We spoke to Leane about caring for her young autistic daughter and the challenges that brings.
Leane’s plans for her life were falling into place. Married with a happy toddler, she was studying for her Master’s degree with plans for a career as a Pharmacist. As her daughter reached two and a half, she started to complain of pain and have seizure-like episodes. What followed was a year in and out of hospital with seemingly endless tests to discover what was wrong. No physical reason was found, over the next three years Isla was diagnosed with Non-epileptic Seizure Disorder and Autism in addition to other medical diagnoses.
During this year, Leane had stopped her Master’s to become Isla’s full-time carer. It was a huge adjustment in a short space of time for Leane and her husband, Tom, as they needed to learn how to look after an autistic child.
“It took me a long time to accept my life is going to be a lot different than I planned it. I felt isolated, alone and overwhelmed. I didn’t have a great support network and I knew I needed to find support.”
Leane doesn’t remember how she found out about Carers First but is glad she did. She had a Wellbeing Assessment which looks at the different areas of your life to help you pinpoint where you need support. It also helps you identify what you might already have around you to help yourself. Leane was helped with looking at employment and careers. Through Carers First, Leane is also enrolled on an online course for carers of Autistic people, this has given her the chance to meet (virtually) other carers and share their experiences as well as giving a great insight and understanding into autism.
In November 2020, Leane was encouraged by Helen, her Carer Support Adviser, to attend a new four-week Carers First Empowerment and Wellbeing course. This course would use Neuro-Linguistic Programming (NLP) tools and techniques to provides practical ways in which you can change the way that you think, view past events, and approach your life. After initial hesitation, Leane signed up and six months on (April 2021), is glad she did.
“Without being overly dramatic, it has been life-changing. Even Tom notices the difference. It has had a big impact on my mental health and how I treat myself. I’ve always been hard on myself. The course gave me techniques to recognise when I’m doing this and challenge my mindset. I look for the positive in everything now and I’m much more resilient to the challenges that come with caring. I’d recommend the course to anyone in a caring role.”
Leane has also now come to terms with her new life.
“I’ve realised there is nothing wrong with having to stop and change your plans. I’ve made my peace with it and even on the most challenging days I’m determined to remind myself of all the positive things around me. After so much uncertainty and some very challenging times, our family is much more settled. We are very proud of Isla and the incredible, unique and individual person she is.”
Reflecting on advice she’d wished she had received when she became a carer, Leane says:
“One, make sure you look after yourself, even in the smallest way. You will struggle to look after other people if you’re not looking after yourself. Two, register with Carers First as early as possible. They are such a support. Three, connect with other people in a similar situation. Other carers get ‘it’ in a way your other friends can’t. Whether it’s advice or a moan, it really helps to talk to others going through a similar thing.”
Online Help and Advice
Visit our online support section where we have provided advice and guidance on a range of relevant topics to help you in your caring role.