my son has a brain injury, right hemiplegia following a stroke as a baby and autism , I have struggled all his life but he is now 20 and has lived in residential care for four years last year was horrendous the transition to adult placement was a constant battle and we thought wed found a great supported living placement , they sounded brilliant and said they could manage his behaviour , even have a specialist behaviour nurse on the staff . I have been living with him for over week , as when he got upset his carers all hid behind a door and his arm got crushed !!!!we have a great team withing social services and even commisioner was on board this week , and has a mental health nurse on board ( though hes just an observer really , i wouldnt let them section him again , but the brain injury unit wouldnt have him eith er to do a specialist assessment . It crazy , they didnt listen to the best way to care for him and it ended like this .
It was all i could do not to just take him home but I know for him its not the best in the long run, I have chronic fatigue and depression and anxiety and had just got a grant for a break HAHA ...
last week was a round of meetings i met so many people providers whilke being told we were to get out of the flat ..we are still here , and have got a new place fingers crossed he moves again ! next Wednesday .....his anxiety is so high and i feel so sorry for him . apparently i am a sandwich carer as care for my mum as well !!!!
well enough of that just wondered if anyone has any spare hugs going
thankyou vIRGINIA
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janey61
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hi virginia i have an abi caused by a stroke nearly 4yrs ago, prior to that i worked with adults with learning disabilities who showed challenging behaviour.
it is very difficult to get close to someone with autism , but understanding their triggers and how to distract the person is a start.
you dont say whether your son is verbal or uses mackaton or the picture boards.....understanding what he is asking is very important as this could lead to frustration and a challenging situation.
i dont believe there is any need to section a person with a learning disability.
if that person is in an establishment for people with learning disabilities then it should be staffed by experienced professional staff who know how to defuse a situation calmly and if possible without the need for prn.
people with learning disabilities do not like change its unsettling for them. sounds to me as though you really could do with a holiday, so you need to approach social service for respite care for your elderly relative..........people like you save social services millions.
remember if youre feeling low or just want a rant then family are the people to do it to..............this headway forum youve joined.
Only just seen your post Virginia, my heart goes out to you, you must feel totally brick walled! Keep posting on here and also talk to the team on the Headway support phoneline.
Thanks guys. Dan is very verbal Steve and u are so right I.'ve managed his behaviour so well this week ....it's just exhausting ...Thanks for the kind words all ...x I worked so hard with this placement to get it right ...false promises ....and now they making our last few days so difficult ....my son is being amazing so proud of him....and with a broken arm
Virginia, just wanted to add a whole bucket-load of hugs, best wishes and kindness to all those above. Heartfelt hopes for a resolution soon ...........for both you and your son Dan, and for some badly needed respite for you too.
I really hope things turn around soon and his new place is more suitable for him, giving you some time an space to care for yourself too. My prayers are with you both. X
Sending lots of big hugs Virginia. How awful for you both. i hope your son gets settled and you manage to take a well earned break - you do need to focus on you too but I understand you can only do tut when your son is more settled.
I understand your frustrations and know just what you mean about the transitions from children to adult social care, the system certainly needs looking into!!
My daughter has a BI and when she moved to live independently we chose a support service who professed to be for brain injured - Ha! They were a joke with poorly trained staff barely out of school who couldn't support themselves let alone any with a Brain Injury - and they get away with it!
Well they did - until we had a meeting at daughters with social services after I complained.
Anyway moving on Autism is a specialized area and needs people who understand the person and how it affects their day to day life.
I have looked after children with autism for many years as part as my work.
Steve55 says it all !
You should have been listened to about the best way to support your son and I hope you get an agency or residential soon which can meet his needs. xx
I have just ready your post. Wow you really are going through the mill. I only hope that your break enables you to recharge your batteries, you need to look after yourself. My thoughts are with you and big hugs sent xxxxxxxxxxxxxxxx
Thanks everyone for the lovely comments ...he has now moved to a new place a lovely two bed house ! Two guys supporting him and a sleep in though lots to organise and resolve ...the care provider are using his second bedroom as their office ! But social worker was unaware of this on Friday ...on top of moving him ,I suffered a lot of abuse from him and two. Physical attacks ..as a result my amazingly supportive partner has left me and told me I have to let him go ...so last week I started to pack my home up to return to the house I've not lived in for four years ...at least I,m not homeless hey ! ....am totally devastated x
janey61why are you moving ? the thing with autism is the person is very receptive to tension and tends to react accordingly plus the stress of moving and having to start all over again.
im sure once hes settled in everything will be back to normal.
My partner of four years suddenly said I need to let him go ...my son never lived with us , but the strain must have got to him ...I,m devastated ,, I've not heard from him for a week now
Hi Virginia, I'm with Steve on this - leaving familiar surroundings are very stressful - I'm the one with a BI and I stupidly moved myself 3 times in a year. It's taken me another 2 years to make new friends, relationships, - not personal, and one thing i havé learn Is that the grass isn't always greener on the other side!
But I do hope things work out for you - I'm having to work VERY hard to accept my limitations, make them or some less so and it can also be stressful - not good for anyone's health in this day and age - especially if the doctors just try and fill you/anyone up with medication when eating sensibly and taking the right the nourishment, making better decisions, will help the brain and body do their job better!
yours is a very difficult situation, just keep focussed on what's right for him. you sound like a fab dadad. he's lucky to have you on his side! keep at it. it'll be worth it in the end!
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