Thursday 22 March 2018

Taking one step at a time

Norma Costello

Lisa Domican

Lisa Domican, above right, has two kids with ASD – Liam, 16, and Grace, 13, above left. Lisa's passionate belief in her children's right to dignity involved years of preparation, and a solid support network.

"I kept my head in the sand as long as I possibly could. I didn't attend the SPHE [Social Personal and Health Education] meetings in their school. I thought, 'Eugh!' whenever another parent told me that I needed to prepare for each stage five years ahead.

"I believe in taking one step at a time, because getting too far ahead of yourself can be daunting. I was very lucky to have both children in a school with programmes that focused on dignity and independence.

"Each programme was tailored to suit the child and my wishes were taken into account. They were so sympathetic and supportive, and, whenever I got overwhelmed, they guided me on.

"My 16-year-old son, Liam, had a programme which involved recognising the difference between public and private behaviour. It told him what was happening to his body, how it was all good, but how it was important for certain things to be private. Liam is very clever, so they used text-based worksheets personalised to his home and family, and the 'where' is as important as the 'who' when it comes to personal safety.

"Grace, who's 13, learns visually. Her personal-care programme started two years before her period actually arrived, and the behavioural director adapted an evidence-based system to her ability and needs. It clearly worked, as I was on the other side of the world visiting family when Grace got her period last February.

"What could have been a traumatic experience was, in fact, something she was wholly prepared for. She was as cool as a cucumber. Grace knew what to do, and so did my husband. Having this independence was invaluable.

"Instead of being a baby getting changed, Grace was able to take care of herself, with a little help from my husband, who is now an expert on sanitary towels! Because she was prepared, she could just get on with it, dignity intact.

"I don't think parents can just go along to a big group meeting to learn all they need in advance.

"It was only when the first signs of puberty appeared that it was possible for me to imagine my child as a blossoming adolescent."

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