Life in lockdown – an article by our charity supporter Sarah Smith
One of the most common things I hear as an Autism mum is ‘I know someone’ or ‘My mum used to work with them’. Do you know what, that is great. The second most common thing I hear is, ‘I know it must be hard’. Do you?
Hard does not even come close to what this is. But would I change it? Not a chance!
All 3 of my boys live at home with me. Their Dad and I separated three years ago. Oliver is 18, he has Autism, Cerebral Palsy and Learning Delay. Evan is 14, has Autism, learning delay, Pica and is completely non-verbal. Will is 11, he is a registered young carer, and he adores his brothers.
Lockdown has been a journey like no other. With reduced timetables, remote learning and staying at home being the new norm, my anxiety has been fuelled to new levels about the boy’s ability to cope. But was it really my ability to cope that should have been questioned?
One of Oliver’s biggest trigger points is not being able to get a definitive answer when he asks a question. As an English and Drama teacher, this sometimes frustrates me that he cannot expand his mind and see a level of creativity I know he would love. So, when he asks me ‘When am I going back to school?’ and I cannot answer him, he becomes incredibly frustrated, fuelling his repetition and echolalia.
Oliver has always had a huge attachment to me, for many reasons, and some days he struggles to cope with me not being in his line of sight. Lockdown has massively fuelled this, and his anxieties have definitely increased but we have spent more time together, I feel like I have learnt more about him as a young man, he turned 18 in 2020, and we have laughed a lot!
As a working mum, a special needs mum, it is incredibly hard to balance everything around school runs, hospital appointments, work, being a partner…
You are expected to work like you do not have children and raise children like you do not work. And that is just with mainstream, neurotypical students, let alone those with additional needs. The reality is that it is a hell of a lot harder than that.
One thing I would say about being a mum to special needs children during lockdown is the loss of any identity we have managed to cling on to. I mean, when you have children you almost automatically lose your name and become John or Emma’s mum.
Kids have walked past me in the street and gone, ‘Alright Oliver’s mum!’.
For those of us that are able to work, that one part of us that’s ours may well have had to be put on a backburner.
Those who are full time carers to their children, and with schools being on reduced timetables and in bubbles, the uncertainty around what we can say to reassure our vulnerable young people can seem to have been overlooked.
However, lockdown has been frustrating for him. Total uncertainty and lots of extra time at home, Evan has always thrived in a setting be it soft play, school, or swimming. He is a proper little fish in the water.
He is really intelligent and needs to be constantly stimulated. A bored Evan is an Evan that will display behaviours that indicate how frustrated he is with the world, and like Oliver this can manifest itself in self harm or aggression towards someone. None of which is meant, and they always apologise for themselves after a meltdown.
But lockdown has given me time with my boys. It has given me a chance to get to know them again and we have definitely become closer as a family. Evenings spent on the sofa, Oliver laughing at whatever is on TV, while Evan stretches out so I can rub his feet.
The situation at the moment is far from normal but that’s ok. Normal is boring. I would rather love every second with my unique boys and we will get through all of this together.