James’ Story: A Parent’s Perspective

Vicki Casserly tells the story of her son James who was born with cerebral palsy.

Vicki Casserly tells of her journey filled with different emotions following the birth of her son James with cerebral palsy. Her journey starts with joy on James’ birth followed some months later by concern and mixed emotions of grief and relief on receiving his diagnosis. Today, Vicki is determined that James will achieve his full potential and enjoy life in his community.

‘I don’t see my son’s disability as limiting my hopes and dreams for his future in any way. My job as his Mum is to maximise the services and supports available to him to allow him to reach his full potential.’

In April 2005, I was excited to learn I was expecting my first baby. My road to parenthood had begun. This journey was to be filled with excitement, anticipation and wonder, and greeted with many expectations. On 5 January 2006, I gave birth to my gorgeous son James, and in that moment fuelled with emotion, all my dreams came true. From day dot, you are anticipating every new day as an adventure, one filled with many firsts—first eye contact, first smile first time to recognise hands, fingers toes and so on.

However whilst enjoying being a new mum, by the time James was seven months old, I had noticed that he was not sitting up properly or maintaining posture. He also had restricted movement and was not physically achieving expected developmental milestones. I was anxiously waiting for him to sit up, roll, crawl, sit to stand, kick his bed covers off—but nothing. And so my new journey began, call it instinct but sometimes mums know.

We first attended Our Lady’s Hospital in Crumlin, where we met a wonderful man, Dr Colm Costigan. He talked me very rationally through his ‘process of elimination’ approach, where they allow a certain amount of time for children to physically catch up in the percentile bracket for developmental checks. In other words, they would wait and see by giving James time to ‘catch up’ in certain brackets, giving him physiotherapy to encourage physical activity during that time.
It was at this point that I caught a glimpse of the road ahead. James turned two and, irrespective of the fantastic physiotherapy and occupational therapy he received from OLCH, it was evident something was amiss. Dr Costigan, gently spoken, informed me that he suspected James had cerebral palsy and he would refer us to neurology for confirmation of that. In that instant, in many ways I felt like my world was collapsing around me, but I also had an overwhelming sense of relief because I finally secured a diagnosis which would help us move forward in the right direction.

I don’t remember the drive home that day. But I remember collapsing into my mum’s arms on my arrival home. To anyone who hasn’t gone through it, it’s a hard one to explain. You are filled with grief, sadness, a sense of loss and fear because, as I explained, when you first become a parent, you somehow assume all those milestones will be met and you never plan around situations like ours. There could have been a thousand people around me that afternoon, and yet I felt so lonely and completely lost.

The fear of the unknown was very strong: the lack of understanding of my son’s condition, what services he would need, what the future would hold for us. At that point, we were referred to an Early Intervention Centre in Enable Ireland. My gusto had kicked in at that point and I was ready for whatever challenges lay ahead. The most important thing that struck me at this time was that despite the difficult diagnosis and the many challenges ahead, two vital things didn’t change: I was still a very happy mum and still had a wonderful little boy. We still lived our lives to the full every day, and—almost without realising it—we had already begun finding our way around things to give James independent ability to function day to day. The fear was going away.

James began receiving physiotherapy which strengthened his weak muscles, as well as speech and language therapy to encourage communication. Emotional support was just as important, so a social worker and a psychologist also worked with James and our family. Although it can sometimes be difficult emotionally, there were many more good days with all the support of the service. We began to focus on the ability, not disability.

To bring you to where we are today—James is now 8, he attends a mainstream primary school and is currently in 2nd class. One of the most visible challenges we have met is the public perception of disability. My attitude towards disability is to be proactive, not allowing the situation to define us. Yes we acknowledge it, but we use that acknowledgement to empower us and always be open and honest. This demystifies stigma associated with disability. I feel perception is a huge barrier which prevents inclusion in our society. Persons with disability, my son included, strive for equality and equal opportunity to participate in all aspects of living.

In James’ school setting, the role of his special needs assistance is crucial to allow him to be independent. Perception in our community can be somewhat skewed as to the role of the SNA. I equate the role of an SNA to the role of a PA which allows the person with disability to have independence and the ability to maximise choice to live and be part of an inclusive society. The role of an SNA is not to create an air of dependency, it is led by the needs of the person with disability and to remove obstacles which may cause exclusion in the school setting. A common barrier or misperception I have been met with is attitudes to children with disability attending mainstream school. I sometimes have to make it clear that I don’t expect James just to do well by attending school—like any parent, I expect him to do his best, and that is hugely different.

As a parent, I focus my time and energy in overcoming obstacles, focusing on what can be done to empower my son to live life to the maximum. I feel as a modern society, more emphasis should be put on education and awareness to give us the desired universal community we aspire too

A greater sense of rights and entitlements should be more easily available for parents entering this journey—with clarity given on options available such as Domiciliary Carers Allowance, Carers Allowance, Carers Benefit, Carers Leave, support groups and so on. Taking some of the stress away from what is already a stressful and daunting experience, and informing parents of options can lighten the load.

To summarise my hopes and aspirations for James, I want him to grow up into a strong, confident young man, happy, independent and, most of all, healthy. When James grows up, he wants to travel the world (starting in Barcelona, because it’s the most accessible city in Europe), and to be a Paralympian swimmer. Like so many other parents, I hope our society evolves and aspires to allow James and others to achieve this.