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.
Speaking UpMy 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.
When the powers that be ask your opinion it is so easy to feel cynical and think there is no point in saying anything, the decision has already been made. I know from my own experience that there is strength in numbers. I find it much easier to speak if there are a number of voices all saying the same thing and we are much more likely to be heard.
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.
If we are being treated like grown-ups whose opinion matters then we expect actions to follow words. We need to be valued and treated with respect or our default toddler emerges. I have sat at meetings fighting back the tears or shaking with fear and pent up emotion having been shut down by a manager for making an ‘unreasonable’ request. We are not spoilt children demanding sweets, we are asking for things that are crucial for our family’s existence.
It is bound to feel personal because we are being asked to share our stories about the beings we care most about in the whole wide world. I have learnt that change takes time and have had to endure many long periods of silence when I thought we had been forgotten or ignored again.
The important thing to note is that our opinions and experiences are being sought, or should be under the 2014 Children and Families Act. Unfortunately there are no magic wands or beans to grow pots of money. But I know parents just like me can change the world for our children with courage, a collective voice, sheer determination and the right pair of grown up pants.
Writer/ Activist/ Consultant
Sense Change Maker of the Year 2014