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Residential school.. who else has made this difficult decision? Please help! :((17 Posts)
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!)
Residential schools are more than aware that the children they have are their parents children and loved by them.
Don't make the decision from a position of feeling it is because you can't look after him well for so much time. Just hold that for a bit and go and look at the schools from a perspective of finding somewhere that he will enjoy being, for him.
You'll not be sending him away. You'll be securing an environment for him that is adapted better than the one he is currently living in, where he has an opportunity to be happy with staff resourced and refreshed enough to focus on him.
And tbh, week days after school isn't quality time for any of us, so unless the tired, hungry, shouty, teary experience is something that you feel is worth hanging onto then I wouldn't feel guilty about giving THAT part of the day to someone who is able to be less shouty.
Thank you Starlight. I think we should start looking and I need to get past that emotional hurdle, especially in view of fact that I fully intend to make myself sit in the ChIN meeting next week and tell them that this - residential school -s is what I want/need.
There has to be a point where the needs of one child stop overuling the needs of the other almost entirely.. and DD has had this her whole life and she doesn't even know it. She is 18 months older that R; she doesn't remember a time where he wasn't there and from the moment he was born it was, and has been, all about him. She doesn't know her childhood would have been completely different, either without him, or if he'd been born "normal". And I had a bit of an epiphany the other day, after she'd got battered.. again! About how I would emphatically not allow this to happen to her if it was anyone else hurting her.. but because it's R it's gone on and on.. (and how is that right for him either? To be "allowed" to hurt us in this way?) No I don't want him to be away from our family unit.. but circumstances demand it.. I have to face that. DD is important too!
I forgot to mention that we've done just about everything we can to improve the behavioural problems.. changes to existing meds.. trials of additional meds (he's been on Ritalin.. he went completely off the wall!.. Respiridone.. and later its successor, Aripiprazole.. both robbed him off speech (and speech, such as it is has been hard to come by) Melatonin to help him sleep - no effect at all). Input from the local "Challenging Behaviour Teams" (ho hum.. first was helpful.. current is less so). In recent months we've had him on a yeast free/very low sugar diet to address an exisitng yeast overgrowth issue though to contribute to behavioural problems in children with complex needs/ADHD/ASD. He remains on it (and it's not easy) because we're scared he'll be worse OFF it now!
We have to do this..
I searched for SN threads re residential schools and have found that this isn't a taboo among Mners.. I that's just in my head! Further ho hum.... Need to reprogram head... fast...
Jar, you need to visit a few schools to see that it's all do-able. Don't worry if he is ill, you would be told immediately and might even be asked to collect him if necessary (I know a few families whose sn children have boarded tho not sure how the ability/sn classification works). I have also visited Treloar in Hants, but not sure if this would be OK for you, I am sure there are others.
Also want to mention if you are on yeast diet that Zn supplement helped to wipe out my ds prolonged awful fungal infections (when drs run out of antifungals). My ds was found v deficient in zinc and when we started supplementing the fungal stuff completely cleared up - I then found that yeast/fungal infections thrive in people who are Zn deficient - I only wished that someone had told me that a few years earlier!!
That's v interesting NC thank you! We have been promised a dietician or nutritionist on the NHS so I will run it past them as long as it happens soon.. he is probably zinc deficient too knowing him!
I have been to Treloar with work. But I my head wasn't in the "need to find somewhere to DS" place at that time. I need to do some heavy duty googling...
U been to Treloar too!
If your ds ever had/has a liver enzyme test, one of the enzymes is a marker for zinc.. and zinc also improves brain function
I can't be much help regarding residential schools. Have you tried the Challenging Behaviour Foundation? They may be of help.
All I can say is, I can see how difficult your situation is and I feel for you. Almost none of us chose to send our children away from home and most of us who do are forced into it by circumstances. DS1 15, is quite violent towards us all at home and has never slept well. We now have a shared care package which is marvellous and has saved our lives really. However, I feel so sorry for him as I know he would rather be at home, but he is just impossible to have at home full-time, poor lamb.
It is so difficult I know, but there is also the potential for him to actually have a much better life at residential school, with a peer group he can relate to - not just boring old mum and dad - and lots more activities. It might be an improvement for him, not just a last resort for you? Good luck
There may be a huge battle between health, education and social services over who should pay. Then delays in finding a placement cos every term of messing about will save the council 35 grand. In the meanwhile you'll be thown a few titbits of care, sympathised with and then left to manage somehow. Some parents are undermined or subjected to dirty tricks. Whilst I'm sure your council is one of the good ones it would be very very sensible to make sure your social worker has written down everything youve been told verbally, in case she is ill or reallocated and you get a less helpful one. if you feel uncomfortable, read "becoming a velvet bulldozer" to see why paranoia and ocd are useful when seeking a residential placement.
In the meeting, Social services saying 'he needs a 24hour curriculum' means they want education to pay, education saying 'residential care, accommodate under section 20' means get ss to pay, anyone saying 'maybe he should be admitted for assessment, or perhaps he's eligible for continuing care funding' means let's see if the Nhs will pay. You can bring along a handout to circulate, and then mention as many points from it as you can (for the benefit of the minutes). Clearly state each and every one of his problems, the vast amount of care he needs, the effects of his issues on him, dd and the rest of the family, and the important fact that he is getting bigger and stronger daily. With this level of violence his eventual adult placement would cost the county very dear indeed; but with the right school he could improve hugely.
One strong card in yiur pack is your dd being repeatedly harmed. Make absolutely certain this is thoroughly minuted. If your partner or an older brother was beating her regularly she'd be on the child protection register and eligible for a foster placement. You may well need to threaten, request or resort to asking the child protection team to assess her for the first, but under no circumstances agree to the second as she'd be a lot cheaper and easier to place than DS . The young carers project, school counsellor or even your GP could see her regularly to support and validate her. They may also be crucial in building your case for residential school.
Speak to ipsea or SOS sen before the meeting, ring a solicitor if you can, and definitely bring someone (anyone) to the meeting to make notes and speak up for you. Your DS is obviously getting a great upbringing, as star says, weekday afterschool are rarely quality time for our kids and he will clearly enjoy life more if the behaviour responds to 24h education/care, and of course if he were a NT rich kid he'd already have been boarding for years .
My aunt had to send her DS away to a residential school when he was 9. (He is Autistic)
No-one could love and care for their son more than her.
But she still says sending him away (I think M-F intialliy) was the right decision. And it meant when she did get to see him she had enough energy to enjoy him and love him and care for him.
Instead of being perpetually too tired for any of that.
hi jar my dd is 17 and started residential college last week, it has taken over a year to find a placement and get funding, i know how your feeling as i went through every emotion when it was mentioned (only education available for her since 14) i had to put my feelings to one side and focus on her needs, she is happy as, the staff are fantastic, she gets 1-1 ta at college, then 1-1 at the house where she lives, she's making friends and becoming more independant. started cooking her own meals, they have to do the cleaning, washing, etc (with lots of help and encouragment) not saying your ds would have to do this. but it helps to turn the tables and not feel guilt etc, think about how it would help your ds, what will he get out of a residential placement? my list for dd started with, more attention (as i was doing 24/7 for nearly 4yrs without respite, i was so tired) chance to get independant, help with making friends, and lots more. hth
Maria thank you for all that info. And Bakelite and everyone. The empathy is just what I need. I shudder to think of how I am going to do all this, Not wishing to sound self-pitying (don't do pity parties!), every single R-related thing seems to have been a colossal battle most of his life and this up and coming one feels like the biggest already.. I am strong I know I am but emotionally (privately) I am all over the place. I can cry at the drop of hat (I am not a cryer!) and am hiding this all the time. People close to me do not need the added stress of me falling apart. I am a past Mner, re-registered and coming on here to talk to you has been on my mind for months, as a coping technique! (You've got me through some scrapes in the past - unfaithful husband being but one!)
My relationship with DP is far from easy and part of the mental crossroads I am at involves wondering if I am better off alone. I have changed DP's life beyond imagining -his time and money is not his own. He has to support me and the kids financially (I don't earn a lot) meaning he is now hard pressed to support his own daughter through university. ExH is unable to pay more than a tiny token amount towards his children and although DP is not tight and knew what he was signing on for (at least he went into this, moved in, with his eyes open but I think its all turned out worse) he is enraged by ExH's inadequacies. Close friends say "Look, Jar, DP knew what he was getting into.. he's there... he loves you..". Yes he is here.. and yes I think he loves me.. but he moans constantly about the situation (who wouldn't I guess?) but I think there comes a time when you have to stop lamenting what you cannot change, etc and focus on the positives and what you can change.. DP's attittude makes it's very hard for me to do that.. I am constantly juggling his moods and feelings on top of the needs and challenges presented by R. (Or this this just what a co-habiting relationship is always!) The weight of all this is immense. I feel like I will break in half, emotionally sometimes, but I won't. I've done worse than this (ie when the the father of my children and I loved stupidly for a long time would not stay faithful.. nothing is as bad as that..)
DP is honest, faithful, hardworking and his practical help is invaluable. He is a power lifter and his stength when helping with R is a Godsend.. and for the most part, for this reason, R choses not to mess with him (or indeed DS1 when he is around). He knows that they, at least, are still stronger than him. which is very very helpful to me in the practical sense as you can imagine. But DP works away a lot and I have to manage alone a lot of the time. If I "set DP free" (Ha! I'll break into song in a minute! ) I'd be lonely, stressed and more exhausted. Maybe. Or maybe not. Maybe I ought to be not trying to hold a difficult relationship together, and concentrate on the battle at hand, a relationship which all the fun has gone out of because DP is tired and stressed and can't stop verbally reminding us all how R rules and ruins our lives. Maybe, in my misery, I would be actually quite a lot less stressed... ?!
I have veered onto a relationship issue I know but mostly its all connected, as our complicated lives always are and I am afraid you lovely SN lot are copping it because, as I say, I have had nowhere to discuss all this for the longest time. (ExH attributes MN to one of the causes of our marriage breakdown, ha ha ha, never mind the infidelity (his!) so I weaned myself off it some years ago.. but I am only using it now when DP is at work so it won't be a problem in THIS relationship. God knows we can do without anymore more..!!)
David's OH, thank your for that. Your DD sounds like she in a fab situation for her now,, well done you.. you are v brave.. Got to leave for work now.. be back later
Message withdrawn at poster's request.
The impact on our relationships with our DP's is massive. I find that when we are stressed with DS, we can often get stressed with each other, creating yet another layer of crap to deal with. Keeping a relationship afloat with everthing else going on is really difficult.
You don't sound like you've got breathing space to work anything out and you've been holiding it all in to the point of bursting. With more help for your DS, hopefully it will get better and there will be more opportunity to take stock of your life. You must be running on adrenalin just to survive. No wonder you are feeling overwhelmed.
I know you don't want a pity party but your posts have really moved me. You sound like a fantastic mum and whatever decision you make will be the best for ALL of you.
Haven't any advice re: residential just wanted to post
Thank you Bedheadz, that means a lot. And Bakelite yes you're so right. DP is not an easy person to live with (I'm not either I guess) and I suspect he wouldn't be even without the circumstances being what they are but that doesn't mean he isn't a good person and he tries very hard to do as much to help at home as possible. He just has a rather short fuse and not much patience. I want this to work it's just that by the time you get beyond 30odd I think most of us have so much baggage.. and then there's my extra heavy baggage (R!).. we are staggering under the weight of it all. Quality time for each other is almost too much to think about let alone find..
Maybe I need to try to get by until something better for R is sorted (however long that may be.. Justabout you are right.. I will probably be so relieved by the time we get any action that guilt will be long gone!).. and then see what our relationship is <really> like, because, actually.. God knows!
Am at work.. so must do some.. see how I'm getting sucked back in...
DS goes to a residential school for ASD. He is 12 and has just started his second year there, so I understand your concerns and doubts. It took about a year for DS to get his place, including going to a SEND tribunal, so it is a long fight and you will have time to think over the options - nothing will happen very quickly.
I think it's important to take charge of the process and identify a school that you think is right - it is easier to approach the LA with a particular school in mind than a general request for residential. There is a printed book by Gabbitas which lists most special schools (day and residential) and you can also search on Isbi. You can usually call/email for a prospectus and I'd encourage you to visit as many schools as you are able (which will be hard as it can take up the whole day with travelling time). But it is worth it because I found that each school I visited helped me refine what I needed for DS. There were schools that seemed right 'on paper' yet didn't feel right when I visited and spoke to the staff. His current school is one that I wasn't sure about at first, but it ended up being the right choice through a process of elimination (since almost all the other schools turned him down as too complex).
I'm not sure how your lack of ASD diagnosis will affect your case, but in any case it is probably a good idea to investigate the process of getting one. It can take time and I expect it will be complicated because of his other conditions.
The book that mariamagdalena mentions is this one and although it's now slightly out of date from a legal pov, it is definitely worth buying. I would recommend getting some kind of outside support to help you with your case - a solicitor is expensive, but an advocate is less so and there is support from charities although they are very busy. It becomes very stressful and time consuming with all the paperwork and meetings and it helps if you can get a professional/volunteer to take some of that burden.
justabout is right about the guilt dissipating once you finally get a placement. You have to argue your case so strongly that by the end of it, the conclusion is that it's the only possible option for your DS (because that is the only way the LA will fund it). And I was very, very grateful for the place because I know that he would have really suffered in any other placement. I don't feel guilty for him being there, but I do miss him terribly. Your home life will change and the nature of your relationship with your son will change. But he is happy there and is progressing, is less violent and engaged with the curriculum.
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