Carers Week - Parent Carer

As part of Carers Week, we're raising awareness of caring, highlighting the challenges unpaid carers face and recognising the contribution they make to families and communities throughout the UK. 

We are coming together to Make Caring Visible and Valued.

A story about a parent carer

“Home-schooling during lockdown was a challenge, sharing computers and providing Emily with the 1:1 support she requires, while I was still trying to manage my own work diary.”

Dad of Shine member Emily, who has spina bifida and hydrocephalus, tells his story.

"My name is Greg, I have two daughters, Catherine aged 9, and Emily who is soon to be 7. Emily was born with spina bifida and hydrocephalus, as well as many other related conditions. Despite her special needs, she has grown up a little fighter, continually surprising everyone and always smiling. 

Emily is very independent (and stubborn) but requires support to get dressed and to get around. She has a wheelchair when we are out, but prefers to crawl around indoors. She is very sociable and likes to be around people. Despite having limited speech and Makaton ability (which we are working on), Emily is able to communicate effectively with those around her through the use of a few words, expressions, and sounds.

Emily is now in Year 2 at a mainstream school and has a personal assistant, but due to her communication delays, mobility restrictions and continence requirements, she is falling further and further behind her peers. The school have been very supportive to date, but there are the occasional setbacks, where they send her home for no reason or complain about the bruises on her legs! Getting the right teacher and support from the SENCO is crucial for the school to understand Emily's needs and work towards setting her the right targets. This can take time and effort to agree on what is right for your child and care has to be taken to ensure that you push hard enough to get what you need for your child without breaking down the relationship with the school and teachers. Support from outside bodies, such as Shine and various specialists (such as speech and language) is often needed to get the right actions and behaviours in place.

There is a constant stream of checkups and appointments which have to be juggled with work commitments and trying not to miss too much school. Home-schooling during lockdown was a challenge, sharing computers and providing Emily with the 1:1 support she requires, while I was still trying to manage my own work diary. I am very lucky and grateful that the company and boss I work for are flexible and understanding, so do not question when I have to take time off during the day for appointments. They know I will make the time up, by working later on when everyone is tucked up in bed.

At home it's a constant struggle to keep Emily dry as she has a vesicostomy and free flows from a hole in her abdomen, which protects her kidneys from infection, but unfortunately doesn't take into account that nappies do not cover the area that now leaks, especially as she moves around and tosses and turns in the bed. Some nights are frustrating when you have already changed her and the bed 3 times and it's not even 9pm! You have to stay calm, keep smiling, and remember it's not her fault.

Emily likes to do the same things as everyone else and I like to ensure she keeps active so that she can keep mobile. We therefore go to regular physio sessions and swimming, which she generally loves. However, there are times when her stubborn side shows through and she refuses to get changed or engage in the activity when you are there, which can be embarrassing in front of a room full of strangers. It's usually because she is tired or hungry, but as she cannot express herself like other children it can be difficult to work out why she doesn't want to join in, especially as you know that she needs the exercise to build up her muscles in the hope that it will improve her future mobility.

Hope, patience, and exhaustion are the name of the game. It is often 10pm before I finally get to rest for the day, but then there's usually bags to pack, washing or tidying up to be done, or packed lunches to prepare for school the next day.

Despite all of the challenges, my daughters bring me so much love and joy. Seeing my older daughter support her younger sister and seeing Emily achieve something new, even if it is something that other parents might take for granted is so rewarding and I wouldn't give them up or change my life for anything".

We offer support and can make referrals to those caring for Shine members, and we also want those who don't think of themselves as having caring responsibilities to identify as carers and be able to access much-needed support.

Please call us on 01733 555988 or email firstcontact@shinecharity.org.uk to find out how we can help.