Putting on my Big girl’s Pants – a Parent Carer’s Guide to Being Heard
This blog can be found at http://navigatingchloesworld.blogspot.co.uk/2016/11/putting-on-my-big-girls-pants-parent.html
I have been trying to write the following for ages but have never quite found the words. The subject of talking to Commissioners and Service Providers is complex and confusing and I cannot pretend it is an easy thing to do. I want to explain the process I have been through since my daughter was born and how finding my voice, (and the right underwear) has made a huge difference.
In the Beginning
The nature of Chloe’s disability, the fact that we have no official diagnosis for her severe visual impairment and profound deafness means that we have had to work with lots of different professionals since she was tiny. In the early days sitting round a table with twelve other people listening while they tried to figure out between them the best course of action for my baby was unbearable. I felt my heart was going to break and I wanted to stand up and yell at them to just give me the answers. My husband worried what listening to everyone was doing to me, Chloe and us as a family. We felt invaded, life became very serious and full of fear for the future.
What I understood deep inside was that however scared I felt I had to listen and also had to have my say. It was important to be part of the conversation and work with everyone in order to give Chloe the best possible chance. When I look back I know that this tricky time was when I became a ‘proper’ adult with serious responsibilities. The grown up pants I was forced to wear felt tight and difficult to put on. I found expressing my own opinions very hard at times and my doubts didn’t disappear but I had to be strong for Chloe. Being an active and fully engaged Parent Carer felt like becoming an amplified grown up but in order for our family to survive I needed to take on this role and ditch the flimsy underwear of my youth.
Taking Back Control
Don’t get me wrong there is a time and place for frivolous underwear, fun and freedom. I hope there will always be space in my life for dancing (my de-stress activity) but being able to have serious conversations with commissioners and heads of service has changed the future for my child and other Deafblind children where we live. No matter how difficult it gets (and it isn’t always an easy or comfortable interaction) my overall feeling is that it is better to be there at the table and aware of the tough decisions being made than on the sidelines waiting for things to happen to my child and my family.
I don’t always feel like a grown up or know how to think like one when my brain is screaming, ” this is so unfair.” Its even harder when the unfairness is not about me but my child who I would do anything to protect. It can be tempting to stick my fingers in my ears and hum to drown out the bad noise. But that won’t help Chloe or the other children I attempt to represent. There is no doubt that cuts have severely affected the services we receive and it is only going to get harder. Unless we find a platform where we can have our say and are taken seriously there is no chance to influence policy or say what should be protected.
My role has changed since having my daughter. I move in a different world where others make decisions about resources and support for her. This can make me feel very small, powerless and a bit like a stroppy toddler. The trouble is people tend to ignore tantrums so finding a way to get my point across has been crucial. I have found citing the law and bringing in the big boys to back me up really helpful. In my case Sense (the national charity for Deafblind people) have been invaluable. Charities are there to help us and our children and we shouldn’t be afraid to ask for help when we need it.
There have been times sitting across from some of the decision makers where I have felt like flinging my toys out of the pushchair and slamming the door. But then I wouldn’t be in the room anymore and that does not help the situation for Chloe or other families going through the same issues we face everyday.
Respect and Big Girl Pants
As parents of disabled children we are more powerful than we realise. Front line workers that have day to day contact with you are in a really tough position. They cannot change the difficult things that are happening, it is being done to them just as much as it is to us and our families. The law says as service users and “customers” people should take notice of what we have to say.