“A month after my return to work from maternity leave, my world fell apart”

Published: 29 Mar 2019

Earlier this month we spoke to Sera Johnston about her experiences of juggling work with caring for her disabled daughter.

Sera is a qualified NLP Practitioner, coach & mentor, author of ‘Dana’s Walk’ and co-author of ‘Transforming Your Life’, and mum to Dana (aged 20) with Cerebral Palsy

How have your own experiences as a mother of someone with Cerebral Palsy influenced your decision to help other parents of disabled children?

As someone who had no contact with disability prior to having my daughter, I, like most people, was unaware of how different this world was. A different language spoken, a set of rules to abide by – basically a very different world to the one I had known all my life.

“A month after my return to work from maternity leave, my world fell apart. My daughter was diagnosed with Cerebral Palsy aged 13 months.”

I remember asking the consultant to repeat herself because it was said so casually, I thought I misheard. It was as if the consultant was discussing what she would have for lunch. With no support or guidance my husband, my daughter and I left and sat in the car crying looking at her feeling lost, helpless and nowhere to turn. I made a vow to her that day – I would do whatever it took to ensure my daughter had everything she needed to help her.

I experienced resistance from health professionals, school and local authorities. Every corner I turned was a battle and bit-by-bit I became ruthless and immersed in getting the job done.

Parallel to this, I buried myself in my job, acting assertively and professionally. No one knew I was struggling, no one knew I was hiding behind my professional label. The truth was I was depressed and lost my self-belief. I found myself in a cycle of constantly being signed off sick and then returning to work in the same toxic pattern. I was screaming “help me”. I was lonely.

Sadly, I hear the same concerns from mothers today as I had all those years ago. I knew I did not want other parents to feel the way I did. I don’t want parents to carry guilt, feelings of being trapped and losing their identity. I truly believe the impact on a parents mental and physical wellbeing must be taken seriously and not brushed aside.

Your daughter is now 20 years old. What is some advice you wish you had while she was growing up?

Gosh, yes it only seems like yesterday Dana was a baby, yet here we are today she is aged 20 and living independently in her third year studying Law at University.

“Hold people to account – question everything.”

I had to learn very quickly the terminology used when discussing her disability with health professionals. Importantly, I questioned everything that was discussed in meetings. I held individuals accountable – regardless of their profession.

“Gathering evidence in supporting your case is vital and worth the time and effort.”

Everything was a battle. When selecting a named school for Dana, I had visited a number of schools, yet the local authority at the time kept putting a SEN school on the statement. I documented the reasons for my choice of school and the reasons not to send to the SEN school. I had a report from the head teacher supporting my application and the local authority agreed with me. Gathering evidence in supporting your case is vital and worth the time and effort.

This was very much the case when we had to apply for PIP. We completed the paperwork and received an appointment for an assessment. Several weeks later, we received a letter to say PIP had been declined for a number of reasons, one being Dana was able to plan an unfamiliar journey on her own. The answer I was given for how they reached that conclusion was because Dana made eye contact with the assessor in the room. Within days I received a letter from Motability to return the car. I knew we had to appeal.

The truth was the assessment was flawed. We listed each question and gave evidence on how it was incorrectly assessed. This resulted in a 6-page document together with medical evidence and a detailed covering letter. We won our appeal, and ironically, they reinstated the Motability car at the same date so this part was seamless.

“It is always worth appealing. If you cannot cope with all the paperwork yourself, ask for help – for example from your Local Citizens’ Advice.”

About the services that Sera offers

Sera offers free meet ups either face-to-face groups or through virtual groups, designed specifically to give you practical support and the headspace to find yourself again. The meet ups are also designed to meet other like-minded parents to empower and support one another.

For parents who want a bit more help, Sera offers some additional mentoring services which include a preliminary 30 min complementary call.  She also runs workshop and training sessions in small groups.

If you have any questions or what to know more, you can contact Sera on sera@serajohnston.com or call 07747612510.

About Waving not drowning

Working Families runs the Waving not drowning network for parents of disabled children and carers of adults who want to combine paid work with their caring responsibilities. It provides a helpline, regular e-newsletters and occasional events and publications.

Waving not drowning also have a Facebook Group where carers or parents can get support, share their experiences, and ask us questions.

The helpline for free advice and questions about work and caring is 0300 012 0312.