Fletts Report post Posted March 2, 2007 I am a mother with an 18 year old son with AS. He has been a very difficult child to bring up and an equally difficult adolescent. He is constantly getting into trouble with the law. He doesn't work and sleeps till 2.00 p.m and then is awake most of the night moving round the house and waking us up. He will not talk to us about how his life is going and we are extremely concerned. Our family is at breaking point with him. However, we are reluctant to ask him to leave home as we don't think he would survive on his own. In fact his sister thinks he would die (literally). We are currently in the process of a social services community care assessment for him, but I don't hold out any hope for much help from them. I was wondering if there are any other parents that could tell me if their children have left home and how they fared. Quote Share this post Link to post Share on other sites
Valiant_Skylark Report post Posted March 2, 2007 Hi Fletts The Million Dollar Question for us all, I guess. I can't answer that yet, but hope someone will be along who can. Welcome. VS xx Quote Share this post Link to post Share on other sites
Paula Report post Posted March 2, 2007 Im not utterly sure but if you get in touch with the national autistic society im sure they have homes like sheltered houseing for adults with ASDS and could probalbly point you in the right direction. Near where i live theres a private house with 3 adults with aspergers syndrome liveing together in it with a carer that goes in and helps out with bills and shopping ect..............I speak to one of the adults and he holds down a part time job and seems to do just fine............... I guess its knowing where to look and whats available out there............... Like many i wonder about my son hes 13 and i cant imagine him liveing independantly yet and i know this sounds rotton i cant face being stuck with him all me bloomeing live .ill just have to waite and see........ Mind run a scheme called the buddy scheme where NT adults are teamed up with disabled people includeing Autism and they befreind them and they go out to say the pub,or cinema or what ever the diabled person is into.I know coz i once worked for mind.....That might be worth a look into contact mind and ask.Its a way of releiving the pressure on parents and gives the young or older adult a break from parents and a bit of independance doing normal things. Quote Share this post Link to post Share on other sites
baddad Report post Posted March 2, 2007 Hi Fletts - As VS has said: a million dollar question... and one with no hard and fast answer... The first thing you've got to think about really is 'risk assessment' - Can he 'do' for himself (food, keeping house, money management, health and safety etc...) If yes, what are the concerns you have about independent living, and how can you address them... if no, how much support would he need to enable him to do so, can you manage that support from existing networks (yourselves, siblings, etc) and if not how can you access (and will you be able to?) that support? What's sometimes really hard, is putting those 'can he do?' questions into perspective - often people with disabilities come under the kind of scrutiny that non-disabled people would never come under/accept/put up with... I know one guy who spent several years back in residential care because his home looked like a pig sty and he lived on take-aways... he was 19!!! My guess is almost every neurotypical 19 year old bloke living independently would 'fail' an assessment if subjected to the same criteria! Leaving all home problems to one side (not that they can be in real life, but for the sake of perspective), do you think your son will ever be able to live independently? If the answer to that is yes, then the sooner you start working to make that possible for him the better... If you think he's always going to need some sort of support, you need to think about assessing and accessing it... The NAS site is probably a good place to start looking for links in your area for advice on the kind of support/housing that might be available: http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=10 Hope that helps L&P BD Quote Share this post Link to post Share on other sites
hev Report post Posted March 2, 2007 im thinking long term about my son,hes 13 and right opposite where i live is about 4 flats which houses people with special needs,a warden goes in and out daily,as soon as my steves 17 im putting him on the housing list,getting ss involved to have one of them,prob be a long wait but i would love him to have it. ideally he might meet a girl,have kids and not want to be opposite his interfering mum watching every move he makes i do worry about his future and like to hope he could live independantly but ive got my back up plan of the flat opposite(i love plans!!) i think fletts you have to find out whats available where you are,good luck!! Quote Share this post Link to post Share on other sites
TuX Report post Posted March 3, 2007 I am a mother with an 18 year old son with AS. He has been a very difficult child to bring up and an equally difficult adolescent. He is constantly getting into trouble with the law. He doesn't work and sleeps till 2.00 p.m and then is awake most of the night moving round the house and waking us up. He will not talk to us about how his life is going and we are extremely concerned. Our family is at breaking point with him. However, we are reluctant to ask him to leave home as we don't think he would survive on his own. In fact his sister thinks he would die (literally). We are currently in the process of a social services community care assessment for him, but I don't hold out any hope for much help from them. I was wondering if there are any other parents that could tell me if their children have left home and how they fared. Am not a mother,but am twenty three and live in residential care,with other Autistics and LDers. The care assessment might take a long while to wait for,unless he was at harm from living at home,the same goes for getting a social worker. Make sure to give every detail of his difficulties to the social worker who visits to do the assessment, not all of them know about Aspergers and might say he is more than capable of doing everything for himself so will not offer any services. Some social workers are very helpful and understanding. The NAS don't have many group homes on offer which places are usually filled,plus need to have a social worker first. He is likely to get more support and help in residential care,but more independance in group homes. Councils all have group homes for people with LD/ASD and tend to create more homes as they are needed. If they are under "learning disability",it is possible the staff will know little to nothing of aspergers and will treat him like he can do everything for himself,so he will need a support plan [make sure they put one of these in place,they are supposed to,but dont always] and he might get a communication passport which also helps staff to understand him and his needs. Cant write anymore tonight,as am being removed from this mac by my sister,if want some better less rushed information about what its like,pm me. Quote Share this post Link to post Share on other sites
pearl Report post Posted March 4, 2007 Hi Fletts & big hugs to you Will we ever have "empty nest syndrome"? I do hope so J is 17 so we will be facing this soon. We thought we might buy a bigger house initially so he could take on a proportion of the mortgage rather than paying rent, with the view to raising a deposit for his own place, but that depends on him getting & keeping a full time job which is by no means certain. In the meantime we are teaching him self help skills and are leaving him overnight for the 1st timenext month As others have said its worth exploring what sheltered housing is available, we would certainly consider it. Good luck xx Quote Share this post Link to post Share on other sites
Fletts Report post Posted March 7, 2007 Am not a mother,but am twenty three and live in residential care,with other Autistics and LDers. The care assessment might take a long while to wait for,unless he was at harm from living at home,the same goes for getting a social worker. Make sure to give every detail of his difficulties to the social worker who visits to do the assessment, not all of them know about Aspergers and might say he is more than capable of doing everything for himself so will not offer any services. Some social workers are very helpful and understanding. The NAS don't have many group homes on offer which places are usually filled,plus need to have a social worker first. He is likely to get more support and help in residential care,but more independance in group homes. Councils all have group homes for people with LD/ASD and tend to create more homes as they are needed. If they are under "learning disability",it is possible the staff will know little to nothing of aspergers and will treat him like he can do everything for himself,so he will need a support plan [make sure they put one of these in place,they are supposed to,but dont always] and he might get a communication passport which also helps staff to understand him and his needs. Cant write anymore tonight,as am being removed from this mac by my sister,if want some better less rushed information about what its like,pm me. TuX, Thank you very much for your reply. I found it particularly helpful. Can I ask you if you find your arrangement OK? What I mean is, I am assuming you have AS, but don't have learning difficulties, so do you feel you are in an appropriate environment? We are finding that social workers have no idea of the extent of the help that my son will need for independent living, just as you say. best wishes. Quote Share this post Link to post Share on other sites
louxx Report post Posted March 9, 2007 Hello fletts <'> <'> My son is 16 and my situation is the same as you apart from the fact my son won't step out the house. I have just had the call from social services and they won't help us, they havn't even been out. I cant ever see my son living on his own as he won't even go any where without me or stay on his own. I just take each day as it comes as i think i would go insane looking into the future. I just wanted to sympathise with you and just wonder what there is for our children and what help they will get and when. Sorry i havn't been much help. take care louxx Quote Share this post Link to post Share on other sites
Fletts Report post Posted March 10, 2007 Hello fletts <'> <'> My son is 16 and my situation is the same as you apart from the fact my son won't step out the house. I have just had the call from social services and they won't help us, they havn't even been out. I cant ever see my son living on his own as he won't even go any where without me or stay on his own. I just take each day as it comes as i think i would go insane looking into the future. I just wanted to sympathise with you and just wonder what there is for our children and what help they will get and when. Sorry i havn't been much help. take care louxx Hi Lou, I don't know what's worse, a lad that won't go out like your son or one like mine who goes out and gets into loads of trouble. What I have found, is that my son has changed a lot in the last 18 months. He is becoming more mature, so we can sometimes have a conversation with him about the future. Of course it's difficult, as he doesn't always want to talk and he doesn't grasp things straight away, so it is a long process. What I could explain in a couple of sentences about say, tenancy agreements, deposits and rents in advance to a NT person just doesn't compute with my son. He gets overloaded with information, shouts "aargh! What are you talking about" and puts his hands over his ears and storms off to his room. The next day he will calmly ask for clarification, and you realise he only took in the bit about tenancy agreements not the rest of it. Of course once he has "got it" it's OK and he retains it. I do find this "drip, drip" approach to information works the best. I used to avoid talking to him about difficult things, like moving out as I don't "talk his language" if you know what I mean. I find it difficult to remember the rules about speaking directly and literally and avoiding euphamisms, so conversations end in him misunderstanding where I'm coming from and getting cross with me and me acusing him of being rude and horrible and feeling really hurt even though my head knows he hasn't done it on purpose. But I decided we just have to talk about certain things, no matter how difficult and I have been surprised that although the first time is difficult and he doesn't like it, he almost always goes away and thinks about it and comes back to me with his thoughts about it and it's then that we have a mature conversation about what ever it is. You could try bringing up the future in a very casual way, for instance when you are out or see something on T.V. involving little children, you could say something like "ah aren't they cute, they seem really happy, would you like to have children one day?". To which the answer might be "no", but you could then ask why and it would give you an opportunity to find out what he is worried about. I think you shouldn't be frightened of starting him off thinking about living independently. What I say to my son about it is, well if you don't like living on your own, just come back. That way I hope he feels relaxed about it. However, it hasn't happened yet, which takes me on to your next point about social services. We have been messed about by them awfully, so decided enough was enough and went to a solicitor. We immediately got a response from social services that they would come and assess him. However, we were told beware, because although they have a legal duty to assess disabled people, for their needs, they can set their own eligibility criteria and they will make sure that when they do the assessment that they won't put AS people in the eligible bracket. This is because the local authorities have budgets for certain groups only, e.g., learning disabled, mentally ill and physically disabled. AS folk don't fall into these catagories. I think it is disgusting that the government has laid down laws that all disabled people should have their needs met, but local authorities can overide this. However, everything can be challenged and our solicitor has commissioned an independent social worker to do a community care assessment on my son. He is very experienced and knowledgeable about ASDs and was shocked at the problems my son is having and the impact on the family and in his opinion he is at the "critical" level of need. It is at this level that social services would have to help. We will still probably have to take the local authority to court, but it will be difficult for social services to argue against our "independent expert" (we hope). If we don't win, we will have to consider renting privately a small flat for him, but that won't be easy as he is on benefits and landlords don't want dss tenants. We can't give up hope of him moving out though as it really is too depressing. Sorry about the length of this message, but it feels good to talk about it. Best wishes Quote Share this post Link to post Share on other sites
louxx Report post Posted March 12, 2007 Hi fletts, i know what you mean and i do try and talk to him but his anxiety is so bad if he thinks about getting older and having to cope without us hes sick from morning till night, and i mean physically sick through worry. I do tell him that there will be plenty of help when he reaches 18, well thats what we have been told, with independant living, then again with the help we have had so far i dont hold much hope. I understand everything your saying and to be honest i just take one day at a time other wise i would go insane. Thinking of you <'> take care louxx Quote Share this post Link to post Share on other sites
Fletts Report post Posted March 12, 2007 Hi fletts, i know what you mean and i do try and talk to him but his anxiety is so bad if he thinks about getting older and having to cope without us hes sick from morning till night, and i mean physically sick through worry. I do tell him that there will be plenty of help when he reaches 18, well thats what we have been told, with independant living, then again with the help we have had so far i dont hold much hope. I understand everything your saying and to be honest i just take one day at a time other wise i would go insane. Thinking of you <'> take care louxx Lou, Goodness, he really is anxious, I can see why you have to be very careful. You must keep him safe (mentally, as well as physically). It's such a burden though, I do understand. Best wishes Quote Share this post Link to post Share on other sites
oxgirl Report post Posted March 12, 2007 Hi fletts, i know what you mean and i do try and talk to him but his anxiety is so bad if he thinks about getting older and having to cope without us hes sick from morning till night, and i mean physically sick through worry. I do tell him that there will be plenty of help when he reaches 18, well thats what we have been told, with independant living, then again with the help we have had so far i dont hold much hope. I understand everything your saying and to be honest i just take one day at a time other wise i would go insane. Thinking of you <'> take care louxx Lou, I know how you feel. <'> <'> My lad is only 13, but is terrified of growing older and doesn't want to grow up or gain independence. He is terrified at the thought of being left alone in the house, there's no way we could pop to the shop and leave him and he can't go out on his own either. I cling to the hope that things will change as he gets older, but I'm also terrified that in three years time nothing will have changed at all, that he'll just be taller. It's very frightening, isn't it. <'> <'> ~ Mel ~ Quote Share this post Link to post Share on other sites
louxx Report post Posted March 13, 2007 (edited) Hi mel my son has got worse over these past 6years, i cant go and leave him like you just to go the shop, he worries sick about everything, i have to be so careful what im saying. We have been through months of work with the psycologist to try and ease his anxiety but hes just as bad. I only hope your son will have better luck than mine, its so hard because it all falls on us as parents and when you have other children to look after it does get you down and its very tireing isn't it?? Anyway take care for now louxx <'> Edited March 13, 2007 by louxx Quote Share this post Link to post Share on other sites
louxx Report post Posted March 13, 2007 Thanx fletts for that, and i can understand what you are saying, i won't be around forever and that frightens the life out of me so i hope there will be help for our children just to live independantly. take care louxx <'> Quote Share this post Link to post Share on other sites
lynyona Report post Posted March 14, 2007 Im in the same boat as lou i cant ever see kieran being able to live on his own as he also doesnt leave the house. it is a worry and we were talking randomly one day as you do about them all leaving home and he said im not going anywhere im staying here with you and im sure he will aw bless him lynn Quote Share this post Link to post Share on other sites
