It’s not Failure to Need a Break
Are you a parent? Have your children ever been out to play themselves, played alone in their room, had a sleepover, went out with a relative?
For me none of these things are possible.
My son is severely autistic.
He is ten years old but still fully incontinent and has no spoken language. He is developmentally around the age of 12 months and he needs round the clock care.
He doesn’t have friends to play with either in his own home or elsewhere. There’s no sleepovers in his world, or play dates, or staying with grandparents.
His day is the same every day starting very early and finishing late with care even required through the night.
He self harms, he has challenging behaviour, he has a very rigid routine that can not be broken.
His communication is very unique and requires you to understand him deeply to have any idea what he needs or wants. He can not ever be left alone, ever.
It’s intensive.
It’s 24 hours, 7 days a week.
Other than when he is at school there is no break or let up from it.
When he is out I have vital paperwork to complete, sleep to catch up on, and food to prepare (because cooking with him here isn’t safe or possible).
Like every other parent I also have a level of housework I need to do just to stay above water.
I am permanently exhausted. I have been doing this for ten years now.
What makes this even more intensive is my son is not my only child. He has a twin sister who has her own needs which I must meet too.
Homework, social activities, personal time, bedtime stories and time to just ‘be.’
She cares for her brother so thoroughly, so intimately like no sister should have to. She helps him eat, reads to him, dresses him, calms him and communicates with him in a way only a sibling can.
In return she is screamed at, attacked, ignored or has a door slammed on her. She’s kept awake by his noise, restricted where she can go due to his needs and socially isolated due to his autism.
I can’t be in two places at the same time, no matter how much I want to.
So, three years ago I made a phone call to social work. I was in burn out, my family were in crisis. I needed a break.
Assessment was intensive, intrusive and exhausting. It almost broke me more than the care itself did.
It lasted for two full years until our case went to a panel of strangers who finally accepted these four vital words:
They need a break.
I can not tell you the level of guilt I felt the first night my son went to an overnight respite centre to give us all a break. I felt I had failed him. I felt I had let him down.
Now respite is a ‘regular’ thing for us. Isaac loves his overnight stays, like any other child might love staying with their friends or family. He finally gets his ‘sleepovers’ that other children take for granted. The staff are highly trained, attentive and loving.
Isaac gains so much from going.
Naomi gains from him going.
I gain from him going.
Asking for a break isn’t failure. Saying you need a break is not admitting defeat.
Actually asking for a break is showing courage, strength and wisdom.
It’s recognising that you are human, tired, working at less than your best. Asking for a break is protecting your mental and physical health and creating an opportunity for siblings to stretch their wings and fly.
Think of it this way: we have laws to state how long a paid employee can work without a break. We have laws to make sure employers give adequate holidays to all their staff.
Full time caring is a job that requires regular breaks, it’s just the law has yet to meet that need.
It’s not failure to ask for a break. It’s not failure to need breathing space. It’s not failure to want respite.
I only wish I could ensure everyone caring for a special needs child got that break they need and so desperately long for.
Written by, Miriam Gwynne
Miriam, a woman of faith from Scotland, is mum to autistic twins and wife to an autistic husband. A former teacher and business manager she now cares full time for her children while writing for her own blog and other sites including firefly, family fund, autism awareness dot com and Huffington post. Miriam’s writing is read in over 60 countries and she has appeared on national radio and television in her quest to make the world more accepting and understanding of her children and husband and the millions like them.
Her own blog can be found at www.faithmummy.wordpress.com. Or you can find her on Facebook and Twitter.
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