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lorryw

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The long awaited "day service" for my son has been a miserable failure. He decided he wasnt going a couple of weeks ago by having an outburst in which he ran around screaming and banging his head on the wall, he also tried to headbut and scratch me such was his distress.

The escort (and service worker) from the new service rang me from outside our home (he heard the screaming) and reminded me that our lad could only travel in the taxi if he was completely calm, I said abandon the session and he got in the taxi and drove off. I half thought he might send for extra help to work with us and calm my son down. No one even rang to check we were both safe. There is no way he will willingly return (he has stopped having baths because that was part of the day service routine) and we are all at home once again.

Social Services have come up with a residential placement which we have to decide upon within the next 2 weeks. He had respite there a couple of months ago and seemed to enjoy it. We really dont know what to do for te best. We hadnt really given any thought to residential apart from something vague in the future, now its staring us in the face. Our friends and family are shocked and say the decision is ours and cant give us any advice to help us either way.

We love him very much and the thought of him living with strangers tears us to bits. We had thought about him living in a flat with carers but that would be a lonely existence for him.

All we want is for him to be happy and enjoy his life but making the right desicion is so so difficult.

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>:D<<'> >:D<<'> Lorry.

 

I cannot offer any advice as I have no idea what I would do in your situation but want you to know I am thinking of you all.

Karen.

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When we had a crisis in the Summer Holidays no one got back to me either, I felt really alone, it is unbelievable that services out there know there is in incident and they dont ring back to check things are resolved or if your oright and anything can happen, it feels like they just dont care or are not bothered, all it takes is a phone call or a visit to your home its clear they just cant cope with families with such needs, I was going to complain but Ive decided to request a full assessment of our needs again to access a respite in a specialist residential placements for the half term because it has got to a stage where we are both unsafe from the outbursts of violent aggression.

 

At the end of the day you have to think of the long term safety and if your left to cope alone with really difficult moments were you or your son are at risk of harm then you have to look for further support.

 

Is there no support within your own home, we use to have carers calling a few hours a day but sadly that service is no longer available to anyone as it no longer operates, not sure what the consequences have ment maybe others have resorted to residential care or they do it alone, which is isolating.

 

It really is a difficult situation but if he is happy there for respite and he is familiar with the routines there then it may be a consideration, or increase the respite and ensure that more support at home is available.

 

You could request a full reassessment of his needs to look at all the provisions and services he may require so he can benefit from both your home and the residential placement and other services available.

 

Contact a family have booklets that explain the process further.

 

Good Luck

 

JsMum

 

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Hi Lorry -

 

Making a decision about something as huge as residential care is really heartbreaking for parents. Impossible advice, I know, but go easy on yourself...

While the transition may feel like an ending it's often - for parents and the person needing support - the begining of something that can enrich all of their lives.

Your son's support needs sound very complex, and it's completely understandable that in the home environment with just immediate family on hand you would struggle to deliver that support. In residential accommodation that support will be on hand 24/7, and will be delivered by trained staff who are not worn to a frazzle by years and years of 24/7 'shifts' and who have a degree of emotional detatchment that it's impossible for parents to create for themselves.

In all likelihood there will be increased social opportunities - either within the residential community itself or though organised and staffed/supported events and excursions - and a level of consolidated independence training that, again, you would have been really challenged to deliver at home.

Looking at all of the positives about living at home - there's no reason why those things can't continue and actually become better. Weekends at home will undoubtedly become opportunities for quality time, rather than being filled by the everyday necessities that take over the lives of the 24/7 carer and cared. You will all have the 'space' to grow and develop relationships that work on a different level; one that is far more 'natural' to the rhythms of parent and child.

That will be really, really hard for a while, and you will feel a level of quite misguided guilt while you go through that process, but you will come through the other side of that. It's also going to be hard to adjust to the changes in your life, and all that time opening up will at first seem scary and disorientating. There'll be a bit of a 'crash', I guess, but that will get better in time too.

Finally, you'll have one piece of long term security that all parents want: you'll get the chance to see your son settled and happy in a new home where his needs are met and supported appropriately, and you'll see that transition achieved in a staged and planned way rather than thrust upon him at a time of crisis. It may not be what you had hoped, in terms of independence etc, but if it is what he needs then it will be a comfort to know that he's got it, and in the meantime you can be as big a part of his life as you can be, without all the negatives of of trying to deliver a level of care that you 9or anyone else) would find challenging.

 

Very, Very best. >:D<<'>

 

On a purely practical level: spend as much time as you can finding out about the placement: what's on offer, what they can and can't deliver and how they are going to deliver it and cross as many i's and dot as many t's as you can. The more comfortable you feel about the new environment, the more comfortable you will feel about relaxing the reins a little.

 

L&P

 

BD

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Lorry, this is what we all dread isnt it...... we just muddle through day by day putting it off as long as we can, why are your friends shocked, they should be shocked at how much you have had to put up with and the fact you have no support, thats shocking. It nearly happened to mine last year at 12, after a years relative calmness we are in crisis again, so I have some idea how you feel. Could you just look on it like an older child living away from home? My 20 yr old does, he comes for his dinner on Sunday, and brings his washing Tuesdays, he is an hour late, hence me on the computor at this time! he has no problems, just shares a flat with his friends, but I was still gutted when he went, although I have got used it it now. You could just see it as him living away at college etc and still have daily contact and see him weekends/hols etc You will know when the time is right am sending you much love and support.keep strong. x Enid

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Don't think of this as 'your' failure. I totally agree with BD.

If he has been there before and was happy, then it might be the start of something really positive for him and also really positive for you. I presume there will be home visits etc. As parents we are all looking towards our children becoming 'independent' of us, but with our children the future is so much harder to plan and consider.

And remember that nothing is written in stone and unchangeable.

I have a sister that eventually became independent and my parents found it very hard. But they found it easier when they thought of it as 'on-going' work ie. her job and flat were not 'the end' but an on-going work. And we still don't know what will happen when she retires etc as being at home on her own all day is not an option. But that is something we will work on when it arrives.

But it is very hard to come to terms with because the child has relied on you all these years and you will feel the separation very keenly. But this could give you opportunities you've never had. I presume you could visit him as well. In the long term it is easier for him to deal with separation from parents in this way. The alternative is that he stays at home until the day you die, and that would leave him in a very difficult position with nothing in place.

However, all the above is the 'sense' you make of it all in your head and not at all how you feel. So lots of >:D<<'>

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Hi Lorry -

 

Making a decision about something as huge as residential care is really heartbreaking for parents. Impossible advice, I know, but go easy on yourself...

While the transition may feel like an ending it's often - for parents and the person needing support - the begining of something that can enrich all of their lives.

Your son's support needs sound very complex, and it's completely understandable that in the home environment with just immediate family on hand you would struggle to deliver that support. In residential accommodation that support will be on hand 24/7, and will be delivered by trained staff who are not worn to a frazzle by years and years of 24/7 'shifts' and who have a degree of emotional detatchment that it's impossible for parents to create for themselves.

In all likelihood there will be increased social opportunities - either within the residential community itself or though organised and staffed/supported events and excursions - and a level of consolidated independence training that, again, you would have been really challenged to deliver at home.

Looking at all of the positives about living at home - there's no reason why those things can't continue and actually become better. Weekends at home will undoubtedly become opportunities for quality time, rather than being filled by the everyday necessities that take over the lives of the 24/7 carer and cared. You will all have the 'space' to grow and develop relationships that work on a different level; one that is far more 'natural' to the rhythms of parent and child.

That will be really, really hard for a while, and you will feel a level of quite misguided guilt while you go through that process, but you will come through the other side of that. It's also going to be hard to adjust to the changes in your life, and all that time opening up will at first seem scary and disorientating. There'll be a bit of a 'crash', I guess, but that will get better in time too.

Finally, you'll have one piece of long term security that all parents want: you'll get the chance to see your son settled and happy in a new home where his needs are met and supported appropriately, and you'll see that transition achieved in a staged and planned way rather than thrust upon him at a time of crisis. It may not be what you had hoped, in terms of independence etc, but if it is what he needs then it will be a comfort to know that he's got it, and in the meantime you can be as big a part of his life as you can be, without all the negatives of of trying to deliver a level of care that you 9or anyone else) would find challenging.

 

Very, Very best. >:D<<'>

 

On a purely practical level: spend as much time as you can finding out about the placement: what's on offer, what they can and can't deliver and how they are going to deliver it and cross as many i's and dot as many t's as you can. The more comfortable you feel about the new environment, the more comfortable you will feel about relaxing the reins a little.

 

L&P

 

BD

Hi Baddad,

Thank you so much for your post. You have made me think in a totally different way about our situation and the possible outcome.

 

thank you

 

Loraine xx

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Hi Lorry, we are in a very similar situation to you . I think the best way to approach it is to think 'nothing has to be for ever ' you can always change your mind and pull him out if you become unhappy with the placement. Staff change, management changes and what you may be happy with today you may not be next year. I never think more than six months ahead. Can you build it up gradually ? Does it have to be a full time residential placement? Could it not be a part time one , so you have one week on one week off say ? My son has started going to respite in a residential house with eight residents every second weekend . It started off one weekend a month for three years now it has increased to slowly get him used to spending more tiime away from me. Social services and the residential place have to have a degree of flexibility and in my experience it is often about how much money they can get for each person, so they will try saying its full time or nothing ! Good luck and keep us informed, x

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Just wanted you to know that I feel for you and I too agree with everything that has been said to you thus far and seeing it as a new begining is by far the best way forward for you all >:D<<'>

 

Cat

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I often feel some sort of semi-residential option would help my son gain skills he is not attempting to gain anywhere else. I am looking to the future, his. I am equally sure WE will suffer more than he does if the option presents itself. Autistics seem OK so long as the routines suit them, they will go anywhere, it can appear cold to parents I know. There is actually a residential option within 3 miles of me, I looked at it, and there was no way I would send my son there, the care didn't look too good and there was not much attempt to improve the skill base of the autistics there, it was containment, the noise and physicality of it, frightened the hell out of me I know my son would be terrified by it. Prisoners in Jail get better support. Our children need alternatives to us, we may not always be in a position to provide what is needed. It is also very urgent the systems are in place long before they are adult too, and transitional options are made aware to them and they are eased in to it, or its a nightmare and can fail. It will also make parents feel failures. We will then continue till we drop...

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Hi Lorry,

 

I know you fought long hard for the service you got, so it must be depressing to acknowledge that it has failed and you are now back to square one. As others have said, a move to residential could be a very positive thing, but it's a major change for you and will need a lot of adjusting to.

 

Thinking of you as you weigh everything up and decide the way forward. >:D<<'> >:D<<'>

 

K x

 

 

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I can only echo all the support and good wishes already shared, and I think BD has very eloquently described the opportunities for your son and the emotional journey for yourselves.

 

Very, very best and do try and be gentle with yourself, you are a wonderful parent >:D<<'>

 

Bid >:D<<'>

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Hi, I cant imagine what you must be going through and obviously am not in any sort of position to offer advice, but just didnt want to read and run so to speak.

You seem like wonderful parents and I am sure that whatever decision you make will be the right one for you all.

I truly will be thinking of you >:D<<'> >:D<<'> >:D<<'>

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>:D<<'> >:D<<'> >:D<<'> >:D<<'>

 

 

 

I just wanted you to know id read youre post and utterly empathise.Itsn a decision i hope i never have to make but one im sure in the future im going to have to.My son is at times realy difficult to handle and hes so large and strong ............at times life is hell for all of us.Its only recently ive faced up to the reality that as i get older........im 40 im might not be able to cope and residential might be the only option.I cried buckets at the thought of it.

 

 

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I don't know how old your son is, or what his needs are.

I will tell you about the residential home where I work as a night support worker.

It is small, 7 beds, provides 1 to 1 care from 7am to 10 pm, with 2 staff on at night.

There is a wide rang of care needs among the residents including Autism, ages ranging from teenagers to mid 40s.

At the present time one resident attends collage and is accompanied by their carer.

All resident are free to take part in local activities, One some time goes to the local pub accompanied by their carer.

They are all given the opportunity to do planned activities, go shopping for their own cloths, trips out, buy sweets in the local shop if that what they want, are taken on a weeks Holiday each year, accompanied by their key worker and other staff, some times with other residents sometimes on their own, this once again depends on their needs and wishes.

And visitors are free to come as often as they like, some of the resident have regular weekend home visits.

I think it would be far to say that the resident see it as their home and every one their, other residents and staff as an extended family.

 

Some of the resident are funded privately some by local authorities.

Edited by chris54

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My own sister, who has learning difficulties, a speech disorder and possibly on the spectrum now has a better social life than I do. Everyone in the village knows her. She goes to the local cafe with her friends. The shopkeepers know her. I'm not saying it has been trouble free. But she has learnt all these skills and that was when she was in her late 40's - so never say never. And she is happier in her own home. If she had to move in with her parents again I think she would resist it strongly. But now she is in her mid 50's we don't know what her health will be like. She does have some existing health problems, so things could all change again.

But for now she is happy. She can watch whatever she wants on TV and eat what she wants (within reason!!). She has carers going to see her and family check on her. She is taken to social clubs and visits extended family. She has a couple of good friends in the village that she goes to the cafe with for lunch. Yes, she's a lady that does lunch. I don't do that!

She lives on the same road as me. All of this we never thought possible when she was living at home with my mum and dad and they did everything and my sister kept to their routines and way of doing things. And life at home was very stressful because she was defiant and wanted to do things her way, but we were very unsure about her life skills. Those were gradually taught and the level of care reduced as she took over certain jobs. She is never going to be up to the standard (from a housekeeping point of view) of my mum. But she does enough often enough to keep it reasonable. And like so many things in life, you never know until you try it.

Does your son know about the residential option? And if so, what has been his response to it?

At first my sister did not want to leave home as she was getting very anxious and stressed about it all. But we all agreed it would be best to move in gradually eg. day visits to her house to learn certain skills. Then a sleep over, which would gradually be extended.

 

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Lorry >:D<<'> >:D<<'>

 

My thoughts are with you. I have answered by PM.

 

For once I totally agree with baddad :o:lol:

 

Nellie xx

 

 

Me too, Nells!! :D

I can't add anything to Badders' sound and sage advice, but my heart goes out to your family.

Keep your chin up, >:D<<'>

 

Esther x

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