My daughter was a very happy and contented baby - she fed well, slept for hours and rarely cried. At the age of eighteen months, however, this all changed. She began to spit, bite and have extreme strops over minor issues like getting dressed and getting into her car seat or push chair. We put it down to the terrible twos, but as she got older the problem didn't go away.
When she started school we breathed a huge sigh of relief, believing this could be a pivotal moment in her development. We hoped that we would begin to see the end of her challenging behaviour - how wrong we were. Within a few months she was attacking staff and children alike, completely trashing the classroom, and her behaviour was becoming increasingly unmanageable.
It was like she needed to have complete control at all times over her environment and everyone in it. Without this, her behaviour would spiral, and she'd have meltdowns that could last for hours.
Despite the use of traditional behaviour management - rewards, consequences, praising good behaviour and duly ignoring bad behaviour - things continued to rapidly deteriorate. Mollie was excluded from school on many occasions, banned from taking part in school plays, placed on a part-time timetable and was unable to go on school trips without either myself or my husband to support her.
At only six years of age, she started completely refusing to go to school, after many months of arriving at school later and later due to the extreme panic that going provoked in her. It was eventually agreed by everyone involved that we should remove Mollie from school, and seek a more suitable and specialised placement. Mollie's precarious extremes of behaviour meant that life at home was hell on earth, and my own mental health and emotional wellbeing were crushed.
At around the same time, Mollie was diagnosed with Asperger's. However, I didn't feel that this quite fitted. The recommended strategies for a child with Asperger's did not bring us any positive changes in behaviour, either. Then, at the age of seven, she was diagnosed with pathological demand avoidance syndrome. As the name suggests, the overriding diagnostic feature for individuals with PDA is an anxiety-driven need to avoid the demands of everyday life to an obsessional level.
For the next few years I spent every day experiencing physical and verbal abuse from my daughter and walking on eggshells in order to try to avoid as many explosive outbursts as possible. The flexibility required by parents living with a child with PDA is astounding. During this time, my confidence was completely broken down - I was, for all intents and purposes, living in an abusive relationship with my daughter. Five years on, the emotional scars and long term effects of those years still affect me.
This emotional strain came from more than just my daughter - because PDA is a hidden disability, parents are often unfairly blamed and judged for their child's difficulties. There is a lack of awareness and acceptance among many professional circles, family, friends and the general public. Of course, this continual battle for acceptance - trying to get professionals across health, social services and education to take you seriously - is also a huge factor in the erosion of parents' mental health.
My daughter is not naughty and never was. However, she was severely misjudged and damaged by the wrong approaches from many in her early years, including myself. Looking back I feel truly awful for the way that I and others tried to change Mollie. I have had to let that guilt go, though, in the knowledge that we were simply doing our best, with no real understanding of what was driving her behaviour.
Using PDA strategies and providing Mollie with the correct environment did eventually begin to pay dividends. However this was a slow process - nothing happened overnight. Receiving a diagnosis was so very important for all of us, though, because it signposted us to the correct support.
Mollie and I now have a very close and loving relationship that is based on mutual respect, and we are also developing a friendship. This has only been possible by understanding PDA and by allowing her the freedom to grow and to learn within an environment that she feels is safe, comforting and strong. We no longer experience the meltdowns or violent outbursts, and our lives and hers are now worth living. This is why awareness and acceptance of this complex condition is so very, very important.
I often wonder how much earlier this could have been achieved if only we had received an earlier diagnosis, but I try not to dwell on the past. I can only hope that other children are saved from this by sharing my story, so that Mollie's experiences have a purpose and can be used for the greater good.