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'My son's understanding of the world is based on routine - sudden change is not good for him'

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Jane Johnstone with her son Evan (18). PHOTO: MARY BROWNE

Jane Johnstone with her son Evan (18). PHOTO: MARY BROWNE

Jane Johnstone with her son Evan (18). PHOTO: MARY BROWNE

Mother and full-time carer to two sons with autism Jane Johnstone relies on daycare to fulfil her eldest son's social needs and for her to have a life outside the home.

Jane, from Bridgetown, Co Wexford, is one of the many carers across Ireland who could be affected by the nurses' strike this week.

Last night, she was still uncertain as to whether Evan could attend his day care centre. She expects to be told today whether the centre will be shut on strike days.

"I have a great respect for the work nurses do with my boys - both Evan and Daniel (14), who's still in school.

"I get where the nurses are because they need the Government to sit down and talk with them and I say to Government and the HSE 'sit down with the nurses, or this will escalate things and affect people like me'.

"Carers are the first people who should be kept informed of what's happening with the daycare services we rely on because we have to sort out plan B, if there's a plan B.

"Evan has an intellectual disability, autism, he's non-verbal and partially sighted.

"My son's whole understanding of the world is based on routine and it's not good for him or me when something is changed out of the blue.

"He's used to routine and he's 6ft 3ins and double my weight. He can get angry when routine is changed because he doesn't understand.

"I try to minimise that by preparing ahead for any changes, so that I can talk him through it in advance, over time.

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"But information needs to come to us, to be able to do that.

"However I support the nurses in their campaign.

"They're amazing people, devoted to their jobs, but they need the Government to listen to them."


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