It is a fine balance to know when it is time to make a fuss and protest and when to let something pass you by, as I know we have to choose our battles. I wrote earlier in the week about the proposal that our special school loses its current nursing team and what that change would mean to us as a family. I have read the reaction from other parents in social media and at the outrage that is being shown at what seems to be an illogical decision, that is more about money than the safeguarding of our children.
However, the decision has not been made yet, and so there is still an opportunity to object, loudly, so that the powers that be take notice. I saw on Facebook that one Mum will be on local radio tomorrow expressing her views, and that is a great way to get the word out that we are not happy with the proposal and to give some personal colour to this news story. However, the Headteacher needs written complaints that she can take to meetings, to show the strength of feeling of her parents, it is not enough to simply grumble on Facebook . I joked with one Mum yesterday that we might have to chain ourselves to school gates to be heard and she agreed with me that she was ready to make that protest.
In many walks of life we need to stand up for ourselves and that is not always easy to do. We are brought up to respect authority and not to make too much fuss and over time, it is possible to become worn down by constantly battling. One thing that I have learned when bringing Joshua up is that you get nowhere if you simply wait quietly to be attended to. It is essential to fight for everything as a parent of a child with special needs, whether that is, for example, continence products, benefits, a blue badge, respite or a social worker. I have learned to speak out , to be persistent ,but polite, and to write letters of complaint ,in order to get what Joshua has needed over the years. Those who sit back and wait for things to come to them will not get anywhere in my experience and I know that if we do not fight for what Joshua is entitled to, nobody else will.
I may have earned a reputation as a stroppy mother, but I accept that label, as my motives are always to fight for what Joshua needs and deserves. I have to be his voice, where he has none, and his eyes and ears on what is happening all around him. Joshua has relied upon school nursing support for the last 8 years of his life and nothing has changed about his needs or those of his peers ,to say that they no longer need that health care during the school day ,as far as I am concerned. We are not being presented with a ‘done deal’, so we should defend what we hold dear, before we lose it, rather than simply complaining about how terrible it is. Our collective voice as parents must be stronger than just one or two individuals ; and so I hope that we will rally together, to object and to reverse this potentially damaging decision, that is being proposed by people in offices and board rooms, who have no real experience of having a child with special needs and of the invaluable service that our nurses provide.