“Let’s shine a light on what is often hidden from the outside world!”
Blog by Claire Vincent
‘Poo – floor’ said my son Alex as he came to find me trying to get the washing in as the heavens opened.
My heart sank. Had he had an accident on the bathroom floor? He’s only recently toilet trained so this was a distinct possibility. “Is there poo on the bathroom floor Alex?” I enquired. ‘No’ he said. Phew – I thought. We continued through the house to investigate. And then I saw where he was looking – the cream lounge carpet where an uninvited guest await me. Alex was right, it wasn’t on the bathroom floor. The washing had to stay in the rain. Everything else had to wait. I had to clean up and give Alex a shower. Alex is 8 years old. He has a rare chromosome disorder resulting in severe learning difficulties. This is just a glimpse in to our hidden world of caring for a child with additional needs.
Being a parent is tough. Being a parent to a child with additional needs is even tougher.
This is familiar ground for many articles as a way to validate and acknowledge, that all parenting is challenging, but there are just extra stresses and strains that come along with a child with additional needs. I have to agree. This was not something I understood fully until I started living it. I did not understand the magnitude of the effect upon his whole life, his opportunities, his vulnerability, not to mention the stresses, strains on our family, relationships, finances and everyday life. For us, the main difficulties are around short attention span (he is working towards concentrating on a task for one minute!), speech, cognitive understanding, aggressive behaviour, impulse control…I could go on. It affects every aspect of our life and all decisions taken have to take Alex’s needs into account. I could also go on about the love, the joy, the humour, the understanding, the empathy he has brought to our lives. The understanding he has given us.
We are so much more as a family, having him in our lives. But I think others understand this.
The world can see he is pure sunshine and loves and laughs so much. And perhaps this is what we want the world to see and we are happy with this most of the time, as he is a delight. My husband and I are so proud of him (especially during lockdown) that we will gladly present this image. However, sometimes, just sometimes, we have to say that this is tough, actually, it is really tough. Especially during lockdown with no respite of school. The early mornings, the hyperactivity, the hurting his siblings, the banging the glass door, the constant supervision needed to just keep him safe can be exhausting and overwhelming, and nothing equips you to deal with this. It can feel as though you have run a marathon before you even step outside the front door in the morning (that’s if you have the energy to get out at all). And this is all ok if it is occasional. It is every day.
I know others face greater challenges and caring for an adult brings different difficulties.
Carers can often feel isolated and alone. So let’s shine a light on what is often hidden from the outside world. Carers and the constant caring they do can be invisible but it would be very visible if they stopped doing what they’re doing. No one sets out to be a carer for a loved one, life just happened that way. So let’s use this Carers Week to make caring visible. To hear the voice of carers. To ensure they are recognised and supported emotionally, practically and financially.