My son has autism, learning disabilities and a form of ADHD. He is excessively hyperactive.
He also has a condition called ‘pica’ – which means he has a compulsion to eat inedible substances. We can’t leave things out like remote controls because he has a history of eating batteries – and then needing an admission to hospital. There can’t be any matches hanging around because he licks the sulphur off the top of them.
Because of his extreme behaviours we almost have to live under siege conditions. The living room, the dining room and N.’s bedroom and bathroom are the only rooms that are accessible to him. There are no home adaptations required because of a physical disability, but we have had to have locks put on all the doors.
N. cannot be unsupervised. The level of supervision required is similar to what you would give to a child of three. But he’s very canny – and he’s 6ft – so I have to have eyes at the back of my head. He takes some managing.
At home, I don’t have any ornaments or any pictures on the walls – because he breaks things like that. I can’t have things like air fresheners. He managed to drink the contents of a plug-in one – which is incredibly poisonous. That was a new one on us. Anything he can get hold of he will eat. So, I have to minimise what we have in the house.
N. is twenty-five and has a twin brother J. who also lives here, but has just gone away to study Performing Arts. I have been on my own with the lads for about seven years and have been living here about eighteen months.
N. is quite a fit young man. In addition to his autism he has hyperactivity, so we have to keep him exercised – which is good for us. It keeps us fit as well.
At the moment carers come in the afternoon and they walk him. Then after I finish work, I walk with him for another couple of hours. He walks about 10-15 miles a day. I have walked more than 1500 miles since the beginning of lockdown – N. has probably done in excess of 2000!
When lockdown first eased people were asked not to use public transport. I don’t drive, and my daughter lives in Manchester so… we walked to Manchester. It’s about 18 miles there and back. N. loves walking and after 18 miles he looked as fresh as a daisy, still skipping along in front.
It’s an urban walk – but with lots of fields. We took short-cuts through a couple of parks so it was a very pleasant. That was in the days when there was no traffic about. The air was fresh. It was a sunny day. The birds were singing. We had nothing else to do and it was the only way we could get to see my daughter so we did that a couple of times.
We didn’t feel we could say it was an ‘essential journey’.
N. walks at a good pace – about 7 km a hour – which is pretty fast. I’m lucky that I live quite close to the countryside. There’s been very few days in the past six months that we’ve not been able to get out with him.
Pre-lockdown: I work full time so I have a support package in place. Two carers come in the morning and take him to a day service. They pick him up there about 2.30pm and look after him at home until I get back about 5.30-6.00pm.
I chose to take him out of the day provision because he was in contact there with something like 60 people over the course of a week. The risk was too great. I made arrangements for the two carers, who usually bookend his day, to do full days with him. When we went into lockdown, they needed to shield/ socially isolate. That meant I had a period of about four months with no care whatsoever. It was just myself and J. looking after him.
It’s been fairly full-on.
We live in an Edwardian terrace house. There are three bedrooms – one for me, one for J., one for N. – and a bathroom. There’s a lounge to the front and a dining room to the back and a kitchen extension. It’s very much my kind of property: period and spacious with high ceilings and picture rails around the wall. I wouldn’t change much about the interior. It’s a nice place to be.
N.’s bedroom is very minimal. It looks awful – it looks like a cell. All he has in his bedroom is a bed because the more things he has in his room the more mischief he can get up to.
The rest of the house looks nice. We don’t feel uncomfortable but I can’t have things hanging around that other people would, because he will either eat them, break them, hide them or throw them out of the window. It’s quite common behaviour for someone with autism.
Another behavioural issue he has is that he gets some sort of sensory stimulation from urinating on the carpet. He cannot have carpet in his bedroom. We have to have washable surfaces in his bedroom. So, to some extent it is adapted for him but it’s largely to manage his behaviours, rather than an actual disability.
The theory is: a typical room that you would have for a child with bright colours (wallpaper, bed clothes, cushions) overstimulates people with autism. So, the idea is to pare everything back to create less visual and sensory stimulus to keep them on a more calm, more even, keel.
His bedroom is very plain. He has cream walls, light coloured flooring, cream curtains. I would never buy him vividly coloured bedding. He’s fine with bright clothes and he’s always dressed nicely.
The rest of the house doesn’t look so institutional. Oddly enough, he absolutely loves Christmas. I can put a Christmas tree up with decorations and he never touches it. He actively enjoys a Christmas tree
At home I have set up a formal workspace in the dining room. The bedroom would have been quieter and more private, but I always feel I need to have an eye on him.
I was working in the office today and that felt smashing.
It’s nice to have conversations with other people. N. is totally non-verbal and J. went back to uni last week so, I have gone from not having any time to myself to suddenly being in a house that is absolutely silent… which is strange. So, yes, it was lovely to be back in the office today. It felt nice.
I’m a social person and enjoy the vibe and dynamic of being in an office with other people. You get an energy from being around others. Also, I enjoy clothes and like dressing differently for work than I do at home. Working from home some days I’m in my leggings and a jumper.
I think we will probably be working from home for another 6 months – though it’s really looking more like 12 months. With N. at home 2-3 days a week in the office is the perfect balance for me.
I’ve never really been a ‘garden’ person but because we have been stuck in the house over the summer I have spent more time in the garden. I planted out containers and we have eaten there whenever we could. While we were working N. has often breakfasted in the garden. He will just sit and eat in the sunshine – he enjoys it.
In Rochdale we are living under a stricter Covid regime than the rest of the country.
We can only see people we live with and people in our social bubble. I’m fortunate that my boyfriend lives alone and we have been able to form a social bubble. But, as you can imagine, with the demands of N., it’s not been particularly easy to see each other on a regular basis, at the moment.
It has been very difficult not being able to see my wider family.
I have a very supportive wider network. Pre-lockdown there would be fifteen of us having Sunday lunch together every week with my brother, mum and dad – so that’s all gone. Obviously they are still at the end of the phone – but it’s not the same.
I’ve missed my friends and the informality of …going to see a rubbishy film at the cinema – something that you don’t have to think very much about.
I miss the ‘mundane’ things that I used to do with my daughter.
In normal circumstances I see my daughter three times a week. We might go into Manchester, we’d probably go to the cinema… probably wander into clothes shops and have a drink and perhaps something to eat. You can’t do that at all at the moment. It looks like things will be much less informal in terms of how we enjoy our social time together.
It’s quite isolating as a carer.
My life for the past six months has literally been working – and going walking with N. I’ve done very little else.
I had a week’s break away with my boyfriend but that one week has been the sum total of my respite for the past six months.
The relentlessness of having no care in place has been hard.
Through all this, J. has been worth his weight in gold. But I have the constant awareness that N. shouldn’t really be J’s responsibility. That is a concern to me.
Pre-lockdown I would get 24 hours off every week – Saturday lunchtime through to Sunday lunchtime – which is when I go and see my boyfriend. I normally get Wednesday evening off as well and would stay the evening with him, but I’ve had none of that.
I think this is how it’s likely to be for some time. Social care has been pulled out from lots of people’s lives. There doesn’t look like there is a safe way of putting things back in place. So, it’s difficult. It’s hard and relentless.
N. takes quite a powerful anti-psychotic just to keep him calm. About six weeks ago he managed to get hold of his medicine, drank it, and ended up in in hospital.
It’s all part of this pica condition. If he can find something that he can eat or drink he will do so. He had a two-minute window of opportunity and found it in my bag and drank it. That hit me hard because it could have had a safety impact.
He was fine, but I felt physically exhausted for a good 2-3 weeks after that. I just got run-down emotionally and physically. Just after that I had my (respite) week away and felt perfectly fine since.
All the walking has been good, it has kept me fit. I finish work and think right: off we go for two hours! I have spent so much time outside – I must be doing all right for my Vitamin D!
Largely, through all this, I have felt good. I’ve not felt depressed…. I’ve never felt down, or low mood. But, it is very, very tiring – because I have to be ‘on it’ all the time, with eyes at the back of my head. I can never relax.
A typical day in lockdown, I would wake up early and start work about 8.30am. I would leave N. in bed as long as I possibly could. He would wake about 10.30am and J. would bath him and give him his breakfast. I would be working while this was going on and then J. would take him out for after his lunch and walk him about 6-7 miles during the afternoon while I would carry on working. Then I would do a similar walk in the evening.
Every day was exactly the same – a sort of monotonous routine.
On Saturday and Sunday I could have a bit of a lie-in. But essentially, all we could do – was walk. We used to break off to listen to the daily Covid announcements – and then they just got too depressing, so we ditched those after a while.
My evenings are taken up with being outside, so I don’t watch a lot of TV. When the nights draw in we will probably still walk but we will have to find safe walking routes and probably won’t walk quite as far.
The great thing about working from home is that I can log off work for five minutes, get the washing out and it’s all done and sorted by the end of the day. The tiny little things that become a ‘big job’ in the evening are significantly better, such as keeping on top of the laundry and things like that.
It sounds like something and nothing… but because he is like a young child it means his clothes have to be washed every day. I probably have to change his bedding three times a week. The washing machine is constantly on.
On the night that Boris Johnson said we were going into lockdown I was absolutely horrified at the prospect of what was coming. I knew it was all going to fall on mine and J’s shoulders.
But it’s not been as horrible as I was anticipating. The fact that this has happened in the summer has been a significant part of that. I think the winter will make a different impact on people and create different problems.
Because of the good weather we’ve were able to meet my mum and dad outside three times a week – sitting in a park. We looked like we were in a spy film. They sit on one park bench, we sit on the next one, and we talk to one another with a 6ft gap in between. My dad has dementia so it gave my mum a break from just being in the house all day alone with him. So, we have been able to find ways to make it work.
There was a brief window of opportunity when we could see people in our gardens so I had my mum and dad over for afternoon tea. But I have literally invited no-body into the house – apart from N.’s carers who have to come into the house during the day.
Pre-lockdown I would have said: I don’t want a garden, I’d be quite happy in an apartment with just a balcony. The idea of that now horrifies me!
If we are going to be living, like we are living, I think outdoor space is absolutely vital. Lockdown has changed my perception of gardens.
Before my husband and I split up we had a beautiful garden, but because I was having to deal with N.’s needs it just became a burden. Because we have been forced to spend so much time at home I have had more time to enjoy the outdoor space. I’m not having to shoe-horn it into my working week – on top of trying to deal with a profoundly disabled young man.
N. is shortly moving into supported living accommodation, which has been ready since May. But obviously they have to find a way of staffing it and making it Covid-safe.
The idea of him ending up in a regime similar to the care homes scenario where people have not seen their loved ones for 6 months is terrifying – for me, and for him.
I want this to be his ‘forever home’ but I still want to be a part of his life and to see him a couple of times a week.
Making a smooth transition into this new place will be a very important ‘journey’ for him. If suddenly he doesn’t have access to his family we run the risk of it not working.
As and when that will happen, I really don’t know. It should have been May. Then it looked like it would be August. The earliest it could potentially be now is November. But with Christmas it starts looking like it might be January. It’s been a very long process. Seven years, actually!
There will be support for him all day, every day. At night he will have half support, in that one worker will be responsible for watching over N. and one of the other residents of the four flats. They will use assisted technology, probably with sensors on the floor in case he gets up and starts moving around the flat. He may even have a camera in his room – so they don’t actually have to sit in the room with him but they can see him. And I’m comfortable with that.
….Then it really will feel like I am rattling around in this house and I won’t know what to do with myself!
Even if you are stuck within your own four walls, you can still find good things to do.
For me, study was a means of escape from the routine. It is so good to stretch your mind and have something to think about that isn’t… autism… or work. It was a wonderful experience.
I did my degree part-time and actually got a First and a university prize. But that was because it all felt like a treat. I loved it! Oxford offered a Masters specifically structured for people who were working /carers – and that just seemed like it was destined to be. I did it online but there were five absolutely wonderful residencies.
It was the happiest two years of my life – the two years I spent doing my Masters!
As a carer, it’s all about self-preservation and doing what you need to do to keep yourself well.
Never in my wildest dreams did I think I would end up studying in Oxford. It was just such a different focus for everything that was going on in my life; my little escape hatch into literature…art …history. I was keen to do a PhD but would have to live down there at least for part of the time – so, that was not meant to be.
Before I took up studying I used to say: I know how Nelson Mandela used to feel- because I feel like I’m under house arrest! But it’s all about finding things that help you enjoy life – even if you are restricted…. And it’s easy enough to do.
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