Caring Aloud – Johanna’s story

Published: 20 Aug 2024

In the next of our Caring Aloud series we hear from Johanna, who talks honestly about how tough life can be when you’re caring for a disabled child, and how a lack of suitable childcare has prevented her from being in work.  

I care for my little girl who is severely autistic, non-verbal and has learning difficulties. She is 9 years old but she has the intellectual age of a 15 month old. As well as sensory difficulties, she has mobility difficulties and a severely limited diet which causes her many intestinal problems. Currently she attends a special needs school and, at the moment, seems to be happy there. 

Personally, my experience of being a carer has been complex to say the least. On the one hand, I feel incredibly privileged to be the parent of this awesome, highly vulnerable little human that showed me another level of love and compassion I didn’t know I had. On the other hand, caring for a disabled child is filled with anxiety, fear, and isolation, amongst other difficult feelings and emotions. The isolation in particular is the worst part of being a carer. It feels like being pushed aside by both the community and society in general. 

Being a carer is both busy and exhausting. Daily life is full of the practicalities of running a home, but on a bigger scale. For example I have to do laundry every day because of my daughter’s difficulties, as well as clean and disinfect parts of the house several times a day. There’s so much admin that comes from being a carer – forms to fill and contacting health professionals – but it’s also all-consuming paying such close attention to my daughter as she’s non-verbal and therefore can’t communicate when she’s in pain. I have to be super alert to make sure any medical problems are picked up quickly and dealt with.  

There is support out there. One of the charities I value most is a local one that arranges trips and outings for disabled people and their families. They organise everything and hire coaches which has meant we can enjoy some fun times away from home, which we wouldn’t have done otherwise. Also, Family Fund has been really supportive with things like a fridge and sensory toys. 

I was beyond excited when I was offered a civil servant role in the local court in 2023. After nearly a decade away from work I was so grateful to get back and finally provide my family with some financial stability. But only nine months later I had to resign because of the difficulties finding childcare for a special needs child. When I did finally find someone willing to look after my daughter, the funding wasn’t available because the nanny wasn’t Ofsted registered. I felt really depressed that I had to go back on benefits and I lost all hope that my child and I can ever get out of the poverty we find ourselves in. When I was working, being a carer for a disabled child meant I had to leave work a few times much earlier to attend appointments. Although the civil service promotes a work-life balance, there was a noticeable attitude among my colleagues that I wasn’t pulling my weight by leaving early. Overall, the experience of trying to balance work and caring has been a painful one. 

Being a carer has changed my life significantly. Not only is going to work much more complicated, but also I don’t socialise anymore and feel anxious all the time. Going out with my daughter involves a lot of preparation so that it runs smoothly, and I always have to be prepared to return home immediately in case she’s struggling to be out. Family and friends have stopped offering their company. Being a carer has made my world unimaginably smaller and more restricted. I think the lack of recognition of the challenges carers face means that policies, rather than fostering positive support, make it harder for carers. My hope for carers in the future is for us to be seen, valued and included. 

The policy that would have the biggest impact in my life is childcare and having specific offerings for disabled children instead of being lumbered in with ordinary types of childcare. Instead they could be looked at as needing care or therapeutic services. The fact is that most childminders, and I speak from personal experience having emailed 20+ childminders, don’t always have the resources, the training or the desire to look after a disabled child. Childcare for disabled children could include micro-providers, nannies, babysitters and more – people who aren’t necessarily Ofsted registered but can provide an exceptional standard of care/service – for example some micro-providers are CQC registered but not necessarily Ofsted registered. I shouldn’t be penalised or excluded from society and the labour market because I have a disabled child. My child and I shouldn’t have to be marginalised and pushed into poverty. The right policy could make the difference for me and others in a similar situation who want to contribute to society and provide financial stability to their families.