I was going to be the perfect parent, follow every word supernanny said, have routines and strategies performed by the book. I would do cooking and homework with my child, teach good manners and compliance. My child would never be rude or thoughtless or indoorsy or a fussy eater, after all I had been a nanny, a TA and a support worker, I knew how to handle people and children most of all because I love children, it would be a breeze…..
You know the saying ‘Life is what happens when you make other plans?’ Well life happened in a big way. If you believe in karma then you might say I asked for it. I judged. I prided myself on being non judgemental but boy how I judged. I judged the lady who use to help me with my horse who’s son had ADHD for going out ‘too often’ and for losing her patience with her child, I judged people who let their children play on screens, or didn’t make them eat their greens and most of all I judged my friend who took her children out of school to home educate. I kept it to myself but never the less it was there a huge disapproving ‘tut’ waiting to come out of my mouth at any moment.
So when my strategies floundered, my son did not meet his milestones, was not compliant despite my consistency, did not respond to the naughty step, got into trouble at nursery, ‘failed to thrive’ at school, it was my turn to be judged not least because the most extreme of his behaviours happened outside of school. I did all the right things of course, I asked for help, spoke to the school, filled the house with books and flash cards, signed him up for clubs, followed all the child care guros. Despite all of this I was labelled as a bad parent, I was sent to parenting classes, had a behavioural specialist coach me and so on. Having been unable to find any thing wrong with my parenting my mental health became the target, I was over protective, a single mum, neurotic, over anxious and too soft.
By this time I had started to recognise some of my sons behaviour as autistic traits as did some of my friends and family, something I brought up but that was pooh-poohed by the professionals dealing with my son despite a history of autism in our family. Around this time I also realised he was, like me, dyslexic. I started to look into these things and eventually at 7 he was diagnosed as dyslexic after a long fight to get the school to test him. At 5 he was referred by my lovely GP to be assessed for autism, he got the diagnoses a few weeks before his tenth birthday.
This was after two years of being in limbo with a ‘working’ diagnoses of ‘‘profound anxiety with autistic traits’’ due to his ADOS assessment reaching a conclusion he was autistic in all but the observation at school section where he had presented as ‘’too social’’ to meet the diagnostic criteria.
It was only after I stumbled across the term PDA (Pathological Demand Avoidance) on the National Autistic society’s website and emailed it to the ADOS assessment team that all the pieces fell into place. However, I was told my area didn’t recognise PDA as a presentation of autism, and not to mention it but to stick with the formal diagnose of ASD (autism spectrum disorder), an unfortunate fact that lead me to a situation of being accused of medicalising my son and having a Social services visit later when I felt compelled to discuss PDA as general ASD strategies differ significantly from those for PDA and the ASD ones were just not working.
Anyway….To cut a long and painful story short my son became a school ‘refuser’, highly anxious and was not coping with the school environment and not having the appropriate support for his needs. After ten months of no school or learning and barely leaving his room I decided enough was enough and de-registered him from school against all advice and under a cloud of judgements. I enrolled on a workshop with the PDA Society and implemented a no demands strategy based on what I had learned. I finally went with my gut and thankfully it paid off, so much so that I have since had professionals telling me what a great decision it was.
I know however it is just the start of an enormous learning curve that me and my son are now travelling together, in collaboration. Oh and for the record, the best lesson that I have learned to date, is not to judge!