Having a disabled child wasn’t part of my life plan. I was shocked, confused and generally devastated at first. I had to slowly find my own peace with the life that I had and the disabilities of my child. But if I am honest there were times where I was frustrated and angry at the way her condition controlled my life.
I couldn’t holiday easily, we couldn’t get insurance to fly for a start and the fact that there was always a high risk of cancelling, due to hospitalisation, illness etc.
I couldn’t work full time, there was no way I could meet all her needs, hospital appointments and therapies whilst being a productive employee.
I couldn’t have an evening out without proper planning in advance and hoping that I would get some respite that was few and far between.
At times I couldn’t even go to the toilet on my own without fear of her seizuring in my absence.
There were so many choices taken away from us all.
But the reality is that my lost choices were nothing compared to what Livvy faced.
Right now my local council has decided that parents of children with special needs post 16 have to pay towards their transport to school. Their reasoning is that most parents have to pay when their child goes to college etc and that its only reasonable that we put towards this cost as transporting our children is expensive.
£600 a year, is this fair?
Lets look at this closely,
I didn’t choose my daughters school, I didn’t get to make a decision on league tables or the curriculum offered.
My daughter didn’t choose her school, she didn’t get to view different courses, or placements and come to a decision that was her’s. No the council and it’s professionals made the choice that this was the school suited to my child’s needs.
They didn’t consider the fact that every morning she would see her sister’s get up and dressed in a different school uniform and watch them leave with their friends.
They didn’t consider the fact that maybe she didn’t enjoy travelling 30 minutes each morning and afternoon to and from school.
They never considered that myself and many other parents like me struggle to be in two places at the same time often twisting ourselves up with guilt from missed performances, parents day and so much more.
No they made the decision on the best place to cater for her needs and I understand that. Yet why are we being asked to pay for something we had no choice in?
I am actually not saying that I have an issue with paying towards the service but I do think it should be in line with the costs I would have to pay for my other daughters. I don’t know many parents that have a spare £600 lying around and if someone mentions mobility to me again I may scream. Have you tried to fill the tank of a mobility vehicle on what our child receives each week? Do you drive to numerous medical appointments, pay for parking at so many hospitals for again reasons beyond our control, our choice.
Olivia didn’t choose to have Rett Syndrome, she didn’t choose to fight each day. She didn’t choose to have uncontrollable epilepsy and she certainly didn’t choose to lose her battle for life so early.
I am so tired of seeing disabled people persecuted for something that is out of their control. Our children didn’t choose not to go to the local school, they didn’t choose not to be able to walk the journey on their own, backpacks on their backs as they laugh and joke with their friends.
They didn’t choose this life and as their parents we didn’t either.
Yet right now our local council are making parents feel as their children’s education is a luxury, a luxury that they have been funding. I’m sorry Walsall Council I completely disagree. You have an obligation to support our children with an education, the fact that these education placements are far and few between well that with your current funding and cuts to school is only going to become more of an issue and isn’t our fault or our choice. Do you not think we would love to walk our children to school, to chat with other parents on the playground, to be able to feel less alone in our already isolated worlds?
But before you harp on at parents already struggling to survive with reduced respite, reduced support,cancelled play schemes etc please remember this, these children, these parents they don’t have a choice.
Our lives, our children lives are far from what we had planned. When we celebrated their conception and decorated their nurseries we never imagined the lives we had yet to live.
We are trying, trying each day to make the best of it all. To love on our children with all that we have. To fight for therapies and support that will enhance their quality of life, and most of all we fight for their happiness, their chance to do whatever they dream.
Because whilst you may see them as expensive, we see them our hearts.