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9 year old with paranoid schizophrenia and autism

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HopeAndFaith86 Wed 21-Aug-13 10:41:23

Mumsnet.

I am parent with of a 9 year old who has Paranoid Schizophrenia as well as Autism, I am going to keep things a short as possible, if there is anything else you’d like to know don’t hesitate to ask me but for now I will just give you some examples of his behaviour

His Schizophrenia (A few examples)

Pacing up and down with his hands behind is back mumbling to himself
Whispering to himself
Conversations with himself (but he is always fully alert, if I call him or speak to him he will answer immediately)
Bizarre thoughts and beliefs, the belief he has at the moment is that the devil is coming for him at night (sent from my fiancé, my daughters Dad who he believes works for the devil – due to this thought my fiancé is living somewhere else) my son is also not sleeping at night.
Voices telling him to harm himself and others, including me (which he is acted on in the past) he has also reported of them telling him that he is stupid and bad (whenever he hears these voices he hits himself in his head with the palm of his hands in order to try and get rid of them) whenever they tell him to harm his sister he will come and tell me straight away, he tells me that he does love her but is scared to go next to her because she has done nothing wrong and she is small.

In terms of medication

He has been on numerous anti-psychotic medications, which have never completely stopped what is going on in his head, he is currently on a medication caused (Quetiapine also known as Seroquel) I was sceptical of giving it to him at first after hearing his Psychiatrist tell me that he doesn’t usually prescribe it to children under the age of 13 whom are suffering from Schizophrenia but it is one of the most effective drugs he prescribed a dose of 25mg with instructions to give it twice a day, once in the morning and once before bed, his morning dose was putting him straight back to sleep and when he did wake he would be drowsy for the whole day, I called and notified the Psychiatrist about the effect it was having on him, and I was told to half the tablet in order to lower his dose to 12.5mg, which he just making him drowsy and dribble, I have to wait other 3 weeks to see the Psychiatrist. again.

CAMHS have offered a lot of support, but I feel as if they think the answer to his Mental Illness is to admit him into hospital, he has been in hospital 4 times this year and each time it has not helped him one bit, they have allocated him a care-coordinator and she is also very helpful.

His Autism (A few examples)

Showering and changing his clothes 4 times a day.
Bed covers have to be changed every day
He eats the same food every single day for breakfast lunch and dinner and none of the foods can be touching one another (Melon Slice for breakfast, two crab sticks sliced into four pieces and 2 and a half green runner beans, for dinner, none of these can be touching one another)
He will look around the house for things to clean.

I gave birth to him a 6 days after my 17th birthday, his father was my first ever partner we were together for 4 months before I got pregnant, a few days before I found out I was going to leave him but I didn’t have it inside me to tell him, I was weak and very scared of what is reaction would be, then I found out I was pregnant the thought of aborting my unborn child never crossed my mind I was going to face up to my responsibility, I told his father that I was carrying his baby, he was happy I had this dream that me and him would now be happy together, I broke up with him when my son was 3 months old, he said he wants to be in his life and he will always be there for him. To cut a long story short as soon he realised that my son was a little different from other children his age he stopped visiting as much, when he was diagnosed with Paranoid Schizophrenia 3 years ago, him and his family cut of all contact with my son, his Fathers words were ‘when he is better call me’

My son has said to me ‘He doesn’t want to see me because I am like this’ he is a very intelligent boy with a high IQ, he is forever apologising to me, he will say things like ‘I am sorry I am like this’, ‘I am sorry that I am not like everyone else’, ‘I am sorry I can’t do the things that everyone else does’. It hurts me the most when he says things like ‘I want to die’, ‘I wish I was dead’, ‘can you ask them to kill me so you can be happy’
You can call me a horrible parent but I don’t take him out much due to the comments I hear from members of the public which mostly come from adults who I didn’t think could be so horrible ‘Is he talking to himself?’, ‘he should be in hospital’, ‘he is not well’. It is very unfair on my daughter that we don’t go out much and she does tend to ask questions about her brother and I just don’t know how to answer them.

There are days when things do get really hard for me, and I say to myself that I wish I aborted him but I quickly shake that thought out of my head, that thought should never ever come into my head. I love him he is very special and I do have faith that he will get better.

I am hitting rock bottom at the moment, but I am doing everything to stop myself.

My mum supports the both of us, my friends do support me over the phone, they never ever want to meet up, and one has even said to me ‘I don’t think you should bring him here, I’m scared and I don’t want him scaring the kids’

Is there anyone here that can give me some help and advice?

TheFantasticFixit Wed 21-Aug-13 13:47:46

Hope - gosh, no, I'm sorry. It isn't what you have written that has upset me, but rather the cruelty of other people towards your son. I really wish you both all the very best. You are both incredible.

Insanity - your advice is brilliant.

HopeAndFaith86 Wed 21-Aug-13 16:53:26

TheFantastic

Oh okay, and thank you.

HopeAndFaith86 Wed 21-Aug-13 17:28:26

MsPickle

I live at Millharbour I used to bring my son to Mudchute a lot when he was smaller as he had an obsession with farm animals but then that obsession changed to animals that live in the sea so it was the aquarium 3 days a week. My daughter loves the farm though smile

I have never really taken him on public transport as I drive. I would like to plan an outing for him where we could go and be back within 5 hours, somewhere where there isn't much people, as I can't stand people staring at him and making comments

tethersend Wed 21-Aug-13 17:34:24

Museum of London Docklands might be worth a visit if you think it will hold his attention. It's in Canary Wharf- I've never seen it really busy, and you will be there and back within 5 hours no problem.

HopeAndFaith86 Wed 21-Aug-13 18:00:51

Tethersend

I don't actually think it will as not much things do hold his attention, I've bought him games consoles and handheld ones hoping he'd be able to focus on them, I do tend to get him things that boys his age like, I also bought him an iPad but like the games consoles he wouldn't show any interests

There are days when he will stand by the window looking out of it for hours, and times when we are on our way somewhere in the car, he will say to me 'everyone looks so happy, I'd like to be like them' he is looking at people going about their everyday life.

He does say a lot of things that break my heart he just thinks that other people are 'lucky'

clangermum Wed 21-Aug-13 18:19:06

I found Great Ormond Street really helpful. We got a referral from paediatrician linked to special school. They assessed and suggested help. They are level 4 CAMHS so have some influence. They might be able to look at all his issues, something I found really useful for us, having a team of experts who all talk to each other.

I hope you get good help soon, he sounds lovely and you are facing too much without proper support.

HopeAndFaith86 Wed 21-Aug-13 18:26:45

Thanks Clangermum

I am going to look into it now, and thanks for saying nice things about my son.

Peachy Wed 21-Aug-13 18:32:43

My email is Bazsmum@live.co.uk, if you want a chat / rant to someone with a sympathetic ear. I am Mum to 2 with ASd and one who pretty certainly will be diagnosed with ASD eventually; the eldest has other psych issues and violence. I am also 5 part time years into an MA in Autism and have experience of working in psych care so hopefully I might be able to help.

He sounds like a clever sweetheart that you should be proud of; equally importantly you sound like an incredible mothr who coped with more aged 17 than many could aged 37.

Any school that teaches kids with ASD specifically should be clued up on MMh issues but that's not the case; I mourn the fact that at Uni we choose ASD or CAMH, they are far too interlinked to be entirely separate.

I've seen mmany kids with SN miss out on a father becuase of it; the fathers are the losers and the families are tight and full of love. your child will not miss outX

moosemama Wed 21-Aug-13 18:51:08

Hi

I am mum to ds1, who is 11 and has ASD and more recently is struggling with intrusive thoughts, which although not the same as hearing voices, is extremely distressing and confusing for both him and us.

I have an adult friend who has schizophrenia and he is involved with a group that supports both adults and children who hear voices. I'm also friends with a clinical psych who works with them in our area and both speak very highly of the organisation. It's The Hearing Voices Network.

Like your ds, medication never managed to completely control the voices and he is now off all medication having been trained to 'handle' the voices instead.

Please do contact them, as they may well have support groups in your area and if not, can offer support via telephone and their online forum.

I agree with others that have said CAMHS are often next to useless and a referral to one of the top centres for Child Mental Health would be a much better plan. At least if you get to one of the places mentioned upthread that specialises in Autism, you will be halfway towards getting some decent specialised support and hopefully from there they can refer you on for better support for his schizophrenia.

I think you are an incredible mum and your ds sounds like a lovely lad, who is struggling and being failed by both the medical/psychological and educational establishments. sad

HopeAndFaith86 Wed 21-Aug-13 19:02:22

Thanks Peachy and Moosemama

MrsDeVere Wed 21-Aug-13 19:37:39

Hi hope
I was just wondering if your son was under The Tavistock?

moosemama Wed 21-Aug-13 19:54:44

That's the one MrsDV. I was desperately trying to remember what it was called while I was posting earlier.

I met one of their psychs during a MN live chat and she couldn't have been more helpful. It's definitely worth seeing if you can get a referral there if you aren't already under them.

Tavistock and Portman NHS

MrsDeVere Wed 21-Aug-13 19:58:09

Hope some boroughs have an arrangement re funding for the Tavistock.

It may be that yours does, are you Newham or Tower Hamlets?

They really are the experts.

Also you may want to think about getting a referall to the specialist clinic at Great Ormond Street. There is a new service for children with ASD who are complex and your DS certainly seems to fit the criteria.

Hang on a sec and I will try and get the details.

MrsDeVere Wed 21-Aug-13 19:59:30
HopeAndFaith86 Wed 21-Aug-13 20:06:07

Moosemama. I haven't heard of Tavistock until now.

MrsDeVere I am under tower hamlets and thank you very much for the link I am going to click on it now.

Really worried about my son, he is sitting in the corner in my passage crying silent tears he has been for the past two hours he won't tell me what he wrong, he just says he is okay, and also he hasn't eaten much today, whilst he is like this it is best to leave him alone, I will give it 20 minutes then try and get him to speak to me and have something to eat.

I am very tired and no doubt he is too. I am tempted to give him a full tablet tonight so he sleeps through to the morning but I will just be left feeling guilty

LEMisdisappointed Wed 21-Aug-13 20:15:23

Would a full tablet hurt him? really? if he is that upset, wouldn't a good sleep actually help? Of course if it is over the max dose then you can't but i often take a second AD even though im not supposed to because i know the actual max dose for me is double the dose im on.

I didn't actually realise that children could get schizophrenia sad It must be fucking torture for you as his mum. I have to say that i am so impressed with you, you seem so calm when you talk about it. He is very lucky to have you as his mother.

Are you getting support from social services etc in terms of respite care? Does he go to mainstream school? sorry i don't have any experience but i just wanted to offer my support and tell you i think you are brilliant.

MrsDeVere Wed 21-Aug-13 20:24:30

It all sounds very difficult and distressing for you both hope.

I think I would be asking for a re-assesment by a specialist team. Tavistock/GOSH or perhaps the Maudsley.

Your boy needs to be seen by professionals who understand his complex needs.

You will need a lot of strong evidence if you want to get him into an out of borough and/or independent school.

My son is adopted, bereaved and has autism, learning difficulties and severe auditory processing disorder. It is really hard to see someone who understands the different aspects of his issues and how they interact with each other.

oh for a specialist in adopted kids with ASD.

I wish you the best and if I find any resources I will let you know. I am not in work next week unfortunately but if you are going to be sticking around on MN I am sure we can catch up.

I work in SN in a neighbouring borough (with younger children) and I pick up information here and there.

Mumlar Wed 21-Aug-13 20:41:49

I wondered if you had seen this in The Guardian earlier this year. It is extracted from a book. Reading your thread made me think of it immediately. You sound extremely brave and together.

www.theguardian.com/society/2013/jan/19/my-daughter-the-schizophrenic

Catnap26 Wed 21-Aug-13 20:57:10

I simply couldn't read this and run without telling you you are one amazing mum.i have no experience or advice but your children are very lucky to have you.as hard as it can be at times,concentrate on your sons positives like he is very intelligent and from what you have said a very caring little boy.i hope you and your family get as much support as you deserve smile

Like many other posters I have no experience with the difficulties you face but just wanted to say that you sound like an incredible mum, and your little boy is lucky to have someone like you fighting his corner

HopeAndFaith86 Wed 21-Aug-13 21:38:36

LEM

I gave him a full tablet, he is asleep now. I feel dreadful for doing it sad he is going to wake up very drowsy tomorrow, I called his social worker today to inquire about respite care, she said she would call back but didn't so I will chase her up tomorrow. He used to go to a mainstream school but now is in a school for children with autism and behaviour problems they aren't really experienced in dealing with children with mental health problems, I am trying to find a school that will be a lot more suitable for him.

Thanks for your support.

HopeAndFaith86 Wed 21-Aug-13 21:40:04

Mumlar

I have watched the Jani Schofield documentary on YouTube, I would say that my son is on 'her level' I have ordered the book on amazon

HopeAndFaith86 Wed 21-Aug-13 21:41:08

Thanks Catnap and ThePieSmuggler.

JassyAlconleigh Wed 21-Aug-13 21:46:32

I too just wanted to add my admiration to you; he's a lucky boy and you sound like such a mum in a million.

I really hope that you get the RL inormation and support you both need.

flowers

LEMisdisappointed Wed 21-Aug-13 21:53:46

oh, im glad you gave him the extra tablet. It will be better that he gets a full night sleep and you get one too! I hope that you can get the support that you and your son need. He sounds like such a lovely lad actually, despite everything he is still worried for you - that is actually pretty unusual for NT children of that age - that shows how much love you have given him, you should be proud xx

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