Siblings getting used to things they shouldn’t have to

The bell rang for the end of the school day and like every other child my daughter changed to her outdoor shoes, put on her coat and headed out the door of the school. She stopped and looked around then waited.

There was no-one there to pick her up again.

She went back into school to wait at the office.

She waited. And waited.

Finally, her dad came stressed and in a hurry.

‘I got caught in traffic and couldn’t call sorry. Your brother is back in hospital again.’

Speedy dinner, quick change of clothes, long drive in the dark and rain, homework done on the floor of the ward with machines bleeping and buzzing around about then the long drive home with the other parent at the end of the night.

Mum held her before she went to sleep silently praying she’s ok despite the chaos.

‘Mum it’s ok. I’m getting used to it now.’

In our world emergencies happen too often.

If I got her excused from homework every time her brother was sick, her dad’s depression was bad or I had to rush to see to my elderly mum again then I’d never be away from the school.

It’s not ideal but it’s the harsh reality of life with a complex needs brother and a family where everyone except mum has additional needs.

Unsurprisingly she has her own needs too and these too often get pushed aside for yet another ‘emergency’.

Less than a week later and her brother is now home and life should be more stable.

Yet all it takes is a hair cut, a change of TV schedule, an unexpected visitor or something not working and things spiral quickly again.

Peace turns to violence, anger, upset and danger quickly. This is the reality of a brother with severe autism, epilepsy and learning disabilities.

Unpredictability is the only predictable thing.

Mum once again holds her as she drifts to sleep stroking her hair and promising ‘tomorrow will be better’ and once again the little voice murmurs back: ‘mum, it’s ok. I’m used to it now.’

But that’s just it. No-one should be ‘just used to it’; not a parent, or grand parent, or a sibling.

I can’t change the circumstances but I need her to know that she matters too, that this IS hard and that there is support.

Otherwise my child will grow up thinking it’s normal to do homework on a hospital floor, it’s normal to hear screaming every night and it’s normal to be going to bed upset.

The intensity of life like this shouldn’t be normal for anyone, let alone a child.

My fear is my daughter could become immune to things that she should never be.

She could potentially ‘get used’ to being bullied or beaten up by a future partner or living a life in crisis because her childhood has taught her that these things are things to ‘get used to’ and just accept.

Sometimes we have to make difficult decisions as special needs parents.

We can spend our lives prioritising the needs of our disabled children or even our own needs thinking siblings are developing resilience and independence when in fact they are internalising and ‘getting used to’ pain, suffering and instability.

Both my children need me but there are nurses, respite workers, teachers and carers who can and will support my son.

For the sake of my daughter I need to utilise them as much as I can.

Maybe then she will get used to me being there when that school bell goes again at 3pm and sitting together at the kitchen table to do her homework and reading to her before bed in peace and quiet.

It’s those things that other children her age are used to and those things she should be used to too.

About Miriam Gwynne

Full time mum and carer for two truly wonderful autistic twins. I love reading, writing, walking, swimming and encouraging others. Don’t struggle alone and always remember someone cares.

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