I know a lovely old-fashioned family hotel by the sea. Peter, the friendly owner, has a son, Tom, eight, with the mental age of his sister, four. Tom is a compulsive eater and only speaks a few words. Due to meltdowns in public places he is now almost housebound. The lockdowns, says his dad, were “pretty tough” when his special school was reduced to three days a week. Peter, self-employed, with no hotel guests in lockdowns, had to start meals on wheels. He praises his wife for “taking the brunt”. Tom is “normally happy” but can break his iPad, hit or squeeze –he has sensory issues. Managing him was worse during lockdowns, as autistic children need their routines. “Summer holidays are a nightmare,” says Peter. He and his wife had to go to court to get Tom into his school.
Maeve, with an autistic son of 19, is a teaching assistant in a multicultural school in North London for children with autism, many severe. During lockdowns, school was open for key workers’ families. But, fearful of Covid, staff could be absent. “The situation really affected these children”, says Maeve, “they could not get home visits, and not much from social services. As for online learning, many of the parents were unable to help and there was no back-up.” Daryl, six, lives in a 10th-floor flat with a single mum who also has learning difficulties and a baby. During lockdowns, Daryl deteriorated. Back at school, he would lie on the floor and lick it. Before Covid, the school made sure he had outdoor activity; in lockdowns he had none. There was no support, despite his state-funded diagnosis.
Another parent there has ME and her five-year-old twins are almost non-verbal. Before Covid, says Maeve, these twins were making fantastic progress. They were interacting, making eye contact and using language. But when they returned after lockdowns, they had regressed by 18 months.
Maeve has learned drama skills to help. Her school also had art, speech and language therapists, and occupational therapists – costing £90 to £100 per hour – but during lockdowns these services were affected, to the children’s detriment.
It’s not only autistic children who suffer. In August 2020, I received an email from a teacher in Tennessee: “I’m back in school. It is kind of a nightmare. I cannot teach social distancing and mask wearing fast enough for my students… I have five-year-olds with such issues as heart transplants and immune deficiency disorder.
“Despite still-high Covid cases, recently the governor has decreed ‘no masks, no virtual teaching’.”
Polly is a child psychologist working with developmental and neurodevelopmental problems, ADHD, tics and those “wired slightly differently or with a vulnerability”. After Covid, there’s a three-year waiting list to get an NHS diagnosis, without which a child can’t get a statement for a special school. “There’s a paucity of funding for children with mental health problems,” says Polly, “and also staff burnout, both partly due to Covid.” Staff turnover, she says, really upsets children.
During lockdowns she saw two extremes – those who found school “terrifying and uncomfortable” and those who missed going. The school-phobic ones, initially relieved, when they returned had a crisis. Some were suicidal about going back. It was worse for those starting secondary school during Covid, in September 2020. Initially there were “bubbles”, which they preferred. Then in March 2021, when the schools opened to bigger classes, they floundered. Polly liaises with each school, to help them understand certain pupils – and prevent them being excluded. She suggests certain strategies. She observes “a massive increase in fostering” because some parents couldn’t cope during lockdowns. Particularly for children with unstable homes, school can be nourishing and help social relationships.
Hannah, the mother of Caleb, an only child, says she hadn’t fully understood what lockdowns had meant for him. He had always liked school but when he returned after the first lockdown he was “nervous to go in, each morning there would be a new mysterious illness. The school has been amazing in their response – the welcome is so warm and genuine and the staff can’t help enough if certain children are in need of extra help.”
Another heart-warming story involves Leo, 16, who is severely autistic. In 2019, before Covid, his parents nearly bankrupted themselves fighting to get him into a school for autism. His mother, Lucinda, explains: “His communication is a mad jumble of Peppa Pig and Thomas the Tank Engine. He had frequent meltdowns and was in a very low mental state due to being out of school and not having any support or therapies. It was a very hard time for us all.”
Then, each night reciting a different verse, Leo dictated her a poem (below).
His mother says: “It is our genuine belief that this came directly from Leo’s Guardian Angel, it truly blew us away. Leo has never done anything like this before, and indeed since.”
The family is Catholic.
Elisa Segrave is an author and journalist. Some names have been changed to protect the families in question
Leo’s Prayer March 2019
One is for Monday, that’s the day today
One is for Monday and I want to pray
For all my family wherever they may be
Jesus please bless them as they care for me
Two is for Tuesday, that’s the day today
Two is for Tuesday and I want to pray
For all my helpers wherever they may be
Jesus please bless them as they care for me
Three is for Wednesday, that’s the day today
Three is for Wednesday and I want to pray
For all my leaders wherever they may be
Jesus please bless them as they care for me
Four is for Thursday, that’s the day today
Four is for Thursday and I want to pray
For all those who love me wherever they may be
Jesus please bless them as they care for me
Five is for Friday, that’s the day today
Five is for Friday and I want to pray
For someone special and that someone is me
Jesus please keep us in your family
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