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.
Written by
Contact
at 00:00