Different to the parallel in for years... Lewis was isolated too by default

Lewis was born isolated, and over the years in many ways we have been isolated by default.

We’ve been unable to have family days out or get togethers with him because we know he won’t be able to cope.

Having nights out, meeting up with friends or even nipping to the shops have been restricted because those able to babysit or care for him were almost nonexistent.

In many ways the lockdown we find ourselves in now is not so far removed from the parallel universe we existed in for many years, and to some extent still do. For the last seven years Lewis has been an in-patient at a local NHS hospital for people with learning disabilities and complex needs, thankfully only minutes from our home. As well as autism, challenging behaviour and other issues, he also has a history of psychosis from a very young age.

His most significant, although certainly not exclusive, behavioural ‘trigger’ since his mid-teens has been people coughing or clearing their throat, with reactions which can range from stomping and shouting to biting and headbanging.

His admission to the hospital came following a particularly extreme reaction to someone coughing which led to him smashing his head through my car window in a supermarket car park.

While the rest of us might hate the sound of nails being dragged down a blackboard, or someone clicking a pen, for Lewis a cough is like a bomb going off.

Relatively speaking, the last few months have seen him have one of his most settled spells in quite some time.

Despite that, coughing continues to be a major problem.

Clearly had cases of Covid-19 occurred in Lewis’ ward he could have been at risk of catching the virus.

However, almost as concerning was the worry of how he would react to the inevitable coughing which would accompany such cases.

With all this in mind, the collective decision was taken that Lewis stay at home with us for the moment, with this being reviewed every few days.

Some essential factors to achieve this would not have been in play without the lockdown.

Working from home means his dad and I are continually with him, there are no visitors coming through the door and none of the usual interruptions of daily life.

Lewis loves being outdoors - and in his teens walked the West Highland Way and climbed Ben Nevis thanks to the support of his teacher and carers - but his issues in recent years have severely curtailed his ability to be taken to wider outdoor spaces. Even being out in the garden has its issues - his enjoyment can be spoiled simply by a neighbour inadvertently clearing their throat.

But, because the streets are much quieter, my husband has been managing to take him on extended walks later in the evenings or as early as 6am.

That’s not to say there haven’t been some issues to varying degrees - mainly after a few stray strangers have coughed - but overall it has been an opportunity to test his resilience and do something he otherwise greatly enjoys.

His consultant, who is in regular contact with us, has also provided us with a letter we can produce explaining his disabilities and why he may be out and about at odd times or in irregular places.

Being indoors certainly isn’t without its challenges.

His record for staying awake is currently 42 hours and he has a habit of turning night into day, but my husband and I work and sleep around that.

Patience is not one of Lewis’ virtues. When he needs something done it has to be done there and then. There are also the inevitable times when we are walking on eggshells and his mood can change at the flick of a switch.

Most of my work at the moment is being conducted via email. Most of the time Lewis is watching YouTube or taking photos of his Thomas the Tank Engine trains with my phone, and even when he’s not he’s none too partial to listening to my voice for extended periods.

My husband would probably say he’s not alone!

Somehow, however, we’ve all worked out a rhythm that gets us through the day.

While getting him to eat enough is never a problem, the variety of what he eats can be an issue.

His own understanding of coronavirus and the lockdown is non-existent. We’ve explained to him that “people have germs” so it is best for him to stay here for now.

The said “germs” for him hold no significance beyond the fact it means he is able to go for walks with his dad - and maybe that’s for the best.

Lockdown has its obvious drawbacks - including for us missing spending time with our older son Daniel, his fiancee Rachel and our two-year-old grandson Cole.

But it has also hopefully provided a stepping stone for Lewis we can all build upon especially if it works towards enabling him to experience his brother’s wedding, where he is Daniel’s first and only choice for best man regardless of how long or even if he can attend.

Despite his many challenges he is the centre of all our worlds, loves to makes us laugh and smile every day and makes us look at the world from a different perspective.

For most of us the isolation will be over in time, and with the help of some of the most dedicated people we are ever likely to meet, we will continue trying to unlock Lewis’ world as much as we can. When we clap for the NHS and carers we have much to be grateful for.

But for Lewis and others like him isolation is a way of life they are unlikely to ever have any control over.

What does lockdown mean to me? An even greater love and respect for my incredible son.