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 here, here, here, 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: