Naiya's story

Hi my name is Naiya. I am 27 years old and a mummy of one. I am currently a stay at home mum starting my small business in creating diaries for mainly special needs families that have a lot of appointments, remembering consultants names, preparing for hospital stays and the general somewhere of noting down appointments. I care for my son who is 6 years old. Although some of the things I do for him are more than what a mother of an abled child would be doing, which makes me fit the calibre of a carer, I describe myself as a mother. I am just meeting the needs of my child. I have been doing it since birth which includes countless sleepless nights and many other things.

When my son was diagnosed with cerebral palsy it changed my life completely. I had to choose between a career and being a carer. I went from being a working individual to a stay at home mum. Which is a huge change for someone who has been working from a young age. It has an effect on your wellbeing, mental state, self-esteem, relationships, friendships and family. It puts you in a place where you start to feel isolated as you no longer want to go out because you can’t be bothered and you’re thinking about rest. Friends stop inviting you out because you never go, you don’t open up to family because they don’t understand the things you go through. You have no time for your partner because the lack of sleep and the constant being on edge makes you angry for no real reason so you don’t really laugh anymore.

In terms of support the system often assumes that because you have friends and family that’s more than enough support. Unfortunately, although friends and family are here to support, they still have their lives which makes it difficult to support you as much as they would love to. It was when my son started school, I started getting a few hours respite when he was at school. Now that he is 6 years old, he is entitled to 3 hours through social services. With that being said I think the things that parent carers experience and go through are under rated and should be more recognised.

It is important that carers get support because caring for someone day in day out can have its tests and trials. These things can really affect your mental wellbeing and if you don’t have someone to talk to about a bad day it can all build up and get too overwhelming. If the individual doesn’t have a strong mental wellbeing they too can collapse into things like depression. I always say that in order for us to be better carers we need to look after ourselves first so the positive energy can be replicated onto our loved ones. It’s a lot easier said than done to have time for yourself as things like guilt often sways your mind from maybe taking the time to maybe go for a walk alone as you feel like you’re leaving the person you care for out and they might feel upset about it. Services such as counselling can help a lot providing that the treating therapist is equipped with the right knowledge of how to support the individual. Support groups are good too, as meeting others with lived experiences are beneficial to help share with each other how they deal with their experiences and also to help with the feeling of loneliness. As often you as the individual feel like you’re the only one going through the experience.