Create more substantial support for parents with SEN children

Create more substantial support for parents with SEN children

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My wife and I have a severely autistic, non-verbal child. He is 6 years old. His only way of communication is by screaming at us, hitting us or trying to drag us to where he wants to go. He still suffers from incontinence. He is very physically able and an excellent problem solver but he also suffers from global developmental delay which puts his mental age at about 2yrs. He attends a local special school where they do an amazing job with him and he is making good progress. However, due to his lack of understanding of the world around him; his complete lack of sense or knowledge of danger and his sometimes superhuman strength, he is becoming very difficult to manage, even at school. Due to his physical outbursts which are becoming increasingly more frequent and difficult to predict and handle, he now needs constant 1-1 supervision all day. This is in a class of only 10 children with 5 adults. The problem however, lays at home, not at school.

Haydn lives with my wife and I, and his 2yr old younger brother, Harrison. He also has 2 older brothers (9 and 10) who visit regularly. Haydn needs a bedroom all to himself. There are no cupboards, no chest of drawers, no toys, no bed in his room. He has a mattress to sleep on, his pillows and his blankets. That's it. He used to have a chest of drawers but they had to be removed from his room because he climbed on them and they fell on top of him. Luckily, he wasn't hurt but it could've easily been a different outcome. He used to have a bunk-bed with a hammock underneath because he likes to swing and hang from anything that he can. This had to be removed when he swung from the light fixing in his room and ripped it from the ceiling. How he didn't electrocute himself is a miracle. He has broken the window handle in his room so it cannot be opened. He has broken numerous curtain poles, just through his needing fo swing and dangle.

Haydn also has 2 stair gates on his door, one stacked on top of the other and they are locked whenever he goes to bed. This is because Haydn wakes during the night and has the potential to get out of his room, downstairs to the kitchen or front room, or anywhere else in the house, and either hurt himself or somebody else. 

Our back garden is boarded up. This is because Haydn managed to escape last year. He managed to cross the main road outside of our house, ran into the next area of houses and was found on top of a 6ft high fence with a kitchen knife in his hand. He had no idea or comprehension of what he had done. He saw and opportunity and he took it.

Living with Haydn is very difficult. He is extremely violent towards my wife and his baby brother, who he pushes over and hits on a regular basis, all for no real reason other than him not understanding why something in the house has happened. He has recently started to bite me. I'm 6ft 3in and 15st, I'm not small, and even I am beginning to struggle with him and his physical outbursts.

My wife works at the local hospital as a housekeeper - she works from 3pm to 8pm, 5 days a week. I am Haydn's stay-at-home carer for when he's not at school and have been now for nearly 18 months, because my wife is unable to physically control him.

My wife is now at the point of wanting to leave her job to support me in handling Haydn. She has already given up her dreams of returning to college and university to become a nurse because Haydn's needs are so great. It might seem like a cliché when I say that he can not be left alone and he needs to be watched 24/7, but it's the truth. We have both given up our lives to try and help Haydn succeed and achieve his potential both socially, emotionally and academically. We do our best but it seems that that is no longer good enough for what Haydn requires.

My point is this - we have no support. Nobody wants to help us with Haydn because of his noise levels, because of his physicality and because they don't know how to. Nobody has any answers and nobody is forthcoming with any suggestions. As carers of our own children we should be able to access more help and support, not just for Haydn, but also for us. Our situation (though nobody's fault) is draining on my marriage to my wife, our financial resources and our own mental health and wellbeing. The only thing that has been offered to us is an after school club, one day a week. 

I'm sure I speak for other parents out there in similar situations when I say thay we need more help. We're not interested in just passing our son over to someone else, that doesn't solve the problem. We need emotional support; training and sometimes financial support. Life shouldn't be this hard and people like us shouldn't have to scream and stamp so loud just to get someone to entertain our problems.

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