It’s been long, it’s been round the houses but at last it’s here! 2020 is the year I will birth an idea I had many years ago but wasn’t in a position to pursue. S.E.N.D. in the Clowns is the name of this idea, which presents as a book but it is much more than that. It’s a love letter to myself, acknowledgement that I have overcome adversity and damning statistics as a single, black mother to a black boy with autism and ADHD. It’s a love letter to my son, who has experienced years of denial of his ADHD, and autism, with focus instead on my poor parenting. It was assumed his issues could only be social, emotional or behavioural. But I fought back, through statements, then EHCPs, endless assessments, interviews with professionals, meetings with headteachers, multiple exclusions. Aged 13, my son was facing the prospect of school number six. Proof that ‘early intervention’ is not a experience all children enjoy.
It was an isolating journey but now we’re ‘out’ it seems there were many of us in hiding! Parents on the edge, who aren’t shouting from the rooftops, they’re too bewildered to do anything that energetic. I’m used to standing out in a crowd, maybe it’s only child syndrome or being a ‘out there’ in my fashion sense or just being myself in a world that seems to value conformity. But you can’t help who are, or the skin you’re in.
At the red brick university I attended, I was used to standing out as shy black girl born and brought up in Birmingham. One male admirer even said he was happy to take me out but I couldn’t be known as his ‘girlfriend.’ In the frantic and pressurised world of PR and communications I entered after graduation, I was often the only black female in the agency meetings – the wonderful Elizabeth Bananuka has done amazing work to redress the balance.
But my biggest feeling of being out of step with my peers, was when my son was diagnosed with autism and ADHD, aged nine. Because most of his primary years were spent in conflict with teachers, we arrived at autism and ADHD in a haze of shock with very little information. Negative behaviour patterns were already established and I was emotionally bruised. Knowing I was raising a child with neurodiversity, required an overhaul of my parenting approach. Actually, an overhaul of my whole life. At a particularly difficult period, it became clear I could no longer continue to work full-time. Our livelihood was at risk, but so was our mental health due to years of intense scrutiny and constant change.
I’ve always loved poetry and writing so I kept diaries to make sense of my life during the difficult days. The initial diagnosis came in 2012, the same year I lost my mother and my grandfather, two key family members. I was bereft and poured my heart into a highly personal poetry collection, entitled Songs of My Soul to try to make sense of life, love and loss.
Whilst the poetry poured out of me, I kept notes of the conversations I was having, with teachers, SENCOs and other health professionals to try to make sense of it all. A difficult transition to secondary school resulted in yet another change, followed by a missed academic year due to another diagnostic review.
So the idea began to grow. Then it become an obsession, as I poured over autism research studies and articles, immersing myself in the mysteries of the human brain, psychology and what it means to be a human BE-ing. I found a sort of peace. A deeper connection with myself and my son. The story was writing itself. But first I needed to test the idea with parents – how many others had gone through a similar experience? Did they feel lost, confused, ashamed, sad about what was happening with their undiagnosed and newly diagnosed child at school?
More next time…/
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