Tomorrow I will have two broken feet. I am having long overdue foot surgery. I put this off for many years telling myself that I am an autism mother and simply don’t have time to sit still. Plus, who would look after my children, especially Billy? Now, however, because I have waited so long to take care of this, of course things are worse and I face a two-hour operation and six weeks on my back.
It’s so hard as a parent or caregiver of a child with autism to look after yourself. We always put the needs of our children first–which is right–but here is the problem: if we don’t look after ourselves, then we are no good to anyone. How many times have we heard that? Yet, still we put ourselves last on the list of people to take care of. Many parents I speak to say they feel guilty if they take time out for themselves. I can understand this but from experience I know that if we don’t, then things will get a whole load worse.
When Billy was little and at his worst health-wise, I cracked big time and looking back I can see exactly why. I was getting little or no sleep, barely eating – trying to look after a six-year-old Bella, five-year-old Billy and three-year-old Toby. There were very few answers then for Billy’s deteriorating health. His hair was falling out, his tummy was hugely bloated, he gave out high pitched screams, was banging his head night and day, and had horrendous diarrhea like you wouldn’t believe. I was tired, very tired, but I kept going on and on.
One evening after a particularly hard day, Jon walked in the door from work and I walked out taking nothing with me. I got on a train bound for Dorset and sat with my head in my hands between two carriages for the two-hour journey. I eventually arrived at my mother’s house where I sat by the radiator in the kitchen for three days and said nothing. My family then came to get me and before long I was back to normal. But the really scary thing is how I behaved, totally out of character and totally off my rocker.
It was, I now know, a breakdown. I had physically and mentally taken myself to the limit and when this happens things start to go horribly wrong. So, if you are reading this and know you are neglecting yourself, then do something about it. You don’t want to be the mad radiator hugger or facing an operation for something that could have been fixed easily years ago just because you didn’t give yourself the important care and attention that we all need as autism parents.
One more thing: while I was on the train all those years ago, a well dressed man came and crouched down beside me. He told me he wouldn’t leave me until I got to my destination. He could see I was in trouble and calmly talked me through a few things. He stayed with me until my mother took over. I have no idea who he was or where he was going and I never saw him again. But, thank you, whoever you are for supporting an autism mother who had lost her way.