The 8th June marks the start of Carer's week 2015. Carers Week is an annual campaign to raise awareness of caring, highlight the challenges carers face, and recognise the contribution they make to families and communities throughout the UK. This year they are focusing on building Carer Friendly Communities. Communities which support carers to look after their loved ones well, while recognising that they are individuals with needs of their own.
Around the UK there are currently around 6.5 Million people providing a caring role, a caring role which is unpaid. Some would not even recognise themselves as a carer: they are a husband, wife, mother, father, son, daughter, sibling, even a friend or neighbour.
For parents and siblings living with a loved one with CDKL5 disorder and other conditions that affect children, that caring role can last a lifetime. It can have a huge impact on parental relationships and also impact on the siblings. Often siblings can experience a range of emotions. Guilt about being angry with their sibling - as they may not have the same amount of attention, the restriction in family time, stressful situations at home due to illness, parents being away for extended periods of time due to hospital admissions [contact a family - relationships and caring for a disabled child].
In my experience, sibling carers are often forgotten by services that are there to support children in a caring role. You might think "they don't perform a caring role", or "they are just a brother or a sister of disabled child", but that is far from the truth. I can't count the many times that my son would sit in the back of the car with my daughter on the way to school - she would regularly have a tonic seizure due to the spring sunshine flashing through the trees, and always on a road where I would not be able to stop. He would catch her vomit in his little hands, ensure that her head was elevated so that her breathing was not compromised - a 10 year old boy, just about to start his school day, and he took this in his stride, despite the hurt that I felt. As he got older, so the scope of his and his older brother's caring was extended. A quick trip to the shops was more feasible as they could be trusted to care for her whilst I popped out. By the time my youngest son was 14 he could reel off every medication that she had ever been on and how it impacted her. For his older brother, it took him a little longer to come to terms with his Sister's disability, but then one day it just clicked, and they have been inseparable ever since. These siblings, our children are amazing.
It is important to note that not every sibling will have the resilience to cope. They will not appreciate the stares when out on day trips, they will not want to tell friends about their sibling - not because they don't love them, but because it is private to them - they may not want friends to visit, they may worry about future - what happens when their parents are no longer able to care for their siblings, what will be required of them? what if they don't feel able to support their sibling?
For me, siblings provide a vital caring role in the family where there is a disabled child, and we have to be mindful that not all will have the ability to cope with the now and the future. They need to know that is OK and as parents we have to ensure that they are listened to, that we don't put too much pressure on them, that we take time to give them the experiences of childhood that other families have.
My beautiful boys, my daughter's brothers, have enabled me to do so much. Without them I would not have been able to start this charity, and embarked upon and finished a social work degree. They have provided far and above what we should expect children to do, but they are not alone, this is happening all over the UK, and the world. Building carer friendly communities is the goal of Carers Week 2015, but we also have to build carer friendly families by recognising that not just parents are the main carers where there is child with a disability, it takes the whole family.
You may have wondered where I am going with this blog, but to commemorate Carers Week, I ask all those living with a loved one with CDKL5 Disorder, to share a photo of your son or daughter with their sibling with CDKL5. Share on facebook, twitter and instagram using the tags #siblingchampions #CW2015 #curecdkl5 you can tag CDKL5 UK on twitter using @cdk5uk and instagram curecdkl5. The organisation in the UK set up to support brothers and sisters of disabled children, for adults and children is Sibs UK can be found here. So raise a glass for our #siblingchampions they deserve it.