Having a child who has a rare chromosome disorder and is on the autism spectrum, your life changes and you have new challenges to face. You have to learn to adapt to a new way of life and have a different perspective on your environment. You have to figure out how to move forward, despite many obstacles getting in the way.
As a parent carer, throughout the years I have suffered from anxiety. Anxiety is a natural feeling of worry, concern, and uncertainty. I recall once sitting in my car before driving to work and just freezing. I physically could not drive to work as I was overwhelmed with anxiety. I know that there is still a stigma with openly discussing mental health issues, but it is necessary to. I am not ashamed because this is a reality, this is my life. Anxiety takes over your whole body, and it made me ill for many years. It took away my quality of life.
I remember noting down a list of things that I had to do with regards to my son. Speech therapy, occupational therapy, school appointments, training, workshops, food diary, behaviour management…etc. The list would get bigger, and all the small tasks would merge into one big ball of worry, and I could not cope. The way I describe myself feeling at the time was as though my son was in this bubble. Everything was happening all at once. Small holes appeared, and the water would start to enter. I would be running around trying to patch up these holes to stop my son from drowning, yet through the process, I would slowly drown.
Now that I understand what triggers my anxiety, I never let it get to a point where I feel like I cannot cope. I prioritise tasks and focus on one thing at a time. When I feel the “anxiety reaper” creeping up on me, I instantly stop what I am doing and take time out to rest. That way I am in a better frame of mine to re-evaluate the situation. I cannot stress how important it is to talk to someone when you are feeling stuck or overwhelmed. If people love you, then they will not judge you. You need that support network. I also find that it is important to be silly. It breaks the tension and allows us to forget all our worries. Me and my son dance around the house and make up goofy dance moves. We also have another outlet through our creativity.
A couple of years ago, I wrote a poem about anxiety and being a parent carer as part of Carers Week, which I would like to share:
I Care Because I Care
Soften my anxious mind, Paralysed by the fear.
Who am I? A mother or a carer? Perplexity, it is not clear.
A lapse between two worlds. A robust and turbulent storm.
Society’s shattered painting on the floor, A new picture has been reborn.
A mournful phase of this journey. A detachment from my mind.
From fearful to fearless now, the pain has gone. A beautiful vision so kind.
My child is my inspiration, my child is so perfect and strong.
Devoted passion and chaotic beauty. We are warriors now; we must soldier on.
Depth of new understanding.
The true meaning of love, you see.
The openness of the mind,
I am happy now; I am finally free.