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I have to get it off my chest


Guest James' mum

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Guest James' mum

My husband and myself think my son has ocd. Cahms are reluctant to make a diagnosis as they dont want to label someone of ten. We think it is 'bad thought' ocd, where he is convinced that he has done bad things, usually on purpose, and sometimes of a sexual nature. We dont believe for a minute he has. He is intelligent, kind and has quite high morals. He also has low self esteem and suffers from a massive lack in confidence. Because of these last two issues, he allows other children to do things to him and finds it impossible to stand up for himself. He is currently sporting a broken arm (result of saving a hard-kicked football), and has just gotten over a weepy eye where a so-called threw a crab apple at him. Today he has come back from the park saying another boy has sat on top of him and pretended to put his finger up my sons bottom. My son didnt even tell the boy to get off. He tolerates the behaviour and then comes home and tells. Stuff like this goes on all the time. I am reluctant to tell his dad as he can sometimes go off on one, hence the fact i am lettingoff steam here. I could weep over all this, for him, for me, for our family. We feel very isolated, and we probably wont be getting much help from cahms until january.

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Fight for James. He's too young to fight for himself so you have to be his advocate. Don't take no for an answer.

You need answers why he is the way he is. Get them.

And hug him lots and tell him it will be okay.

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Guest Sally44

Does your son have any other diagnosis?

Is he doing okay in school academically and socially. Does he have friends?

My son started with Anxiety in primary school. He refused school for the whole of primary year 5. He is also diagnosed as being on the autistic spectrum and has alot of "dys" diagnoses ie. dyslexia, dyspraxia, dysgraphia etc.

Mainstream failed for my son. He is cognitively able, but now attends an independent Autistic Spectrum Order school. The Local Authority pays the fees as we proved at an Educational Tribunal that that was the ONLY school that could meet his needs. And even there we have had difficulties with staff understanding and supporting his OCD.

Look at the NHS NICE GUIDANCE for OCD. It is on the wall at our CAHMS service. It states that those with OCD should receive cognitive behavioural therapy.

With a diagnosis of OCD your son maybe able to get a Statement of Special Educational Needs [that process is under change at the moment and in September will be called something different.

An organisation that might help you with problems in school and accessing education and getting support in getting a diagnosis is www.ipsea.org.uk. They give advice on children with special educational needs. And OCD will affect his ability to access education, and therefore is an educational need. All the professional advice is the sooner the child is supported, and given therapy the better the prognosis.

PolarBear is right. You will need to advocate for him. You will need to push CAHMS to diagnose. It is only after a diagnosis that you will access support, and even then you will have to push and fight for it.

You need to learn about how to access NHS services and Educational support and therapy. Everyone will fob you off. The NHS and Local Authorities are trying to save money. I've had to fight, sometimes for years, for every single thing. But by being methodical and tenacious I have always triumphed!!

We just recently managed to get Childrens Clincial Psychology to agree to give a training day to school about OCD, and to provide advice/support to school. Prior to that Clinical Psychology were refusing to accept referrals from CAHMS and his School. So I contacted PALS [Patient Advice and Liaison Service], and they spoke with Clincial Psychology to ask them why they had refused the referral when their own NHS Guidance said he should be accessing CBT.

Why is your son experiencing these things with other kids in the park? Are they rough kids? Are any of them supposed to be his friends? Are there any local clubs or groups he could join instead, such as Scouts - where there are adults supervising and there are structured activities?

Edited by Sally44
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It's not acceptable that CAMHS won't help until January, your son needs help now. Can you go to your doctor and ask her/ him for help in putting pressure on? The sooner you all get help the better.

The bullying your son is going through is another matter and equally unacceptable. Would your son be able to join any of the activities

suggested by Sally? Or some kind of martial arts would be ideal for boosting confidence and self esteem.

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Guest Sisyphus

That's absolutely heart breaking. He sounds like a hell of a good lad. To think of a good lad that age being subjected to that kind of thing makes me sick and angry. Honestly - where does it all come from. No end to it.

Anyway, I would have to agree with the martial arts route too. If I had a boy I'd be encouraging him to do Jiu Jitsu or Brazilian Jiu Jitsu as it specialises in ground fighting, chokes, holds, locks, and getting out of them if they're done to you. Most playground fights end up on the ground in my experience. But I'm sure people will have other recommendations.

It's hard though, I didn't really understand the need for all that at that age and wasn't really interested. If only I could go back and have a word with myself!

You're a good mother for trying to help him like this. It's all you can do really. So much is beyond your control at the end of the day.

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Hi James' mum,



I'm so sorry your son's having to cope with both the bullying and maybe the disorder too and for you as a parent to see him going through this, it must be very difficult for you all as a family, but you're not alone, you're amongst people who know what you're going through.



I'm not sure I understand CAMHS's logic holding off with support until next year either, their workings do seem like a mystery at times, but w/o letting them off the hook I don't think those six months will have an impact on how well things pan out.



It's obviously not going to be easy for you all, but you've still caught it early and he stands a very good chance of overcoming it for good - I'm sure Yolanda, one of OCD-UK's Trustees wont mind me saying this, but her son was also diagnosed at a similar age to yours and after receiving the right help both professionally and at home he's free of the condition and living life to the full and at college.



In fact they both appeared in two videos available here and here describing their experiences with OCD, they're very moving and inspirational and I hope will show that it is possible for children to make incredible progress to the point of being completely free from the disorder.



A lot of how well Josh has done is down to the love, support and guidance he's had at home and although CBT given by a professional is important, it's really the home environment and the support you're already showing that will pay dividends - you might already have had a chance to read it, but the charity's also produced a guide for parents that might be helpful.



We also have another tailored for children but it might be better holding off showing it to your son until a firm diagnosis has been given, see how you feel.



I really do hope things gradually get better and it goes w/o saying if you need any help with accessing treatment I'm sure Ashley, the charity's Chief Exec would be only to happy to help you in terms of advocacy and support if CAMHS don't get their act together.



The important thing is you haven't put your head in the sand and ignored the signs, you're being proactive, that's hugely important.



Hal

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  • 4 weeks later...
Guest worriedmum

HI there,

I have only just read this but am so sorry to read how your son and you are suffering. You have been given such great advice already. As Hal shared... my son was diagnosed at the age of 10 and also suffered lots of very difficult thoughts and fears. Some were quite shocking to hear. However, our GP referred him to CAMHS right away and we were seen a month or so later where he was diagnosed with OCD. I am not necessarily supportive of always labelling children, however I feel it's VERY important for children to be diagnosed if their lives are being adversely affected so they can receive the support and treatment they need. My son could not go on with how he was feeling and didn't want to live anymore, for a 10 year old I realise that was huge and we had to do something. I still remember to this day him standing with his head in his hands saying "mum, you have to help me. I think I am going mad". Thanks to the CBT he received he is back to enjoying life and is able to keep OCD at bay. In fact, he's just got his GCSE results today and has secured a place at 6th form college :)

So please if you feel your son can't wait until January, call them again and again. It is not ok to make children wait if they are suffering, especially if there is help available. It may be that your son does not have OCD but if he is struggling with anxiety, they could still give advice. I am so glad your son has parents who care so much about him and are there to support him. Just as a side... you may already be doing this.. but I wrote everything down... all his fears, thoughts, obsessions so I had it handy to give to the psychiatrist and mental health nurse. As my son's OCD morphed into different areas I found it easier to keep track of things that way.

Do take care and please let us know how you get on. x

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  • 7 months later...
Guest James' mum

It has been a long while since Ive accessed this website as James made huge improvements following his return to school in September. I would just like to thank you all from the bottom of my heart for taking the time to read and comment on my post. We did not get anywhere with Cahms, they could not offer any help until January by which time he was so much better anyway, so they signed us off.

Sadly, a year down the line, we now find ourselves in the midst of his anxiety and obsessive thoughts again. It is his birthday two weeks today and we are wondering if the anticipation of an exciting event triggers his anxiety as he was more anxious before Christmas, but manageably so. Tonight, he told me what he would like for his birthday: a gun, with which to shoot himself.

I am stunned to even see this in writing. Needless to say, we are going straight to the GP following the bank holiday and I do not anticipate a problem getting a referral to Cahms and with the benefit of your good advice from last year feel better armed to take them on and fight for treatment for James.

Once again, thank you x

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I feel so sorry for your sone and you and your husband. For a young lad to say that is really shocking. I can only say to do what you are thinking ie to go and see your GP and see where he can point you.

take care

whitebeam

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Guest worriedmum

I am so sorry to read that your son is struggling again, and to such a degree that he would say a comment like that. It's literally heart breaking, my son would also tell us he did not want to wake up in the mornings... no parent should have to hear that and no child should feel so desperate :(. You are doing the right thing going right back to the GP. It should not be that we have to fight for help for our children but sometimes that's how it is. Insist he gets an emergency referral and don't feel bad about laying it on thick. It's so much better if he can get some help and the tools to beat OCD and deal with anxiety, before it gets worse. Please do let us know how you get on... and remember that he can pull through this tough time and reclaim his life and get back to enjoying it again. In the meantime... please make sure you ALL are getting support from family and friends... it's such an emotionally draining thing to go through for any family.

Take care. x

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