sick carer.

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sick carer.

Post  phoebe 63 on Thu Apr 26, 2012 9:22 pm

My Son has a fantastic carer. She is active, full of beans and he adores her. She has recently had to resign from her caring role with my Son as she has a skin cancer scare. I am gutted for her but also for my Son as they are very close. He is on the autistic spectrum and I don't know how he is going to cope with this and have told him she is unwell which he has accepted at the moment but it is likely she will get a lot worse and I don'tknow how I would be able to explain this to him . I think all these changes are going to upset him.

Do you think I should look to hire someone else as he needs to get out and about more than he does at the moment? He loves his routine and Idon'tknow if he will accept anyone else. Also it is going to be very difficult to replace her with someone as kind and understanding and full of beans.



All the best
Elizabeth x
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Re: sick carer.

Post  pottydotty on Thu Apr 26, 2012 10:55 pm

Hi Elizabeth, what a dilema, you can understand why she has had to give up the care work and hope evrything turns out ok for her but i do understand the delema you have now with your son. this will take him out of his comfort zone, the only things i can surgest are.....

whould this lady be able to recomend someone else, most careers know others in the same field, or you could approach an agency for advice and help in finding someone else.

finding someone else is a must i think, i know its not easy for your son to cope with change and different people but think it would be even harder if he doesnt get out much and looses the skills he gains from getting out .

i think id stick with the story " his usual career is poorly at the moment so someone else will take you out untill we know more, this doesnt make loosing his career so final and add to any refusal for anyone else, then once the new person has got to know him and he becomes comfortable then bring up the fact his old career is not comming back, that way he has already got to know his new career a bit before he realises thats it,

it is such a hard one to deal with elizabeth so im sending you hugs, but i do feel you need to introduce a new career, it will be better for him in the long run. xxxx

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Re: sick carer.

Post  tinkerbell on Fri Apr 27, 2012 12:51 am

Hi Elizabeth
Aww what a shame on both counts, I do hope she will be ok.
How lovely that they got on so well, she sound like such a lovely person, and I would think it will take some time for your son to accept someone else, but I do think you should be looking for someone, or else he may go further into his shell, it will be hard to replace her, but I am sure with time someone will come along.
Has you know better than me when they have autism they do take time getting to know people and taking to them, so I would start looking.
I really do wish you good luck with it all xx
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Re: sick carer.

Post  KAZ59 on Fri Apr 27, 2012 3:17 am

Hi Elizabeth

Well, I agree with Coco and Barbara, he needs to have his outings etc. Kimberley has the problem that she doesn;t like change at all. As Coco said you should either contact your old carer or where she worked from and see if they know of someone who they feel would do well with your boy. By the way I just wanted to say sorry for the carer, what a worry she has. You will have to tell him little white lies, till he is happy with a new person. I know that sounds terrible, but it's the only way to go, for you and for them. Make sure that you dont deal with this on your own though, you need support as well.

karen xx Smile



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Re: sick carer.

Post  phoebe 63 on Fri Apr 27, 2012 8:39 pm


Thank you all for such wonderful advice. I think an overlap is a great idea so he gets used to someone new as a precaution. I don't want him to go into a shell. I don't want to upset her by asking if she knows anyone else but maybe she will appreciate that I respect her advice? Also I'm sure there would be someone grateful for the work in the current climate.

Thanks for all your concern.

Elizabeth x
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Re: sick carer.

Post  KAZ59 on Fri Apr 27, 2012 9:25 pm

Hi there

I dont think you would upset her, she knows how your boy has to get out and about with someone and she knows that once she recovers(please let her) that she will take back over. And she will want whats best for your boy as well.

karen xx Smile
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Re: sick carer.

Post  pottydotty on Fri Apr 27, 2012 10:10 pm

E i dont think she will be upset, especially if you word it right, id go with some thing along these lines.....

you know my son very well and i appreciate the bond you have built with him, i also appreciate you have an ilness to deal with yourself at the moment and you understand she needs to focus on getting through it, because she knows him so well and has done so much with him which has been of great benifit to him does she know anyone who could maybe step in for a while and continue with the good she has achieved thus giving her the space she needs and the peace of mind knowing little man has got someone to continue where she has left off untill such time she desides to either come back of retire from caring. tell her she has you full blessing and best wishes and you have valued all she has done up to now and she should be fine, it might make it easier for her as she will then know little man is taken care of. good luck with it and keep us up dated xxx

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Re: sick carer.

Post  Mr Admin on Sat Apr 28, 2012 7:08 am

Hi Elizabeth

I can only imagine what you are going though and how hard it is to find someone to fill in for son's carer, all I can do is suggest that you bring in someone slowly, I do know how hard it can be for a young
person with a problem like autism to cope with change and new people.

When I was a lot younger lol! , I used to be involved with a local support group who provided activities and care for children with downs syndrome and I know how hard it was for them to cope with new people who come in to help from time to time one perticular child had both downs and autism and he was a perticular challenge but after a while he got used to me and the other part time volenteers, also slowly he accepted change without to much fuss as long as he had a face he knew with anyone new he soon accepted them, but again it depended on the person some it took a few weeks other's a few day's and on the rare occasion it could be less than a couple of hours.

What I would suggest is to try 2 or 3 different carer's and have a few face to face meetings at the same time as I am sure your son will soon pick one out that he feels comfortable and safe with, this way he is the one in control, also doing it this way it reduces the stress of constant change of single meetings.

I do hope you find what you need for him and it will be a lot of stress taken off of you shoulders, and you know we are all behind you with this and are allways here to listen and help in what ever way we can

Lots of hugs for you and your family ((( ))) Very Happy Very Happy

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Re: sick carer.

Post  phoebe 63 on Sun Apr 29, 2012 9:04 pm



Thanks all,

I will take all your comments on board.

I think she has left because she needs to focus on the illness and also because she doesn't want to put me under pressure to pay her while ill (she is a good friend). I had a carer before who went sick for ages and although I paid her I got the money back from SSP. But it was difficult as I couldn't get another carer sorted as a temp.

I haven't spoken to her face to face and it is all via text at the moment so I'm not getting the full picture. But I have to respect her resignation and hope she is doing it for the right reasons.

E xxxxxx
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Re: sick carer.

Post  pottydotty on Thu May 03, 2012 10:31 pm

Hi E, just catching up on how its going your end. any progress with the carer situation? i do hope you manage to find some one soon xxx

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Re: sick carer.

Post  phoebe 63 on Fri May 04, 2012 12:10 am


Not having a lot of joy at the moment PD but I haven't put a lot of effort in as been so tired. But I am much clearer about what to do thanks to all your wonderful advice. I know to look for a carer who can go swimming with him as that would help keep him happy as he loves swimming but got to find someone who is a good swimmer and has all the right credentials.

Elizabeth xxxxx
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Re: sick carer.

Post  KAZ59 on Fri May 04, 2012 3:06 am

Hi Elizabeth

Do you not have a group or something that deals with children with autismn(sorry cant spell today) I just wondered if there was something whether they could help you in getting someone else for your son.

karen xx Smile
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Re: sick carer.

Post  phoebe 63 on Fri May 04, 2012 6:56 am


Yes I do. My carer also worked with my Son at his previous school. That is how I found her. She may know someone else from the school which will probably be my next step as the staff were very professional and highly qualified.


E x
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Re: sick carer.

Post  pottydotty on Fri May 04, 2012 7:00 am

well worth asking E, good luck xx

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Re: sick carer.

Post  phoebe 63 on Wed May 09, 2012 1:52 am


I've put the feelers out. It is so difficult to get someone you can trust and who works hard. I've had problems in the past trying to get someone caring, compassionate, trustworthy and reliable.

e x

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Re: sick carer.

Post  KAZ59 on Wed May 09, 2012 2:19 am

Hi Elizabeth

Glad you have the old feelers out. Lets hope it wont be to log before someone comes along for you and yur son.

karen xx Smile
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Re: sick carer.

Post  tinkerbell on Wed May 09, 2012 4:18 am

Elizabeth I do hope you find someone very soon, it must be a worry for you....its so hard sometimes to get someone you trust and who your son will get on with...good luck xx
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Re: sick carer.

Post  phoebe 63 on Thu May 10, 2012 7:28 pm



thank you. Haven't heard anything yet. Sad

E x
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Re: sick carer.

Post  chris7 on Fri May 11, 2012 8:51 pm

Hi E

Sorry love, I have only just seen this thread though I think you did mention it elsewhere. I can't advise at all but I can understand how difficult it must be for your son and you. I guess it is really just a case of constant reassurance for him. Do hope the lady makes a good recovery and that you do find someone equally good that your son will come to accept. Do let us know how it goes.

love
Chris xx
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Re: sick carer.

Post  Cstars on Sat May 12, 2012 2:05 am

My apologies Elizabeth I have only just come across this too.

I have worked many years but not sure how much on the spectrum he is.

Have you tried contacting the National Autistic Society, they can probably direct you to people interested in your area..Does the school have a family liaison worker they are often a mine of information.

I wish I lived nearer autism is my passion... But not sure I would have enough beans at the moment!

From experience I have seen children who appear to be very attached to a carer or teacher, but if the transition to someone else is smooth and incorporates lots of familiar activities and routines they almost dont 'miss' people in the sense that we do.
I know that sounds harsh (please dont read it wrong) but Im sure you have seen it with other changes made in the past.
Some different /new/old behaviours may occur but if the new person is briefed on all of these and current ones and how to deal with them it is helpful to all parties.
Have you ever used a communication passport?

You make a document talking in the first person giving name etc. family members, likes dislikes , comforters, things to say things to avoid. It is very useful to give to anyone new coming into contact with the children, its a quick overview and worth having to hand at times like this.

I will scour my files to see if I still have a template
Just found this but the ones I made were a bit more brief. (I am sure I sort of invented them and a therapist robbed the idea) !
http://www.communicationpassports.org.uk/Resources/Creating-Passports/Templates/

Good Luck with it all ...to your son and to the lady who is poorly .




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Re: sick carer.

Post  Cstars on Sat May 12, 2012 2:06 am

Should read...I have worked for many years with children and autism. Embarassed
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Re: sick carer.

Post  phoebe 63 on Sat May 12, 2012 5:45 am

He's classed as moderate Christine, he has a statement and is in a special school and is verbal. I've not heard of the communication passport. I just muddle on through.

His carer worked at his previous school and they hit it off. When he changed class he sobbed his heart out and brought her leaves from the playground as a gift. She has had him to stay overnight and helped out when I had my THR.

I haven't heard from her and do not know what is happening health wise and when or what treatment she will need. She was a great sun lover and often went to Spain. She is hyper so could keep up with Daniel and I trusted her with him. It is the trust issue I will find so difficult to replace. Instead of a carer i coud pay towards a club held at the Autistic centre but he doesn't really like lots of other children and too much noise.With his carer he could choose where to go. I get 5 hours a week respite money and need to keep using it otherwise they might take it away.

Ideally I'd like a night respite ,as we can never go away for a night ,but it is being cut nowadays and doesn't seem to be available to me but others seem to get it. The children don't seem settled at their Nans house so I don't really ask her to have them. But I love them all and happily miss out for them to feel settled and happy but I have no life

Thanks for the reply and I know you are busy working hard and trying to deal with everything so don't worry!

E Very Happy
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Re: sick carer.

Post  KAZ59 on Sat May 12, 2012 6:45 am

Hi E,

My heart goes out to you. It must be very hard and I understand when you say you would be happy as long as your children are, I feel the same. But as you said it means you have no life at all. Round our way we have Carers First, they are very good. If you h ave them round your way,give them a go. They do all the respite stuff and have young students looking after young ones. They also do family days out and other events. It would even help your other kids, with evenings out and special groups.

Just a thought.

karen xx Smile
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Re: sick carer.

Post  phoebe 63 on Sat May 12, 2012 9:37 pm



I have a carers service but they don't do nights. I'd like to go away here and there although I'm usually washed out. I can get out for meals and evenings at my local social club.
Dan has actually gone to a club today, first time since before Christmas so I'm just chilling with music.

E x
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Re: sick carer.

Post  phoebe 63 on Fri Jun 29, 2012 9:35 pm


It is looking like I will lose all 5 hours of respite that I currently get on behalf of my Son Daniel. The council are only giving direct payments for respite to the desperate now. They keep asking me what I use his DLA for but I don't see why it is their business. they used to provide respite so what has changed? Well I know it is money or a shortage of it.
Anyway it is going to appeal next week but I'm not holding out much hope after talking to the lady who interviewed me at my home. I use the money for the high fees I have to pay for babysitters, the days out in the Summer and Easter and for my carer (who I haven't replaced yet because I might not qualify for any money to pay them with). The coiuncil is passing the buck over to DLA. It is the current mantra.


Well wish me well with the appeal.

Elizabeth xxxx
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