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?

DfanjoUnchained Thu 22-Aug-13 06:01:08

My cousin goes to overnight respite once a week, really helps his mum. There are such places, especially in London

FayeKorgasm Thu 22-Aug-13 01:18:07

Hope, you are doing a wonderful job and your son is a very lucky boy to have such a caring mum.

I am a governor of a special school and am continually amazed at how inspiring the parents and children are. I sincerely hope that you and your son can get the support you need moving forward.

Hellonewworld Thu 22-Aug-13 00:34:15

I would definitely suggest trying to organise some respite care for him . You sound shattered and how much longer realistically can this carry on without seriously damaging you and your daughter? At your next appointment with the psychiatrist ask for therapy or to be referred to a specialist, do not take no for an answer as he sounds like he needs to see specialist people who can help him and stabilise his condition or at least ensure he is receiving the right and the best medication. You and your son deserve to feel safe and secure in your home and it sounds like he is unhappy too. Hugs to you. I hope you get things sorted x

HopeAndFaith86 Wed 21-Aug-13 22:03:54

Hey Lilian

I would never consider a home for my son he is only 9 years old, I would be too worried to let him live somewhere else sad I consider my son as my life but you are completely right I am entitled to a life of my own with my fiancé and daughter who is missing out on a lot of things.

lilian3 Wed 21-Aug-13 20:17:01

I have several friends with autistic children and I know how very very very hard it is. My cousin had to have her son to go reside in a special school. But she is till very hands on, but the damage done to the other son is irreparable. Would you ever consider a home for him? he would get the care and attention 24hrs a day by specially trained people. I do feel very strongly that you are entitled to a life of your own especially with a new fiance. Iy is NOT abandoning him. Do please have a think for the long term of him and your immediate family. Good luck.

HopeAndFaith86 Wed 21-Aug-13 16:54:36

Gretagrape

Thank you.

gretagrape Wed 21-Aug-13 16:10:51

No advice at all but just wanted to say how in awe of you I am - I am 39 with a perfectly healthy 4 month old and am finding it the biggest struggle of my life, so please stay strong and pester for all the help you need.
x

DfanjoUnchained Wed 21-Aug-13 13:38:39

And you are definitely not a terrible mother, you are in a very tough situation and need support
X

DfanjoUnchained Wed 21-Aug-13 13:37:56

Homestart can help you take them out, it's another pair of hands once a week for free, it will help. Let me know how you get on

HopeAndFaith86 Wed 21-Aug-13 10:38:33

Dfanjo

I will copy and paste this thread in the mental health section.
My daughter is here with me, so there is no way I could go to sleep even if I was to put her down to sleep with me. I have no idea what he would do if I went to sleep and left him up, he is awake now just walking up and down the passage this can go on for hours, and I don't like to disturb him.

I've never contacted none of what you have mentioned and I am going to google HomeStart now.

I feel like a terrible mother my daughter has been crying to go out since she woke up and I can't even take her.

DfanjoUnchained Wed 21-Aug-13 10:21:22

Have you ever contacted your local mp or councillor? My mother was one for years and did 'surgeries' every month where people would go and discuss problems they were having with housing, health etc and she could be an advocate for them.

Also have you tried HomeStart? I used to volunteer for them. They could help you at home when you're knackered.

The more people you have on side the better.

DfanjoUnchained Wed 21-Aug-13 10:17:43

Have you thought about moving this thread to child health or mental health op? Or even just writing a duplicate there, I think it would help.

Poor you up all night. What would happen if you went to sleep and left him up?

I'm very saddened that there isn't much help, apart from CAHMs for children with mh issues. There's a lot for SN. Makes me want to open somewhere!

elsabel Wed 21-Aug-13 09:46:19

I havent read through all the replies so this has prbably been said many times, but you are amazing OP. Dont ever feel bad for anything as it sounds like you are doing a fantastic job.

I work with adults with mental health problems, so will not offer any advice as im sure with children it is a completely different deal, but it must be so diffocult for you and your family. Watching people suffer like this is heartbreaking, especially for a child.

Big hugs to you and your lovely little boy, he sounds amazing

HopeAndFaith86 Wed 21-Aug-13 09:45:05

Thanks ladypop

ladypop Wed 21-Aug-13 09:24:13

We are all here sending positive thoughts to you xxx I know it's no 'real' help and it feels silly just writing this, but you aren't alone xx

HopeAndFaith86 Wed 21-Aug-13 09:16:27

Morning Dfanjo

Thanks for checking up on me, I really appreciate it. I'm very tired I didn't get any sleep I was up with my son the whole of last night. He has a new belief that people are trying to kill his sister (my daughter) and it's all his fault (he kept apologising) and that we should take her to live somewhere else so she can be kept safe

He didn't want to eat this morning he has gone for a lay down. I will try him with the omega 3 but I am 99% sure that he won't want to try it.

His diet is very poor, he is not eating as much as he should be, he is very skinny and looks ill, his doctor did refer us to a "food clinic" but my son didn't want to go.

Please tell your husband I said thanks and thanks to you too x

DfanjoUnchained Wed 21-Aug-13 07:47:44

Omega 3 fatty oils

DfanjoUnchained Wed 21-Aug-13 07:47:14

How are you this morning Hope?

Just talking to my H about your son (his mum has paranoid schizophrenia and grew up around it) and he sends his love, said its very good he tells you when hes having bad thoughts. He said straight away put him on omega fish oils as apparently he's read journals on it helping. Also Flaxseed is good too.

Maybe ask your Gp if he can be referred to a nutritionist as well as diet can improve mh conditions so much.

Cbt seems very appropriate as said upthread and your boy seems so intelligent and self-aware that it would definitely help.

HopeAndFaith86 Tue 20-Aug-13 23:51:08

Thanks Omei

Wheredidmyyouthgo. You can speak to me I know what you are going through and yes it is extremely difficult

Wheredidmyyouthgo Tue 20-Aug-13 23:41:09

You are the best. Keep going, my heart goes out to you and your little boy.

My husband is schizophrenic, he is on high doses of aripiprazole and fluoxetine. I fear he is getting worse over the past few weeks. It's so scary and I can't talk to anyone about it.

It's so very difficult. There are people out here who care, hang on in there.

omri Tue 20-Aug-13 23:32:43

smile You are wonderful. Keep remembering there is light at the end of even the longest darkest tunnels.
And keep posting - virtual support is better than nothing until you get the support you need in real life.

HopeAndFaith86 Tue 20-Aug-13 23:26:37

Thanks Omri (I love that name by the way)

omri Tue 20-Aug-13 23:16:08

Dfanjo not fjango

omri Tue 20-Aug-13 23:15:11

Hope and faith- I just want to add my message to you of wonder and sympathy. You are an amazing mother. Your strength and love clearly are limitless for your little boy. I have the utmost respect and admiration for you and what you've been through. I don't have any practical advice for you like fjango and others on the thread but I still wanted to send you huge hugs and encouragement for what you are having to cope with.

I have no experience with schizophrenia in children, but I can't begin to imagine how heartbreaking it must be. My little sister was diagnosed with psychotic schizophrenia and paranoia a few years ago in her 20's after a few very difficult years when our family really didn't understand what was happening to her (and even more difficult for her when she was suffering alone). After many types of counselling and alternative therapies she eventually was put on a combination of chlosaril and lexapro after many long and heartbreaking stints in hospital. The cbt really helped her too with distraction techniques and recognising when things are getting bad. As well of course as 100% support and love from her family. I'm only telling you this because after years when we thought she'd never survive the year or get over this illness, she has in the past 2 years got her life back on track, learnt how to manage the illness, retrained and got a job working with the elderly, met a lovely honest caring down to earth guy and they are getting married next week.
All this when we thought she'd never have the life we had all wished for her. Keep up your hope and faith. Our family was on the brink of losing ours for our baby sister.

And as well as the hope and faith, fight fight fight for all the services your baby boy is entitled to. It's a scandal that you have to fight for these things...
Ugh I'm waffling here but what I want to say to you is that you sound like a unique and amazing young mother with a very special and intelligent little boy who has a serious mental illness. I sincerely hope things start to improve for you and your son really soon and that you get the very best support and care that you deserve. Take care of yourself.

DfanjoUnchained Tue 20-Aug-13 22:50:26

Keep writing, there's always someone listening here. Maybe post in child health section? Or mental health section is very busy and there might be more people with more experience ? I'm still researching agencies who can help

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