Hitting rock bottom.

(59 Posts)
HopeAndFaith86 Tue 20-Aug-13 14:39:26

Hi 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?

FeralGirlCambs Tue 20-Aug-13 14:44:27

Dear HopeandFaith, though I don't think there's anything at all useful I can say as I have no experience of anything like this, I can't just read this and ignore. I am SO sorry that things are so hard for you and your children. You sound very brave and very loving. Hope and Faith aren't enough though, so i do hope someoneelse comes along quickly, in real life or on mumsnet who has some proper support to offer. Look after yourself. xx

Dackyduddles Tue 20-Aug-13 14:45:46

No real active help other than you are entitled to have every thought you have. Including the thought of what if he wasnt here? You see in my opinion by throwing that thought away the feelings do not fester and/or grow. That means you love him. I would personally be more worried for you if you had never thought something like what if? Im not sure thats human.

DfanjoUnchained Tue 20-Aug-13 14:47:41

I don’t think you should bring him here, I’m scared and I don’t want him scaring the kids’

Firstly, ^this is not a friend. Do you get respite apart from help from your mum? Have you looked into respite care for weekends or maybe once a week? There are some good places to give you a breather (I have worked in such places).

Secondly, I was welling up reading your post. You are an amazing person and mother. Your ex and his family are pathetic, disgusting people to cut a child off due to mh issues.

It really sounds like you need more support. Does you fiancée come over much or interact much with him due to the devil thoughts?

CatchTheFox Tue 20-Aug-13 14:59:25

ohh i hope there is someone on here who can offer you some help and advice. you must feel so isolated and alone sad.

FWIW i do not think there would be a person alive who could live that life without some negative thoughts creeping in.

Your life sounds very difficult. In your position I would feel resentful, lonely and afraid. And yet despite all of this, here you are reaching out, striving to make life better for yourself and your family. You are not done yet - keep fighting.

I desperately hope you find the help that you need. I'm just sorry I can't offer you any more than a sympathetic ear.

HopeAndFaith86 Tue 20-Aug-13 15:05:44

Firstly I'd like to thank you all for replying, I have been on many sites to seek advice but no one ever replies.

Dackyduddles your message has made me feel a lot better.

Dfanjo I do not get any respite it has never been suggested, but it does sound like a good idea so I will ask my sons social worker.

Yes they are very pathetic and disgusting people and my son is the one paying for their childish ways.

My Fiancée doesn't come over much due to my sons devil thoughts, my mum comes to my house and looks after him whilst I go out and spend time with my daughter and fiancée, I feel terrible because the 4 of us should be spending time together.

I just wish my son would get better sad I ignore most of his behaviour such has him pacing up and down the corridor which is what he is currently doing now, what else am I suppose to do?

rumbelina Tue 20-Aug-13 15:15:07

I also couldn't read and run. My heart goes out to you both. Poor boy apologising for himself at age 9. And you sound like a great mum, it must be really hard to constantly be rejected by friends/family/strangers. You have had a hell of a lot to deal with and I'm really sorry that I can't offer any valid advice except to maybe try to find (I don't know how, sorry) other parents in your area who have similar experiences with their children who you can meet up with.

I hope you get some more RL support. And it's normal to wonder about life without children at times of high stress. It doesn't mean you don't love them. Your thoughts are your own, your actions are what count.

ladypop Tue 20-Aug-13 15:18:40

I can only guess how low you must be feeling and just wanted to send a virtual hug your way. I am so sorry I don't have any practical advice, just wanted to let you know that there will always be people on here that will try to help and offer support, even if it means you know people are thinking of you and you aren't alone. flowers

HopeAndFaith86 Tue 20-Aug-13 15:40:14

Thank you very much rumbelina and ladypop. Whilst my son was in hospital I met a few parents but their children's condition was no where near what my son is experiencing.

Every time he apologises I tell him that he doesn't have to apologise because it's not his fault, he does also ask 'why am I not like everyone else, what did I do wrong'

I will always have hope and faith and I know one day he will get better

Vow11 Tue 20-Aug-13 15:47:30

I just want you to know you sound like a lovely mum... any thoughts you have had of aborting him are completely normal given the high level of stress and worry you are under. Please don't beat yourself up about that. I think there must be some kind of organisation who can help more with his issues. What if any kind of medication or therapy is he receiving? How old was he when you noticed that he was 'different'? It must be so difficult especially as his father was so unsupportive.

I agree that which ever 'friend' said that to you is really no friend to you at all.

Have you tried speaking to real friends about how hard you're finding it?

I think you need to take really good care of yourself in this situation and keep loving your boy. you sound like you're doing an amazing job.

DfanjoUnchained Tue 20-Aug-13 16:04:07

Yes, definitely ask SW or CAMHS about respite. Not surprised it hasn't been suggested or offered and these things will always have to be fought for or sought out by parents/carers.

My sister has a severely disabled child and has to hound SS and other agencies for help even when at her lowest with no energy, it's a disgrace.

Don't feel bad for enjoying yourself when apart, you are amazing supportive mother but in order to be that, you need respite.

Whereabouts do you live in the uk?

HopeAndFaith86 Tue 20-Aug-13 16:04:52

Thanks Vow11

Therapy has never been suggested, all they seem to want to do is admit him into hospital. He was 7 when he said to me 'Why am I not like everyone else' he did go to mainstream school until the age where he was getting bullied 'behind the teachers back' for months every time I spoke to them they denied it of happening 'maybe it's happening in his head' is exactly what his teacher said to me after him coming home with a bruise on his arm. I removed him from that school, he does attend a school for children with special needs and behaviour problems but he does get very upset when there because the voices tell him to harm people and do things to his classmate, which he has acted upon.

Yes it is very difficult and upsetting knowing that his father doesn't want to know him, but I say that's his loss.

I do have some friends that geninuely care about mine and my sons well being but they never want to meet up.

Thanks once again for replying I've signed up to other parenting websites and got zero replies, so thanks for that. Enjoy the rest of your day smile

DfanjoUnchained Tue 20-Aug-13 16:08:18

Cross posted, yes therapy is a good idea. Drugs will always be pushed first, ask for a referral to a child psychologist from his Gp or SS

HopeAndFaith86 Tue 20-Aug-13 16:33:46

Dfan

We have an appointment with his psychiatrist in 3 weeks time, he is a Locum whos only interest is to prescribe my son with medication, would he be able to refer me to a psychologist or would I have to ask my doctor? I know these things take months sad

DfanjoUnchained Tue 20-Aug-13 16:37:17

Did you see my message before yours up thread? Whereabouts are you in UK?

I would ask your Gp for advice on referrals for therapy.

DfanjoUnchained Tue 20-Aug-13 16:38:31

Was also going to say that as he gets older better medication will become available to him that should actually help.

DfanjoUnchained Tue 20-Aug-13 16:44:14

Just reading a few articles about this condition in children and management.

This is interesting and if you read sections 5 and 6 it discusses interventions like art therapy and cbt

HopeAndFaith86 Tue 20-Aug-13 16:54:32

Sorry Dfan

I knew I missed something out, I live in East London (Docklands)
I will book an appointment with his Doctors tomorrow. In terms of medication as he gets older, I also think so too but that won't be until he is in his teens.

I will read that article right now

Lucelulu Tue 20-Aug-13 17:05:54

You poor thing, you sound like you're dealing with so much.

I have a husband with bipolar disorder so can imagine some of what you are dealing with - althoughfar from all.

Most people I have spoken to about mental illness advocate a combination of talk and drug therapy. I've heard CBT mentioned a lot and wonder whether this would be a worthwhile thing to look into. As your son grows up he willbenefit fromhaving as many tools as possible to manage his illness.

Recognising triggers and behaviours and feelings is very important and knowing how to seek help, including medication, would help him tremendously. I'm sure this has come up during his treatment but from my perspective really worth prioritising.

And of course you must take care of yourself too. I havefound an invaluable online 'list' where people with similar situations support each other and share information. It's probably too specific to bp for you but I would guess there's something similar. They have a good website on resources and drugs too - bpso.org.

You should beproud of yourself for dealing with all of this, i know how hard dealing with a partner is. Never mindyour son.
Take care

DfanjoUnchained Tue 20-Aug-13 17:22:22

Are you under Tower Hamlets then?

Found this: Respite

DfanjoUnchained Tue 20-Aug-13 17:23:33

Reading the CAMHS Tower Hamlets website it seems they have workers who can offer therapy. Definitely call them and push ask smile

HopeAndFaith86 Tue 20-Aug-13 18:04:02

Hi Dfan

Yes I am under Tower Hamlets CAMHS, I will speak to my social worker and ask about the respite, thanks so much for your help I can't believe someone who I've never met could be so concerned and helpful

PinkBiscuits Tue 20-Aug-13 20:04:15

What an amazing person you are.
I think that everything that has been said here about being pushy about getting some respite, and asking for psychological/therapeutic treatments alongside medication is absolutely right.
I don't know anything about children's mental health but for adults there is a therapy called CBT for psychosis which has some evidence that its helpful? There is some self-help advice for adults about Hearing Voices on the First Steps website (so sorry if all this adult stuff is unhelpful for your son - at least rest assured that once he is a bit more grown there are available services and appraoches that will help him beyond just meds).
The fact that your son is able to manage voices that tell him to harm his sister sounds really promising.
Is there any counselling or carers support available for you? I know that the east london Buddhist centre (Bethnal Green) used to offer some programmes to support carers (my East London knowledge is a bit out of date I'm afraid, so sorry if thats a bad lead...). are there any goups for carers of people with autism who might be able to begin to understand you?
Also, I've heard it said by adult sufferers of mental health difficulties that half the battle of dealing with MH difficulties is managing the stigma and somehow being able to see yourself and what you have to offer regardless (or perhaps because of?) whatever diagnosis you have. Um - hope that doesn't sound trite. I went to see an exhibition of pictures painted by people who were MH inpatientsat some point. They were mostly great.

hardboiledpossum Tue 20-Aug-13 20:29:22

Gosh this sounds so hard for all of you. I can't imagine how hard this must be. I would ask for a referral to a child psychotherapist and also a play therapist. I think at his age and also with his level of needs he needs as much talk therapy as possible. I second asking for respite; i think this is really important for your sanity. Do not accept no for an answer.

NapaCab Tue 20-Aug-13 20:36:50

Sorry to hear about the hard time you're having, OP. I live in the US and have come across a blog that might interest you. If you google 'no points for style' you will find it (can't do links on iPad for some reason!). The woman who writes it has an 11 year old son who has psychotic episodes and severe anxiety and is on medication to manage this. She talks a lot about the impact on her life and how they manage his illness.

Also google Jani Schofield, another child with schizophrenia whose parents had a documentary made about her to highlight the fact that children suffer from theses mental health issues too even though most of us assume these are adult-onset diseases.

It might help you to know that you are not alone dealing with these issues. I hope you can get some help from the local resources posted above too.

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