im new (and in a pickle)

[onlycrazygal]

hi all,

im a single disabled mum 36, i have 2 boys i love ta pieces, 18 and 10......im in a stupid situation with the ss at the moment my son has been refusing school for 4 years and it has gotten progressively worse.

i didnt know what the hell to do , ive had parenting classes etc, ive bawled, screamed, cried, you name it........

a year ago i decided enough was enough and thought if i get anywhere with my son i would have to start understanding where he was coming from.....

anyway, the thing was that he raged, he had many fears, anxieties, made loud horrendous noises around the house, at one point i thought he had hearing problems etc

one night whilst we were lay in bed watching tv he told me about all the awful problems he had at school, i was so proud of him for sharing with me, as he finds it incredibly hard. based on what he told me i scoured the internet, wasnt sure what for exactly but after a lot of research i knew my son would have to see someone. by this time he had isolated himself and i was worried......to cut a long story short he went to CAMHS the doc told me that there was nothing wrong with my son and that he must return to school immediately, i was in shock......the fact was i couldnt get him into school , it had gone beyond the realms of reasoning with him......he would just rage an throw things......

anyway just when i felt the world was against me the ss got involved, they did a core assessment , then called a case conference. i confronted the original doctor about his lies, i quoted the education act, protocols, sections of the law, codes of practice, you name it......unfortunately though i showed these professionals up to be the uneducated idiots they were, it fell on deaf ears.....

they put my son on the child protection register, 1. physical abuse, (as he has a weight problem) 2. emotional abuse (as i de-registered him from mainstream school as he had began having panic attacks)

i was devastated beyond words......

there plan was to force him back into school and have me see a psychiatrist as i was accused of fabricating my sons problems......

in an effort to find the truth, i borrowed money and had a specialist from guilford come to see my son........unofficially until the report is through the post the doc said, he has , aspergers, adhd, ocd, tourettes and sensory integration dysfunction

this speaks for itself doesnt it......we live in limbo until the docs report comes through, in the meantime the s worker wants me to sign my son over to voluntary care (like hell)

thanks for your time and reading my intro,

bless,

paula x

 

+

[Malika]

Hi Paula and welcome to the forum. <'> <'> <'>

 

I have just finish to read your post and feeling so sorry for you.

 

When is the report coming through? do you know? do not sign anything before this, when have you seen the private doctor who made the DX?

 

Is that Dr going to send the report directly to the SS ?

 

Keep us posted and let us know what is happening try not to worry too much as when the repport comes through things will probably change for the better.

 

Take care.

 

Malika.

[Richt]

Paula

 

You sound like a bright person, who can pull up lots of resources to help your son, the rough comes with the smooth - remember the wonderful people in SSD are probably more focussed on their pensions. They don't know enough about your family to make judgements yet.

 

Until a reasonable assessment can be made of your son's behaviour and the family circumstance (I'm presuming it's the little one who is the "problem"!)

 

Refusing school from the age of 6 isn't "normal" - but there are lots of explanations for his behaviour, at that age, you are his world, but he is finding out there is a bigger world, he's influenced by his big brother, feels protective to you.

 

I can appreciate your need to understand why he is who he is,

 

the first step on the road is to accept who he is (Which I think you have)

 

The next step is to get the best advice you can

 

Then you make sure the pension people do some work. It doesn't matter if he is on the register, so long as you know he's OK

 

Are you supported by friends and family? So THEY don't take easy options to manage your son?

 

At the end of the day, maybe you should see someone, just to share the burden and allow you to think it through without judgement.

 

I think that everyone knows their own answers, the only problem is owning up to them, sometimes it helps to talk.

 

Dunno if this helps

 

R

[Elanor]

Hi Paula

 

I'm so glad you've joined us - I'm sure you'll find a lot of help and support here.

 

I have to say yours sounds like one of the worst cases of mismanagement I've heard of - but the sort of thing you describe isn't a surprise. Lots of people here have had some (but not all!) of your experiences. Keep fighting, you sound amazing - and don't let them take your son, they clearly don't understand him at all.

 

Elanor

[mum22boys]

Hi Paula,

 

Welcome <'>

 

What a fight you have had, and what a fighter you are. I hope you can find the strength to continue and get what your son rightfully deserves. You sound like a excellent mum, your son is no doubt very lucky to have you.

 

mum22boys

[phasmid]

Hi Paula,

 

Welcome to the forum, you have come to the right place for help. Many members have struggled to get the correct dx for their child and taken some years to do it as well. I can only suggest you contact the specialist who has assessed your son and stress to him the urgency of the situation and ask them to ge that letter to you as soon as possible. Please do not let the SS persuade you to sign anything until they have seen that letter. You can use it to seek a second opinion if needs be.

[sue45]

Hi Paula,

 

Welcome to the forum. It sounds as though you're having an absolute nightmare. As Phasmid and others have said, dont sign anything until you get your report through and then take it from there.

 

Keep posting, you'll get loads of support here and some very good advice from the likes of Phasmid etc, who seem to know the system inside out!

 

I really wish you luck, and make sure the specialist knows how urgently you require your son's report.

 

<'> <'> <'>

 

Take care

 

sue

 

xx

[cmuir]

Hi there

 

It amazes me that these so-called specialists don't listen to mothers. We've fed our children, wiped their bottoms and basically know everything there is to know about them ? that includes knowing when something isn't right. Stick to your guns. If your heart and head tell you there's something not right, gather as much evidence as you can. My son is 4 and I'm certain he has Aspergers. I've kept a diary over the past 6 months detailing everything that's out of the ordinary (my son told me he was going to run in front of a car and actually tried to do it, he's tried to smash windows, headbangs walls, hits me and his teachers, the list goes on!). I photocopied every page in the diary and sent covering letters along with the copies to every specialist involved. I found that it's very easy to forget what happens on a daily basis because I obviously live with my son I put up/see all his traits. It took me 2.5 years to get anyone to listen to me along with several nasty letters. I phoned them up 10 days later to ask if they'd read it (not all of it, I highlighted important bits). It was really only then that they actually did take notice (even just a bullet-pointed list eg 'took R to see a Winnie the Pooh show at the theatre and he just stood there for the whole hour without moving a muscle, didn't join in, collected fake snow into neat little piles'). Keep school reports of when he did attend. People can't argue with that! Sounds like you're doing the very best you can. I know that I run of steam sometimes, but there's nothing else for it but to battle on. There's a reason why your son isn't attending school/socialising etc and that will come to light. You will get there in the end!

 

Best of luck.

 

Caroline.

[kinky j]

dear paula,

 

i really feel for you and what you're going through at the moment, having recently had dealings with ss myself over my son(nearly3,dx asd) and his friend(same age, undx adhd) fighting and the bite marks he left on my son. they took over 2 weeks to investigate during which my son had to stay with my sister and i was only allowed supervised access. DON'T sign anything, you know what's best for your child so keep fighting! these people don't know their a**e from their elbow when it comes to autistic spectrum disorders and don't realise the harm they cause our children when they intervene so disruptively!!

 

keep your spirits up and don't let them grind you down.

 

kinky j

<'> <'> <'> <'>

[onlycrazygal]

i really must thank you guys for being so supportive, im very touched, <'>

after the case conference they had a professionals meeting (which i should have been invited to, but wasnt) and they put together a cp plan, this entailed , my son having a full medical, we went for the medical and the doc has said that my son needs to go to the hospital for bloods taken to rule out diabetes and thyroid problems, at the time i tried to tell them that i would have problems getting him there, but this was dissmissed. i told the social worker the same thing , she said she would come round and have a chat, anyway since then shes been round for a few chats , with no success......

then she says , im not happy, he shouldnt just be lay there , hes 10yrs old there is no motivation, im going to ring CAMHS and get them to visit as an emergency appointment. she returned 6 days later and told me she had spoken to the camhs doc at length about connah and that she feels theres a definate power struggle between myself and my son.....says i am not being authoritive enough with him, therefore she feels he must voluntarily go into care for observation.....(back door approach when ss feel they cant get a care order through court)

i told her they can observe him all they like within my home.

then she insists il get contact at weekends ........think that was the point were i flipped out!!!! hes my son, how dare they.....

they have no idea what its like to push my son , he rages like a fully grown man. if i back down or simply leave the room its to ensure the safty of everyone and to save my furniture NOT because im a soft touch.....

at the mo , i feel like im going mad, my two boys have had set rules within our house , even just simple stuff like turning lights out, using a bin, turning the fire off when they leave a room etc. not putting clothes etc on the floor as it causes me pain to keep picking them up, closing drawers when theyve been in them. closing the fridge door etc.......i could go on, on the surface this seems like laziness, however my youngest son was given a five digit number to remember for one minute by the specialist. when asked to repeat it back he remembered two of the numbers, he forgets in a split second. my eldest is the same, how he got through school i will never know. im constantly exhausted and dont have any family or friends to support me you see so i have to grit my teeth and carry on.....its a ###### nightmare and the very ppl that are ment to help are making matters worse if that was at all possible......

ooops.....im sorry but my disability gives me a lot of pain and fatigue and yes i do get extremely frustrated sometimes......ive been totally isolated now for 6 years, and these ss , education, and camhs are crucifying us, and for what???? for the 5,000 they get in there back pocket when they turn a family in need into a child protection issue no doubt.....

oooomps again ,

ok sorry im going lol

hugs all an thanks again,

paula x

[jen]

You are working with the SS. You have allowed them in your house to observe and visit. Do not sign your son over.

 

Have you been to your GP to ask for a second opinion. You are entitled to a second opinion so go for it. Ask the one who carried out the private one if he knows one who works for the NHS and get your son referred to him. Two reports in your favour are better than one.

 

Mothers know their children best

Jen

[phasmid]

Yours is an unusual, but I am sure not unique situation. First part of the equation is your needs due to your own disability issues. Has a review of your needs ever been suggested or carried out? You should be recieving support here not condemnation. Second part is your needs as a career of two children with disability issues, these too should have been assessed and support put into place. Third part is your your sons needs as they appear to be carers for you as much as you are for them by the sound of it - they also have needs that need to be addressed because of this.

 

Quite frankly your SS dept have let you and your children down big time. They should be offering to assist you and your children with ways to help you all not punish you. At this point in time I would suggest it might be beneficial to contact your MP (regardless of your or their political stance) and ask them to help you. This normally brings about some action. Also consider whether or not it would benefit you to make your situation public. What you must not do is allow the SS to brow-beat you into doing anything against your will.

 

I would think that in all honesty this is going to be a pretty rough ride for you so be prepared for a fight.

[Suze]

what you are going through is awful, keep strong and use this forum,the advice found here is brill,it,s helped me loads of times .

[onlycrazygal]

thanks guys, just to clarify things and answer a few questions.......1. i approached my local mp with my problems regarding my son etc , he sympathised and passed the buck to an executive of bolton council, within a cpl of weeks i had a letter back from the mp stating that my letter had been passed to the LEA, and the ss and enclosed was the response that the mp recieved , that was packed full of lies and innaccuracies.....

 

2. the educatin social worker at the time who was a right ***** with my son, said that she had applied to the ss disability team, she said she told them of my situation but they had refused to work with me or assess in any way as i have fibromyalgia syndrome, chronic pain/ fatigue condition , and they said they dont go anywhewre near ppl with fms as they cannot tell from one day to the next how bad a person really is, and how much pain they are really in........she promptly followed this with, i could refer you to our mental health team, they may be able to support you.....and in desperation i said yes ok....

 

3. camhs doctor, stated, that my son couldnt possibly have tourettes as the tics i described were chronic tics and if he indeed had these tics everyone would know about it........(this was a lie as it does not matter what kind of tic a tourettes child has they CAN repress to a point. and usually go to the touilets within school etc to release them....the downside to repression however is that it takes up all there mental energy, leaving them unable to focus on there work.

4. camhs doctor stated that my son couldnt possibly have aspergers as he recognised facial expressions on cards, my view at the time was that of course he knew expressions he was 10yrs old, couldnt this be a learned behaviour.......

5. this camhs doctor has now stated that in light of me telling them that my son was asthmatic, and him not actually witnessing my son needing his inhalers on the day unit, he wants / suggested to ss that every illness connah has ever had from birth should be scrutinised.....grrrrrrrr

[pingu]

Hi onecrazygal and welcome, I have just read all the posts in this topic out to my hubby (who's lounging on the sofa) as i was gobsmacked to be honest. How dare these people treat you and your son in this way? Its ridiculous to think that every illness that your boy has had is your fault, I once saw "Munchausen by proxy?" wrote on my eldest's hospital record. He had suspected meningitis and had just returned from a lumber punture, the doctor waled in and put his notes on the table whilst he saw to the drip, i glanced at the notes whilst he was fiddling around and saw those words, with three ??? after them. I think the whole ward heard as i expplained i had not fabricated any illness, and i would never hurt my own son. His excuse was they have to look at every possibility when a child is ill... I have never forgiven that person for judging me and as a result do not trust doctors, Yet i have had to trust them through the diagnosis of all three of my kids and in some respects they are still giving me grief, as they dont believe half of what we say.. The youngest is the only one who is consistant in his behaviour, so his school acept he has problems, howerever the other two have problems that they have learnt to control and as a result they get ignored and branded lazy.

 

Sorry The professionals that treat people in this way really get up my nose. You stand by whats right, if i were you i would be speaking to a solicitor about the situation, just in case they decide to 'take further steps' with the 'voluntary care' procedure !!!!!!!

 

shaz

[Lucas]

After reading your opening post I kept an open mind and did allow room for the possibility that yours is just one side of a story, but the continuing posts you've made sound all to familiar to me that there's no doubt any more.

 

The camhs doctor should be struck off: the only evidence that Autistics cannot read facial expressions(unless diagnosed with a seperate condition called Propagnosia, which can affect anyone) is a deeply flawed study which concluded that Autistics see faces as objects. This study also used pictures of faces instead of real faces which led to false positives: Autistic people have what is called Enhanced Perceptual Functioning which gives us our famous attention to detail- a picture of a face is an object, therefore our brains would never percieve it as a real face but a depiction of one. Our strength to see through such optical illusions is often contrued into a supposed flaw of some kind. I would like to see that doctor point out which criteria in a proper diagnostic manual excludes any Autistic diagnosis on the bases of facial recognition.

 

The facts are on your side, you are dealing with extremely stupid, unscrupulous, dishonest and abusive people. If it the worst should happen, seek legal aid for a court action and simply argue on the facts. They may argue on what they say they have seen(ancedotal evidence) but you can simply point out that what they have written down on paper(I assume you are keeping copies of everything) contradicts the the facts which can be found elsewhere(as I said, that doctor hasn't a clue about either Tourettes or Autism, you can find information from charities related to them that totally contradict the ignorant doc).

Edited March 20, 2006 by Lucas

[onlycrazygal]

exactly ....lucas spot on, pingu big hugs to ya hun, your right it isnt nice not to be believed ........all this is so farcical isnt it......

im gobsmacked , truely gobsmacked , ive been searching forums for soooo long i think i just missed this one unfortunately , you guys are a godsend really!!!!

im feeling quite emotional please forgive me

ive donr reasearch till my fingers were numb with tapping on these keys, an now i do truely feel im amongst people that really do care and have been there, i feel quite humbled to be amongst you guys...

thank you

hugs,

paula x

[Malika]

Hi Paula, <'> <'> <'>

 

Please don't give up I doubt those B... ds will dare to take a court action and go in front of a judge with that kind of inaccurate file full of ignorance, face recognition difficulties can be foud in children with As or ASD but is not essential for a DX.

Why don't you try to contact the National autistic society they may be able to help you.

I hope something comes through and that this nightmare will be over.. do not give up your son and tell them that you want support not blame.

The systeme is so unefiscient and all what they give as an answer is to find some way to degrade the parents to protect their little cosy job and their pension without having to question themself or anybody within the system. It makes me so angry keep posting you will find support here <'>

 

Take care.

 

Malika

[asereht]

Hi paula, nothing to add to the good advice you have been given by the others,just to say .Keep fighting for what you believe and don't give in to them. <'>

 

Theresa

[nellie]

Paula,

 

I'm glad you have found the support from the forum so useful, there are some very clued up people here!

 

Just one thing to add, have you asked for a copy of your sons records? You are entitled to see them.

 

Stay strong and focused!!

 

Nellie <'> <'>

[oracle]

Here but for the grace of god go I! Paula your post sounds all to familiar to me. It took me 10 years, two spells on suicide watch, and a diagnosis of an oedipus complex before we finally got them to accept what was hitting them in the face.

 

To cut a VERYYYYYYYYYYYYY Long story short I had concerns about my middle son from him being 3 years old. Even though I had an older child I was seen as David's problem. Even though I was told when he was 3 that he was having a major breakdown it was because I was trying to keep him a baby.

 

Years went by and when David was 10 years old I had another baby. My youngest son Matthew was to prove to be the salvation of David. Aged 11 David had yet another breakdown and after months at a Child and Family Unit when my husband was convinced that I was being suspected of MSBP - and he told them so - David was given a dx of an oedipus complex and he promptly tried to jump three floor out of their window, I did not know what an oedipus complex was at this point - he however did. We were then sent home on 48 hours suicide watch, which actually last two years because I could not leave David alone and we had to hide knives tablets etc. He never returned to school and although I was threatened with court action I stood firm and would not let him return. I asked them to prosecute me so that the truth could come out.

 

It was not until Matthew my youngest began to display some quite classical autistic traits that we were listened to. It was a speech therapist who finally made the connection and after half an hour with someone who 'really' knew what they were doing we were told that David was most probably AS. After a full assessment that was the dx that he was given.

 

The evidence against me was that my ex had a drink problem. Also that I left my ex and found a new partner. However I now believe that it was actually because I had a man in tow that I was not done for MSBP. This of course is wrong but since campaiging I have found that single woman are very easy prey for the system. The problem is that once 'The System' has made it's decision changing it's mind can be very difficult. Be strong - be calm and make sure you have some really big guns on your side.

 

Carole

[DaisyProudfoot]

Gosh Paula your situation sounds horrendous.

 

Fiirst I sympathise with your pain because I have CNS Lupus and SLE so know exactly how you're feeling there - it's tough enough getting through the day without having all this to cope with too. <'> <'> <'> <'>

 

Secondly you are really being let down here by everyone concerned - what is it with these people? I think I too would contact NAS to see how they can help you and to be honest I think I'd be heading for the local paper (being a journalist this is one meaty story!) "My kids are being taken from me because of my disability!" (oh ho ho - I can see the SS on their knees now!!!!!!)

 

Third get back in touch with the professional who did the diagnosis, tell him everything you've told us and reiterate how urgent this situation is.

 

Fourth - can you get legal aid? It may be worth investigating Citizens Advice to find out - if so get a solicitor who specialises in child protection proceedings - you're best off looking for someone who has solicitors on the Law Society's Childrens' Panel as they know all their stuff.

 

Take care

[onlycrazygal]

WOW.....thanks all of you for your words of support, life seems bleak when your alone with this but im glad to say im feeling a bit more positive again.....

to ONE VOICE, you went through hell hun for no good reason, i hear these days that they dont actually come out with the MSBP label its something a little more subtle there accusing me of fabricating his illness .

my eldest has OCD, ANXIETY, i told everyone that OCD and tourettes gos hand in hand and also presented them with an email from my brother who lives in holland stating all of his life he has lived with dyslexia and a tic disorder that he still has now.

 

i took rakes and rakes of evidence from great ormond street and tsa uk about tic suppression, i also had the headmistress state that she had plenty other pupils that had been through her school who had tourettes........ if indeed this was the case then why the hell wasnt she aware of how children supress there tics in a classroom setting and how they must be in a relaxed enviroment to release them ????

 

i sent for my sons school records from the present school and the previous one, the records from the previous school had been forwarded to the present school. i sent the present school a request for both of these, after 10days i demanded them as i had the case conference coming up and believed that within the previous school records it would have vital evidence that connah had isolated himself from others, he developed a tic rather like a snort that he got teased and bullied over. also he had a bad time with one of the teachers there that kept shouting at him over his untidy writing, how it never seemed to improve , he would get moaned at every day for this......anyway rightly or wrongly i was sure they would have record of his writing difficulties........

what i recieved through the post that day was a joke. i recieved 2 pieces of paper one with his attendance on it and the other with his sat results. this was meant to represent 3yrs of schooling. inbetween these papers were what i can only describe as three sheets of computer binary code. i think this may have been put there simply to plump out the shameful records they had sent. i must persue this as the records are vital to prove what i have been saying but the buggas must be hanging onto them, grrrrrrr

i have learned the hard way guys , dont trust anyone......sad but true.

hugs,

paula x

[Richt]

But you can trust some of the people all of the time and none of the people some of the time ( or did I get that wrong????)

[Guest hallyscomet]

Hi Paula,

 

Welcome to the forum. Sounds like you have been through a really tough time, a time where you should be getting support.

 

Be patient, take a deep breath, get all your sons reports and records together and write down all the important things you can remember, keep a folder as all these will help. Including that letter from the doctor.

 

Sending you lots of these <'> <'> <'> finally you are in the right place to help some help and advice and support that you truly deserve.

 

Be gentle with yourself, as everyone has said it can take time but you are more than halfway there to getting the help you need. The frustrations you have had to put up with to date, hopefully will SOON be a thing of the past.

 

Hailey

<'>

[jayjay]

I cant add to the advice you have been given but wanted to send you loads of these <'> <'> <'> <'> because you have been through so much and deserve so much more from the so called professionals.

jayne xx

[florrie]

HI Paula thanks so much for you reply to me on blocking of referal in help and advice secrtion, I really feel for what you are going through all of this actually, in my case we were treated badly after dx not before, and my ex partner accused of abusing me and my son, when he tried to show them that they were breaking the law by either not providing appropriate support or what they were doing which is nothing was harmful.

 

It is just so awful that this is happening to people and I feel so sorry for you

[florrie]

HI Paula thanks so much for you reply to me on blocking of referal in help and advice secrtion, I really feel for what you are going through all of this actually, in my case we were treated badly after dx not before, and my ex partner accused of abusing me and my son, when he tried to show them that they were breaking the law by either not providing appropriate support or what they were doing which is nothing was harmful.

 

It is just so awful that this is happening to people and I feel so sorry for you

[florrie]

actually my words came out wrong what they actually did after dx whas put in an inapporiate education plan which i knew was going to be harmful i can't explain the words how i knew I just did and he did have a breakdown and was bullied and it would have been better to do nothin than that, but he probably would have had a breakdown anyway because he can't cope, I've always understood that and what casues him distress, but I just can't communicate with him because the words come out wrong and he gets very stressd whenever i try to communicate but no one else understands that.

 

Sorry I know this is not exactly on topic , I know that will get what you need eventually if you keep going I did but by god it isstressful, but I still am terrified my son will not survive, I just hope I'm wrong.

[florrie]

I just read your post again because I don't remember what I've read, how dare they say they will take son into care when you are trying to help him that is abuse, they are the ones doing the abuse my point precisely, but i fyou say so they say you are delusional more evidence to take you son into care this is the way it seems to work, and it can genuinely drive you over the edge as it has with me. I'm so sorry for you i don't know what to say but I'm sure others here will be able to help you better

[Steve_colour-se7en]

Welcome to the forum onlycrazygal,

 

 

I cannot offer any more than has been covered some good advice already been given, there are great resources available, be strong you will have great support here to call when needed.

 

 

Steve..

[florrie]

the other thing I don't know if this is an issue but you don't have to send your child to school, I took my son out when he was bullied and had breakdown, had no choice, but ex partner blamed education authority for failing to provide proper educational plan and we never heard a thing, one of my friends who i believe may be undx asd very similar to me in so many ways and have similar obsessive interests in really obscure stuff gifted mathemetician but just is eccentric as hell more than me,has never sent any of her children to school educating at home can be whatever you think education should be she has never had any problems with anyone,it would never occur to her that not sending your children to school would cause a problem, and she has never had one and her eldest are adults now. although i know people get threatend and I know that must be terrifying. i don't know if that helps but it is another perspective.

[microsoft_admin]

welcome to the clan nice to have you with us if you ever need help with your computer pm me and i will get it sorted im a big computer bof