What is Independence?
Helen Horn
I am mum to two young men. My eldest son James, who is 27 years old, has a diagnosis of Wolf- Hirschhorn Syndrome and Autism. On my blog I write ab...
The word ‘Independence’ probably conjures up different things to different people. The dictionary definition says it is ‘the freedom to organise your own life and make your own decisions without needing the help or influence of other people.’
In that respect, my eldest son James will never be independent. He has neither the capacity or capability to understand and organise his own life. Whereas my youngest son has acquired all the tools he needs to be independent. It is one of many things we strive for in our children, as adults we want them to be able to take care of themselves and manage their own lives. With that in mind ‘independence’ or ‘being independent’ has taken a different form for James.
James has an independence of sorts.
He lives in supported accommodation. He will always rely on the adults who are caring for him to manage all aspects of his life. They cook for him, clean for him, shop for him, do his laundry, manage his finances, help him to wash and dress, make his appointments and transport him to his day services, there is nothing they don’t do.
As James parents we are heavily involved in making decisions about James’ life and we spend a great deal of time with him but, he is no longer reliant on us to do all of those other things for him and deliver his day-to-day care. James has learnt to live much of his life with out us and he is thriving. So no, he will never be independent but he is living independently of his family.
Recently, I was unable to attend a weekly music therapy session with James and his therapist. Instead, his care staff attended with him. His therapist has known James now for well over two years and has a good understanding of his needs and abilities. She reported to me after the session that “James had been focused and communicative throughout the session, that he chose clearly and executed precisely the games they played. She added that having a new person in the session motivated James to concentrate deeply and that he was flawless in his engagement and independence.”
I was thrilled to hear this.
This may seem insignificant to some but to me this is a huge win. There would have been a time when a change in the group dynamic such as this, more notably my absence, would have thrown him into complete disarray but instead he showed that he can be confident and self-assured without me and I couldn’t have been happier to hear that because ultimately, one day I want him to beokay without me. Slowly but surely he is achieving this and I am so proud that he is.
