The added challenge of additional needs

One mother has had two television sets smashed. Another is coping with bereavement, working from home, a teenager whose crucial exam year has been disrupted and the extreme distress of a second child on the severe end of the autistic spectrum who can’t cope with the change to his routine.

Other parents and carers are experiencing rage, sometimes violence, from children and teenagers with additional needs who have been struggling in lockdown for weeks. Many of the support systems for those with additional needs and those caring for them have collapsed: lifelines like school and day centres, outdoor activities, clubs, even coffee shops and simple opportunities to chat face to face with someone who ‘gets it’, are no longer there.

When everyone is feeling stressed and challenged by the impact of lockdown and social distancing on what was, until recently, ‘normal’ life, it can be hard to see beyond our own needs and fears. But without doubt, some individuals and families are having a much tougher lockdown than others.

As Christians and as churches, albeit online churches, we want to be people who look outwards, keeping a wider focus on the needs of others, aware of their circumstances and wanting to help.

Overwhelming

Even before the pandemic crisis, individuals with additional needs – mental and physical challenges, or a combination of both – and their parents, families and carers could find themselves forgotten and unsupported. How much more is that the case today.

Trish Hahn, Messy Church SEND (Special Educational Needs and Disability) Coordinator, explains why a raft of additional challenges can leave them exhausted, isolated and desperate.

‘Within many families young people with physical or mental learning disabilities, or a combination of both, may find that lockdown and restricted movement is overwhelming. Those with very little cognitive understanding may find themselves upset that their regular daily routine has changed without notice. Emotional meltdowns may ensue due to anxieties, especially in young people on the autistic spectrum.’

Trish adds, ‘Severe anxiety can lead to daily violence against parents and carers when those children are physically taller and stronger than their parents and carers. This can lead to serious injury and breakages of household items. Fear then seeps into the household and parents wonder how they are going to continue to cope when lockdown measures may continue for an unspecified time.’

Although for some families, life has become more manageable without the stress of the school routine, for others, including one mother Trish knows, being confined to home and home-schooling are a nightmare.

‘She struggles in lockdown with two young people, one on the severe end of the autistic spectrum and a sibling due to take A-levels, family bereavement and trying to work from home.’

No rest or sleep

Trish also mentions the difficulty of managing children’s and young people’s boredom, especially in those with ADHD, and the challenge of finding activities accessible to children who ‘won’t or can’t do craft, painting or playdough’.

A lack of respite and a lack of sleep are two common problems, highlighted by Trish and also by Ann Sumra, a former paediatric physiotherapist for children with additional needs. Ann adds:

‘Families often feel isolated and different anyway, without lockdown. Lockdown will only accentuate these feelings. For those with conditions like ADHD, the lack of space may be a problem. It can be hard to entertain all day, especially if there are other children.

‘Their support systems are removed. These can include school, childcare, therapies and extended families who might normally be a great help emotionally and physically. I think it will emphasise feelings of inadequacy. And no end in sight.’

Struggling to comprehend

Mark Arnold, The Additional Needs Blogfather, is the father of James, who has autism, epilepsy and a learning disability. He is co-founder of the Additional Needs Alliance, an organisation devoted to ‘helping churches to include, support, create places of belonging for and spiritually grow children, young people and young adults with additional needs or disabilities’.

Mark says in a recently published blog: ‘Many children are worried about the coronavirus and as parents, other family members, or children’s and youth workers we are likely to be worried about how to keep them safe. Much of the information circulating at the moment is scary and over-hyped and sensationalised and this can really upset children, especially children with additional needs who may struggle to comprehend what they are seeing and hearing. Imagine what they are thinking when they see people fighting over toilet rolls!’

The Additional Needs Alliance website, including the Additional Needs Blogfather blog, is an invaluable source of continually updated information, new resources and advice.

What can be done to help?

What can we do, practically and spiritually, to support individuals and families, parents and carers coping with additional needs and severely restricted contact in this time of crisis?

Trish tells of one mum for whom ‘having people who will listen to her if she needs to talk and be non-judgemental is everything to her’. The value of ‘a listening ear’ is something that Ann also emphasises.

‘But it’s difficult to just ring someone up if you don’t know them very well,’ she says. ‘So maybe we could take the initiative more, making a quick call, not to intrude but to give someone the chance to talk if they want it. And, of course, the usual practical things like shopping and collecting prescriptions.’

When asked how churches can help, Trish was blunt: ‘Difficult to answer… not all churches are willing to accommodate families who have children with additional needs and disabilities. But if people from church are willing to partner in prayer or provide practical help for additional-needs families, this goes a long way to supporting people who may otherwise have no support network.’

And Ann agrees about the value of prayer: ‘I often think of one child and then I come before God and ask him to direct my prayers for that child. Or the same with a family or siblings. Then wait and see what God says. He knows what they need! It is such a privilege to be involved.’