Saturday, 5 March 2011

A sibling writes from 2006

A Sibling's story from 2006
My brother is autistic. Going anywhere always tends to be planned around his needs. One favourite trip when I was younger was to Legoland, Windsor. My brother could not go because he would not understand the difference between a lego kit at home and the fixed display at Legoland. His stay at Maplewood meant I could go.

Another time my mum took me on a trip to London. But mostly it means we can just do ordinary things. It has helped me over the years to have some time where my mum has been able to attend fully to my needs without constantly having to check the whereabouts and antics of my brother.

Even though I am older I still like to have quality time with my mum. If there is ever anything which requires concentration -filling in forms, discussing coursework, repairing my computer, discussing my future -this is always reserved for when Conor is at Maplewood.

Having a regular, reliable schedule of care planned for my brother which is substantial enough means I know I can look forward to a time when my mum is at peace free from the repetitive questioning of my brother, able to get the significant rest she needs to be able to help me with these things, unstressed and with a head clear of the worries of my brother . I am and have always been very much confined to my bedroom because my brother very much dominates the rest of the house with the mess and noise of a toddler-even at 15.

At 15 years old my brother cannot be left to look after himself . He has no road sense and no stranger danger. He has the care and supervision needs of a small child. All the doors and windows have to be kept locked in order to keep him safe.

When I was younger I had to ask for the doors to be unlocked so that I could play out. If my friends called to play they had to wait for the doors to be unlocked. Sometimes they had gone by the time we got to the door. There was no freedom to wander in and out for me or my friends like my other friends did.

I have had a set of keys for my own use for many years. Sometimes I would forget where I put my keys and my brother would escape in the early hours of the morning and has had several near misses with cars. It was and still is a huge responsibility and made me very anxious. We all have to sleep on our bunches of keys and know where they are at all times so that we know he is safe.

My brother being out of the house at Maplewood meant that I had just for a short while the freedom to go in and out of my own home with my friends that other children take for granted.

His communication difficulties mean that I have had to make lots of extra effort to communicate with him so that he understands and I can understand him. I have had to help teach him how to do things and have had to constantly explain to new friends what is wrong with my brother. All that is tiring. I need a break from all that.

I am at college and I have a part time job. My job involves me getting up very early in the morning at weekends 5-6am which means I need to get a good night's rest but my brother doesn't understand that other people can't sleep while he is being so noisy and running up and down stairs at all hours. I had to go through all my SATs tests at primary school and exams at high school and my GCSEs living with such a difficult brother.

I have had to accept ever since I can remember that my brother's needs always have to come first because he cannot look after himself. Just for two days/nights in every 14 it's my turn.

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