If you’ve ever wondered what it must be like raising a child with autism, one UK mother has lifted the veil.
“Admitting that I’m scared of my son is almost impossible and no one knows all the details of our life behind closed doors,” Sarah* recently told The Guardian.
Sharing the story of their four person family through changed names, Sarah talks of her eldest son Robbie’s severe autism and the havoc it wreaks on all of their relationships, particularly with their younger son, Joe.
“Severe autism is difficult to understand if you don’t live with it. Everything we do is centred on Robbie’s condition, which is really hard on Joe,” the mum-of-two explains.
“Joe hates Robbie and won’t listen to us trying to explain how frustrated he is at being unable to communicate and that is why he’s violent and also self harms. The tension in our house now is constant.”
The changes the family have had to undergo over the years has also been dramatic, and offering Joe any semblance of a normal life has long disappeared.
"Our house is like a minimalist fortress with every window and door bolted, anything potentially dangerous shut away and even ornaments or pictures taken down now. The third time Robbie swept his hand across the mantelpiece and shattered everything on it I decided it wasn’t worth the bother. Robbie won’t sleep by himself and although David takes his turn at sleeping with him through the weekend, I’m completely shattered most of the time as Robbie wakes if I move at all. I can’t sleep properly and I wake constantly because I’m stiff and sore from lying in one position."
Sarah says the violence began three years ago, when a trip to the museum ended in her son breaking her nose and punching her in the head 'over and over.' "It was utter, humiliating pandemonium," Sarah admitted.
Then after some time the violence began again six months ago. Alone together in the house, Robbie followed Sarah around before attacking her without warning.
"He punched me over and over in the face, coming after me when I tried to get away and constantly hitting me as I tried to defend myself. Then he just stopped, sat down on the couch and started leafing through a store catalogue. I was scared to move in case he started again and just lay huddled on the floor till David and Joe came in. My lip was so badly burst I needed stitches and again my face was a mess."
Despite years of requests for assistance, it was only when Sarah presented to the social work department with her face bruised and bloodied that respite became available for the family. It's a story she says is all too common for many families with autistic children.
"When he was formally diagnosed I thought support would be put in place to help us all. I was really naive and assumed there would be help available as soon as I asked for it, but I now think something was only done because I turned up in such a state and they could see the damage he’d caused. I believe that they only worry that we might harm or kill him and have no concern that one day he might actually kill me. We now live in fear of that couple of days respite being withdrawn for any reason so I would never, ever rock the boat by asking for more, unless things got really desperate. There’s very little respite care available, even if you can afford to pay for it privately, which we can’t. I also know from people in the same situation that it’s impossible even to hope that Robbie will be able to move into some sort of long-term care. There’s no money and hardly any places. No one sees us as important," she writes sadly.
Now with two days of respite care offered every six weeks, Sarah says how they will survive as a family into the future is still uncertain.
"I live from respite to respite and I never think about the future because that’s the only way I can cope with this life sentence."
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