Margaret and Lewis’s story

Margaret lives with her husband and five children including her youngest child Lewis, who is 4 years old. Two of Margaret’s children are at secondary school, and two (one at school, one a young adult) are autistic.

Images from Margaret and Lewis’s discussion.

Margaret

Have you talked about coronavirus with your child? What does he understand about it?

We’ve not really talked about it, we’ve had so much going on at home because my husband is not too not well, since before lockdown, so we’ve had a lot going on. So, we’ve not really talked about it but he does know a wee bit about it because his sister she works for (key worker) so he knows that when she comes in she has to be really careful and stuff. So he’s grown more of a bond with her because he’s scared something happens to her. But Lewis struggles with his emotional and social skills so it’s quite hard for him to express sometimes how he’s feeling. So with his sister, he doesn’t settle until she’s home from work and things like that. But I’ve not really had to speak with him about it. He’s not a kid to sit and have a conversation, he’d rather dash about doing stuff. But he knows we’ve got to keep Daddy safe because he has (condition), so he knows that. He understands he needs to wash his hands and keeping himself safe.

I think he has struggled. He is used to structure and routine so when everything went into lockdown he really struggled with his behaviour and how to express himself, I found it really did affect him in that way. Because he would normally go to nursery 9 to 3, and during that time in lockdown it was like trying to keep him amused, but he’ll like do something for 2 minutes then he has to go on to something else, like dotting about, so trying to keep him amused plus have other kids in the house as well was quite hard and he was quite angry. His behaviour spiralled a wee bit but since being back he’s settled in really really well.

What was it like in those first few weeks of lockdown?

Well, everything closed but what (third sector pre-school and family service) did was phone you every week and I looked forward to that every week because that gave me that wee bit of ‘well there’s someone out there who wants to know how I’m getting on’ – so not just there for him but for me as well. It was a case of them checking in and I could say things like ‘Well I’m really struggling this week, his behaviour and stuff’ and they were like well leave it with us and we’ll see what we can do. They were open for like emergency situations as well, so we did a referral and that’s how we managed to get him some time back here.

So, he got a place 2 mornings a week which was great, like a really good deal because I have other responsibilities at home. I have two other children who are both autistic, so with the wee one’s behaviour, and as I said with Dad not well, there’s been a lot going on at home. I think there were already upsets for him, with routines changing because his Dad had been doing everything, bringing him to nursery and picking him up so when Daddy took not well last Christmas time, before lockdown, it was a case of well, Mummy has to do everything. Daddy was in the hospital for 5 months and so it was a lot of change, then Covid came, and obviously, that hasn’t helped matters. So I’d say over a period of time it was a loss of structure that he struggled with big time.

You know at the start of it all pretty much everything disappeared in terms of support, everything. Not like we had much support before but with my husband being really poorly as well I was doing everything myself, well I still am, well obviously their Dad is still there but I’m doing lots of care for him too. It was quite a struggle when everything just stopped. I was like ‘oh my god’. It was hard just trying to keep everything together. You know you are trying to keep their routines, keep them happy and make sure they’re okay.

How were those first weeks at home?

Well, with children with autism it’s all about routine and structure. We are in a flat, there’s a wee tiny garden at the back. But because the youngest does struggle with his behaviour I couldn’t just let him go out with his sister. So another good thing that came about was that (third sector pre-school and family service) got me in touch with (local agency) and they were like able to help with the carer side of things, they got me funding to get a trampoline for them, in the back garden. It keeps them occupied for hours. And I can just look out the window and see them, it’s safe.

The kids have got Chrome books from school, so they could get on them, but there were days when they wouldn’t go on to do their learning. The wee one has got his own wee tablet as well that he can play games on. But with a four year old with lots of energy it’s been hard, very hard.

Support wise, did things begin to change?

So, as I say it started with 2 mornings back at (third sector pre-school and family service) which was great. Then they got me in touch with other organisations like for children and their wellbeing, things like that, I found out about other clubs. They got my next child who is still at primary into the school club, 2 days a week. We just hadn’t been able to do any of the teachings at home, she just struggled. But the school helped us think not to struggle with it. And when she got in the hub for the 2 days she was doing school work but also enjoying herself as well which was nice.

Have things started to change again recently?

Since Lewis has been back at (third sector pre-school and family service) and at nursery 2 days as well, well there’s been a big difference. He’s a lot more chilled, a lot happier within himself, he’s just so smiley, he’s very talkative and likes to make up stories and stuff. I’d say he’s back to being the same wee boy as before all this, a lot happier and more settled. He was meant to go to school this year but with the lockdown we kept him back because his social and emotional skills haven’t developed enough yet, so he struggles a bit. We aren’t sure if he is on the spectrum as well, just because of his behaviour and the way he is, the way he acts. But he seems calmer, his behaviour was a big thing at home, but he’s chilled. But he’s not 5 till January, and he’s enjoying being back, he has more confidence and he’ll ask for help. Like if he fell or needed help he wouldn’t ask, but even in the month back he is happier.

Being just 4, what do you think he struggled with most during the lockdown? Was there anything he liked about that experience?

I think he struggled not going out so much, seeing his friends. When he came back here to do just the 2 sessions he was a bit clingy but when we explained that I’d be back he was fine. But at home, we were getting on top of each other, different routine. But he did enjoy the things we did together, the arty stuff, or the days we went out for a walk, especially with his big sister, he enjoyed the family time. But to be fair he is happy back here, running about.

What about for you? What has been the toughest thing over the past few months?

Just obviously keeping everything going, keeping ahead of everything, making sure I had food in, making sure there were things to do every day. There was only me who could go to the shops, just making sure there’s food. I had never done an online shopping before, it’s not something I’d recommend, you get stuff that is soon out of date. So it was just keeping everyone’s spirits up, keeping it going that was the toughest thing. Obviously I got there, but it was a struggle.

There were food parcels available too, but you know I struggle asking for help. I admit that. People here say ‘you don’t ask for help when you need it’ even the school were like ‘do you need anything?. It was good people were offering so I could say yes.

How were you feeling about nursery re-opening?

I was fine. I was happy for him to be back. As long as they were washing hands. I knew the place would be clean. But it was more about his wellbeing, his mental wellbeing and state. He needed to be back in a place where he could just be him, run about and play, be happy. I knew that being at home he struggled quite a bit because he found it hard to express himself and let of steam, so yeah, I was happy for him to come back. To get a routine. He wasn’t worried about coming back at all. It’s been going great even though it’s different at the gate, you drop them off. But he knows it’s a new routine, the way they have set it up is brilliant. But being back is great. He has settled in, made new friends and coping a wee bit better to be fair.

How are you feeling about the next few weeks and months?

It’s quite daunting to be fair. Because you don’t know what’s going to happen. They are talking about a second wave. And you are trying to put things in place because I’m always one step ahead of my kids, with them being autistic you’ve got to be that way, making sure I have enough in – food, resources, things to do, things like that. It’s quite scary because then obviously I have adults to think about. The grown up kids at home are key workers. I have to make sure no-one brings Covid home because my husband is poorly. It’s about being on top of everything. So it’s not easing off, I’m still in that phase where this is what has to be done, wash your hands, sanitizer everywhere, after every visit to the toilet, coming in the front door… and living in a flat it’s not ideal either because you are sharing entrances. So it’s about being extra vigilant.

What would really help you and your family in the coming months?

I normally watch the news, I’m always on the internet finding out what’s happening. I think just being kept informed about what’s going on. I feel like I’m managing so far. As long as I’ve got like enough food, a roof over our heads and enough stuff to keep them amused I’m quite happy.

Lewis

I am 4 years old. My playdough is a family portrait. I love drawing and I love baking. That’s mum, that’s a cat, my daddy, my sisters and brothers – and me. It says my mummy keeps everyone safe because that’s what she does.

I missed my friends because of coronavirus. So you’ve still got to wear a mask. Mummy, why do you wear a mask? (Mum: So you don’t get any germs) And I’ve got a hanky in my pocket. So I keep my hanky just for me. I felt happy to see my friends again. This is a picture of me and my friend. When I went there I just washed my hands and had everything to eat. We just went running out. I do have questions about coronavirus but I don’t know what. Coronavirus can make you sick, it can make you very very ill. So, when you’ve got to fight Coronavirus how do you fight Coronavirus? And I wanted to tell you I decided to stop watching YouTube for so many days because it was about Coronavirus.