I am hoping for input but please don't lay into me for considering this as despite being more than up for a debate under normal circumstances, I am fragile over this..
My DS, (R) is 11. He has complex needs including a cerebral palsy type condition which means he uses a wheelchair but is very mobile and active. He is in fact hyperactive and has been increasingly violent since the age of 5.
I would do anything for R as I would any of my children, but necessarily, his needs have taken precedence over everything and everyone the years. He rules the roost- the house is geared up for him/partly custom built for him. He is a poorly sleeper, have mod - severe learning difficulties, health issues although is healthy and robust, developmental delay, diagnosed ADHD and a non-diagnosed ASD. I am not so much surmising the ASD as I just haven't chased a diagnosis although may need to now.
We get 24 nights a year overnight respite (at a respite centre) and 16 hours per weekend (which equates to 8 as he is a double-hander) via Direct Payment funded carers. This may sound a lot and for a little while a few years back, felt like enough but R has got much more challenging. Iwork Mon to Fri ()have done since 2009, prior to this I lived and breathed R but when my marriage ended I needed to work to stay sane. I love my job and work 25 hours a week. The 8 hours without R at the weekend I use for housework and/or girly time with DD.)
My marriage to exH broke down in 2008 but he remains involved with the children. (DD is 12 and quite anxious. I also have a 19 year old DS from another relationship who has his own health issues but is very able to take care of himself although lives at home). ExH cannot have DS overnight as R requires a specific and secure environment. He can only stay over night at respite which equates to a couple of nights a month. ExH and I used to have a vague plan that we would share R 50/50 but that's not going to happen and ExH will not be able to sort himself out with suitable accommodation any time in this life (just being realistic!)
I am permanently exhausted (have been for years) and DD and I get hurt regularly - our hair pulled out, pinched, bitten, kicked and punched. I try to keep DD out of it but she adores R (and he her in actual fact) and always tries to assist me when I am forced to grapple with him (daily) to dress/changed him (R is doubly incontinent and is likely to remain so).
R is very very strong and when he does not want to do something he does not do it. And people get hurt. I can barely lift him (he's 5 stone but feels like a dead weight and a biting/kicking one at that).
DP lives with me and is very helpful and practical with R but finds him a challenge and everything puts a great deal of strain on our relationship. I never imagined anyone would be able to live with me under these circumstances; it sort of works but DP is quite highly strung and the relationship is always under pressure. He has a challenging job and does not get much sleep - and that's without R waking every morning at 5am, banging until someone attends! Everyone's always telling me that they couldn't do what DP does (live with us) because of the way R rules our life and I don't disbelieve this. I can hardly live it myself sometimes!
We, exH and I. have recently (and by no means easily) come to the realisation that Mon - Fri residential school might be the option we need to take now. It has long since been being mentioned to me (by my bosses; I work in a clerical capacity in a care setting; by my mother who worries a lot about us, by various professionals we come into contact with) that this could be a positive outcome. R's paediatrician recently said (not in some many words but to paraphrase) that when I can put aside the guilt at considering such an option, I may be able to see that it is possiblly not the best thing for R to be living like this either, constantly having these violent melt-downs. ExH was with me at this appointment and although he has always been resistant to the idea of residential school in the past, is now not, This is also largely to do with the fact that he gets hurt too. (When he had the children at the weekend end, R bit his head in two places and he brought them back early with DD and himself both v stressed. R then launched a further attack on DD, grabbed her hair and shaking her head with both hands - she became hysterical!)
We have just been allocated a new social worker (we had been without one for a while) and she visited on Fri to start a new assessment as I had asked for an increase in respite nights to help us cope. She has a history as an autism specialist and used to work in a residential school for children with ASD/Challenging behaviours and straight away highlighted that R is obviously on the spectrum (which, as I said, I already knew). She spoke to me, DP, and then DD on her own which i was pleased with as poor DD is so often overlooked. (DS1 was still at work). She is visiting R's (special) school this week (where he had a history of challenging behaviour although they are coping - ish so far and a few serious incidents one, in Y5, where a child was rushed to hospital for emergency surgery on her face after R pushed a book shelf onto her). The social worker is meeting exH as well and there is a Child In Need meeting booked for next week to look at respite/other help being re-allocated due to the situation.
Ex H and I met for coffee earlier today and discussed what we have sort of decided - that we need to push for Mon -Fri residential and that we are going to look to visit some places. We both feel its time to put DD first whilst also considering that perhaps this is the right thing also for R. Obviously this is doing to be a process and a half - finding somewhere.. a place being available, convincing social services/health services/education etc etc etc.
My main concerns are:
Where? I am fairly sure there is nowhere suitable in the county.
Being away from him.. he's 11, my "baby". What if he runs a temperature/gets a cold/ throws up? He will need Mummy and Mummy will not be there!
The guilt. How will I live with myself?
These are just the first three that spring to mind. I desperately need to talk to people that might understand this situation and how I have got here.
I feel like I am at a crossroads in my life. I don't know which way to turn to make the right decision.
Thanks for reading all this!! (If you've managed it!)
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Residential school.. who else has made this difficult decision? Please help! :(
16 replies
JarOfHearts · 05/09/2011 20:45
OP posts:
justaboutstillhere ·
06/09/2011 09:19
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