In this story: PMLD / COVID-19 / Learning disability /

"When we went into lockdown it was no longer possible for us to visit Lauren nor for her to come to us."

“I am the parent of a 31 year old daughter with a profound and multiple learning disability (PMLD).  This means that Lauren is non-verbal, has limited understanding of many things, has complex epilepsy and needs support with all aspects of her life.  That sounds like a bit of a challenge but she is also full of life and fun and very much enjoys her life.  Her favourite activities are music, swimming, picture books, using her swing and being outdoors.

She lives in supported accommodation with three others and has a wonderful team of carers who not only care for her but care about her.  She comes to visit us several times a week and we love spending time with her.  When we went into lockdown it was no longer possible for us to visit Lauren nor for her to come to us.  Of course, it’s sad for us because we miss her and understand why that has to happen but Lauren won’t understand why her life has changed in so many ways.  She’ll miss her family, her day service, her activities and being out and about. I’m in frequent contact with her staff and they report that she has adapted surprisingly well and we speak to her most days on FaceTime.

My way of coping with my anxieties about Lauren is to keep very busy but the lockdown has left me with lots of time on my hands.  The first week I spent creating resources on Lauren’s tablet for her staff to use with her including updating her digital passport should she have to be admitted to hospital.  I added family photos and films of us singing Lauren’s favourite songs and games and photographed her favourite picture books with us reading the stories.

I’ve also been helping PAMIS, a charity supporting people with PMLD and their families and carers.  I’m enormously proud to be the Chair of their Board and have seen at first hand how much they continue to contribute to the Scottish Government’s understanding of this vulnerable and often invisible group of people.

I haven’t managed to clean out any wardrobes yet, but there may still be time….”

Photo credit: Paul Wenham-Clarke

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