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Reflections on being a Parent Carer - Steph Ward

At my 20-week scan it was found that my son Lyall had a serious heart condition and it was highly likely he would have Down Syndrome. We were offered a termination and it was at this point I truly understood what “a woman’s right to choose” actually means. We chose to continue with the pregnancy. The amazing smiley Lyall was delivered at 38-weeks. His name means fearless lion and he’s needed to be!

His first 5 years were dominated by life threatening medical conditions. As he got older it became clear that he had other challenges. He was recently diagnosed with Autism.

Lyall is now 12 and attends a brilliant specialist school. He has good friends and an enthusiasm for the things he loves which is infectious. Current passions are trampolining, bowling, Strictly, fish and chips and going for walks. He loves to dance and says he wants to dance on a stage in a theatre like his big brother Max.

It’s really, really hard

No one could question my love and commitment to Lyall and the immense pride and joy that comes with being his mum but it’s hard; really, really hard. Whilst he is lovely, caring, compassionate and absolutely hilarious he also gets very anxious and overwhelmed. When he starts to struggle he can become aggressive, rigid, and challenging and it is really hard to bring him back from this. Whilst I try to always be one step ahead of him - anticipating his needs, reactions and triggers, this isn’t always possible. There are times when I reach complete exhaustion.

I haven’t looked after my own health very well. When Lyall needed 24-hour care we had nurses overnight. It was such a trauma that we decided to do it ourselves so we spent every other night doing a waking night with him. My health and wellbeing really suffered. I don’t talk to many people about my role as a carer. A lot of my friends don’t get it and I particularly think they don’t get what parent-carers do. It’s hard for a parent to identify as a carer because it’s what you’re expected to do.

Lack of support

When it comes to support services, the constant battling is draining and nothing ever comes easily. There are not the services out there to support people with disabilities either as children or when they move into adulthood.

Over the summer, I only had 2 half days of play scheme provision and then no more than 4 hours a week of direct payments to employ a personal assistant (someone that can help support Lyall). I could not even contemplate working full time. I use almost all my annual leave for childcare. School transport is a nightmare. There aren’t enough specialist school places, and mainstream education can’t meet his needs. The transition from child to adult services terrifies me: I worry about the quality of supported living options; the benefits system is a mess; and the list goes on - and that’s before I try to contemplate what happens when I’m no longer here.

I fear for Lyall’s future. I feel guilty about the role and responsibility his big brothers may choose to take on in years to come. We do not live in a world where people like Lyall are valued and recognised, however Lyall has so much potential and so much to give. I want him to grow up in a society where he and everyone like him achieves their full potential, and that is celebrated whatever it may be. I wouldn’t change Lyall for the world but I will do all I can to change the world for him.

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