I have been wanting/intending to write a blog for some time now and after seemingly waiting for the ‘right time’, a time that I felt I had the emotional capacity from which to draw upon, the physical space, some kind of quiet. . I realised that time would never actually come. Thinking about this in a more coherent context, wouldn’t it have been better to have not waited at all and written while my thoughts and emotions surrounding the issue of being a parent of an autistic child were brimming with intensity and rawness?
So here I am the mother of a little boy diagnosed as being on the autistic spectrum four days after his fourth birthday. That little boy is now nearly six, and the intensity and rawness remain; but perhaps have been channelled into something different. These last two years in some part have felt like a revolving door of meetings, endless online research into support services available, snap shot conversations with teachers while my children pull on my arm or interrupt the flow of conversation because they just want to go home; and phone calls with people who are effectively strangers as I divulge the precious intimacy of our lives. I remember hearing from other parents that to know that your child is ‘different’ is to feel and live through a kind of grief. Grief for the child you thought you would have and grief at being wrenched away from a path more familiarly trodden and taken to one that is full of uncertainty and what feels like less hope to be had. But there is the question, what right do we as parents have in outlining any form of direction in which our children may travel? After all we do not have ownership of our children, we have them to guide and nurture but their lives are their own to map out and steer. Hope sometimes only seems to be invested in achievement, and achievement of the mundane and stifling ‘expected’ development. My hope for my child has changed its course of direction in many ways and is invested not in ensuring he can blend in nice and neatly, but in wanting his perception of the world to be understood and celebrated. His view often overwhelms me in its beauty and sharpness and he has the ability to make me laugh out loud and cry all at the same time as I meet his wide eyed and gentle gaze.
That grief I was told about certainty does linger, but the presence of it sometimes fades into an unreachable place as you throw yourself into the endless labourious tasks that you find yourself assigned to; but that is the sticking plaster that keeps it contained. Then there are days when the ferocious intensity of it will be released and it submerges you and takes its grip that is hard to shake off. Often exacerbated by exhaustion, or a remark from someone, or seeing another child do something that your own cannot yet do or might never do. It’s so easy to become immersed into a world where you are bombarded by what is seen as the ‘normal’ reaction or way to behave. But why can my child’s responses which are often so starkly logical not be seen as yet another way of being? My son’s filtering system in his brain does not function how it should. This the system that enables you to discard unwanted and unnecessary information, so his brain can become flooded and overwhelmed by noise and sensory input which often causes pain and distress. However that is his normal and he has never known any different from the day he was born, but through that adversity he has learnt to adapt and adopt coping strategies.
When the anxiety that impacts his every day life takes its most aggressive and cruelest form, it’s hard to watch his little body fight this demon that grips him with a tightness taking its hold for a while. His cheeks are damp with tears and his face is contorted with a look of searing pain that is breaking. I try to let him know I am there and that he is ok just by my quiet presence or stroking of his back (if he will let me) as we wait for this all consuming storm to pass. It may sound extreme but this is reality and a realness that is sewn into the fabric of what it is to parent a child with autism in whatever form that may take; but often something that is unknown or hidden from the outside world. A simple day in which my son has to conform to this confusing and unrelenting world is far more draining and exhausting to him due to fighting these perceived barriers and that to me is amazing and beautiful and I like that kind of normality.