Why Can't I See My Disabled Son?

by Vanessa Gray

I am delighted that some attention is being given to relaxing the barbaric rules designed for elderly people in care homes. Those of us on Twitter have had an almost daily diet of absolutely haunting pictures and videos of family members trying to connect with dementia sufferers who are incarcerated in care homes, through windows and gates. Thankfully, the new Care Home Guidance has relaxed the criteria so a family member can visit. Although with 43 Perspex screens and full hazmat gear (only a slight exaggeration!), I am not sure how much comfort these visits will be to the already confused resident or to the visiting family member.

What many don’t realise, though, is that these very same rules also apply to young, fit and physically healthy mentally handicapped adults in care homes. This is despite the fact that we know the average age of people dying from Covid is 82.

I have a beautiful, gentle, handsome, fit 20 year-old son called Charlie, with severe mental disabilities, autism and an atypical form of epilepsy. He moved into a care home last July and attends a college locally for special needs autistic students. All was going very well and we used to have him home pretty much every weekend. Never could we have imagined at that time that within a few short months we would not be allowed to see him at all.

Then Lockdown comes in March – “Three weeks, to flatten the curve,” Boris said. Although I admit, despite the uncertainty at the time, the whole thing had a faint stench of bullshit about it, even back then. Information was already coming out from world leading scientists, based on a forensic study of available data, particularly Dr John Ioannidis and Professor Michael Levitt, that lockdowns were pointless and not the way to go. This whole lockdown business sent shivers down my spine because I knew it would have horrible implications for my son.

You see Charlie can not speak, read or write. His cognitive age is about two-and-a-half. So how do you explain to him in any meaningful way that Mummy and Daddy are not coming to see you anymore and not bringing you home anymore – for what turned out to be months?

We have nightly face time calls organised by a carer – but there is no engagement from Charlie on an ipad. We engage with Charlie by holding his hand, sharing a piece of his favourite cake with him, reading him one of his favourite picture books or watching an episode of Fireman Sam together!

After over two long months, we were allowed to start bringing Charlie home again, as long as we filled out a mountain of paperwork declaring that no one had lost their sense of taste or smell, etc. – before we returned him. At least we could see him again – I wasn’t complaining.

Then along comes Tier two. We are allowed to take him out – but NOT bring him home. Restaurants were open so at least we could get out of the cold with him and go for a pub lunch.

Then five minutes later – Lockdown again! This time – ONE of us is allowed to take Charlie for a walk for ONE hour! So my husband and I tossed a coin as to which of us would be the one allowed to see him last weekend and take him out in the freezing cold. My husband won. I will go next weekend. It’s very silly because Charlie goes to college each day and his carers come and go from his home to their homes.

I don’t blame the care home for any of this. They have been as helpful as they could be and staff are fantastic. But rules are rules and obviously they can’t flout them. I blame the Government.

I know of many parents in a similar position who have not been allowed to see their adult disabled kids in care homes since March. And my heart really goes out to them for the pain and suffering on both sides. So, I am torn between being pitifully grateful that at least this time round ONE of us can see him for ONE hour in the freezing cold, and, at the same time, raging inside at these utterly stupid, illogical rules which separate healthy confused mentally handicapped young adults from their healthy parents for weeks and months on end. What consideration is being given to the suffering of these youngsters?

Until there is a public outcry this will never stop. We are already being threatened with masks and social distancing being maintained etc. – even after the magic vaccine arrives.

Having spent a year involved in politics in 2019, I know that all that politicians care about is votes. Not right or wrong, not common sense, not you or me, not pain or suffering – just votes.

Please make some noise wherever you can. Write to your MP. Let politicians know that NONE of this OK. It’s our only hope and the only hope for the most vulnerable in our society, who don’t have a voice, like Charlie.