United we Stand

I have never seen myself as a protester or a revolutionary, but I was both yesterday, and not only that, but I was encouraging other school parents to do the same. I have written recently about the CCG’s proposal to remove our school nurses by the end of this year, well , yesterday we held our first meeting of school parents to discuss the impact of this change and to discuss the measures that we could take to object.

Twelve of us met in the school meeting room, where I gave my reasons for objecting to the proposal by recalling Joshua’s time at his first special school where, every time he had a seizure, he was either bundled into an ambulance and taken to A&E or school called me to collect him and keep him off for 48 hours after a dose of his rescue medication. Joshua was very rarely at school and I was very rarely at work and it was a very difficult time in our lives to manage. I insisted that it would be a backward step to return to those dark days and the presence of the nursing team was our main motivation for choosing Joshua’s current school. I heard other similar stories from my fellow parents, about children who were rarely in school and about the reassurance that a nurse’s presence brings to our parents.

We agreed how we planned to object on an individual basis , through writing letters of objection to school leadership, to the CCG,  to our health professionals and even to our MPs. But we also talked about collective action as a group of parents, alongside the other special school in the city that is under the same threat. We joked about chaining , or gluing, ourselves to the school gates in protest or picketing the offices of the CCG, but it may come to that, further down the line. We discussed involving local media to draw attention to the cause too. I was delighted that there was no lack of ideas and the energy just needed harnessing and directing into a plan of attack, and we need more parental support as the parent voice will be strong and loud on this topic.

Nobody was able to see any benefit from the proposed change at all, and so at least we were all objecting with a united voice. I was keen for our stories to be personalised: the powers that be should know the names and faces of the children who will be impacted by this move and should hear some of the horror stories, as this sounds like a Board room decision, without any real sense of the nurse’s typical school day and the range of activities that she gets involved in. These are medical decisions and procedures that she has trained for years to be able to perform, these cannot simply be taken on by unqualified teachers and teaching assistants. I would urge the managers who have made this decision to spend just one day in our special school to see how integral the nurse’s role is, how varied the calls on her time are and to see the range of health issues that our children are coping with in order to access their education, which is their right as children.

So we agreed, bring it on…..

A Battle Cry

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.

Voting with his feet

Yesterday I had a call while at work to tell me that Joshua had exerted his free will and had protested in an unusual way : he swims in the hydrotherapy pool three times a week and usually loves it, in fact they struggle to get him out mostly. But yesterday he was not in the mood to swim and he refused to change. First of all he told the Teaching Assistant ‘no, no, no’ and when that was not working , he empoyed a new technique. He straightened his arm and he grabbed onto his cuff so that she cold not get him undressed, as he would not let go of his jumper. She was flummuxed and called for his teacher, who also tried to encourage him to undress but he was adamant, for whatever reason. So his teacher accepted that he was determined not to change, even though he clearly knew that swimming was next on the agenda, so he was allowed not to swim.

Joshua had demonstrated his free choice and apparently, he grinned all the way back to the classroom, knowing that he had  successfully avoided an activity that he did not feel like doing, for whatever reason. While I am confused as to why he would not want to swim, I am also very proud of Joshua that he was able to express himself in such a way that he made his feelings known so effectively. I do love it when he is not passive and simply allows things to happen to him, although it can be frustrating, it also shows real spirit nad strength of character. As a 15 year old, he ought to be rebelling more and challenging the plans that we adults make for him.

If he makes a habit of protesting, then staff may start to overrule him but as a one off, he got away with it and all that happened as a consequence was that his teacher phoned home to share news of his rebellion. There is so little in his life that he can control, only by sleeping or refusing to eat normally, that he should be allowed to stretch his free-will muscle once in a while. Good on him I say!