Today, 24th June, is Rare Chromosome Disorder Awareness Day.
I would like to take this opportunity to share my experience and my inspiration.
My eldest son, Daniel, was born with a rare, unbalanced chromosomal translocation. This means that chromosomes 9 & 16 are in the wrong place. There are only 5 known cases of his translocation; it’s so rare it doesn’t even have a name!
His diagnosis was not something that I was prepared for, and I had no idea of what this would mean in terms of Daniel’s or my life. This translocation caused learning disabilities, physical health conditions and delayed childhood milestones being reached.
Over his first 15 years, Daniel had 10 operations, numerous fractures and dislocations of his bones and joints. Coupled with specialist services, the diary was full of appointments; each bringing hope and fears. When he was 2½, he died in my arms but was revived by a neighbour who happened to be a retired nurse. His determination to not give up and my relentless pursuit of fighting for his rights have paid off.
Now 23, Daniel has grown into an incredible young man. He works as a gardener at the Walled Garden in Great Missenden. In this role, he has achieved Level 1 in Animal Management, along with Beekeeping and Ride-on Lawn-mower qualifications.
What I Learnt from Daniel
The experiences that Daniel and I shared have given me strength and determination. I’ve been surprised about what we’ve both been able to achieve when we put our minds to it.
I’m now applying my skills and experience to champion the fair treatment of vulnerable people. I am committed to raising awareness of vulnerability, in its many forms. My business focuses on improving how organisations interact with their vulnerable customers. I know that with the right training, policies and processes in place, organisations can help everyone to access what they need.
What you can learn from Daniel
Like most people, Daniel is keen to learn, develop and be independent. He may take longer to process information or achieve tasks, but he is fully capable.
On noting a difference, some people act as if Daniel is not in the room. They talk to me about him and ask me questions. This makes the interaction quite uncomfortable for us all.
Others talk to Daniel in the same way as they would his peers. They are patient; providing him with the extra time and support to consider the information and respond. They enable him to make his own decisions.
My advice for anyone engaging with others in their work or social life is not to have preconceived ideas about what individuals are capable of. We all find some activities easy and others challenging. Ask open questions and listen to responses as a means of assessing what’s possible and where some additional support might be required.
It isn’t expensive or difficult to be patient and kind. We all deserve to be treated with respect and, when we are, we gain the confidence to fulfil our full potential. This applies to Daniel, to me and everyone else.
Vulnerability Comes in Many Forms
It is a misconception that people can spot those who are vulnerable. Whilst Daniel was the one with the diagnosis, as his mother and carer, I was often the vulnerable one. The way I was treated by others made a huge difference in how I coped.
A 2020 Carers UK poll identified that 8% of children in the UK are disabled. Their parents provide personal and physical support for their child through the day and night. They have to navigate complex systems and multiple appointments to access assessments, specialist care and financial support. They have a heightened awareness of risks and are constantly working to mitigate those risks.
When a carer interacts with you, there is no physical sign of vulnerability. It may be frustrating when you have to repeat some information, or they can’t seem to follow your instruction. You may wonder “What’s wrong with this person?”
What is wrong is that they are likely to be sleep-deprived and may not be eating well. They may feel isolated and exhausted after another tough conversation about school places, financial support, or the next medical appointment. They may, like me, have just come out of a hospital stay after placing their child in the hands of a surgeon. The time and capacity they have to take in information, make a decision and action that decision is limited.
Be mindful of hidden vulnerabilities. Many people are dealing with challenges that are not visible. Your attitude and approach will impact every individual that you interact with. Will you make things better or worse for them? I’ll repeat my earlier message; it isn’t expensive or difficult to be patient and kind.
Sharing my Experience
I was keen to share the motivation behind my work. I also wanted to give hope to all the parents and carers of children with a Chromosome disorder or other disability. I have found myself sat on the kitchen floor crying tears of frustration, guilt and even anger. I’ve also experienced joy, laughter and pride and looking back, the positive days now outweigh the kitchen floor days.
Stay strong and know that you’re not alone. You are doing an amazing job and you deserve compassion and support. Your child is an amazing and resilient individual. They will find their path and may help you to discover yours.
Daniel and I are members of Unique, a charitable organisation that specialises in rare chromosome and gene disorders.