I am on the edge

[starsparkle08]

I have a very challenging disabled son Primary age he presents with extreme behaviours and is hitting , kicking , biting me on a daily basis. Shouts at me , screams , won’t sleep . I average about 4.5 hours of sleep a night . The lockdown is adding a lot of pressure . Specialist School are having him a few days a week - I don’t work but this is due to his extreme needs . He is 2:1 but even with this many staff cannot cope and we are losing respite now as he targets other young people and staff . So it feels we are losing everything. When he was at school today , I walked down a footpath that crosses a railway line and I sat close by On the grass ( within safe distance )for quite some time thinking a lot about wanting to end it all. Obviously lockdown isn’t causing all our problems but it has escalated them and my mental health has deteriorated rapidly. I live alone and it’s just so hard

Poor you OP. My heart really goes out to you.
Are you still not getting anywhere with your GP?

I would be asking the GP for as many drugs as they can give

Jesus. Poor kid is only 8 😢

@pocketem

Not ideal but nothing about this situation is. 8 is also very young to lose a parent if there are other short term measures that could ease OP’s load. This might not be the solution - there are a number of useful suggestions on this thread.

How are you getting on OP?

I walked out the house in I can only describe a trance like state yesterday when my son was at school. I walked down a footpath that crosses over a railway line and must have sat for a very long time by the railway. I have told a professional this morning about this and she has contacted adult mental health services who are phoning me this afternoon and is speaking to my sons social worker also. They are going to now be having my son in school everyday of the week. I don’t feel in control of myself at the moment. The sad thing is there is nowhere that can have him for a short period of a week or so. Places are reluctant / refuse to take him. Basically I’ve been told in an emergency situation he could be sent anywhere in the country.
He is only 8 but all the agencies working with us have said he is the most complex child they have come across. One of which has worked in this area for 25 years. The reports and documents about him are heartbreaking. The manager at his old respite home said he had only come across children like my son in residential and they would struggle to accommodate my son at respite even with 4:1 support.

I don’t want him on loads of medication but I want the afternoon adhd medication increased.

I’m struggling to get by hour by hour at the moment and all I want to do is climb into a hole. I’m getting palpitations before my son gets in from school. He has transport fortunately ( has to travel alone as Can’t be with other children ) and has an escort with him

Hi op, well done for telling someone, I think that's the right thing you've done. It sounds such an incredibly hard, hard situation.

Would you consider a week's respite even if it meant he would have to go somewhere else in the country for it? I would urge you to consider it. If a residential setting with 4:1 would struggle to support your son, I can't even begin to imagine what life is like for you on your own caring for him.

Has your social worker phoned you yet? If so can you get a contact number from them for an emergency MH team?

Yes absolutely ask them to tweak his afternoon meds, I've heard that can help with ADHD when there are particularly difficult patches of the day. Can you call his consultant and explain it's urgent And you feel unable to cope, ask them to agree it immediately and tax prescription through to pharmacy.

Op this is an incredibly tough, awful situation. You have done an incredible thing to come this far. Please keep holding on and keep telling professionals until they do something to help you.

@pocketem Unclutch those pearls. Whatever treatment this little boy is on, it clearly isn't helping. So yes, he might need an increase. Whatever it takes to enable this boy to live a calmer, happier life.

((((HUG))))

I am so sorry you're going through this xx

I wish I had something helpful to add to the other great advice, but I really don't. Other than to say I really hope you get some help soon and please look after yourself. You sound really lovely & the world needs lively people xx

@starsparkle08 Hope you're doing ok OP. How are things?

I’m still struggling a lot . I wrote a Goodbye note to my son yesterday . I’ve no immediate plans but I feel the need to have it there .
My sons psychiatrist rang today and he is hopefully going to adjust my sons medication but he was more concerned about me and is contacting mental health services . I have no idea what will come of it though

You must get help, for your own sake and that of your young son, I hope you were as honest with them as you were with your post. I so feel for you, but there IS a way out of this that will mean you and your son can move on together from this seemingly impossible and impossibly challenging situation, and there is hope, though it seems like there isn't. I would put all my energy into bugging the hell out of any professional that could help, every one he has involvement with. Are you getting any sleep at all ?

Yes I was completely honest - I feel drained now from talking to the psychiatrist ( my sons ) earlier and also worried what will happen now I’ve said these things completely unfiltered to him .

Sending hugs OP. Please keep checking in here. We’re watching over you virtually.

Well done for telling the psychiatrist how things are OP. Have MH team been in touch with you since then?