Being off radar for over a year now I felt the need to remind myself how far we have come without ‘ support’ and although we are still, of course, made painfully aware of the difficulties Jake faces we also have a sense of autonomy which helps us to feel much less disabled. Being mainstream was incredibly costly and we spiralled further and further into needing more and more. It was a revelation to think that we could simply stop.
Since he was born Jake has had; neonatal intensive care team, several children’s social worker teams in two states and two countries, a lawyer, a children’s advocate, specialist paediatrician (USA ) early years intervention psychologists, full time one to one school support team, behavioural intervention team, educational psychologist, behavioural psychologist, specialist paediatrician (UK) and various casual carers and support workers. He was medicated at birth to ease withdrawal and prevent fitting and then again from 4 years to facilitate his inclusion in mainstream.
Now that we have stepped out of mainstream there is just us and an environment that suits him. I am, of course, often scared that we are being dangerously naive to think that this will be enough and I worry that we are somehow doing it wrong. However, just as often I am sure that we had no option and that this approach just needs a little faith, a deep breath and just a touch of anarchy.