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lorryw

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Posts posted by lorryw

  2. Posted · Report reply

    Thank you for all your replies, lots of things to think about.

    I think one of our main problems is we really have issues with trusting others to care for him. He is non verbal and therefore very vunerable. We have yet to find even a day service who can work with him (and us) without some major blip. He is also very happy at home but we realise that we wont be here for ever.

  3. Posted · Report reply

    Im not sure if many of you remember but we were going to place our son (24) into a residential care home. I think we had become so weary of trying to deal with social services and our lad that we felt it was the best option at that moment.

     

    We had some long awaited respite (we have never had any) and felt a 100% better. An unannounced visit by us to the care home raised alarm bells in our minds. We sat in a locked office for an hour whilst lunch was taking place and then quickly shown around. We had been told that the youngsters went out and about in the community but at least 2 of them were still in bed with staff posted outside rooms. I tried to speak to one of the staff but she didnt speak English. We felt uneasy and told SS we wouldnt be sending him. Our social worker was furious and very unprofessional and told us we wouldnt get any more respite and anyway our son wouldnt care where he was. We were very upset and made a formal complaint and now have a new social worker (yet to be seen).

     

    Our local authority has suggested independent living but we have doubts about his safety in such a scheme. We cant bear the thought of him having to cope with lots of different staff and not having a voice to tell us if something goes wrong.

     

    We are happy for him to stay at home but realise we have to have an eye to the future and wondered if anyone was aware of any other options for future care we can explore.

     

     

     

     

  5. Posted · Report reply

    I admire all those parents who have the ability and energy to "fight" a very flawed system.

    Looking back on when my son was a little lad I feel very sad that I wasnt aware I could challenge the decisions made by our local LEA. Access to the internet and all the information and help available now simply wasnt an option and forums such as this should be treasured.

    We are currently embattled with adult services and we are determined that my son will have a fair deal. We shouldnt have to fight, they should abide by community care law but they dont for a multitude of reasons.

  8. Posted · Report reply

    I am pleased you have your grant.

    I think it depends on your local authority (post code lottery yet again). We appled faor help with our bathroom taps. Our son regularly runs the taps upstairs and floods the floor and seeps through our kitchen ceiling. The OT was great but the chap from the council was very unpleasant, in a polite way, and wouldnt agree with the OTs suggestion. Upshot was we still have the occasional flood if we dont keep an eye on the taps. Our son is an adult with autism and severe learning difficulties but the chap didnt seem to regard that as a disability.

  12. Posted · Report reply

    I found it very difficult to watch and my husband had to leave the room. My heart went out to all those parents and I recognised bits of my self in all of them. We are wrestling with the prospect of our 24 year old going to live in a care home. The guilt and pain is overwhelming at the moment, but I felt humbled by the strength of those parents who were able to face a camera and talk about how they felt.

  13. Posted · Report reply

    I caught a glimpse of this on breakfast TV and thought it may be of some interest. One of the families featured have a 17 year son with asd who is not getting the services he should. I think it will be very difficult to watch but it seems to draw attention to the lack of help and care available to families struggling to care for children with disabilities.

    I have just read an article by the programmes producer (who has a daughter with downs). She commented on the fact that the families she visited all had large files containing letters from those who should help but never do.

  15. Posted · Report reply

    We have just returned from a break on a beach in West Wales. We have a little mini schnauzer who I always keep on lead as soon as I see anyone approaching. I was shocked at the amount of people who felt it was okay to have there dogs charging around the beach. My son is terrified of strange dogs running up to him and will scream and flap which alarms the dog and we worry about him being bitten. We had to spend all our time on dog alert and got thoroughly fed up of people yelling "its okay he wont bite".

  16. Posted · Report reply

    I hope you feel better soon. We rented a holiday cottage last week and flu struck on the first day. I felt so awful I couldnt even eat any of my birthday cake, so it was a rotten holiday and birthday.

    Im not sure if I had swine or seasonal flu, they both seem to have the same symptons.

    Drink lots and try and sleep as much as possible.

    Loraine

  21. Posted · Report reply

    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

  22. Posted · Report reply

    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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