About Us
I became a mother of a little girl at the age of 37.
Originally from Cape Town, I left for new adventures in my twenties to Edinburgh, Scotland where I lived for 10 years and spent another 10 years in Bristol, England.
Until becoming a mother, I was enjoying a career in financial services and for many years I felt fit and healthy, I was enjoying life and felt valued and rewarded for my efforts at work.
I was sadly a perfectionist and a people-pleaser – only now realising that I was wearing any “mask” that was required. 17- years after the start of my career, I was kaput which was not helped by the immense job stress I was under post the 2008 banking crises. I was burnt out, disillusioned and unmotivated and was therefore more than pleased to have a break and start a family with the idea that I’d go back to work a few years.
Before long, I started to feel uncomfortable in my newfound freedom and I spent my days, planning our impending wedding and making never-ending to do lists, so that I could prove to myself that I could still accomplish and somehow boost my dwindling self-worth.
Conceiving took 3-years when unexpectedly and in the throes of a trip to Australia we discovered I was pregnant. By then we had already arranged IVF treatment which we were to commence upon return. I was bedridden for what seemed like the hottest summer ever in England, but miraculously two days before our wedding, nausea subsided and I was ready to walk down the aisle, albeit 4 months pregnant. My pregnancy continued without concern, and I felt happy and healthy throughout.
Our gorgeous little girl was born without complications, and we proceeded to face the new chapter of life with my anxiety levels never higher than at that time. I remember thinking “I will not worry again”.
I threw myself into parenting and toddler groups plus the obligatory weekly sing-alongs at the local library. I soon noticed that our little girl was different. She didn’t crawl and she wasn’t interested doing what was asked of her or playing with children or objects – she only wanted her mum. Because she was the only child, I convinced myself that perhaps it was my parenting style; too smothering or too anxious. I tried not to worry too much although I did have a feeling something was amiss.
Our toddler became more demanding. We put it down to terrible – 2’s, 3s, 4s, and so on, but it didn’t dissipate. I would describe her as being “particular”. She preferred certain foods on certain plates, nothing wet or lumpy, detested being touched or hugged, disliked wearing clothes, and watched the same films on repeat. She would arrange and re-arrange her toys in lines, and we found ourselves negotiating with a little adult rather than a 3-year-old over every request especially leaving the house.
When she started school at age 4 (yes, I couldn’t wait), all went well so we thought. Feedback was that she was quiet; really? She didn’t stop talking at home, she was a model student however needed to be coaxed to get involved in group activities. She’d usually decline and prefer. She didn’t make many close friends and that continued throughout her school career, and she didn’t seem to mind either.
Weekends were slow and she was demanding. She couldn’t play alone, and we had to tag team to entertain her. I was her full-time help from the moment I collected her from the classroom until I would drop her off the following morning. I remember carrying her to and from school until she was 6 years old and was too heavy. She flat out refused to walk. Her legs apparently didn’t work because at school she had to “work too much”. I resorted to driving the few short blocks much to the dismay of our neighbours and school parents. Again, I questioned why it was so hard to have a child and to be a parent. I didn’t see other people I knew struggling as much as I did.
She refused to do any homework – EVER. “School was for school and home for home” and “lessons were boring because they repeated themselves a lot”. Feedback at every parent-teacher meeting and report was that she was doing well, and we had nothing to worry about. It wasn’t until her Year 1 teacher called me aside and asked if our little girl had any hearing difficulties, because she would appear not to hear or listen or even “zone out” during lessons. She went on to describe our little girl as a little quirky. The penny dropped without her having to say another word. I was so relieved someone else spotted it!
So began our journey into the very little-known world of autism. It took us a year to get a diagnosis of ASD (autism spectrum disorder) with high anxiety for our daughter as I was fortunate enough to have access to private health care. Waiting times on the National Health System (NHS) in England was at least 24-months +.
Saying this, I believed she had an atypical form of autism (i.e., she had a good imagination, role play was her favourite past time, she was chatty although about topics of her choosing, she made eye contact etc.). This led me to believe she was more aligned to Pathological Demand Avoidance (PDA) or Extreme Demand Avoidance (EDA). A book that helped me fight for her diagnosis because my child ticked every box was My Child is not Naughty written by Jane Sherwin. It took a further two years, many training courses and meetings before we have been able to secure the diagnosis of PDA/EDA.
However, during this time, her behaviour was deteriorating rapidly especially outside of school. Any mention of school, homework, or any suggestion of leaving the house was always met with protests and acts of punishment (towards us). She began displaying rituals and ticks; signs that she was anxious and stressed. All this was astonishingly well concealed from school which must have taken copious amounts of energy out of her.
This sadly continued until I realised that mid-way through Year 3, she had autistic burnout. She was barely leaving her room and wanted to stay in the dark with the curtains drawn. We were late for school almost every day, and she had to apologise to staff and stay in at break times to catch up. She was barely eating and moody; her ritualistic behaviour was excessive. The extreme amounts of energy taken to appear “normal” and fit in at all costs was taking its toll on her mentally and physically. This plus struggles with verbal and social communication were too much. Where had our little girl gone? What did we do to her?
With the help of a senior PDA consultant, from Help for Psychology, we decided to remove her from school two months before the end of Year 3 school year to allow her to recover. Additionally, we decided, albeit drastic, to relocate from Bristol to Cape Town for a few years. Here we found phenomenal agencies that support neurodivergent people.
Since obtaining her first diagnosis of autism in 2019 and us suspecting PDA, our parenting style has evolved radically. We sought lots of advice via counselling, coaching, and training courses about how to navigate the world of autism and PDA. We now treat her like a university student. We keep demands low, there is no hierarchy, we treat her fairly, provide choices and the necessary information so that she can make an informed decision. We treat her challenging behaviour as panic attacks (which usually occurs because of she feels threatened), give her space to regulate and have learned not to take her insults and poor language personally – it come from a place of pure fear. She’s rigid (with her thinking) and is mostly setting the world to rights albeit uncomfortable and cringeworthy at times. Her defence is “Well I’m on telling the truth” At which point I am looking for the nearest exit.
A counsellor based in Ireland and The PDA Society in the UK were fundamental in helping us understand her better. We still receive judgement about the way we parent, however we have compassion towards the unawareness of others, and we are happier than we ever have been.
Knowledge and support for autistic people in Cape Town is world-class, especially that provided by the Neurodiversity Centre. Our daughter regularly visits a therapist, and she loves it as she can take her pets with her. She is enrolled at a UK based online school and has started learning from home with the help of a tutor a few hours a week (obviously what, when is all on her terms) and is performing well is her assignments. There is very little pressure from us.
The relocation and removal of her from traditional school has allowed all of us some space to recharge and settle into our new life, even flying over our precious English bulldog to join us. Our daughter is so much more relaxed, and we are finally getting to know her better. She’s hilarious, sassy who is loud, happy and adores animals is slowly expanding her world as she chooses to leave the house more and more.
Our main aim is to make her feel safe and loved everything else comes second and then we get to see HER.
Our journey with our PDA’er continues and I am aware we will have challenges in our future. I am committed to learning as much as I can so I can share it with you so that your journey is less lonely.