Supporting Lianne

Perhaps the greatest worry for parents of a child with special needs entering adulthood is what will happen when they aren’t around to care for them any longer.

That was the case for Lynn Archer, whose daughter Lianne was born with Smith-Magenis Syndrome with symptoms including educational needs and behavioural problems. To compound this, Lianne also developed epilepsy as a teenager.

In later years her parents started to think about independent living as a way forward for Lianne entering adulthood and this has now she lives in her own apartment, supported by her parents and a dedicated team from Caremark Redcar and Cleveland.

“It was a difficult road to begin with but has been worth it,” said Lynn. “We have peace of mind now with regard to the future after we are gone.”

After school, Lianne attended residential college, returning home regularly and enjoying visits from her parents, brother Gordon and sister Emma. Lynn felt this showed Lianne was able to live her life without mum constantly at her side, however when Lianne left college, Lynn didn’t think she could cope completely on her own and she moved back home.

The care package drawn up to support Lianne included home care support, with carers visiting during the day to help Lianne whilst her mum was out at work.

“This proved very difficult as Lianne would suffer a meltdown when I left and I would be crying on my way to work not wanting to leave,” said Lynn. “My husband and I were getting older and finding it more and more difficult to cope.”

Lynn always remembered a conversation she’d had with with a social worker when Lianne was young which convinced her that independent living would be needed at some stage.

“They had been dealing with another case where the parents had died and the child found it very difficult to cope with the loss and then the transition to living without them,” said Lynn.

“The advice was, if you can help it, never leave a child facing that situation, I also didn’t want my other children to have to pick up the pieces and so knew we would need to act when the time was right.”

So, ten years ago, Lianne, then 29, moved into her own two-bedroom apartment with a team of three carers taking it in turns to live in the flat with her.

“We are so grateful to have a lovely group of carers who we can trust and feel confident with,” said Lynn.

“Also, the Caremark staff generally for their part in setting the care programme up and keeping it running smoothly over the years.”

During the day Lianne enjoys an active life, she likes walking and is a member of various day groups. She enjoys music, dance and karaoke and at home helps with the housework and preparing meals. She speaks to family regularly and each weekend returns home to visit them and enjoy a Sunday dinner.

During Covid Lianne moved back home for three months and then when lockdown was lifted she returned to her own flat with the help and support of the Caremark team.

“This showed she liked independent living and wanted to return to it,” said Lynn.

“I’d never thought she would cope with the change but she has, just like any other young person. We have such peace of mind knowing there is always someone there if Lianne needs help and there will be after we are gone.”

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