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Our coronavirus lockdown is a nightmare, says Belfast family caring for autistic teen


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TOUGH TIMES: Jillian Black with husband Tom and their children Harry, Rebecca and Peter

TOUGH TIMES: Jillian Black with husband Tom and their children Harry, Rebecca and Peter

TOUGH TIMES: Jillian Black with husband Tom and their children Harry, Rebecca and Peter

A BELFAST mum working for the health service whose 17-year-old son has autism and complex needs has said the pandemic restrictions have left the family exhausted.

Mum-of-three Jillian Black had to give up her job as a clinical specialist occupational therapist in February to care full-time for her son Peter who suffers from autism, ADHD, drug-resistant epilepsy and has mental health and behavioural issues.

The government restrictions announced last month meant the team of specialist carers needed to look after Peter around the clock could no longer be at home with him, or support him during medical appointments.

Now Jillian and her 19-year-old daughter Rebecca, who was due to begin a university course in Edinburgh in September, provide full-time care for Peter. And the family, who used to have four nights a month respite care for Peter, don't know when a new package of support due to be provided for him when he turns 18 will be put in place.

Peter, who has an eight-year-old brother Harry, was diagnosed with autism aged 12. He attends Tor Bank school, where he needs a one-to-one assistant and often has two adults for support. As well as school lessons, Peter enjoyed lots of after school activities such as basketball, cinema and bowling trips with carers.

Now, in addition to a series of health setbacks prior to lockdown, he is being home-schooled by his mum and sister with just walks near his home for exercise. The recent relaxation of restrictions for those with autism will have little benefit for Peter who doesn't understand social distancing so his family don't take him out to public places.

Jillian, who lives just outside Belfast with businessman husband Tom (49) and their children, said Peter was due to be admitted to a CAMHS (Child and Adolescent Mental Health Services) unit earlier this year but there weren't enough beds.

She said: "Prior to lockdown, Peter had been struggling with his mental health and had weekly psychiatry meetings, a hospital admission and needed medication adjustments to keep him stable. This stopped him taking part in his usual after school activities.

"He had been spending time before the restrictions going for beach and forest walks. In a way this prepared him - and us - for the current situation."

And because of his complex needs, Peter must know what is happening each day and cannot cope with changes to his routines.

"He's been off school since March 13 and the first week was incredibly difficult because he needed full-time attention from an adult," said his mum. "His concentration was so poor, he couldn't even focus on his favourite TV show."

While Jillian's parents had been helping out, they had a two-week period of isolation due to coronavirus symptoms.

Lockdown meant the family felt uncomfortable about asking carers to come to the house, so they decided to try to manage on their own. "Peter and I are both in vulnerable groups for Covid-19 so wanted to reduce our exposure to infection," added Jillian.

School work for Peter involves jigsaws, colouring in, practicing letter formation and number work. He has also learned how to make porridge, organise his clothes and make the bed since lockdown began.

"The biggest challenges with Peter are not being able to go to his favourite places for a walk and get a McDonald's," said Jillian, who had to recently accompany Peter to the Royal Victoria Hospital when his seizures wouldn't stop.

"Thankfully I was allowed to stay with him for his own safety and to keep him calm," she explained.

n National Autistic Society Northern Ireland - autism.org.uk/coronavirus


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