My name is Miriam. I’m 63, and I live in Devon. I live with my husband and my son. My son is 31 years old and has a learning disability, severe Autism and challenging behaviour. I would like to participate in PROPS and share my story, so that hopefully people who hear it will have a better understanding of how similar, and yet how different, my life is from that of people who don’t have a child with severe disabilities. I want to show that life is often good… it isn’t always doom and gloom!
Three things I carry in my pocket
Travel binoculars, glucose tablets, and a laminated card to give to someone if there is an incident when I am out with my son.
My view of the outside
I can see our new garden fence, raindrops running down the window, and a couple going past walking their dog. But this picture of out local beach is what really represents “outside” for me.
A routine I can’t do without
Before I go to sleep at night, I thank God for his many blessings to me that day.
What I would change if I had miraculous powers
I would remove the selfishness that is inherent in human beings and is the cause of so much unhappiness and suffering in the world.
Things I would rescue if my house was on fire
My handbag containing my mobile phone and diary, my favourite photograph of my son as a toddler, and my RSV Bible – given to me in 1975 by my wonderful Father, just before I set off to Kenya on my gap year.
Things I am
The end of all Covid restrictions and the associated fear. ii) the freedom to live spontaneously without needing to arrange care for my son first. iii) the time when my son is in accommodation of his own and is happy and set up with his support workers….. I won’t live for ever…. and I can relax!
The kinds of things people say to me
People often tell me I am so marvellous, patient and brave and they don’t know how I keep going. I get frustrated by comments like this. I simply get on with life. I just deal, to the best of my abilities, with what each day presents me with.
Something that marks a boundary in my life
This would be the key press that we have by our back and front doors. We need to keep the back and front doors locked at all times and the keys put into the key press to prevent Henry letting himself out and running off to see the world! It is definitely a boundary in my life… and one I could do without!
Three pieces of music that get me through
The song of the Weather by Michael Flanders and Donald Swann
Handel’s Messiah – The Trumpet Shall Sound. My son’s favourite piece of music. He has tens of CD’s of this music.
It is well with my Soul by Horatio Spafford “Whatever my lot, you have taught me to say, it is well, it is well, with my soul” Written after Spafford was bereaved of all his children.