'My daughter thinks she is being punished'. York researchers look at what life is like in lockdown for children with special needs

WE are all finding lockdown challenging. We're just not used to spending weeks in isolation, unable to see friends or family, or to pop round to the local for a few beers while we unwind.

Add to that the worry about jobs and the ever-present thought in the back of our minds that we ourselves might contract the virus, and it is no wonder that many of us are finding it difficult at the moment.

Imagine what it must be like, then, for parents of children with special educations needs or learning disabilities.

Such children depend more than most on carefully established routines and relationships. So when things change abruptly, as they have under lockdown, it is bound to have an even greater impact on them.

Dr Umar Toseeb and his colleague Dr Kathryn Asbury of the University of York's Department of Education have been leading a team from York which has been following the experiences of such families since the very beginning of lockdown.

"Staying at home, and in most cases not attending school, creates a uniquely stressful situation for children with special educational needs and disabilities and their families," they write, in a working paper summarising their results so far. "Carefully developed routines have been disrupted; support networks have disintegrated; and parents have been asked to do a job that trained teachers find challenging, without any training. These changes have happened abruptly and the consequences could be particularly profound."

Just before schools closed, the York researchers contacted parents and asked them to report on how their circumstances changed under lockdown, and how their children reacted.

So far more than 500 parents from across the country have responded.

The results suggest that the parents of children with special educational needs have indeed found life in lockdown extremely stressful - although a small minority of such children have actually enjoyed not going to school.

The research is ongoing, with responses still coming in.

But the researchers have grouped the responses so far into six categories. Here is what they have found so far:

Worry

The responses suggest that, while all families are likely to be anxious in the current situation, worries may be greater in families with special educational needs children.

“My son’s anxiety is sky high, his hands and arms are red raw from constant washing,” one parent reported.

“[He] curls up repeating, ‘I’m scared, I’m just scared’,” reported another.

It wasn't only the children who were anxious, either. "As well as describing extreme anxiety symptoms in their children, some parents told us they were concerned they were letting their child down," Dr Toseeb says.

A typical response was: 'I worry I’m not doing home education correctly, and that my son will fall even further behind at school due to my failings'.

Loss

Families also described a great sense of loss as their access to support networks and normal routines was suddenly taken away, Dr Toseeb and Dr Asbury say.

Responses included:

“[My child] will not attempt school work at home as home is home and school is school, and they do not mix.”

“Home-schooling is difficult as the work sent from school isn’t appropriate (his sister is four years younger and they sent home exactly the same work, which is no good for his self-esteem).”

Mood and behaviour

Parents described children who were severely distressed, who had begun to exhibit psychotic symptoms and who had begun to behave in challenging ways, Dr Toseeb and Dr Asbury say.

“My daughter has started stimming [self-stimulating behaviour, such as the repetition of physical movements, sounds or words] constantly, has constant violent outbursts (which she doesn’t have often usually) and has started having night terrors,” said one parent.

A mother, meanwhile, reported that she felt as though she was “drowning and nobody can see me”.

Not knowing what is going on

Many of the children in the sample had limited understanding and awareness, Dr Asbury says. "While this protects some from worry, it leads to confusion and distress in others."

One parent said: “My daughter doesn’t understand why she can’t see her family and that’s made her feel quite sad and lonely, sometimes thinking it’s a punishment for something she might have done.”

However, in other cases, Dr Toseeb added, good understanding and communication from specialists in school was helpful. "It might be that understanding and awareness could be enhanced via social stories or other means," he says.

Feeling overwhelmed

Some parents and carers reported that, even in the first two weeks of lockdown, meeting all of their child’s health and educational needs without support or a break – while also meeting the needs of others in their family – was overwhelming.

“I have felt completely unprepared for the reality of dealing with [my daughter] 24/7 without any support or respite as her behaviour is extremely challenging and she can become physical,” one parent reported.

"Again, we see signs that some families in this group are particularly vulnerable and in urgent need of support," Dr Toseeb says. "This needs to be treated as a priority by health and social care professionals."

A lockdown benefit?

Not all families felt their mental health had been affected by the pandemic - and some even said there had been real benefits to lockdown, Dr Toseeb and Dr Asbury say.

"For children who are unhappy at school and stressed by many of the demands of daily life, being able to stay safely at home with loved ones seems to be actively beneficial," he says.

One parent put this especially vividly. “His anxiety is much less than normal as he no longer has the daily torture of going to school,” this parent reported of his son.

Support for parents

As well as looking at how special educational needs children and their families had been affected by the pandemic and lockdown, the study also gave researchers a chance to ask parents what support they needed.

Parents suggested the following:

- Specialist, child-specific advice from teaching staff and child and adolescent mental health professionals on how to support their children’s learning and wellbeing at home.

- Appropriate educational activities set by school, tailored to the child’s needs.

- Access to 'familiar faces'- online to allow children to see the link between learning at home and learning at school.

- Social stories to enhance understanding of the lockdown.

Dr Toseeb says his team's research is ongoing. Responses are still coming in - and many of the parents who first responded have been sent follow-up inquiries to see if their situation after five weeks of lockdown has changed at all.

It is possible, he points out, that many children may have reacted badly to the initial change in their daily routines since lockdown was imposed, but may have been able to adjust and develop new routines since. "The flipside is that five weeks or so of lockdown may well have exacerbated existing problems."

He and Dr Asbury and their team have already come to some tentative conclusions, however.

First, despite a call from the children's commissioner to get 'vulnerable' children back to school soon, this is not necessarily what all special educational needs families need or want.

"Most participants in our study want to be supported to access education from home," Dr Toseeb says. "This may involve providing increased resources to ... schools, child development centres and social care and charitable organisations."

Second, while schools are under huge pressure, and many have done an extraordinary job of transforming their way of working, the evidence from parents suggests that there may still be a need to do more for the most vulnerable special educational needs families.

As to the impact of the research: an article Dr Toseeb and Dr Asbury wrote for the Times Educational Supplement has already attracted attention. They discussed their findings with a researcher from the Department of Education earlier this week.