldest at 10 yr s, and male, B being 8yrs female, C

being 6 yr s and male, and D being 20 months and male if he needs to be referred to.

 

At the age of 3 yr s B had an unexplained febrile convulsion, several in fact, one of which lasted more than 15 minutes,

everything was checked out and was fine, an unexplained virus was apparently the cause of a rapid temperature, we were

concerned, but the health professionals reassured us that B would be fine.

 

We took their word for this, and carried on as usual. But we did notice B's behaviour had changed from being a placid

child, who plays well with others, to a child who hated any kind of physical contact, who also got very frustrated, had

regular meltdowns, was violent to her siblings, and was quite domineering when it came to games, or if things were not

going her way.

 

We obviously knew there was a problem, and contacted our health visitor, GP ect., the EP saw her at pre-school a few times

to see her, but we were told on numerous occasions that she was fine, and had no significant problems.

 

Things got worse, her behaviour got more an more extreme over the next year or so before she went to reception at the

primary school, we chose especially because of their good track record with parent school relationships.

 

B gradually got worse throughout her time there in the infant part of the school, the teachers (all except one) seemed to

be losing their patience with her, and got a bit over physical with her on a couple of occasions, we were trying to be as

co-operative as we could, sometimes I would be called up to 4 times a day to come into school, and watch her being

disciplined from one teacher to the next, for her behaviour.

 

Things got even worse when she started to repeatedly leave school grounds, because how upset she was getting, we were told

she wasn't leaving school property, but when a friend who worked at the school told us in confidence, that B was halfway to

the corner shop which was 1/4 mile from the school, we started getting really concerned.

 

We confronted the school, who hadn't informed us B was leaving school grounds, they claimed there was no such incident,

this is when my wife and myself decided we were not being told the truth, the last incident at that school was when B tried

to cross the main road outside the school, and a teacher accidentally injured herself trying to stop a car running her

down, we decided she wouldn't go back until B's safety was guaranteed at her time at school, the school never replied to

the two identical letters I took them in person, also communication broke down with the school, and we felt we couldn't

trust them any more in regards to honest behavioural feedback.

 

My wife and myself decided to take a gamble, this was the last resort, to change schools, we didn't know what we would do

if this didn't work, as we were so upset, that she had gone almost 4 years with no real support from the school she was at,

they couldn't control her, her self esteem had dropped to an all time low...she was saying that she wanted to kill herself

and the violence with her siblings, had got to an extreme level.

 

We did change schools finally, as there was no talk of a SEN statement, even though my wife and myself were trying to

convince them all that time at the school.

 

We decided to change the school of B's siblings too, as it meant logistically it was an obvious choice, I will just mention

that, C has a Full SEN statement, and A was supposedly displaying "Autistic tendencies" at the old school.

 

The new school they all attend has been great, admittedly there were some misunderstandings with the provisions on C's

statement when he first started but, they really made an effort to make up for it, they have done so well with C, and he

seems to be enjoying school, A was originally on school action plus, then the new school decided that his progress was so

good at the new school, he is off that now, and does very well, also having a lot more friends, and his attitude, and mood

has raised also, he's quite upbeat when he comes home from school now.

 

But B is still having problems, the school B is at now fully supported her assessment for statement, and she has been given

18 + 5 hours, which the school say is nowhere near enough, but it's a start...she has this reviewed I have been told

today, next week with the EP.

 

Now we get to the really upsetting bit, which I don't know where to turn, I have not been given the official diagnosis yet,

but was told by my GP that a specialist thinks I have Asbergers, I won;t go into too much detail about this, but I’m just

waiting for an official diagnosis at the moment, and find all this fighting really hard...we use to use smacking as a last

resort punishment, up until we realised it did nothing to help, we stopped smacking some time ago, although a lot of people

disagree with this, we used to find it much easier to quickly stop B's behaviour, we feel it did nothing to help, and

hence the reason we don't know, we all know there is a line you never cross, with physical punishment, and have been

brought up well enough to know what that is.

 

We have been seeing CAMHS with B for sometime now, about a year I think...we wanted a diagnosis of her behavioural

disorder, if thats what it is, so we could understand it more, and do the right thing by B...since we have been seeing CAMHS

all they have done is play into B's hands by, what we think is spoon-feeding her questions and possible answers, they have

told us today, that we once had a social worker round, to asses our household, this was to do with B having an off day at

the old school and telling them she was being hit, I presume it was the smacking.

 

My wife was the usual one they wanted to see, but I’m starting to build up a better picture in regards to what is starting

to manifest itself, they were questioning my wife, about the times we used to smack, she got quite upset and emotional when

they asked her about it, asking if I was violent with her, and how often I used to smack, ect.

 

We think we are going to lose my daughter, she likes to play the "Mummy and Daddy hits me" game, she smirked as she said

that in the last session my wife went to, and feel she thinks there is some great place where she will be able to do as she

pleases, but I’m scared she's on the way to getting taken from us.

 

I fully support the school she is at now, they have so much patience, and empathy for her problems, I have been known to go

to the school to help with her behaviour on numerous occasions, and even participated in lessons with her when called, as

she didn't want to join in with her TA.

 

I feel I have lost the battle, all the teachers are very supportive, and have done nothing but help so far, and we are very

grateful they have given so much time and dedication to her, and to C which they have helped a great deal.

 

The final straw was to call CAMHS today, and say, that we don't need another appointment,, as it's too upsetting for us

all, the school have asked us not to bring B back to school after the sessions, as she's too disruptive, and violent

afterwards, and they don't want her to be excluded.

 

I am starting to resent the fact B says all these things to CAMHS during these sessions, and why can't they see we only want

help for her, why can't they see between the lines, B finds it highly amusing, as she does when she accused her TA of

assaulting her the other day.

 

What can I do? it's been 5 years so far since problems began to show, myself and my wife feel we have no fight left, and

quite often feel if we really didn't care, or brought her behaviour to anybodies attention, that this would have been dealt

with years ago, B can barely read, or write, and we also fear for her siblings safety too, she has to be constantly

supervised, every minute she is at school or at home with us, she has been found trying to strangle my son C, he is always

the soft target because of his ASD.

 

Please give me some advice, we are startig to feel she is slipping away from us

 

thank you

Woof, where to start?

 

Ok, first the simplest thing, just to help keeping things clear later in the conversation: It's called AsPerger's Syndrome, and if you do some research on it, it may help you understanding better what is happening with you personally.

 

Regarding your daughter: Forget about the febrile convulsion for a moment, in all honesty, it is highly unlikely to be linked , in the same way that MMR vaccine has nothing to do with causing autism, it just happens that there are milestones in social development where autism will become obvious as the children grow up. For Asperger's for example, a "typical" window of time is between 5 & 7, which is when they enter proper education settings and where their different behaviours and lack of coping become more and more obvious to the point where it can't be dismissed as just being slow to catch up.

 

To my mind, it is much more likely that her behaviour pattern may well originate from the same place as you and your other child, and that is the autistic spectrum. Her behaviours certainly seem to fall in that pattern.

 

The problem of course is that it's difficult, even for specialists, to see the difference between an ASD and an EBD, especially at the age of your daughter.

 

I just want to say one thing, since that was the title of your thread: NO, getting CAMHS involved was not a huge mistake. They're the only one who will be able to attain the correct diagnosis even if it takes time. Without them, you have little chance to get anywhere and what's worse, you'll be more at risk of having social services swooping in (because THEY will definitely know jack about autism!).

 

The best way at this point to help her is to learn. Read and research autism until you can quote it in your sleep. Go back onto CAMHS and insist your daughter gets evaluated for an ASD. using your new-found knowledge, point out to them the behaviours of your daughter which are consistent with autism. Be honest with them, do say that yes, you do believe in corporal punishment within reason, and that yes, you used it when she was younger, and that you stopped when it was obvious it made no difference to her behaviours, as it was meant as a teaching tool, not a punishment one.

 

Despite the warnings and horror stories given, the fact is that if CAMHS believed your daughter was being systematically abused, SS would have already taken her away. They are carrying out an assessment to determine a diagnosis, and if they know that you have anoither child on the spectrum and make them aware that you too are about to get diagnosed with AS, that will help them work out where the issue is with your child, as a genetic common background is the surest factor, in other words, where you have autism in a family, odds are that you'll see it more than once.

 

Onto the nature of autism:

 

If your daughter is on the spectrum, then she can't be manipulating the facts to get you into trouble. That is completely inconsistent with the very definition of autism (read about "theory of mind") and the social understanding required to manipulate people. What she could be doing is smiling because she is distressed. The logic behind this is this: people smile when good things happen. something bad is happening, so if I smile, it will go away, it will appease the angry people. This, as we know, never ever works and in fact tends to make people even more angry and in turn the child grins even more as the need for appeasement increases, etc... In any case, inappropriate facial expressions is very much par for the course with ASD kids, so I wouldn't take that at, as it were, face value.

 

Once you have read up ( I recommend Tony Attwood's Asperger's Guide to parents and professionals AND Clare Sainsbury's Martian in the Playground as essential foundation laying) and start understanding what makes her behave th way she does, then you can start looking at her environment from her point of view and start changing things which may be distressing her.

 

Let's look at your other ASD child: does he have any of the tics/behaviours often seen in ASD? Does he hum, spin, makes odd noises, repetitive movements, anything that could be upsetting her to the point where she has t make it stop no matter what?

What about your home? Is it full of smells, noises, patterns that could be adding to her discomfort? If she has sensory issues, she may be unable to block out all the assaults on her senses from all directions and that is a surefire way to get someone to lose their temper.

 

Example I use to explain sensory overload to people: imagine you're in a night club. it's 3 am. It's noisy, the bass is vibrating through your soles, people are smoking everywhere and crowding you and jostling you, you've had too much to drink and feel unstable, the clinking of glasses, the incessant noise of people talking shouting singing, the lights strobing, the smells of booze, stale sweat, beery breaths, perfumes and deodorants, you've been here for hours and you have a thumping headache, and your feet hurt.

Bad, huh? Now imagine all that and you CANNOT leave. EVER. How long would YOU last before you started lashing out at everything and everyone just to try and block out some of it, just to try to make some of it stop?

 

Now let me ask you: how do you expect your 8 year old daughter to cope with it? The answer is: she can't. So she kicks off, or runs away. And considering how much she's puttign up with, all the time, don't get upset about the times where she can't take it any more, admire how well she is doing all the times where she DOES manage to keep it together.

 

Remove as much of the sensory aggression as you can around her. She'll need a neutral, calm environment. If there are lots of colours and sounds in her room, or big patterns etc that needs to go. Paint the room a quiet beige (non smell paint, mind you!) and keep it as empty of stimuli as you can.

 

DO introduce visual aids (plenty you can download off the Internet). It may be that she is being given too many instructions at once, some of whcih may seem contradictory to one another (for her). break every task and instruction in small manageable chunks. It's no good saying: go to bed. To us, that implies; "go upstairs, get undressed, get your PJs on, brush your teeth , go for a wee, get into bed, switch light off. To her, it means: Get into your bed. If noise sensitivity is an issue, consider buying noise cancelling earphones. Basically, you are going to have to try and work out what helps her cope. Potentially, anything to do with the senses could be aggressing her, so you have to find a way to block the worst of it.

 

The main thing about autism is the inability to adapt, the rigidity of thinking and behaviours. If they can't adapt to us, then we have to adapt to them. It's a long hard slog, it takes years for a glimpse of improvement, and it is incredibly disheartenign for us parents. worse, it's going to lead to resentment from the other siblings, who are going to think you are "letting her get away with everything". But the reality is that your traditional methods aren't working, can't work, because they're all based on a social system your child can't begin to comprehend. so it's up to you to try and understand her, and then help her.

 

Find out from CAMHS if they have any course to help parents of ASD kids. Find out of there is a support group in your area. Parents with knowledge of ASDs are the best possible source of knowledge and best of all, they won't look at you and judge you when you admit you have no idea what to do, or start crying, and they won't call you a bad parent either, because they've all been there, done that and got a whole collection of t-shirts to go with it.

 

thanks to the Internet, there are also lots of support groups online, Facebook, Yahoo health groups etc... Oh, and if you contact NAS, they shoudl be able to point you in the right direction of local NAS branch etc...

 

Oh, and keep at your LA about her statement, it is obviously completely inadequate. I think you need to start thinking about SEN school, it's obvious that mainstream isn't going to work out for her, so start making that clear to the LA and start researching the availability of ASD schools suitable for your little girl. Tell CAHMS about this too, and tell them you need a diagnosis to help with that. Get them involved, ask them for their opinion, that's what they're for, work with them not against them and you may find them a lot easier to deal with.

 

One more thing, and that's about you: If you are indeed AS, then you will have, built-in, a tendency to see everything in black and white, with no room for shades of grey. You could be your own worst enemy because of that, so always try to make sure you know what people mean, ask them if you're not sure that you got it right, and don't think that because they're not saying it outright yet, CAMHS haven't spotted the ASD in your child, they tend to be pretty good at spotting them these days.

 

Well, that's about it from me. Don't get discouraged, you did the right thing by coming on here ans asking for help. To sum up: Keep CAMHS involved. Read up and learn about ASDs. Start implementing what you can, even if it's little things to start with. Learn coping strategies for you and your partner so at least one of you can go out for fresh air now and then. YOU as a parent will always be the one who knows best how to help your child, once you embrace her differences instead of working against them. some of the results you'll see quickly, some will take years and still will have setbacks. But you can do it. We all can. We have to. And the rewards are there: every hour, then every day, then every week that goes without a meltdown. A situation which "normally" would have had the child exploding that they actually cope with. don't get hanged up on the failures and cherish every little progress that we would take for granted in the other kids.

 

For me, the greatest reward was actually being nearly told off by a friend who met my son for the 1st time in the flesh. She said she felt I was being unfair to him, as I was making him to be a lot more difficult to deal with than he really was and that he was lovely. Tell you the truth, I was a bit upset by that comment to start with (you know, the whole "ah, easy for you to say that, you should see him in meltdown...) but then realised (with gritted teeth, lol) that she had just paid me the greatest compliment anyone could: Our hard work had paid off, to outsiders, our son looked and behaved perfectly normal. From where I was sitting 7 years ago, I would not have believed it possible, ever.

[Agrajag]

Just like to say Bookworm's reply is wonderful, and I recommend Evilstoat to read it thouroughly. While not in any way having as many difficulties as Evilstoat, I am in a vaguly simlar position (ASD child, probably Asperger's myself), and the 'black and white' aspect I can totally sympathise with.

People can say things, and I take them to mean an absloute position when in fact they are just raising one of many possibilities. Things are calmer now, and my son is in a much better school.

 

Good luck Evilstoat. And thanks Bookworm for taking the time to right such an expansive and well expressed reply

[evilstoat]

Thanks for the comments, I have read Bookworms post and relate to alot of what was said, I went to the GP today to explain I myself, am having alot of difficulty dealing with where we are right now with B, and the breakdown in communications with CAMHS.

 

My GP is going to see if he could speed up the appointment with the Aspergers specialist, to see if I could get a diagnosis sooner, and I also explained that my views, and interpretation seems to get in the way, and hinder the progress with CAMHS as i think it does.

 

I seem to take things quite personally, and have difficulty getting my point across, I believe myself to be quite capable when speaking, but find it difficult to talk to strangers, it puts me very much so out of my comfort zone, I am aware everybody has a comfort zone, and has to put themselves out of it sometimes, but i find it particulary hard to do so.

 

But I think we will try again with CAMHS, I did mention to my GP a bit of support foe me maybe talking to CAMHS would help, like maybe an advocate, but he says it's important for me to get a diagnosis and wants to help.

 

I have experience with C over the last 4 years or so with his difficulties, and do understand the statement process, quite well, but seem to have trouble distinguishing where CAMHS are going with the recent sessions, I have read alot about Autism, but not specifically about Aspergers, or ADHD ect.

 

I will definitely take a look at the books Bookworm suggested, I am very grateful for the help/advice given so far, but I do think my own problems seem to be getting in the way of things.

[tiglet]

Bookie's post is, as always, brilliant, but I do have a couple of points to add, if I may.

 

1. I agree that the statement is clearly inadequate and I would suggest that you ask for a re-assessment of your child. If you need help drafting that letter (it can come from the child's parents and not just the school), then please let me know.It may be that your child requires a specialist placement and that mainstream will be unable to meet her needs.

 

2. I obviously do not know which are of the country you are in, but there is a HUGE problem with CAMHS in certain areas of the country, especially in terms of diagnosis. I would suggest you contact NAS to discuss this with them in order to get a better picture of how the service is performing in your area and perhaps some suggestions of how things can be speeded along.

 

3. Your (potential) Asperger's Syndrome does not mean that you should be in any way disadvantaged within the SEN and medical systems. In fact, Disability Discrimination laws and the SEN Code of Practice make it explicit that this should not be so. If you do not feel comfortable or able to express to the person you are dealing with at CAMHS or the LEA that you potentially have a disability yourself, I would recommend writing a letter explaining your difficulties and explaining how they can alter things to accommodate them.

 

If there is anything else I can help with from a SEN legal side of things, don't hesitate to shout.

[Bookworm]

Not only you may, but you must and you did. And as ever, brilliant.

[evilstoat]

Not only you may, but you must and you did. And as ever, brilliant.

 

Just an update, we did continue to be cooperative with CAMHS I think they suspect some kind of abuse because social services are visiting us today, if they try to blame her condition, which has been gone undiagnosed for near on 6 years on my wife or myself, I will have lost all faith in the health services and professionals...I have nothing to be afraid of I know, neither has my wife...but for some reason I can't but help feeling very intimidated by the visit, and am concerned that any lack of eye contact, or fidgeting when I feel upset, or distressed may look like an guilty body language...I can understand that if there was any cause for concern that they would need to visit us.

 

Some good news though she has got into a special school which we are so pleased with...will post more soon

 

Thank you so much for the replies (0:

[evilstoat]

Well Camhs was a mistake, they told lies, made stuff up even, SS CP came out, did core assessment, report was sent to us almost a month late from completion, lots of lies, and I mean big fat lies with no evidence to back anything up.

 

They even be suggestive implying that my wife is a baby machine, and basically label the kids by bullying health professionals to diagnose them with a disorder that they dint have...also saying they think my wife is pregnant with our fifth child...all of this is absolute rubbish, my wife has had implants in her arm for over two years...we have no intention of having any more children.

 

How can SS be allowed to lie as they have...being in the position they are in...I am currently seeking legal advice over defamation of character, I may even see if I am able to initiate proceedings regarding human rights laws too.

 

The only humorous part about it all is that, it said in the report how suspicious u was of their involvement, and they would have to work with my wife and myself to fix that...yeah right they can shove it!!!!!

 

Thanks for the great advice though!!

[Nystagmite]

They even be suggestive implying that my wife is a baby machine, and basically label the kids by bullying health professionals to diagnose them with a disorder that they dint have...

 

Disgusting. I read your posts as "My child clearly has something wrong (because of the behaviour) and I / we want to know why".

 

My parents had that too - 5 years after, my brother was diagnosed with ASD.

[evilstoat]

Disgusting. I read your posts as "My child clearly has something wrong (because of the behaviour) and I / we want to know why".

 

My parents had that too - 5 years after, my brother was diagnosed with ASD.

 

Depending where you want things to end up I would weigh up if it's even worth involving anybody but the school , and that's if you feel the school would support what you suspect, when we asked for "help" lol...local SS felt they couldn't do anything to support us, so Camhs decided to go outside our town to SS as I think they mat have had the same response if they went to our local SS.

 

They have even said about the age gap between Mu wife and myself, which is 9 years incidentally, lots of irrelevant information to make a loving family look like perverts or villains.

 

They explained so many of my manorisms in the report to make it seem like I was trying to hide something, but the simple fact is, I don't want them poking their nose into my families life, in fact most of what they described us classic aspergers traits, since I found out I may have aspergers I have been researching it, to understand myself a bit more.

 

I feel we have been failed not only as a family that needed some support, but as a citizen of this country...when will people realise sometimes things are just black and White...why try to fabricate shades of grey, me & my wife feel so let down.

[evilstoat]

just an update our child was discharged from CAMHS without diagnosis or explanation and still has no diagnosis she still continues to experience problems

 

social services was happy with our parenting in the end and signed us off their books all I can say us that kids with special needs get a raw deal and the parents get fingers pointed at them for all the effort and unenecesary fighting they have to do...good luck any if you that need statements or diagnosis for your child...you'll need it with this farce of a system

[scottsharon]

Dear evilstoat - I have read your posts on this and have to say I am amazed at the way your daughter - and therefore your entire family - has been let down by the system (camhs) to be particular. People on the autistic spectrum often have inter- related (even if subtle or hard to distinguish) mental health needs so this sounds like a real dereliction of duty, although as autism itself is a physiological condition of the mind (i.e. the way the brain is wired) rather than a disorder/or illness they might be using that to justify their decision to discharge her (even without having provided you with a diagnosis).

I worked with young adults with autism and other challenges who had not received the understanding and support that they should have for a variety of reasons and were heading towards secure unit placements as their community placements had invariably broken down.In most cases after a lot of hard work and trust building on both sides we ended up working with much happier and fulfilled people who were empowered to make choices and decisions affecting their lives which were previously not possible - this was mainly achieved by a framework of support that suited the needs of each person and a VERY clear set of boundaries on each side. The main reason for me mentioning this is that the love and support you and your wife give her will be a thousand times more valuable to her stability and peace of mind than anything a psychiatrist could do (unless you feel now or in the future that another issue developes/ or manage to identify anything that would suggest an existing one). Routine and boundaries are highly important to people with autism as Im sure you are aware and sometimes as hard as it is especially as a parent you can use the things your daughter looks forward to to reinforce the things that are unnaceptable depending on the problems her behaviours are presenting at the time - i.e. If I dont hit 'James' I can go to the shop on Wednesday/ if Im nice to 'Charlie' I can have pizza on Saturday etc, this can soon be adapted to your childs speech patterns i.e. Im going to the shop Wednesday - yes you are if.. 'if I dont hit James. The talk of the shop or whatever should always be a positive thing - and praise/rewrad and positive affirmation is a much more helpful tool to all concerned rather than punitive measures as you have already found. Now for the hard bit - if your daughter doesnt hold up her end of the bargain then you must stick to your guns and reinforce why she has lost the treat she was looking forward to. This will undoubtedly cause a meltdown (and make you feel awful) but she should soon start associating nice things with nice behaviour and once you manage to get her through the trauma of her routine being upset you can immediately begin to establish the next happy thing that is going to happen or even say although you arent going to the shop on Wednesday because you hit James, because you helped Charlie with his colouring would you like to (insert something appropriate - a biscuit/ go and see nanny/ go to the park/do a puzzle etc etc). If I were you I would be tempted to lodge a complaint with your Primary Care Trust. And also recommend you get as much support as you can from the contacts other people have posted above, and most of all you are your daughters world and although she doesnt express her love and affection in ways that society in general understand, Its you who worry about your personal inadequecies/anxieties etc but all your daughter sees is her DADDY - who she loves dearly! Please give yourself a break and a pat on the back.

All the best to you and your wife - and please dont let your bad experience with soc svs put you off asking for help from other organisatons - Best regards Scott