Acceptance and advocacy
I have been married to Judith for nearly 29 years and we have four children. We are carers for our third child, Isaac, who was diagnosed with Autism just before his third birthday. In many ways, having such an early diagnosis was helpful in getting the support Isaac needed at an early stage. As most people with a child who has additional needs will know, there is usually a battle to get their needs met. His journey for the last 17 years has taken in two special schools, the latter of which he was residential Monday to Friday. He is now at college and remains residential during term time only.
Having Isaac has been a real blessing. He has taught us so much about acceptance of difference, being patient and the importance of being an advocate for others. Today Isaac is a remarkable and lovely young man. He is largely non-verbal and displays a high level of sensory sensitivity. Although he struggles to build relationships with peers, he forms strong relationships with his carers. He enjoys the outdoors and going for walks.
Sharing the caring journey
I volunteered to be the executive sponsor for Leonardo UK’s Carers Network as I know how important it is to get support from others on the caring journey. I am keen to help the group become vibrant and be able to support those facing the challenging of caring for someone else – be that a young person, a partner. or someone towards the end of their life.
For me, caring is often an invisible activity. It may take up time, but it will always occupy an individual's head space. Having a dependent who needs care means their challenges are never far from the surface. I am hoping that by raising awareness – both within Leonardo and in wider society – we can build greater understanding and support for those who have a caring role outside work.
I also want to help people build networks to share their journey. My wife and I have learned about many options for Isaac by listening and sharing our caring journey with others. Letting people know they are not alone can be so important. It is also an opportunity to make sure people understand their rights as carers. Often people miss out on support because they are unaware of available support.
Managing caring and work commitments
There is always an element of compromise in managing work and caring. We took the conscious decision to allow Isaac to live away from us in support of his education. It has been a hard choice to pass his care to others and this means there is the need to constantly keep a watch on the care he is getting. However, it has reduced the challenge of managing his day-to-day care through term times.
I have always been open in talking to people about Isaac and his autism. This has meant my managers have been supportive in allowing me to take time off to support our son, in particular for the annual reviews of his Education, Health and Care Plan (EHCP). When he was 16, Isaac suffered a significant leg fracture and I was able to spend one of the weeks that he was in hospital alongside him, away from work worries.
The most important aspect I have learnt is to be open in sharing the caring journey and trying not to compromise when caring needs to be put ahead of work commitments. Additionally, I want carers to know they are not alone and that those in the Carers Network and wider organisation are there to support you.
Based on my own experience, I would strongly encourage people to be open with their caring needs, in order for their managers to be aware and ready to support – especially when caring is going to take time out of the working day. Employees must also ensure they know their rights as carers and be aware of the support the company can offer.