Caring More Than Most: Miriam, Isaac and Naomi

Wednesday December 6, 2017

Miriam Gwynne from Lanarkshirein Scotland is mum to nine-year-old twins Isaac and Naomi, who both have very different disabilities.

Isaac has severe Autism, is non-verbal and has global development delay. He has neurofibromatosis type 1, a brain tumour and a visual impairment.

Naomi has severe anxiety, autism and an eating disorder. Miriam's husband also has autism and neurofibromatosis type 1.

I have a degree and have run my own business in the past but even part-time work is now out of the question. I have no option but to rely on benefits as I need to be here for both my husband and the children. After school care is not an option for children like mine and no employer would be able to give me all the time I need to attend to the needs of those I care for.

Financially it is a huge struggle especially at times like Christmas. It is hard to find hope when you know your situation won't change. I want to give my children more but there is never the money to do so.

It's hard to quantify but some weeks I provide 50+ hours of care just to Isaac. My son needs lots of physical and personal care including feeding, dressing, changing nappies as well as attending frequent appointments with professionals like neurologists, eye specialists, social workers and school, which are all intense 1-2 hour-long meetings.

My daughter needs lots of emotional care and support and again we have many meetings with CAMHS (child and adult mental health services) and social services.

"I say to my husband once Monday is over, that's the Carer's Allowance earned for the week already. I don't even qualify for the full amount of Carer's Allowance because we are on income support. I sometimes catch up on sleep when the children are at school, if not I'm organising, tidying up and gathering my strength for the next stage.

It would help so much to have more support and better acknowledgement of my role as carer in addition to parenting. Understanding from doctors about my situation as a carer and being able to arrange appointments for myself around all my caring duties is a simple request but would make a huge difference. And understanding from schools that I may not be able to do homework with one child as the needs of the other required me more some nights. 

Our Caring More Than Most report found that 24 percent of UK parents of disabled children provide an unimaginable 100 plus hours of care every week.

Caring More Than Most highlights a marked and unacceptable difference between the quality of life and opportunities available to disabled children and their families compared to those without disabilities. Find out more.