A series of inadequate events

When I was young I loved the film Bedknobs and Broomsticks and would watch it over and over, even with the boxing day sale adverts on the recording. I knew every word. Sophia has enjoyed the film too and we have also journeyed together back into the land of Narnia. Even at three she knew the plot and all the characters in great detail. Much more recently and with unlimited television at her fingertips she has stumbled across a story of three orphaned children who come up against the most challenging of characters and environments but always themselves, show intuition, resilience and kindness.

At home Sophia is bubbly, chatty, assertive and bold and dives head first into fictional worlds where girls are strong yet caring, successful yet modest and undoubtedly ambitious. But out in the big, wide world; her character can be completely different. By the age of 6 we questioned why she struggled being in the vicinity of people outside of our home, why she looked at me to speak for her and why she would remain silent in social situations but then communicate her distress through behaviours such as running around the house or jumping on furniture.

I decided to approach the school nurse and attended a speech and language drop in session to voice my concerns. Initially I felt listened to and was grateful that there was a plan for an observation to take place in her educational setting. Following this, Sophia was discharged from the service. I was told there was nothing to worry about and no issues were raised regarding her interactions in the classroom. Find out more on my previous post here. At the time we were not entirely convinced but we didn’t know any different and didn’t pursue further.

We continued to struggle at home and transitions into school and home again became much more difficult. Towards the end of that particular academic year, Richard and I had looked forward to seeing our youngest take part in her ‘Sport’s Day’. It was a beautiful day and as parents and carers gathered, children began appearing with a skip in their step, a beaming smile and an eagerness to compete in a team. It was almost impossible to hide that our optimistic and jubilant faces suddenly turned to sadness as Sophia stepped onto the field.

Although she is strong and athletic and would have breezed through the physical activities, the social environment was an absolute nightmare for her. She stood in her line as directed, petrified of what she was being expected to do. As soon as the first race had started, she ran to us in tears; Richard picked her up and cue my self talk battles against what other people may think. “She needs to toughen up”, “she just has to get on with it”, “she’ll enjoy it”. No, Sophia certainly didn’t need to do any of these things! Sometime after this traumatic experience she was able to verbalise to us that she didn’t like all the parents watching her and we knew then that further explorations had to be made.

It was around this time that we began to explore the PDA profile of autism and my quest to read and learn everything I could about the characteristics, the challenges and the ways in which we might change our mindset to provide an environment to support our daughter. We had secured a referral to CAMHS (Child & Adolescent Mental Health Service) and a meeting with Sophia’s Headteacher and Senco and we were relieved that we were finally starting to move in the right direction.

Both meetings were in reality, emotionally draining and soul destroying. From thinking we had found the key to unlock the support and provision Sophia so desperately needed to finding that new barriers were actually being put in front of us. “PDA isn’t recognised”. We understood that this was the case in many Authorities across the country but the affliction many children face are very real to them and their families. A book that really resonated with us was “My Daughter Is Not Naughty” by Jane Alison Sherwin (2015) as this was exactly the assumption that we came up against.

When Sophia had had a particularly distressful day at school of masking, sensory overload and being misunderstood she would communicate this by digging her nails into my hand as we walked out of the playground. Yes this hurt, but it hurt more learning why she was doing it. It certainly wasn’t because she wanted to harm me or she was being difficult or she was trying to get her own way about something. It was a cry for help. When professionals you reach out to inform you that this behaviour should be met with punishment and enforced boundaries, I had a significant decision to make.

Like Violet Baudelaire, I made my choice and tying a ribbon in my hair I prepared to think hard and take action. I refused to accept that we shouldn’t challenge the system and that our daughter must tolerate and fit into it. To quote Lemony Snicket “just because you don’t understand something doesn’t mean it’s nonsense”.