This story begins with an introduction from Naomi, who shares with us her experiences of being a full-time carer, Mum, nurse and painter and why now is the right time to share her story and her artwork.
When I was aware of the project going on to exhibit for the 70 stories for 70 years of the NHS it felt like the right platform to share an insight into the life not only of a carer and Mum, but someone who previously worked as a nurse.
I feel very grateful that we have the NHS to support us and I’m not sure how many of us would survive without it. Doctors and nurses do an amazing job including all the others behind the scenes.
I wrote ‘A New Map’ this year during a period where my sons health was poor.
It was an incredibly difficult time which thankfully we are coming out of, but as a single Mum to a special needs child writing was a way to pour out my heart and put pen to paper.
As the year has moved on I found the time to dip into my art due to being at home for long periods of time. Poached Egg daisies are now appearing.
A New Map
It’s only when you find yourself in a situation that you can truly understand the huge impact it can have on someone’s life.
Until my son came into this world I had some idea of caring as I was a nurse for 16 years.
During those 16 years I worked long shifts and most of the time really enjoyed my role. Then would see a patient being discharged to the care of the family, feeling our job was done and so I believed it was.
When my son came along it made me have some understanding what it was like to be in a life changing situation.
Don’t get me wrong I loved him the moment he was born, but life changed that day and as a child without difficulties is born into a family, you adjust and have different goals for the future as we did with our other children.
What never occurred to me as a qualified nurse was the impact on the family as a whole, plus the full time care giver.
If it was just a matter of the care side of things fair enough, but it’s not.
It’s the phone calls, the professionals, the asking for help to get the right support for the future.
The denial of the right support, or having to back down and accept anything that’s going. This is the demoralising part, the complete inability to prepare and feel that your child will be happy and secure in the future.
Needing to be listened too, but feeling you are not.
Each and every child is an individual, not clumped together into one diagnosis…oh it’s a girl..its going to be exactly like every other girl around…..with each and every one of our children they will all be different. The world would be such a boring place if we were all uniformly the same.
Each child with a disability will also not match every other child with the same so called disability, each child will most likely have other complex needs on top of the ones diagnosed.
Then comes the stigma of what diagnosis your child has.
Unfortunately we are still living in a world where as a parent of a child with a disability like autism comes the negative press on parenting. Autism parents are amazing by the way!
Its like mental health, its the hush hush lets not talk about it, or lets steer clear just in case its catching.
Wouldn’t it be wonderful if we were all accepting of each other no matter our differences.
Thats when as parents we start to get segregated, pushed aside. Our needs as people are forgotten as we wade through the life changing experience in front of us.
Its fine for a parent of a new born baby to complain about feeling tired, usually support would be put in place as people cant resist the urge to see a newborn, but when your child turns teen and you are still having sleepless nights its accepted as normal for you.
I love my son! I have to manage! I no longer complain about sleepless nights, I’m grateful for the good nights.
The diagnosis process is …a process of diagnosis which changes over time.
The files of paperwork I keep hold of and have to search through each time I have to ask for one more thing for my son really needs a pa to manage it!
I turn up with my son to an appointment where I am expected to reel off his list of difficulties, medications, illnesses and also professionals involved in his care.
Now at the moment if I had to turn up with all of this information I would need a trolley to take it along in.
All of these appointments and applications need preparation.
This is when we need the support from our friends which unfortunately we find may have slipped due to the inability to function as we once did, also due to self preservation knowing that any outing out will tire us out.
Thankfully the few friends who accept and understand the changes stay by you.
Then comes the benefits. The need to claim to lead a somewhat ‘normal’ life.
To claim PIP is a lengthy process to get the extra support. It isn’t an easy task.
If you get PIP you can then claim Carers allowance.
Carers allowance is a pittance compared to the amount of hours a carer can put into each day.
All at the same time you care for your child to your best ability and give the love they deserve.
Nobody takes into consideration the loss of wages that once in your dreams you would have managed to keep hold off.
You keep a household going unless you are in the position where you can go to work, which again is usually something just of dreams unless you have a good support network.
Unlike my other children I am not looking towards when my son can leave home and have independence. I’m trying to secure the right schooling, college and further support for his independence in the future.
My most important aim is wanting my son to be happy.
I’m striving to teach my son the simplest of tasks that you or I may take for granted.
All this I delve into my own experience as a mother and nurse for ideas on how to manage, plus advice mainly from other parents in-similar situations to myself.
I once again feel I’m under the glare of not only professionals, but also family members and friends.
My son should be independent by now. I know that! I have tried so hard I am drained by trying the same techniques, plus new ones.
This is where the autistic spectrum rears it’s ugly head with the wide range of other complex needs a child or adult can have.
Please remember this is not the parenting. Its the complexity of the disability.
Your goals in life change.
You live each day at a time and although you have no choice but to try and make long term plans for support, you can’t look too far ahead as life throws other issues in the way which soon change your plans.
In all of this people forget that you once held down a job, you had a life outside the parenting and caring role that unfolds in front of you and bit by bit, the person you once were seems to go in the back burner.
That person and parent is still in there somewhere.
Given the support and encouragement that your family need, that parent’s identity could be found once again, unfortunately this doesn’t always happen, especially when the support and understanding is not there.
One day in the future that person may reappear, but as each year passes it seems harder to claim that person you once were.
This doesn’t mean you are a lesser person than you once were, it’s just our maps have changed.
We now walk a different route.
Your child has mapped a new life for you, a new recognition of who you are.
I’m proud to be my son’s Mum.
The Great Escape
A painting of Poached Egg Daises and a story
Finally I am painting again.
Its only taken me goodness knows how long, maybe a total of 15 years to pick up a paintbrush again in the privacy of my own home and have a go.
The debilitating tremor that once took the brush out of my grasp has been pushed to a place where my freedom in art can start to shout out.
Life can be one huge rollercoaster and it’s in the troughs that amazingly my paintings, especially Poached Egg Daisies have started to emerge once again.
This painting is called the Great Escape due to the fact its been such a tough old time, but beauty has had a way of creeping back in.
I remember being taken for my first painting lesson by my Dad and a lovely artist John Henshaw.
My Dad Jeremy Ballard was already a wonderful artist , but we both sat and painted in the way we were taught.
John used to make his own paints which were so special to be able to use and I remember my Dad saying one year…always remember to use Yellow Ochre first.
So this painting has its base of yellow ochre and it has definitely brought the sunshine into my painting.
I was also told to sign in pencil by my father, something he only told me just before he died, so Im hoping this is a fresh new start where my Poached Egg Daisies have started to evolve.
Don’t forget to look out for the ladybirds and snails, these are now very much part of my style.
70 Stories for 70 Years
These stories represent personal experiences of the impact of creativity, culture and the arts on health and wellbeing. They have been collected by the Culture, Health & Wellbeing Alliance (CHWA) to celebrate the 70thAnniversary of the NHS in 2018.
If you have a story you would like to share, please do get in contact at firstname.lastname@example.org.
We are publishing these stories as a collection on the new CHWA website, and will be promoting them using social media from the end of 2018 leading up to the first CHWA Annual Conference in March 2019.