How is lockdown for parents with special needs and autistic children in Sheffield?

The lockdown has been a double-edged sword for parents who have children with special needs and autism.

Tuesday, 28th April 2020, 12:49 pm
Updated Thursday, 30th April 2020, 10:06 am

Some families are struggling with lack of respite, unstable finances and even not being able to get certain types of food.

However, other families say the slower pace of life has eased some of their daily pressures, particularly for children who find school a struggle.

Sheffield mum Claire has an 11-year-old son with high-functioning autism, previously known as Asperger’s.

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Keeping children occupied during lockdown

She would like to stay anonymous to give him privacy but says they are coping well.

She says: “We are actually having an okay lockdown - being autistic, our lives haven't changed too much.

“He’s been a little bored, but he’s been in a much better place mentally without the pressure of school and all it entails.

“Normally he would start his day getting incredibly upset about going to school which is an environment of sensory overload - if you could imagine setting your office up in the middle of an industrial building and trying to work, this is how he spends his day.

“Mainstream school is a minefield for an autistic pupils, from coping with the environment to sudden changes in routine, those days at the end of term where most children thrive on extracurricular activity, he will panic and his day will spiral out of control, his safety net of the routine he needs to function has been taken away.

“Then there's the social stuff, peer pressure to be the same as everyone else is phenomenal.

“Autistic pupils spend most of the day masking, where they hide the autism to fit in with neurotypical peers. It is incredibly draining and leaves people exhausted.

“My son has all these issues and spends most of his week working up into a very stressed and anxious state. We have real concerns for his long-term mental health with regards to attending mainstream school.

“He is a very good boy, polite, conscientious and very intelligent, but he is getting lost in an environment not made for him.”

Claire says social distancing is no different to how she and her son normally go out and about.

She says: “We tend to avoid large crowds and engaging people in conversation. Large social gatherings tend to be our worst nightmare.

“Since the lockdown began my son has been very happy and relaxed, he's showing no signs of stress whatsoever.

“During a normal school week we will see at least three meltdowns after school. We've not had one in the entire time we've been home.”

Claire says her son is learning life skills while at home. "He is bored at times, like the rest of us, but he understands how important it is to stay home at the moment and has been happy to do so.

She says: “We have planted vegetables in the garden and I have taught him how to make latex moulds and cast cement and plaster ornaments.

“I think going back to school after this will be incredibly difficult for us as a family.”

Charity Carers UK has highlighted how some families are struggling in its new report, Behind Locked Doors.

One parent told the charity: “I am spending so much more money on school supplies and also sensory toys for my nine-year-old as he has more severe autism.

“I'm also having issues getting specific food brands, so having to buy what I can in bulk as he only eats a very select amount of things. We haven’t left the house in four weeks.

“Extra money is going on heating, TV, internet, all to keep him amused.”

Parents are also struggling with exhaustion.

One said: “I have a support network, but the main support I need is respite, which I usually get when he attends specialist provision, and no one can offer this at the moment.

“Even therapeutic support is tricky at the moment as my son can’t cope with me being on the phone.”

Another said: “I have no care during the day so I had to give up work. My daughter is completely reliant on care workers and usually she would be at school. My work is around her hours so has never been an issue. Her grandparents usually sit for an hour when she gets home and I leave work but they are both in the vulnerable group.”

Carers UK is calling on the government to ensure the impact of reduced services on carers and their families are closely monitored in terms of carers’ health and wellbeing and ability to care, in order to avoid burnout.

It says: “Support must be reinstated and restored as soon as possible and the level of Carer’s Allowance needs to be raised.

“Those unable to work because of caring should continued to be supported to retain their jobs for as long as possible, as well as ongoing flexibility for carers to continue to juggle work and care.

“There also needs to be increased investment in mental health and wellbeing support for carers.”

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