This piece was originally published during the COVID-19 pandemic on April 26, 2021. We wanted to share this powerful testimony again with our readers on World Autism Day 2022.
I live in two realms, one, like many of you, which we stumble through as best we can and another balancing on an invisible tightrope.
Sometimes it feels strong and firm underfoot at others frayed and weak. I have slipped off too many times to mention. Covid hit our family a few weeks ago and knocked us back into that weird unsettling ‘other’ place. We have been clambering back into your world ever since.
I am the mum of a 20-year-old, Eli, who suffers from severe epilepsy, autism and intellectual disabilities. The many battles we have faced have made me stronger and more determined in everything I do. We moved to France in 2003 to gain better medical care for Eli.
He depends on us for everything. As always, when disaster strikes, we are alone. Covid contagion enveloped us in a new layer of emptiness we had not experienced before. Looking back, it was actually not so bad. I am exhausted, my younger kids seem fine, my husband is shell shocked but we are lucky and were spared the worst. But what did Eli make of it all?
As we battened down the hatches in early March after discovering two members of our family had caught the English variant of Covid, memories of the first lockdown flooded back. Communicating with Eli is really difficult. He does not speak and because of his intellectual disabilities understanding what he is experiencing is guesswork.
As the weeks rolled by in the 2020 lockdown, we had to deal with more and more acute challenging behaviours involving a lot of biting and screaming. But it was the fact that Eli became severely constipated that set alarm bells ringing. It helped us realise that the abrupt end to his activities was very stressful for him.
Unlike us, Eli had no grasp on the context we were living in. Did he think this was his new forever, if he did, how could we explain this was not the case? Where do you even begin to start explaining something you have trouble comprehending yourself, to someone you love so deeply, but can’t even gauge, as their own mother, what they actually understand? We tried to put simple words and phrases on what was happening and battled on. Truthfully I have no idea if he understood.
It took months to get Eli back to his usual self as his old routine was slowly re-established. Even today, he is not allowed to take part in group activities which I think makes him sad. But he cannot tell me, so I am just guessing how I might feel in his position.
A few weeks ago, one by one, we all caught Covid. Counter-intuitively, it has been far easier than the first lockdown. For a start, I barely bothered homeschooling my younger twin sons. There are just so many fights that one person can handle! Isolation has been shorter. This time we had dates: dates for being contact cases, dates for the end of our respective quarantines.
Whereas usually, we need to check on Eli a few times a night because of his seizures, it seems Covid exhaustion has meant he or we have slept through them. Given the rather disastrous vaccine roll-out in France, I seek solace in the fact that antibodies will help protect us for the next few months upon which I hope a jab will be available. In the perverse world we inhabit, dare I say, Covid has given us some respite.
Eli’s teachers will come back to our home this week, gently re-introducing his activities. To get my own strength back, and his, we have just started going for walks in the hills near our home. We are reasonably sporty, so it is strange that at times both of us have just slumped on rocks for a long breather. Eli has held on to me so tightly some days that I feel I have pushed him too hard.
As we try to overcome some persistently lingering symptoms, I wonder if Covid will have done some lasting damage to our bodies. There is no manual for getting better from Covid, not least for parents and carers looking after the intellectually disabled.
But we are back on our tightrope, tired and teetering, - but the rope is there. As well as relief, I feel very lucky, full of emotion and sympathy for everyone who has had to go through this and devastated for those who have endured far worse.
- Isabelle Kumar is a former Euronews presenter, a disability activist and President of the charity Autisme Ambition Avenir (AAA)