In April 2005, I was excited to learn I was expecting my first baby. My road to parenthood had begun and this journey would be filled with excitement, anticipation and wonder – as well as many, many expectations!
On 5th January 2006, I gave birth to my gorgeous son, James, and in that moment, all my dreams came true. From the very start, you approach every new day as an adventure that is 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.
We first attended Our Lady’s Hospital 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 giving James 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 to confirm. In that instant, I felt like my world was collapsing around me, but I also had an overwhelming sense of relief because I finally secured a diagnosis for my son 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 when I got 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 sort of assume all those milestones will be met and never plan for a situation like this. 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 this point, we were referred to an Early Intervention Centre, Enable Ireland. My gusto had kicked in and I was ready for whatever challenges lay ahead. The most important thing that struck me around this time was that, despite the difficult diagnosis and the many challenges ahead, two vital things didn’t change – 1. 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 an independent ability to function day-to-day. And 2. 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 psychologist also worked with James and the family. Although it can sometimes be difficult emotionally, there were many more good days with all the support of the incredible service. We began to focus on the ability, not disability.
James is 11 now and he attends mainstream primary school and is has become an advocate for access and inclusion himself.
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 this 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. I equate the role of an SNA to the role of a PA which allows the person with disability to have independence and 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 to be led by the needs of the person with disability to remove obstacles which may cause exclusion in a school setting. A common misperception I have been met with is attitudes to children with disability attending mainstream school. I sometimes must make clear that I don’t consider James to be doing well just be attending school, like any parent, I expect him to do his best – which is hugely different!
As a parent, I use my time and energy trying to overcome 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 to.
I want James 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 as it’s the most accessible city in Europe, and be a Paralympian swimmer. As a parent, like so many other parents, I hope our society evolves and aspires to allows him and others achieve this.
Cllr Vicki Casserly