I read and shared an article yesterday about the perceptions of a ‘Difficult Parent’ and it struck a real chord with me , as over the years I have probably earned myself that reputation too. I can recall back in 2010 when I wanted to change Joshua’s special school as, without a school nurse, his first one was simply not equipped to manage his epilepsy when it was at its worst in his life. As they had no nurse, once he had been given his emergency medication, they wanted him off the premises, either at home or in hospital and he had to stay away for 48 hours after Midazolam too. So Joshua was rarely in school and I was rarely at work, during this really difficult time. We knew that special schools in the neighbouring local authority area all had school nurses, so I visited them all and liked his current school best and we applied to move, The change was rejected as the school was full and so we were forced to go to a tribunal to get Joshua into the right provision. I can recall the epilepsy nurse, who was backing us in our move, saying with confidence that ‘If Emma wants that school for Joshua, then she will fight until she gets him in there’. She was not wrong, we prepared for months for that tribunal, gathering evidence and medical reports, and we were awarded a place with full one-to-one funding.
Since then I have had to fight for the right continence products for Joshua, finally getting agreement, only when I threatened the Continence Service with sending a story to the press. When Joshua’s respite provision closed for children’s short breaks, we had to fight hard to be able to go out of county to find the right replacement service to suit all of our needs, by refusing to take no for an answer. When it was suggested that brain surgery might offer Joshua the best chance for his epilepsy, we insisted on the best surgeon at the country’s best children’s hospital, as we were not prepared to take any more risks than were necessary and we were prepared to travel to London for that quality healthcare.
I am not a naturally argumentative person and I do not thrive on confrontation, like some people do, but when it comes to our son, I vehemently fight for what I believe is in his best interests . Where Joshua is concerned, I become like a dog with a bone and I use all my skills of evidence gathering, listening and report writing to argue our case, as though I am on a mission. So I am proud to be considered a ‘difficult parent’ as it means, for me, that I have stood up for my son ; I have not shied away from difficult conversations and have been prepared to involve our MP in my fights and to write to the senior management, when I have thought that it would help our case.
When you next see a ‘difficult parent’, spare a thought for why they are the way that they are and what they are fighting for. You might then see them in a different light and might admire them, rather than regarding them as being awkward and obstinate.