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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?

fluffyanimal Wed 21-Aug-13 10:46:23

Didn't want to read and run.

I have no idea what you are going through or what to suggest to you, but you sound like one amazing brave lady. Here's my hand to hold.

SugarandSpice126 Wed 21-Aug-13 11:00:54

Couldn't read and run.. I have no experience of this but just wanted to say that you are doing a fantastic job, and your little boy is very lucky to have you as a mother. I can't imagine how hard it must be for you, but all you can do as a mother is your best, and you're definitely doing that. I hope that your son gets better with the right medication soon.

Do you ever have a break for yourself? Is there a time when you could? I know it must be hard.

HopeAndFaith86 Wed 21-Aug-13 11:54:05

Thanks Fluffyanimal

Sugarandspice Thanks for replying and your kind words.

I never get a break and I wouldn't want to leave my son with my mum to have a break, I have enquired about respite today my sons social worker said she will give me a call back

SugarandSpice126 Wed 21-Aug-13 12:02:23

Do you think your mum wouldn't be able to cope with him on her own? I'm glad you've asked about respite, that would be amazing. How often do you go out? I know you said it's not very often...

NatashaBee Wed 21-Aug-13 12:06:18

thanks And hugs. I have no advice but I hope you get the respite you need.

insanityscratching Wed 21-Aug-13 12:06:43

I'm mum of two children with autism and really feel for you. My experience of our local CAMHS is that they are pretty useless (the paed from the child development centre agrees) so I would be looking for a referral to an autism specialist service such as Great Ormond Street, Alder Hey, Elizabeth Newson and get more specialised advice.
I would also be pursuing the educational side with a view to him attending an independent autism specialist school in the Priory or Hesley group where he would receive on site support from autism specialists.
I'd also suggest posting on the special needs board where you will get advice and support from others with maybe similar experiences.

LaRosaBella Wed 21-Aug-13 12:12:20

I don't have any experience of this either, but you sound so caring and loving. Your son even though it must be hard sounds lovely.

TheFantasticFixit Wed 21-Aug-13 12:18:52

You are a phenomenal Mum Hope.

Your OP made me sob for your little boy, and you. People - especially adults are so cruel, and his father is just.. gosh, unbelievable.

I don't know how to help, except that I am here to hand hold and am in absolute awe of your strength. thanks

HopeAndFaith86 Wed 21-Aug-13 12:26:49

SugarandSpice

My mum wouldn't be able to cope with him, every time she sees him she gets very teary eyed and sometimes cries, which upsets my son he will continuously apologise to her which makes her more upset. We don't get out much due to the comments from members of the public (haven't been out for over two weeks) and if we were to go out, we'd have to leave in the morning after his had his morning shower and be back for his lunch time shower, I'd never be able to to out for the whole day.

HopeAndFaith86 Wed 21-Aug-13 12:29:48

InsanityScratching

Thanks for replying to my thread I really appreciate it, who would I contact in terms of schools please?

LaRosaBella Wed 21-Aug-13 12:31:20

Your little boy always apologising is so sad, bless him. People can be so ignorant.

HopeAndFaith86 Wed 21-Aug-13 12:36:16

Thanks LaRosaBella

Thanks FantasticFixit, sorry for upsetting you with this thread and yes you are right adults can be very cruel my son has to miss out on having a father because he has an illness in which his father should be supporting him

impatienttobemummy Wed 21-Aug-13 12:36:36

I'm sorry but I don't have any advice, but for what its worse I think that you are amazing and clearly very dedicated to your son. I hope that you get the help that you need soon.

impatienttobemummy Wed 21-Aug-13 12:38:19

worth not worse!

tanfastic Wed 21-Aug-13 12:38:21

Just wanted to say you sound like one amazing lady. Your little boy apologising is heartbreaking. I have no words of wisdom but you are coping amazingly well.

HopeAndFaith86 Wed 21-Aug-13 12:39:26

LaRosaBella

He apologises to me numerous times a day, I always tell him he doesn't have to because he hasn't done nothing wrong but he always says 'I have I'm like this'

Thanks Impatienttobemummy and Tanfastic

98percentchocolate Wed 21-Aug-13 12:40:56

I don't have any experience to offer advice I'm afraid, but just wanted to tell you what an incredible mum you are. You are doing such an amazing job and clearly love your son more than anything. He sounds like a lovely little boy too, it's such a shame you both have to deal with the ignorance of people.

insanityscratching Wed 21-Aug-13 12:49:08

Does he have a statement of special educational needs? Is he in school with support? It will most likely be a fight but for ds who is at an independent specialist school they seem to be working miracles every day and so every minute of the fight was worth it.

MsPickle Wed 21-Aug-13 12:49:31

You sound amazing and so does your son. To have those thoughts and impulses at 9 is horrible and to be self aware enough to not act on them is fabulous.

I don't have direct experience of schizophrenia but have cousins with autism and an uncle with SN so have seen some of the isolation that can occur. WRT the comments from the public-they are ignorant eijits. Where in the UK are you? Perhaps MN can come up with an excursion destination that's less populated so you could all have some time out from your home. That must feel very confined for you all. I'm thinking wide open space or similar? Could he handle that? Could he wash himself elsewhere or does that need to be at home? Will he eat meals outside the home if it's his food? And if showering has to be at home when's the longer gap-breakfast to lunch or lunch to dinner? Would he/could you go on a star watching walk?

Apologies if this is off beam but I couldn't read your post and not try and offer some virtual support.

LaRosaBella Wed 21-Aug-13 12:50:12

I'm glad he has you to support him and make him feel loved. I hope one day he'll understand none of it is his fault and stop being sorry and I'm sure he will with the unconditional support you show him.

HopeAndFaith86 Wed 21-Aug-13 13:07:08

Thanks 98percentchocolate

Insanityscratching he does now go to a school for children with mild autism and behaviour problems, his attendance rate last term was 12% due to him not wanting to go due to the voices in his head telling him to harm other children which he acted upon once, I don't think the staff there were fully trained in working with children with mental health problems, I removed him from mainstream school where he was bullied behind the teachers back whenever I tried speaking to them they gave me the impression that they thought he was making it up... But explain the bruises? The only thing they offered in that school was one on one help away from the other children.

I need to find a specialist school that will cater for his needs.

HopeAndFaith86 Wed 21-Aug-13 13:14:22

Thanks MsPickle

I am in East London (docklands)
I'm not too sure if he would be able to handle that, he doesn't like to eat, shower or use the bathroom else where, he will hold it until we get home, the times he has been in hospital I basically had to use emotional blackmail to do these things in the hospital I would say 'please do it for mummy, you are making mummy very upset' I never ever push him to do things he don't want to do, I felt dreadful for saying it to him but it did work. If I suggested a walk right now he would come but we'd have to be back for shower time. The longest gap is lunch to dinner which is 5 and a half hours.

insanityscratching Wed 21-Aug-13 13:14:39

Well you have a reason to find a specialist school because with attendance only 12% the school isn't suitable to meet his needs. You need to speak with IPSEA www.ipsea.org or SOSSEN www.sossen.org and let them support you in finding the right placement for your child. Whereabouts in the country are you? I'm going to pm you details of a support forum who will help you I'm a different name on there but I'll look out for you.

MsPickle Wed 21-Aug-13 13:34:00

OP, it sounds so hard for you all but he's so lucky to have you in his corner. Have you tried contacting organisations like KidsClub? I know they work with children with very complex needs and I think do quite a lot around mental health, they might be able to offer some support to you all or send you in a direction to find some? It sounds like even an hour's respite where you could be with your daughter could make a difference to you all?

You've the farm at mudchute near you haven't you? From memory there's a biggish bit to walk and you could do that within 5 hours? How is he on public transport?

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