A
female
age
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*ittynora
writes: My severly disabled son has to go into residential care soon . We don't want this but he is very aggressive and they need to take him in to stabilise him because he is on too many medications and they think he will be better going to school and living all in the same place. His school transport and respite care all cannot cope with him and he is being aggressive to us. So hopefully this will calm him down and we can have him back home later on.I have so many questions.These are some of them ( I personally don't care of there are too many because this is my son and I do feel I have the right to ask)1) How does the program involve us as parents in his treatment and care? 2) Does the program have an “open door” visiting and phone contact policy? 3) We intend to have my son at home for weekends what strategies will you be teaching us at home in order to support my son? 4) Will the program teach us the strategies we need to help my son if he returns home permanently.5) Are there other family members I can talk to about their experience? 6) Is there a family advocate and how will they work with us? 7) Can funding be arranged for transportation or other expenses to aid visitation if necessary? ( If it is far away) 8) Will we as parents be contacted first in case of any problems and if not why not? 9) Can I do my sons washing at home, he has many clothes that have to washed on a special hand wash and not dried in a tumble dryer, so I will need to do his washing.10) I want my son to have his own bedclothes is this allowed? 11) How will we know that my son is making progress?12) What happens if we don’t agree on any aspect of my sons care? 13) What are your policies on seclusion and restraint? 14) How often is restraint used? Is the program engaged in a process to reduce the use of restraint and seclusion?15) What kind of training is provided to staff members who apply restraints?16) Is face-down restraint ever used? If it is do you have the necessary equipment to monitor breathing and SATs (Oxygen saturation rates)17) Will my son have his own private key-worker.18) How often will my son be reviewed?19) I will be sending my son in with some money to spend is this allowed?20) Is he allowed to have his own TV in his bedroom?21) Could I have a list of what I am allowed to bring in? I will bring replacement clothes in when I come to visit and collect his washing.22) I understand I will not be allowed to see my son for the first few weeks until he settles but I will still come to collect his washing and bring him replacement clothes.23) Can my son visit a couple of times before he comes to stay there?24) Will my son have a school uniform and can you send me details of where I Can buy this so I can get them ready and labelled up.25) Can he bring some of his own toys?These are some of my questions so far. Can any of your try to put yourselves on my position and think if it was you is there any more questions YOU would ask. My son is 14 years old. I want to cover all aspect's because my son is not just going to be sent anywhere.I want to find out as much as I can, I am going to have to put my trust in these people, and its scary. So bring the questions on I don't care of its 25 questions or 125 I will ask them. Please no judgmental answers I don't need to be judged right now. Thanks for your answers in advance.
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female
reader, aunt honesty  +, writes (3 January 2017):
 Nobody in the residential care wants to be his mother. They will care for him the best that they can. I totally understand why you are finding it hard to let go, he is all you have known the last 14 years and it is hard for any parent to let go off their child. You need to realize you have not failed, this is not your fault and you are not to blame. He will be at the best hands am sure. Make sure you have a good look around the place, meet the staff that will be caring for him and ask them to keep in close contact with you. I am sure they will know from experience that you will be suffering with anxiety and will help put your mind at ease.
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female
reader, Nittynora +, writes (1 January 2017):
Nittynora is verified as being by the original poster of the question Female reader anonoymous thankyou so much for your lovely message. It really does mean a lot to me. Sorry I haven't done the ffedback earlier I have had a heavy cold. I will tell you about my son so you can have an understanding of him. He is 14, he is unable to speak so cannot communicate even by sign language. he can hear. He can walk but sometimes he is in a wheelchair for his own safety. He has a mental age of one. So I cant explain where he is going, but he will know he is somewhere different. he hates strange places, they tell me I cannot see him at all for the first few weeks until he has settled in. I have mad a life story book with photos in to remind him and THEM that he still has a home and parents and family I WILL put it in the room whether they like it or not and I want them to show him photos so he wont forget us.My own father was disabled nothing to do with what my son has, my son is autistic. I am so used to being around disability it does not bother me as a child I looked after my father, washing him dressing him etc. I am also a nurse and have been for 32 years, I am general and mental health trained and have a degree in mental health. studied whilst looking after my son and working full time. However I am not very good at solving my own problems. It des not matter what experience you have you stop being a nurse and become a mother. You see things differently and you cannot see clearly. I have no experience with children in children's homes so I have no knowledge on this. My husband gave up his job as a nurse so he could be at home for our son, ( he had the harder job in a nursing home) my husband can no longer cope he has been feeling suicidal. So I have to think of his health as well. My sons school respite and transport all say they cannot cope with him. They say that he must go to a place where he can be schooled and live in the same place. They have no compliants about our care I know I have to let him go and I would be a very selfish mother if I don't, because it is in his best interests. I am just sad that he will no longer be at home and angry that someone will be trying to ( or it will seem to me that they are trying to replace me being a mother) I am scared he will forget us. I don't know where he is to be placed yet so maybe I will feel better when I do and I can actually see the place. With regards to the Physical restraint I will keep a close eye on, it may be different for children. In mental health we do have to closely monitor people physically whilst restrained etc. I am just bieng defensive at the moment because my role is being taken off me. I do feel as though I have failed. It was very unusual for me with regards the woman in the fish shop but she was shouting and jumping up and down pointing to her jumper sayings its cashmere its cashmere, so I had just had enough. especially after I had written down and offered her my address and said that I would replace the jumper. The £20 I offered was for her to take it to the dry cleaners and then if that did not work to write to me. Thankyou anonymous for your lovely note again and your understanding it has really helped xxxxx
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female
reader, anonymous, writes (30 December 2016): hello nitty nora in the absence of any feedback its very difficult to know if we've been any help at all, but I realise that youve been mentioning your son for a while and this is something that has been looming up on you largely because you feel the lad is growing up and physically getting stronger but has only a mental age of one.Not knowing the boy or yourself I cant even fathom if he is in a wheel chair but I know you mentioned that he should have two adults with him at one time and he is required to take a lot of medicines.He does occassional naughty things like throwing sauce or squirting sauce from a bottle that lands on someone elses jumper that happened to be expensive and she refused your monetary compensation probably because it cost more than your meal and hers and also she saw that you had your hands full and you are only human.You have a sharp wit and wicked sense of humour by the way because in all other circumstances your remark was appropriately amusing , being in a fish bar.You are caught between a rock and a hard place.You have made a fantastic effort to lokk after your boy and lifes little hiccups are seeming quite overwhelming but you have the wit, the intelligence and the tenacity to get through most trials alright!You deserve a row of medals and trophies for the effort you have put in over the last fourteen yrs!You have accepted defeats and victories and fought on with love in your heart and pride for your son.You probably will acieve a great deal more.You are chosen to deal with these problems because of your capacity and your strength of will has meant you are capable of fighting like a tiger to protect your cub.You must be getting tired now.It must be difficult to find the manpower to assist your son and it must be getting foggy for you to see his future clearly.You probably could do with a bit of a rest and reassessment.It might be in your best interests to let the lad go into residential care where he can receive daily attention but you must be clear that you do not agree with physical restraint.Your son is not a criminal and has committed no crime so you need to make clear to his social worker that you do not expect marks and bruises on his body or tears on the phone.You expect him to be happily occupied in some age and ability appropriate activity for education and relaxation.You expect a happy lad at weekends.You need to talk with your boy as much as his understanding allows and you have to trust that his social worker spent years studying and working towards helping children and adults with disabilities and families and carers related to the client need to be very well informed of expectations and outcomes.You will probably feel lost at first but then you may understand that it is time to let your wider support system operate in your favour.You need to research your sons residential placement and familiarise yourself with everyone from the governors to the daily staff.You may prove a blessing as a proactive parent and you may champion the cause of severly disabled individuals for years to come but above all you have to remember that you have not failed your boy, you have just arrived at another bridge that you will cross over,hopeful to re-assess his capabilities and how to give him the best possible quality of life that you can in the immediate short term and for the future.
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reader, anonymous, writes (29 December 2016): I think your confidence has dropped a little and you feel youve failed because your son has been aggressive and you are fearing the label 'unmanageable!'You know your son better than most and he knows how to tug on your heart strings.To a certain extent it seems you feel the decision is taken out of your hands, but thats not so.Currently you still maintain parental rights.Perhaps you wanted your son to live at home with you permanently and you feel residential is a sort of punishment because he is unmanageable.However many teenagers go through difficult times and you have every right to insist you visit the place before you give your consentIf you feel you are being pushed around a bit then your solicitor would be a good port of call.You shouldn't have problems having your son home.He is part of your family and has a right to come home at weekends.He should be happy to want to do so.The problem starts when a prestige outing is taking place and going home means missing the outing but going home is also a prestigious thing to do once in the care system!Having an interested mum or dad is also a bonus.Some parents abandon their kids to the care system and that is sad as the youngster waits expectantly for a visit or trip home and the parents forget to turn up!Its quite hard to cheer a youngster up if they are disappointed over a missed outing with mum and dad.Your worries about restraint and would they monitor his breathing are dreadful.There should be no need for hands on restraint!Talking and building relationships are usually how behaviour is managed.If you think your son is going off the map to a place where they will throw him down on the floor with his hand behind his back then withdraw your consent.Tell them you will find a better way come hell or high water and stick to it.
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reader, anonymous, writes (28 December 2016): I can see that your listed questions are not directed here to us because you intend use these questions as means to inquire about your son's prospective care home. Aunty BimBim and Andie's Thoughts directly answered you so far, and I will try to help too.Generally I think your questions are adequate to satisfy your concerns. Though, you do have a clear dependency to have the care home educate you on how you can adapt yourself better to your son's needs and behaviour. It may be better for you to tell them why because these concerns are rather vague and the issues involved can be very complex.So have a think about these questions and try to be a bit more specific on what you are weak at so that you get the best support for both yourself and your son:3) We intend to have my son at home for weekends what strategies will you be teaching us at home in order to support my son? 4) Will the program teach us the strategies we need to help my son if he returns home permanently.6) Is there a family advocate and how will they work with us? 11) How will we know that my son is making progress?It may be a good idea to be in contact with organisations and charities who can provide some general advice and support which is independent from your local social social services.Your local Healthwatch might also be able to help. You can also try Citizens Advice and your local community law centre for additional information on local services that may be useful.I wish you and your family all the best.(Everything that is meant to happen, will happen, eventually.)
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reader, Slippers +, writes (27 December 2016):
Do you have a named social worker ?
This should be your first port of call.. you should also have a residential plan or care plan that covers all these q's . If not ask for one ..
Are you still the legal guardians of your son .. as only if soctal work stepped in and took over this role would this information be withheld from yourself . So if not then you must seek outside advice maybe even legal if they do not comply
As a parent of an Autistic son who has over the years been in situation that could have lead to residential care . Believe me I know your blight .. lucky for us I am mental health myself but also had good workers who were invaluable to his care and what about a psychiatrist or educational psychologist .. as they both will write reports and offer support to you and your family
But if you don't have residential care plan in place you need to get that done ASAP .
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reader, anonymous, writes (27 December 2016): If you are certain that you dont want your son engaged in the residential care system and feel you still have the commitment and stamina and resources then you must contact social services and withdraw your consent for the transfer.Its always handy to have legal backup for this so you would need to enlist the services of a family lawyer or solicitor who specialised in the laW relating to children and young people.You will have to accept that your sonhas a behavioural problem which isnt unusual in teenage years.It may stem from his expectations of what he wants to do versus what he is required to do but again this is not unusual or unsolvable.So for example if he doesnt like a staff member strapping him in a bus he must be allowed to say it and also to strap himself in if that is what he is capable of.Or to be encouraged to learn how to do it.Or to be allowed to sit next to the person he likes or to be allowed to understand why that cant happen on that trip etc.As he gets older he will like girls but not jn the same capacity as other 14yrolds but he may want to sit next to a special someone but an adult prevents it and thereby frustrates him because he cant express why or understand why not etc.However you could ask for more help with his behavioural issues.Many youngster are happier if they have a sticker based reward system. They understand what is required of them. And it is easier to communicate.eg adult asks, holding sticker: did the bus get off on time?Child answers "No, I was fighting with Kevin and threw his lunchbox over the fence and it took a long time to get it back because the gate was locked!"Adult "Well I cant give you a sticker for that! If the bus gets off on time tomorow and no fighting then you will get this fantastic football sticker/gold star/smileyface.This is worth a try!
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reader, anonymous, writes (27 December 2016): hello nittynora it is clear that you are feeling anxious and conflicted about allowing your son to go into residential care.You are battling it out with yourself: the goods versus the bads and the rights versus the wrongs.You have a big list that quite clearly states "But I'm his mum right?"Ofcourse you are his mum and you always will be.Who washes his clothes and irons them is immaterial to your status as you will always be irriplaceable and with time you will be able to settle into your new role in his life with dignity and aplomb.You might as well see it as a move to semi independant living as no doubt he will view it as such.Perhaps he will learn to gather his clothes off the floor and put the whole lot in the wash together so lots of coloured clothes that will run together without ruining the look too much.Anything that is a bit too big is good as it will be ruthlessly tumble dried and you need a lot of shrinkage factored in.Dont let your lad know your conflicting emotions.Try to be positive about his new life.Let him know you wont be there to nag him because he's grown up now.Pick out posters for his walls and arm him with blutack.Make it things he likes such as favourite football team.I hope he has very favourite team as it will bring hours of mindless happiness and male bonding and encourage him to cheer loudly.Any sport where loud cheering is required is good.Also pick out a family photo and put it in an unbreakable plastic frame.Open a bank account for him and put about £5 a week in so he can start saving for when he gets a flat or goes on outings with the group and needs spends.Tell him he can order pizza when he is 18 yrs old and give him all the bank paraphernalia, stickers etc but let the staff keep the card in the office for safekeeping for now.I assume he has a mobile phone already but if not get him the cheapest you can and set it up with your numbers and cover it in stickers so it is easily recognisable. Show him how the camera icon takes picture and take one of him alone or with family and make it his screen setting.Try to see the move as an early transition to college and be thankful that your boy will not endanger anyone in a burst of frustration because life should become happily routine with plenty of attention to his needs.Your new role is that of an ambassador of much loved outings and treats. Cinema trips, burger bars,parks,anything like that which is short and sweet and non combative.Hugs given freely and stickers and keeping up with favourite teams scores on a weekend.And then you see if he gets through teenage and becomes a little man without too much angst.But above all you phone him on time and turn up for prearranged visits.Also make sure he gets to visit you at home for xmas and maybe other special times.As he calms down plan a holiday for him like disney world.See if he likes fishing with his dad or growing veg in an allotment or a box.It will be a new life and you can all step forward hoping eagerly that it will be enriching and get a video camera for memories of outings and let him record you smiling and waving or having a picnic or standing in the rain like a drowned rat.You are still an essential part of your sons life and you can play an integrated and active part that is not as a domestic.And name tags on everything even sox and pants because they will inevitably get muddled up with someone elses and good luck!
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reader, CindyCares  +, writes (27 December 2016):
 I wonder too why you are not asking your questions, 25 or 50 or.. all the questions you want answered , directly to the managers/administrators of the facility in which your son would be accepted. Nobody better than them can be knowledgeable and accurate in describing their policies and regulations, and in dispelling your doubts.
This, assuming we aren't talking about an "involuntary committment", or psychiatric hold, or whatever it is the name in English, I mean a forced hospitalization in some institution, mandated by a Court to make sure that the patient does not do irreparable damage to himself or his carers.
But , as long as sending him away is still your choice ( although, I am sure, a heartbreaking, reluctant choice ) - after all it is like if you were parents shopping for a good boarding school for their kid. If you are convinced about the effectiveness, safety and usefulness of what they can offer him , and through which methods , he goes. Otherwise- he does not.
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reader, little lollypop +, writes (27 December 2016):
Hello nittynora, I agree with aunty bimbin, best you direct these questions to the care company who will be looking after your son. I work with Scottish autism. I could answer all your question in relation to my service users but every company is different.In relation to your to your questions on restraints, british care companies that deal with challenging behaviors should have staff CALMS and ESCAPE trained. Which is certain techniques and different restraining techniques,none of which should involve the service user being harmed, face down or breathing compromised in any way. Calms and escape training could possibly help you and your family to cope better with your sons aggression.If the company cant answer your questions or find it a chore to do so then id suggest finding another company.Hope iv helped, good luck ??
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reader, Andie's Thoughts +, writes (27 December 2016):
 I'm glad you'll be getting the help you need. Having lots of questions is understandable. These cover all your bases, in my opinion, so I'd print them out (like Aunty BimBim said) and give them to the relevant people, so they can help you get the right information.
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reader, RubyBirtle +, writes (27 December 2016):
It's not really going to be possible for us to answer all your questions as it will depend very much on the facility your son is admitted to. So take Aunty BimBim's excellent advice and use the list you've started here to put to your son's social worker and the staff at the residential home.
Do you know which facility he is expected to attend or are social services waiting for a bed to come up. If you know, many places have websites so you can look them up online which might answer some of your questions. Or look at the NHS choices website which rates many of these places and publishes customer feedback. You can also check to see if they have been rated by the Quality Care Commission.
But - your son should definitely be given some form of key-worker and you should be invited to case-conferences at regular periods during your son's stay where you should have the opportunity to meet all the team who are caring for him. (How regular will depend on the facility)
If you disagree with your son's care, you should have the opportunity to discuss at case conference and the facility will have a complaints procedure to follow (but be prepared to compromise)
Regarding restraint - every facility should have a policy so ask to see it.
In any emergency or untoward event, you should always be kept informed. Again, there should be a policy governing this so you can ask to see it.
Most places won't have an "open door" visiting and telephoning policy. School hours will always be out-of-bounds and in some places they have set times for meals, homework and therapy which can't be disturbed. There is usually dedicated time in the evenings to make and receive calls. In some places telephone-time is issued on reward basis (although telephone time with parents is usually still permitted).
Likewise television time might be allowed on a reward basis but most kids have both a TV and DVD player in their rooms as standard. (They will lose TV time by being given another activity to do instead.)
He'll probably be able to bring his favourite toys but there will probably be a limit to how much he can bring as storage space might be tight.
There will probably be a limit to how much pocket money he is allowed to receive each week (as having unlimited amounts is often very unfair to those children whose parents can't be so generous.) And once again some places use pocket money as an incentive or reward - there would be a certain amount that he will be guaranteed to receive each day/week and the remainder is given if the child engages in chores and activities appropriately.
Bringing his own sheets shouldn't be a problem and doing his laundry will probably be okay too (provided your son doesn't have continence issues as they can't store soiled clothes or sheets for days on end)
As for transport costs to cover the costs of visiting - that's a question for the social worker or the CAB. There are some benefits that are payable but they are means tested and you would have to prove that you are on a low income to qualify for them.
I hope this helps some. Good luck
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reader, Aunty BimBim  +, writes (27 December 2016):
 Nittynora, the best people to put your questions to are the people who are looking after your son, print off a few copies and hand them out to everybody, your social worker, the person in charge at the residential centre, and let them know you would like the answers before you make any final decisions.
Good luck!
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