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Where will your child live in the future?
Topic Started: May 16 2006, 02:42 PM (313 Views)
:acorns47
Bestest friend
I am going to broach a delicate subject here, I know, but I was wondering what you folks thought about where our kids go when they are all grown u, or in the event of you being unable to care for them? IE: are you planning for them to stay at home, or fly the nest, or to live in sheltered housing, or with other relatives? It's a rather emotive issue which doesn't get discussed much. I have mixed feelings, and at the moment can't see Jenny living any where except with us. However, I'm 45, John is 41, and Jen has already lost her natural mum. One of the first things we did when we got together was to write our wills, largely to secure the future of our combined children, and Jenny's in particular. As we don't get on with the rest of her maternal family (their issue, not ours) we didnt want Jen being carted off to far flung places to live with them if the worst happened to us. So with that in mind, we have organised for Johns sister, whom Jen adores, to come and live in our home. Our home would effectively become hers for life, because we felt that Jen needs to have a base for life. Now Jenny is 12, and we have been trying to teach her some life skills, like personal hygiene, making a sandwich and a hot drink etc. Although Jen has risen to the challenge, it is a continual process which I cannot see will reach any satisfactory conclusion, because her learning and communication problems are so great. Only the other day when she was boiling the kettle to make dad a drink, I caught her resting her head on the top of the kettle whilst it was coming up to the boil!!!! However, even given the severe limit of her abilities, and the fact that she will always need to be 'looked after', part of me thinks it would be to Jen's advantage to evenutally go and live somewhere else when she is perhaps 25. Even just writing these thoughts down, I feel an over riding sense of guilt. My reasons for wanting this are mixed. Firstly, if I am honest, it makes me very sad to think that John and I will spend our whole lives caring for Jenny, and will never have time to our selves. In addition, I have seen what can happen when a special needs child grows up and stays with their parents, who then grow old. One of them dies, rendering the other one unable to cope. The special needs adult then suddenly has to go and live in a home, and is completely unprepared for life outside his/her home. This is what in fact happened to the daughter of a patient of mine, and it was what prompted me to think about what kind of future I wanted for Jenny. I want Jen to be able to make choices....they may only be simple choices like which outfit to wear, or what film to watch, but these are all choices which we as individuals take for granted. I want Jen to experience a full and happy life, to have friendships (which she currently doesnt have outside school) and to reach her maximum potential. I also want her to stay safe......she is sooo vunerable, to not be taken advantage of or led astray, to be able to communicate with people and not feel prejudice or verbal attack. In short, it worries me, the whole prospect that she may develop enough skills for the authorities to say she can make life choices, but in reality will remain vunerable and at risk. Its a huge dilemma.
Aaaaaaaaaaaaaaaaargh!
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Lisablue
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A special friend
Gosh...your not wrong there, it is a huge dilemma!

I can see your concerns...especially since you have a girl...I have worries also, but mine are different as I have a boy.
I worry that he will end up taking drugs, or going to prison because he will do ANYTHING to fit in and hasnt the sense to even cover his tracks as he dosent think of later...he only thinks now! I worry about if he gets a partner and how it will be hard for her to understand his ways and that she will have an awful lot of issues to deal with as part of the package! I wonder how I'm going to cope with him as he gets bigger (his dad's 6ft 4 and he's heading the same way) and if I die...well I hope my husband will cope and if we both die....ohh gawd knows!

Because of all these worries I try not to look past this month to be fair. If you think about it 10 years is a long way off and what I fear may happen may be far from reality!

Your right though....it's definatley something we need to think about...scarey though eh! :hug:

Lisa blue x x x
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Tinker
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I worry about this constantly.... D will be 18 in October and I worry what will happen to him as despite the fact he is high functioning he isnt a normal teenager (sorry if that sounds harsh) and I do worry about what will happen to him in the future too.
Im like you though Lisa take one day at a time, one week at a time etc...but oh my isnt it a worry :unsure:
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:Testarossa
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Testarossa
Funny you should raise this now as I was thinking about this when I realised it would have been Ann's birthday. I wonder how her boys are coping.

It tears me up inside when I think about James' future. My brother is 25 and still at home. He couldn't care for himself if something happened to mum and dad, and he'd have to come to us. He wouldn't cope at our house with the children, so we are looking at building a granny flat above the garage when we eventually get around to building our new house.

I'm lucky in that James is high functioning with his autism, and I'm told he is capable of learning life skills which I agree with. What scares me is his aggression, impulsivity and hyperactivity. I can see him getting in trouble with the law when he lands someone a smack in the face for having a go at him.

I worry that my kids wouldn't cope without me, but maybe we don't give them enough credit. Amy is very sensitive, and it would take a long time to get over losing a parent. She still cries over MY grandfather, and he died 4 years ago.

Most of the time, I put all my worries to the back of my mind. Although my parents currently have guardianship if anything happens to us, I don't think my mum would cope. She's constantly asking me to work less so she doesn't have to have him. I'd put him in an after school club, but he'd only get excluded.

I feel even worse now I've written it all down. Guess that's why I try not to think about it.

I think that James will grow up, get married and leave home, but how we get there, and whether his relationships are successful, who knows?
If you stay ready, you won't need to get ready!
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:Druss
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well i was going to write this really long reply but i really cant face this question at all i know i should but i cant :unsure:
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:acorns47
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Sorry guys if I stirred up a hornets nest. Its tough, isn't it? :hug:
Aaaaaaaaaaaaaaaaargh!
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caldcot01
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i know i should think about this but i havent fully even though i have been told by the school and gp that darren isnt going to be able to live independently i cant face thinking about who would look after darren kels or nico with there probs i know anyone would look after luke as he has no problems but i dont want them split if still children and adult hood well im just guna take aday aweek amonth at a time and deceide as and when i need to or something comes up that gives me the answer very tough question for alot of people i think
take care
sarah xx
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Tinker
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jokim
May 16 2006, 06:26 PM
Sorry guys if I stirred up a hornets nest. Its tough, isn't it? :hug:

Aww hun dont be so daft its something we all have to face at some point and I think its a good subject to discuss xx
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:acorns47
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No one wants to think about their own mortality, or the future welfare dilemmas of their kids, let alone their special needs kids, but I think it helps me to think about the future, and know that if the worst should happen, possibly unexpectedly, then at least we have prepared Jen for some kind of life without her mum and dad, and put in place guardianship and financial security as best we can. Its what we try to do for all our kids isn't it, but with our special children the need to do this is greater still. I know in my heart that with all her problems, Jen is always going to need looking after, and with a substantial amount of help and support. However, by trying, as we have been for the past 2 years or so, to build in the necessary life skills, at least she will be as equipped as she can be for life away from us. When I read my post here it came across that when she became 25 we would send Jen away for good, but that isn't quite what I meant. It is my hope that one day, and I can't see this being until she is at least 25, that may be Jenny would be able to flat share in a supported environment, or, more likely, that she would at least be able to live in a more secure environment than that, with people of her own age. Then knowing that she was supported and secure, and enjoying certain elements of independence, that she would come home at weekends, go out with us and so on; rather in the way that any other young adult would do. I realise in saying this, that I run the risk of ridicule, castigation, and so on, but we all have our beliefs, and I truly believe that that overall goal that we have for Jenny is in her best interests. Obviously those goals will have to be adjusted in the fullness of time, when Jenny does indeed reach her full potential. The reservations that I do have are that centred around the possibility that Jen will learn how to cope on the surface, whilst remaining vunerable and at risk. I worry that social services may decide ultimately that Jenny can make decisions for herself, when I think that is unsafe, after all we all know about the so called 'Care in the Community' policy. Take care all. Apologies for my ramblings. xx
Aaaaaaaaaaaaaaaaargh!
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Lesley
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It doesn't bare thinking about what your kids will do when they are grown up even when they so called normal never mind special needs. I have two children Amy who is 17 years old and a 'normal' nightmare teenager and Richard who has special needs. A little while ago I thought about what would happen to them if i died, well Amy is really old enough to get out there and look after her self although she would have a big shock about the real world financially etc. As I've said before I am a single parent and their father decided about five years ago or more that he didn't want to be involved in the lives of our children, they haven't heard anything from him in nearly six years now. He hasn't a clue about them and I've often commented that Richard could walk past him in the street and he wouldn't know him. Needless to say I would dread to think that should anything happen to me that that custody would automatically go to him. So I intend on trying to set up a will of some sort stating that custody should go to my sister and brother in law if this is possible.

Hopefully as Richard gets older he will be able to form better relationships and become more independant. I realise that this is not going to be the case with a lot of special needs children.

I can tell from what I've read that you are a well organised person and that you will make sure that the best future possible is available for Jen.

It doesn't bare thinking about but it's something we all have to consider.

Lesley
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:Druss
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My dillema is a bit diffrent i have no family that would look after Amy and no very close friends ,in other words Amy will most definately be in a home when we both go she will need 24hr care and help with most things and having worked in an old peoples home a bit different i know but i have visted other places and its amazing what they will show you if they think your one of them :angry: all reported by the way , but it opend my eyes and i know all my dark fears swimming round my head could end up reality and i wont be here to stop it
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:acorns47
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I'm not so much well organised, its just that John had so much grief from the legal wranglings of his late wife's will. She stipulated that she wanted him to sell the family home and split her half between Jen and her 2 older half sisters. No mention was made of what was to happen to Jenny, just that John was to be her childrens' guardian (but obviously no home to put over their heads!) The maternal nan took Jens 2 half sisters to live with her, and then they subsequently went to live with their natural father a long way away. No one contacted John or Jenny during the year or more that it took to sort out the will. Despite Johns parents investing money in the house so that he could pay the other 2 girls off and remain in his home with Jenny, they still hated him. It was only when I came along and moved in that they then increased their hate campaign to me as well. They then decided that they wanted to see Jenny, which we agreed to, but it was obvious to them that I wasnt the push over that John had been, because I made sure that the contacts remained in Jens home town, and that she couldnt be taken out of the country or be shared out at Christmases and birthdays and so on. She sees them once a month for a day, locally, and they still hate me for it, but I am adamant that they are not going to pick her up and put her down whenever they want to. I It is for that reason that I have made it esplicit that having demanded contact every month that they will both make themselves available to see her, instead of taking it in turns to come down. It is because we do not trust their motives for coming back into Jennys life that we have written our wills. Jenny is catered for emotionally, physically, and financially. Any money & estate coming to her (and our other girls) is secure, so THAT FAMILY can't get their hands on it! In terms of teaching Jen to do things for herself, I don't know whether she will ever be able to do things for herself. Its such an upward struggle, and she hasn't really progressed over 2-3 years. but she now thinks she can do things herself and is extremely resistant to accept guidance (like wiping her bum which she doesnt do but says she does!). Her tantrums are bigger because she is bigger. Its such a problem, and to be honest I dont know that we wouldnt have been better carrying on doing everything for her instead of trying to teach her things :blink: In terms of where she will go when John and I are not around, I don't want it to be one of those cases where the authorities step in and decide whats best in our absence, and which would also be traumatic for Jenny. Better perhaps that she has the opportunity to adapt to her grown up home, whilst still being able to enjoy coming back to the bosom of the family regularly, whilst that is still possible. Its tough because she relies soley on us to look after her, amuse her and provide companionship for her 24/7. I do not want to make longterm decisions about her moving away, which I might otherewise not have done, just because I sometimes need a break...not sure if that makes sense to anyone. It must be tough for you Lesley, not having anyone to fall back on. All the more reason perhaps to look carefully at your preferred options though. Its tough having to make such decisions on your own, also not cheap using a solicitor, but even writing a letter stipulating your wishes and giving to a friend would be a useful first step?
Aaaaaaaaaaaaaaaaargh!
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:acorns47
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I meant to say 'and Debs' too
Aaaaaaaaaaaaaaaaargh!
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