Why adult disability services are needed (part 6)


If I truly loved my daughter I'd want to spend every hour of every day with her, wouldn't I? Wrong.

If she didn't have special needs you wouldn't expect that for longer than a couple of years at most.

It's the summer holidays right now and I spend at least 8 hours a day directly entertaining and helping my daughter, sometimes that involves multitasking (hello Twitter and Tesco!) but less than when she was little and enjoyed watching and chatting to me while I did everyday household activities like cooking and cleaning. To get anything else done, I have to help her choose some entertainment, a DVD or TV programme, as she doesn't really play with toys now: she is 18, after all.

By anything else, I mean most household tasks plus gardening, administration, fighting her corner, and doing things with my other children, including my teenage son who needs a lot more time from me.

Giving Smiley the life that she deserves means she needs more people in her life:


  • She needs friends of her own age.
  • She needs therapists to help her to compensate for her disabilities and achieve more independence.
  • She needs people to come up with new ideas and new equipment to help her.
  • She needs other carers who can come up with new ideas for activities, new places to go, things to try and people to meet.
  • She needs variety in her life.


I get stale, I am not a trained in occupational therapy, speech therapy, physiotherapy, play therapy, manual handling etc etc and I haven't got the time to learn it all either. All I can do is learn enough to be able to cast a critical eye on everything that others propose.

My hope is that Smiley can live here at home for the rest of her life. But we both need help if that is to work. She needs a quality day service to complement everything that I do with her, and I need a break from her to recharge my batteries, give my back a rest, get some sleep, and reconnect with the other people in my life.

It's as simple as that.

My other posts about adult disability services can be found hereherehere, here, and here

Note: I wrote this post to complement a great article in today's Sunday Business Post, reprinted here with permission from author Susan Mitchell:



10 comments:

  1. Great piece as always. Such a shame that you have to fight and beg for what should be just given to Smiley.
    Aud

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  2. I'm praying for you that a good solution is found for Smiley. xxx

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  3. Our daughter entered the care system aged 12, she is now 27 and we cannot fault the care and additional support she receives from the professionals. We have many friends who battled to get help at home as their child transitioned into adult hood, who had criticised us for 'giving our daughter away' 'given up on her' etc etc. Until we left the UK in 2010 she came home every weekend, we visited regularly during the week and were able to give the time and support needed to the other children at home.
    many of our friends still have their adult child living at home, some envy the fact we were able to make the decision to use the care system, some still question our decisions and motives, some have made the move themselves now, but we did what was best for her, the other children and ourselves.
    There is a lot of guilt some days, there is the constant need to acknowledge that if she wasn't disabled she would've left home by now anyway.
    I will add I am not her birth mother, but I am her mum and I spent many years in the profession of care and support for families in their own home and the transition into adult services. At lot of it comes down to funding and I'm afraid one's post code plays a big role in the services provided.
    I hope you get the support you need to keep your daughter living at home, for us, it wasn't an option.

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    1. Thank you for your comment and I'm very glad at you have found a care service that suits your daughter's needs, and I hope this post did not seem to imply criticism of anyone who has gone down that route. That was not my intention.

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