Just that really. I dont know what to do for the best. I have two children. Eldest is NT and 12 and youngest is 10 and ND. He is non verbal, needs 24 hour supervision and relies on me for all his self care. Has no danger awareness, no impulse control and no idea of safety.
I have health problems of my own - a cardiac issue, rheumatoid arthritis and fibromyalgia. My exh walked out years ago and im on my own with the kids now.
In recent weeks my youngests behaviour has just deteriorated so rapidly. He is a big boy and so strong. When he lashes out it really hurts. He bites, nips, kicks, headbutts, shoves, pulls out handfuls of hair and punches. He was always volatile but since the summer it just seems to have stepped up a gear. He still uses nappies and is under the continence team. Recently when at home he is taking the nappy off and peeing or pooing all over the house. Im constantly washing bedding, scrubbing beds, furniture and floors. When its poo he smears it all over himself and the surrounding area so he is needing a lot of extra bathing too. He knows what the toilet is for, will sit on the toilet and I had been lucky with timings a few times and I caught him at the right time and he did use the toilet. The same in school. But he doesn't indicate through pointing or Pecs when he needs to go and will just use the nappy. This morning he woke up and took the nappy off so i took him straight to the toilet, we sat for 20 mins, he did nothing, i turned round to get the nappy and he stood up and covered my bathroom in pee laughing like its a game to spray the whole place with pee so i had to start scrubbing the bathroom at 2.30am while also trying to keep him quiet to let his brother get his sleep. His sleep is atrocious and im lucky to get 3 or 4 hours with him before he is up bouncing around again.
I have no support whatsoever.. .. I have been waiting to get appointed a social worker for years but I still havent made it to the top of the list. School have wrote letters on my behalf and submitted reports, hes been seen by educational psychology and they have written reports but nothing ever changes. We are in Northern Ireland and he has a statement and attends a special school so his physio, SALT and OT is all in-house at school. They have all tried to help things along to get help for him and me but still nothing changes except hes getting bigger and stronger and to not put too fine a point on it, he scares me now and Im worried hes going to seriously injure me some day and it will be my eldest here scared and alone that wont know what to do and he shouldn't have to live with that fear at such a young age. Hes still a child himself. I feel we are past the point of crisis. I cant keep going like this and I feel so guilty for my eldest because he misses out on so much. Youngest basically rules the house. If he is having a good day, we all do, if he is having a bad day, we all suffer. He is under the learning disability team and they have diagnosed severe learning disabilities and autism last year. His school, OT, SALT and myself also think he has ADHD as well as SLD and autism but the consultant is dragging his heels on this so he is undiagnosed and therefore not medicated. I think if this was addressed, a lot of other things might fall into place.
Does anyone have any advice as to how to keep the nappy on him so at least im not constantly scrubbing and paranoid the house smells? Or how to get a social worker so I can get some help and support? In order to get anything you need a social worker as it would be them that organises and does the referrals for things like carers and respite etc but I cant even get a social worker never mind join the waiting lists to get help. I just dont know what to do but I cant keep going like this. Ive been having chest pains and palpitations recently and I know its stress from the regular violence but I dont know what to do. Im his mum, I love him so much but I dont know how to help him and I dont seem to be getting any help from anywhere except his school 5 hours a day. They are all I have and are amazing. They themselves are astounded that I havent got a support plan in place as they say he is the most demanding child in his class and yet im the only parent who has no support outside school.
Im writing this sitting on the edge of his bed to try and get him to sleep. I have to stay in his room to make sure he at least goes to sleep with the nappy on and to try and keep him quiet so his brother gets his sleep. Im just totally at a loss.
Also just to add he does attend the sleep clinic and he is prescribed melatonin but as always it doesn't keep him asleep and the sleep clinic say thats all they can give him. Anything else would need to be prescribed by his consultant who as I said is in no hurry to do anything.
Sorry it was a long read but I wanted to get it all out there. Thanks for reading this much.