What does ‘Coronavirus’ mean to me? – Scarlett’s account

Scarlett is 9 years old and is blind.  She has had no sight since birth due to a condition called Optic Nerve Hypoplasia.  Scarlett is considered a complex child as she has development delay, multi sensory impairment and learning difficulties.

Due to this Scarlett has considerable language and communication issues which means any conversations around ‘What the Cornonavirus is’ are impossible for her to have.  Scarlett is non-verbal and these are not her words, but more an account of how she might be thinking and feeling during this difficult time, written by her mummy.

“I hear the word Coronavirus lots!  On the radio, on the television, I hear my mum and my brother talk about it too… I haven’t been able to touch it… whatever it is… or eat it… or smell it and it hasn’t introduced itself to me or given me a cuddle.  So I have no idea who or what it is.

All I know is that the word is being said lots and lots – I’ve even heard it in school… and since I started hearing the word Coronavirus things have started to change.

I love school, its where all my friends are and I spend most of my days there.  It’s a really fun place to be and all of my teachers love to play with me all day long.  We sing and play and I go to the pool and sometimes people come and play music for me.  I get to sleep there too sometimes, that’s extra fun as they have a soft play room there with lots of space for me to play.  They have a big park and they take me shopping where I get to find my favourite snacks on the shelves by myself and take them back to school to eat!

I do spend weekends at home and sometimes longer – my Mum calls these the holidays!  I always know when they are coming as my Mum tells me about them and she takes me lots of places. We never stay home – we sleep in all kinds of places! There is normally lots of driving – my Mum never stops taking us places. But it is fun!

One day, I just didn’t go to school anymore. At first I thought I might have got confused and it was my weekend at home, but it’s been a while now and I’m still not going to school. Every morning I wake up and say to my mum “School school school, get dressed” but she just keeps saying “not today baby“…..

It don’t understand why, as it was something I have always done and now it’s just stopped.

I like to go to the shops with my mum, she takes me there and I get to push the trolley and put things in the basket, I get to use my cane too.  There are lots of exciting sounds and smells!  It always seems to be very busy I can hear lots of people rushing around.  I find the whole trip very exciting.  A nice lady always talks to me at the end of the trip too, she knows my name and says hello, it’s nice meeting new people, but I haven’t been shopping for a while now…

I don’t understand why it is different now, as it’s something I have always done and now it’s just stopped.

I like to go to the park with my mum, she takes me there lots!  I love to be outside and hear all the other children playing.  I enjoy walking there and using my cane like a big girl!  There are so many different things that I can play with, I can bounce, spring and spin!  My absolute favourite thing to do there is the springy bench, it’s so much fun getting to jump up and down. We don’t go there anymore either…

I don’t understand why it is different now, as it’s something I have always done and now it has just stopped.

I like to feel things with my mouth, it’s my way of understanding what things are!  It makes me happy to do this- although my mum always tells me ‘yak dirty stop‘ I try to do it all the time.   I really understand what things are when I feel them with my mouth and it makes my tongue feel very excited. My mum gets cross now, she seems to catch me every time I try to do it and shouts “Scarlett no stop”….

I don’t understand why it is different now, it’s something I have always done and now it’s just stopped.

I like to touch everything around me with my hands, I use the walls to help guide me where I am supposed to go.  It’s the only real way I can know what things are is by using my hands to explore, I’ll touch everything! My mum is stopping me all the time now…

I don’t understand why it is different now, it’s something I have always done and now it’s just stopped.

I used to go to concerts and listen to music every week, it was my highlight, where I got to dance and sing, it makes me very happy.  Every Thursday I would go to a place where there were lots of people, everyone seemed to know my name and say hello.  People played music there and it would be so much fun, they would play the songs I listened to out of speakers at home too, it was enjoyable to listen to those songs played on instruments…

I don’t understand why it is different now, it’s something I have always done and it’s just stopped.

I just love to eat, I do it all the time, it’s like one of my favourite things to do, my Mum always has the things in that I like best!  Lately my favourite food hasn’t been in the house as much. I ask and ask and ask and ask, but no matter how much I ask I don’t get it anymore….

I don’t understand why it is different now, it’s something that has always happened and now it’s just stopped.

I really hope things start to go back to normal soon. I feel better and less worried when I know what is happening. It is my way of understanding the world around me.  My routine is very important to me and it’s strange and confusing now as I’m not getting to do the things I am used to doing and the things that make me happy!

I must admit though, I am really enjoying having a nice lie in every morning!

Here at VICTA we understand that your child may find adjusting to change more difficult than other children.  If you need any help or advice please do get in touch with the VICTA team and we will do all we can to help you and your child.  If you have any stories that you wish to submit about how the Coronavirus (COVID-19) is affecting your family then please do get in touch.  If you want more information on current legislation relating to children who are have an EHCP please click here. If you have any health concerns then please follow NHS Guidelines.

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