London, the United Kingdom – Twenty-nine-year-old Angela* had not had more than an hour’s sleep in two days when she heard a knock on her front door. Opening it, she was surprised to find a large parcel.
“I haven’t ordered anything,” she told the deliveryman, who stood at a distance with his mask and gloves on.
“It’s from your son’s school,” he responded.
Inside the parcel was an assortment of fresh and nonperishable food: pasta, lentils, chili con carne and long-life milk.
“I started crying,” she recounts over a video call. “I just felt so touched, because I had been worrying for the last week. We were running out of food … It made me feel for the first time in a while that I’m not invisible.”
‘They don’t understand’
Angela’s son, Shane*, is a pupil at Watergate, a primary school in the south London borough of Lewisham, for children between the ages of three and 11 who have severe learning difficulties.
Though he is rambunctious and good-humoured, six-year-old Shane needs constant support. Born prematurely, he has cerebral palsy and epilepsy, and is registered blind. He has also had a cerebral shunt inserted, which helps to prevent an excess buildup of pressure and fluid in his brain.
Shane does not adhere to normal sleep patterns and requires assistance with basic activities, from lifting his head to eating. Angela must be with him at all times in the absence of a carer or physiotherapist – an often relentless task that means she goes without sleep for nights on end.
A single mother, Angela gave up her job as a hairdresser to look after Shane. She receives no support from her family, and has almost depleted her savings on assistive technology and other essentials for Shane.
“I used to be able to see my friends, but we’ve fallen out of touch because they don’t understand Shane or our situation,” she explains.
During the nationwide lockdown that started on March 24, 1.28 million children with special needs have had to confront unprecedented challenges in their daily routines. Their families and schools are under immense pressure to create and adopt new practices to ensure they can continue learning from home.
Anna Somerset is a fundraiser for Watergate and Brent Knoll, another school in Lewisham with which Watergate has a partnership in the form of a grassroots, parent-led trust and charity.
“Even in the best of times, a lot of these children are extra sensitive and suffer from anxiety,” she explains.
Routine, she emphasises, is absolutely crucial to their psychological growth. When that is taken away, the ramifications can be damaging.
Furthermore, time at school often presents the only opportunity for special needs children to mingle with their peers in a safe environment.
Watergate’s curriculum is tailored to the needs of each child. Prior to the pandemic, Shane’s hydrotherapy classes, as well as lessons designed to boost his sensory engagement, had helped to improve his condition. More importantly, Angela explains, “School gives him the structure that he needs.”
She is worried that when he is finally able to return, he will be disoriented and fearful of socialising again, regressing to behaviour that he exhibited when he was first enrolled.
Currently, the Department for Education has issued guidance that educational facilities should be kept open for vulnerable children, as well as those whose parents or carers are key workers. Watergate remains open for a limited number of students who are safer in school than at home. A similar arrangement is in place at Brent Knoll.
Following a discussion with the school, Angela decided that it was better for Shane to stay at home. Every two days, his teacher calls to check on them both.
Prior to the coronavirus crisis, Angela was able to go grocery shopping alone during Shane’s school hours. Now, she cannot leave his side, nor can she take him with her to the supermarket. Venturing outdoors could be lethal for Shane if he catches the virus, since he is immunocompromised and has a weak respiratory system.
“What makes them [Watergate] so amazing,” Angela says, “is that they don’t just care about Shane. There’s a real love for the families too. I don’t know how they knew we needed food – I never even asked.”
A formidable task
Lewisham, where the Brent Knoll and Watergate schools are located, is a culturally diverse borough with pockets of green spaces. But it is also afflicted by a variety of socioeconomic problems. Thirty-seven percent of children in the borough live in poverty, above the national average of 33.6 percent.
Income inequality cuts a jagged path through Lewisham: while there are affluent neighbourhoods clustered around the east of the borough, 63 of its communities are among the country’s most deprived.
Now, even more than before, special needs schools are having to step in to help their students’ families through difficult times.
Fiona Veitch, 57, has been head teacher at Watergate since last September. Exuding warmth, patience and humour, she says that as the pandemic rages on, “everything you know flies out of the window, and a new world unfolds in front of you.”
Watergate has approximately 100 staff members – teachers, therapists, nursery nurses. However, since the lockdown was imposed, only a core team of 25 is present at school at any time, in order to reduce the risk of transmission.
Her team, Veitch notes, “is often as frightened as the parents”, especially if they or their families have underlying medical conditions that put them in the high-risk category.
She believes her primary task is to understand and respond to the anxieties of both the children’s families and her staff, lift their spirits, and maintain remote learning where possible. That last task is formidable, since every child at Watergate learns differently, and resources may have to be adapted to each of the 130 pupils.
Lately, Veitch has begun staying in a budget hotel during the week, along with other key workers like healthcare staff, to reduce the amount of time she spends commuting and to ensure that she has more time for her staff and the children.
This entails being away from her family, but, she explains, “it’s important for me to be in school every day, because it is reassuring … and makes people feel more confident in an uncertain time like this”.
A typical workday for Veitch is now even busier than before. It starts with discussions with other special needs schools about how to acquire protective equipment for staff, organising deliveries to families that are experiencing food shortages, and carrying out individual risk assessments for every child to work out which ones are likely to be safer at school.
“For some of them, their families are so stressed and so vulnerable that it’s a relief to their parents if they are able to send their children in.”
Buying groceries and other necessities can be daunting for parents of special needs children, especially those who are already on the breadline or have lost their zero hours contracts, she explains.
“If you’re a single parent and all three [of your children] have high-level special needs, the pressure you’re facing is just so great at the moment.”
She adds that at last count, 44 percent of pupils at Watergate were from low-income families, and already eligible for free school meals from the state. But with the spike in unemployment, she estimates that this figure will have increased.
There is also significant emotional strain associated with bringing a special needs child to the supermarket while social distancing is being observed.
“In the case of autistic children, they can’t understand what is happening, why they need to stand in line, or keep a safe distance from someone else. They really need sameness, and when they don’t get it, it’s very overwhelming … even intolerable for them,” she explains.
She cites examples of how parents have been shamed and admonished in public for not “disciplining” their children. The fear of judgment is enough to keep these parents at home.
When panic buying took place across the UK pre-lockdown, Veitch was inundated with fretful calls from parents who said they were unable to get nappies and other necessities for their children with severe physical needs. With waiting times of up to three weeks, online deliveries were not an option. The school stepped in, arranging for local supermarkets to “save some of these supplies at their customer service desks” so families could access them.
‘We try to act like a community’
Ruth Elliot, who is Chair of Governors at Watergate and helps to oversee management of the school’s activities, has been involved in special needs education since November 2003. Her late daughter was profoundly disabled and had been a pupil at the school.
“I was very, very grateful for the support I had received [from Watergate] before she died,” she recalls.
“When you’ve been immersed in that world for so long, you can’t just pretend it never existed. So I just stayed on … in different capacities over the years.”
Along with 10 volunteers, other parents and school staff, Elliot helped to source food from a Lewisham-based charity called FareShare. This was then packaged into 130 different parcels and sent to vulnerable families with children at Brent Knoll and Watergate, as part of a COVID-19 relief initiative. Angela and Shane were just two of the beneficiaries.
Before FareShare partnered with the school, Elliot says that Veitch and other teachers had even pooled their own money to buy food for families in need. When asked about this, Veitch only says, “Everybody’s going through a hard time now … we try to act like a community, and hope that it’s enough.”
‘Dignity and respect’
Aside from helping families cope with some of their basic needs during the lockdown, both schools have had to devise creative ways to sustain the children’s learning.
Seven-year-old Lily Deitz attends Brent Knoll. She is a happy child who, according to her mother Laura, “loves being outside, jumping on trampolines and swimming”.
Lily also has autism and dislikes being interactive with other people. She is tactile and prefers sensory-seeking activities, such as washing her hands.
The Deitzes chose Brent Knoll for their daughter as it was the only school they felt was entirely committed to “being excellent… and ensuring that every single child in their care can reach their best potential”.
As the Deitzes have chosen to keep Lily at home, Brent Knoll has been sending them both electronic and hard-copy learning resources so that Lily’s education is not disrupted. Being familiar with how Lily learns at school, her teachers have dispatched a visual schedule to Laura. This guides her through the different pedagogic exercises for Lily to work through, including resources for a picture exchange communication system (PECS), which teaches children with autism to communicate using images.
The day starts when Laura, Lily and her two younger siblings sit down for “morning circle time”. They watch a video of Lily’s teacher, which encourages her to sing along to a tune that she ordinarily listens to every morning at school.
Under Laura’s supervision, Lily then alternates between a range of learning activities made accessible by the school over the course of the day. They include multisensory maths training, and online videos that are aimed at improving her linguistic and cognitive skills.
“Over the last few weeks, I’ve had some of the most meaningful interactions with Lily that I have ever had in my life,” Laura reflects.
Lily’s teacher checks in on the Deitzes every few days. Laura places weight on the fact that this show of care is not unexpected, and remembers being particularly moved on Lily’s first day at Brent Knoll: “The teachers knew not just her name, but also mine.” The school goes out of its way to extend “love not just to Lily, but also our entire family … they’ve always treated us with dignity and respect.”
‘There are days … I just cry’
Brent Knoll’s head teacher, Andy Taylor, has been exploring ways to offer parents remote access to counselors who can provide them with regular advice on how to support their children’s learning. But many of the bespoke learning resources that Brent Knoll has created are uploaded online, and he is worried about families who are unable to access the internet at home.
“There are quite a few of them,” he says, “and we send them exercises for their children by post.”
Emily Ward, 32, is a learning support assistant for Lily’s class, and says she misses seeing her at school.
Ward helped to run a holiday club for the school over the fortnight-long Easter holidays, which was attended by an average of eight children each day. For these children, the club is not simply a fun break from lockdown – it comprises sensory play, guided artwork and an opportunity for children with learning difficulties to get enough social interaction and physical exercise in a fit-for-purpose space. This is critical because for children in wheelchairs and those who have to be tube fed, it can be hard to play in conventional settings.
Ward confesses that being an educator for special needs children is frequently trying. “I love my job so much,” she says, “but the pay makes it really difficult to live in London and have … any sort of lifestyle.
“I feel a bit like a mental health nurse. I’ve had children who kick and punch me, and I have to deal with that in a calm and managed way. There are days when I come home covered in bruises and I just cry. But then I tell myself that I’m doing something that’s worthwhile, and that the next day will be different. And sometimes it isn’t, but when I do make a breakthrough, I feel so happy.”
A sense of solidarity
One of the most commonly expressed frustrations within the special needs community is that government support for schools is gravely lacking.
Last year, a report by the think-tank IPPR North revealed that funding for special needs pupils in England had been slashed by 15 percent since 2015.
In 2018, the National Association of Head Teachers (NAHT) carried out a survey of 637 schools accepting children with special needs. Eighty-three percent of its respondents stated that they had not received any funding from health and social care budgets to support pupils who had been issued an EHC plan – a legal document detailing a young person’s special educational, health and social care needs.
Though there was a boost to school funding in late 2019, the spectre of austerity cuts dating back to 2010 continues to loom over special needs schools, and is likely to persist after the coronavirus crisis.
Another mounting problem is that of the parents’ mental health: whereas school gave them a few hours of respite each day when their children were not at home, now they have to care for them round the clock.
“For some parents,” Veitch says, “they get zero sleep.”
What is clear is that COVID-19 has cemented a sense of solidarity between the schools and families of special needs children. “I’m on different WhatsApp groups with parents at Lily’s school,” says Laura. “Knowing that you are understood, without having to explain yourself … is a very comforting thing.”
Veitch shies away from taking any credit for her work, and feels it is the least she can do. “Many [of our families] face being ostracised … by society in general. The current situation only serves to magnify that sense of difference and isolation, which is why it is so important that we are there for them in any way we possibly can be,” she says, adding: “We are not doing anything better than many other schools, both mainstream and special … and like them we do it with a real sense of connection and commitment to our children and their families.”