UK Disability History Month 2023: Being Ted's Mam

My son Ted (or Edward as he likes to be referred to now) was born in November 2006 following a long and traumatic labour which left him with Dyskinetic Cerebral Palsy. It is a lifelong condition resulting from oxygen starvation which has affected his ability to walk, sit, talk, and eat. This means that he’s now reliant on me and his dad for almost every aspect of personal care. This includes going in the shower, getting into bed, getting dressed, taking medication, and eating. Pretty much everything really!

The first few years of his life were incredibly difficult, both for Ted and our wider family as a whole. So many hospital stays and appointments, missed milestones, and heartache. Sometimes when I look back at that time, it feels like I wasn’t there at all, but now understand that this was just my way of coping.

All of the dreams, expectations, and hopes we had for our boy had now completely shifted, and I certainly had a few years where I felt bereaved. I think it’s safe to say that there are so many complex emotions that most parents feel when they have a child with additional needs. Having feelings like anger, guilt, and sadness can make it more difficult to make sense of it all. But I also think it important to balance this with my pride and admiration for Ted as I watched him grow into one of the most thoughtful young men I’ve ever met, with an unreal sense of humour.

I should imagine that there are lots of people who are parents to disabled children who will cringe at the thought of being referred to as a carer! That term certainly doesn’t sit right with me, as the love and care that I provide for Ted is just something that I do out of love, like any other parent! But I also think it’s important to recognise that being a carer comes with an alternative set of experiences that most parents won’t ordinarily have to deal with. Such as the worry and stress of their child being accepted for who they are, whether they’ll be able to work and be independent, to the most uncomfortable thoughts about what will happen to them when I’m no longer here.

If I could share my experience with other new parents going through the same kind of thing, I’d say if I had to do it all again…

• Look after your mental health – a difficult thing to do when there’s so much stress and pressure but it’s worth the effort. Even if it means sitting outside in the garden for 10 minutes and having a silent scream then do it. I’ve always found the mental health charity MIND a great source of information and they have specific advice about being a carer.

• Engage with local services and charities for support – there are so many out there. Each local authority has a Special Educational Needs offer – just search ‘SEN local offer’ with the name of your council to find out more.

I joined the NHSBSA when Ted was about 3 years old. I’d always been interested in working for the NHS, and the sustainability role I applied for was the next exciting step in my career, but what really swung it for me was the flexibility it offered. This meant I could balance my caring obligations whilst still being able to have a career – something that I’d worked hard at before I became pregnant.

I’ll be eternally grateful for the opportunity I was given to work at the NHSBSA and the support that’s been provided because there were many times when I thought that I’d have to give up work, which had always been such an important part of my identity and purpose in life. Having something outside of being ‘Ted’s mam’ kept me sane and grounded when things got tough!