Jamila lives with her two sons aged five and six. Her younger son, Hamza, is severely autistic with learning disabilities that mean he is non-verbal and incontinent. He has been under medical and social care since birth.
The impacts of lockdown on this family are extreme. With school closed and social care provision on hold, Jamila is faced with a huge challenge to care for her boys on her own in their small flat. “I live in a prison with Hamza always, but Covid-19 lockdown has made it worse,” she says. “He self-harms when in distress. Since the start of lockdown, we have him for 3 weeks screaming and neighbours banging on the walls. It’s also difficult for my other son. He is at home all the time with his brother screaming and headbanging and having a meltdown.”
Ensuring Hamza gets the right food is a problem because there are many foods that he won’t eat. “At the start I had a letter from the government to say we are very vulnerable. But we don’t seem to have got any help as a result,” she says. Jamila was not able to get any supermarket delivery slots. “They said if you have not had a letter from GP or NHS you need to contact them to request that you could be included on the shielding list. The health visitor refused to register him but the social worker helped – she brought nappies and some food.”
After some time, Jamila managed to get some of the right foods. “The rationing has eased up but the shops have not accepted us to be on the vulnerable list.” Jamila is very anxious to protect herself and her children from Covid-19 and fears that venturing outside with Hamza is too risky. “Normally he loves to go outside but the problem is that he grabs things and he licks everything.”
In normal times the family relies on a lot of support including a health visitor, an occupational therapist, a dietician, a social worker and a paediatrician from the Royal Free Hospital. But much of this has been affected by the lockdown. “Hamza has a carer 4 hours a day. She has still been coming but it’s not safe for her to come inside or take him outside. Instead she’s been standing in queues at shops to get food, nappies, and medicine. It ends up taking up all her time.”
The play provision that Musa, her other son, normally attends is also closed. “The paediatrician has called and sent the medicine. The occupational therapist has spoken to the dietician and has been in touch trying to support. The social worker came on her free day and brought some cereals that Hamza will eat as well as nappies and paracetamol that I need for him.”
Another form of support has been the local mutual aid WhatsApp group. “They told us about the food hub close by and gave me contact details for a volunteer but I haven’t really followed up on that,” says Jamila. “There is lots of information on social media and family and friends have passed on information to me. I speak Somali but I don’t need information in languages other than English. I have a cousin in Sweden who sent us food.”
With some of the issues around access to food easing up over the first weeks, Jamila felt slightly better. “I’m a bit better than last week — as long as I can manage with the food. We couldn’t find food for him — it was terrible. Having a child screaming from hunger is unbearable.”
However, the stresses of being stuck inside had not eased. “The neighbours have been banging on our walls and on our door and now they are calling the police because of his screaming. His behaviour doesn’t normally affect them so badly because they are not at home all the time,” she explains.
As the weeks went on, things did not improve. “I’ve had a bad time. My son is in a bad way. He cannot drink. A lot of crying. He is not well. We haven’t slept for two nights.” She had contacted the GP and had a telephone consultation. “Normally they would examine him. It takes four people to hold him for a physical examination so this time it was just guesswork."
Jamila asked the social worker if they could organise some respite and they offered to arrange a session for Hamza at a play centre. But Jamila felt she could not take up the offer, as there was no safe way to travel there due to her son’s tendency to grab and lick things where he comes into contact.
“I called the social services line this week but no reply. They know how to hide when they want to. They know us. They wanted me to meet with a new social worker but why start with a new person during the pandemic just meeting her through the phone? What’s the use?”
Another problem is that Hamza breaks things in the home such as the safety locks in the kitchen. “I usually get a handyman to mend stuff once a month or so but I can’t get him now.” To add to her difficulties, the special wheelchair buggy that she needs in order to take Hamza outside is broken and can’t be mended in the lockdown circumstances.
Better weather had improved Jamila’s mood the following week. “Well it’s nice weather — we are okay. I am going to try to go out and take the children out with the carer because they really need to go out.” The heat also brought challenges. “He has a special bed which is waterproof and fixed to the floor. It’s sweaty in the hot weather. He hasn’t slept. I was planning to get a handyman to get air conditioning on the ceiling to help but I can’t do that because of lockdown.”
Jamila is also growing more concerned about the impact on her older son of missing school. “My computer is not working. The school sends some work on paper. But his brother rips it up. So we wait until Hamza is asleep and then Musa can do his homework. They said that a child who has a social worker can get a laptop for the children to do homework.”
The Child and Adolescent Mental Health service had called about doing an assessment and had offered a therapy session online to help Hamza calm down. But without a device to access the internet this was not possible. In a positive development, the social worker had been liaising with the housing officer to intervene with the neighbours and ask them to be more tolerant.
Also, Hamza had been offered sessions at the Greenwood Centre. Jamila is frustrated. “We must take two buses to get there! And other passengers complain at Hamza’s behaviour and get angry which makes it hard for me. When I told them we can’t get there they said that’s the only thing they can offer. So I guess then they tick a box that says I have turned it down.”
The following week Jamila’s resilience was weakening. “I’m worn out,” she says. “I am physically and mentally tired and the children are tired of it all too. Hamza has been very difficult. Not everyone can follow these lockdown rules, especially if you have a child like mine. He is scratching and eating the wallpaper and throwing things through the mailbox. This lockdown has really affected him. We need a chance to recover.”
This week Jamila had been trying everywhere to get help. She had even called Islington social workers who told her they couldn’t do anything for her because she was from Camden. She had asked the Camden Early Years team whether she might be entitled to a short break for respite but they explained it was very difficult to offer during lockdown. “We celebrated Eid alone and a friend brought some sweets to leave at the door.”
Another issue facing the family is the return to primary school for Musa. “I won’t take that risk,” says Jamila. “There is nothing that this government is telling us is believable. It’s not clear and I am following my instincts which say no it’s too soon. You have to follow your instincts sometimes as a parent.”
Although Jamila is in contact with a wide range of services, she feels that none of the support offered is appropriate for her and her family’s needs. “I didn’t agree with the Education, Health and Care Plan and we are waiting for mediation,” she explains. “They all say we cannot help and with each new service they have to start over again with assessments and they twist the words and give you false hope. I am willing to pay myself. I just need help to find things that will help.” Meanwhile, the stress of lockdown and the prospect of having to continue to isolate while others start to return to school and other activity is taking its toll. “I don’t want to do something desperate but it’s just total burn out for me now. What’s the exit? I have no support — nothing. If I get sick who is going to look after my two boys?”
At her last weekly interview, Jamila reported that things continued to be tough but there was some good news. “The only good news is that McDonalds re-opened yesterday. We got delivery and he ate two happy meals in one sitting and he was so happy.” They had also ventured outside. “For the first time I took both boys out for a little walk close in the area when it was quiet at 7pm. It is very challenging but baby steps….. just a few minutes out.”
In another step forward, it has started to feel safe enough for the carer to come inside. “She is very careful. She puts on face mask and gloves and shoe cover. She cannot risk working with Hamza but she took Musa out for a while so he got some respite,” Jamila explains.
Also, arrangements were being made for them to receive a laptop from Camden so that Musa could connect with school and the family could access some online services. However, this week they also had to cope with a serious incident. Jamila explains: “Hamza’s behaviour changes. In the first month we had the screaming and head banging. Then he was eating the wallpaper. He puts everything in his mouth and destroys everything. It’s very dangerous. Now he’s obsessed with the door.”
The kitchen door must remain shut for safety reasons as Hamza has no awareness of danger and is a risk to himself and others. This week the door got stuck. “The medicine was shut inside as well as my phone so I couldn’t call for help. After two hours trying to get it open I had to knock on my neighbour’s door to get help and use the phone. I called the police — I had no choice. The officers came and got the door open for me. It was very embarrassing and I am ashamed to have had to disturb the neighbour — I’ll have to send a thank you.”
Reflecting on what might have helped her cope better with lockdown, Jamila says “I think it would have helped if we had a bit more warning that lockdown was coming so we could have better prepared the vulnerable. I hadn’t got stock in of the special things I need to look after my son. And, if I had warning, I could have made arrangements for my other son to stay with relatives so he wasn’t locked in with his brother screaming all the time and could do his homework. I wish I had been able to prepare.”
With all that she has to cope with, Jamila still manages to keep a sense of humour. “You have to laugh or what can you do?”
All of the Covid-19 personal stories can be found in the 'Life in Lockdown' report.