Laura cares for her young son with learning difficulties.

I care for my eleven-year-old son, Oliver, who has special needs. My caring role first started when he was in hospital following his birth. He was born premature so has had various illnesses, challenges and several disabilities since birth. Although, I did not feel that way as I was doing what any parent would, looking after my child. However, when I look back, I was managing a lot of things that another mother may not be doing.

Caring from the beginning

When Oliver was born, he needed to be fed through a feeding tube. He was on oxygen therapy 24 hours a day and took multiple medications. When he came home after four and a half months in the Neonatal Intensive Care Unit, it was normal to me as I did not know any different as a first-time Mum. However, I soon realised that I would not be able to go back to work as they had declined my application to come back part-time and I was not comfortable with my son going into a nursery setting as he was susceptible to infections and illness. This had an impact on our finances as we lost a full-time wage. More than that, I missed out on nearly five months of maternity leave which was quite upsetting as I wanted to spend quality time with my son when we brought him home.

All Consuming

I found that the only focus and energy I had was all for my son. There were so many appointments in different areas of the City and at the time I did not drive. Journeys were difficult as it was hard to fold down a pram on a busy bus and find a space for myself, my son and his oxygen tank. I threw myself into my son and his care and it was a different world from what I was used to.

When my son was around eighteen months old, we soon realised that he had additional needs on top of his medical needs, and I had to spend a lot of time and energy gathering evidence, attending appointments and managing my son’s behaviour when he became frustrated and upset. When he was three he was diagnosed with Autism, Global Development Delay, Sensory Processing Disorder and likely an Auditory Processing Disorder (Undiagnosed).

Fighting for Oliver

We have been so lucky with the many provisions my son has received over the years and I am grateful for all of it. Although, I had to fight for it and justify every little thing. At times I felt as though some of the professionals did not believe what I was saying until they witnessed it for themselves, and this was hard on me mentally. As my son’s mother and carer, I knew I was his advocate; he deserved the best and nothing less.

Feeling guilty

Between the ages of two and eight, it was quite hard to manage as my son struggled with his emotions and became frustrated very easily. His emotions were (and still are) usually to the extremes, so when he is happy he is really happy, however, this means, that when he is sad, upset or angry it can affect the whole household because everyone knows about it. My son is now eleven years old, he is happy, healthy and has the best personality. We love him more than anything in this world!

My needs came second at all times when he was younger and it was hard for me to realise that I wasn’t looking after myself as well as I should. This had a negative impact on my son when I was too tired to play or hospitalised myself for infections that I did not act on soon enough as Oliver’s wellbeing was always my priority.

I was, and still am, very lucky to have a wonderful husband, an amazing family and friends who do so much for me and my son. Without their support, it would have been very difficult for me to cope alone. With this support, I have been able to go to University and study for a degree that I am close to completing. I have only been able to do this now as my son is a little older and we have the right support in place. His needs were too great before this point in my life and the guilt would have been too much for me. The school, us and of course my son, have all worked hard so I have finally reached a point where I do not feel as guilty when I am at work or university.

Finding support

Services like Unpaid Carers Support are essential for carers in Southampton. Not only can they signpost to other organisations that can help support carers in many different ways, but they are a listening ear, as I know it can be very lonely in a caring role. I feel so lucky to have had an opportunity to be a part of their team during my second placement as part of my University degree and have seen first hand what they can offer and the positive effect they can have on carers.