Team Joshua

I wrote on Tuesday this week about how disappointed I was that Joshua was not heard at Riding for the Disabled when he wanted his ride to stop. On that occasion I had to intervene and be his voice, even though he had used his own voice clearly, it is just that it had been ignored. The more I thought about Monday evening, the crosser I had become, and so I sent an email to RDA on Tuesday morning, outlining my concerns. I was reluctant at first as we like the ladies at RDA and I know that they are volunteers, but they let Joshua down on Monday and so it is my duty, as his voice, to follow that up to ensure that it does not happen to Joshua again, or to anyone else. I received a reply yesterday, which was not sufficient and it stated that they were disappointed in me, because I had not raised my complaint, face to face, before we left the stables. I have written back to explain that that was not convenient, as they were busy with the next riders and that my priority was to get an unhappy Joshua warmed up and back home. I will wait to see how they respond next.

This is not the first time however that I have had to be Joshua’s voice during his life, as his mother I have regularly had to intervene on his behalf to ensure that he gets what he deserves:

The biggest intervention was probably when we realised that Joshua was unhappy at his first special school in 2010. It was not working for me at all as they were not equipped with a school nurse so after seizures, which were especially bad in 2010, school staff would telephone me to ask me to collect him after he had received Midazolam as they could not keep him on the premises. That was a very difficult time but when I was in school one time, not after midazolam, I witnessed him in class with his head on his desk, totally disengaged. It caused me to bring it to the Head and teacher’s attention and they asked me how I should interest him in activities better! I was horrified as I had thought that as he had moved to a special school, he would be receiving specialist input but they were clearly struggling with him. Joshua did not have a voice at that school and he showed how he felt through his body language. I took action and appealed to the local authority to change to a different special school with a school nurse. We had to go to a tribunal in January 2011, which was a terrifying experience, but we won the outcome that we were fighting for. I can recall the epilepsy nurse telling someone else who stated before the tribunal that it would be impossible to get into our school of choice and she replied;

” If Emma wants that school for Joshua, that is where he will be going!” and she was right!

I am an advocate for Joshua and I have used my voice throughout his life to get what he deserves. I had a year long battle with the Continence Service when they wanted to change the nappies that Joshua used , to a cheaper, thinner version as they had a contract with their supplier. I fought all year to keep the pads that we knew suited Joshua’s needs. We had to jump through so many hoops, trialing endless inferior pads , before they would accept what I was saying. In the end, in exasperation , I threatened to take our story to the local newspaper and tell them how Joshua’s basic human rights were being compromised by their insistence on poor products. Instantly, on issuing this threat, the debate was resolved and they backed down and accepted my choice of pads and I only wished that I had threatened the local newspaper sooner, as I could have saved myself a lot of heartache.

Once I get the bit between my teeth then I can be like a terrier dog, unable to let go as I am driven on by the knowledge that I am right and that I am doing my best for my son. The reality is that I would not fight as hard for any other cause but his lack of voice, gives more volume to mine. While there is still breathe in my body, I will be by Joshua’s side, fighting his corner. The trouble is however, that due to that last 21 years of fighting this corner, it has made me feisty and quick to react and so it is more difficult now to let things go that I might have been able to ignore 20 years ago. I have become a lioness who is protecting her cub at all costs and there is now turning back now.

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