Haven Centre in Inverness is lifeline for parents with children with complex needs
Robbie Burgess, who has a dual diagnosis of Down’s Syndrome and autism and is non-verbal, is about to celebrate his 16th birthday.
Since the Haven Centre for young people with complex needs opened a year ago in Inverness, it has been life-changing for him and his family.
Two nights a month he attends the centre suites with his “one-in-a-million” carer Ben Ferguson.
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His parents Robert and Emma Burgess, also have a son, Ollie (12) who has a diagnosis of autism.
“It's really hard as both boys have their struggles and are nothing alike,” says Emma.
“Robbie is a happy boy some of the time but he faces many challenges not being able to communicate his needs.
“This is a huge stress for him and for us as a family as we are his everything. His voice, decision-maker, 24-hour carer.
“Robbie doesn't sleep very well and can be up for several hours most nights and he needs one of us to be in with him or the whole house is awake and we need to keep him safe.
“This has a huge impact on the whole family.”
Emma, who also suffers a lot of pain due to fibromyalgia, had to give up her much-loved job as a receptionist/phlebotomist at an Inverness GP surgery to be a full-time carer to the boys while Robert works full time for Northern Fires and Stoves.
One day a week, Robbie, a pupil at Drummond School in Inverness, attends the after-school club run by SNAP and also has time at weekends with his “amazing” support workers.
Emma’s mum and partner also look after Robbie twice a month in his own home which she says is a lifeline.
But the use of the Haven Centre’s suites since they opened has been a massive positive for all the family, she says.
“Robbie absolutely loves the Haven suites and sleeps better there than he does at home!” she says.
“There's so much space for him to do what he wants and he's so happy there.
“There is so much scope for him to learn to become more independent there - cooking, washing, making beds, everything that he needs to learn for his future.
“We know he's happy there. We get photos sent and great communication from Ben which we have never had before and we feel happy to enjoy our nights respite with Ollie without any worries.”
Robbie also loves attending SNAP at the Haven Centre during the holidays.
“It's absolutely fantastic,” Emma says.
“He loves the sensory room so much and chilling in the quiet area on the beanbags not to mention the amazing safe space outside.”
Emma is a founder and chairperson of This Is Me Highland, a charity for children with neurological disorders, which sometimes hires the centre on Sundays.
“This has been a lifeline for some of our families throughout the summer and the kids have all had the best time there and have been safe,” she adds.
