I haven’t been a very good blogger lately. My posts are becoming more infrequent and I’ve
become quite bad at commenting on other peoples blogs. I’m sorry for this but the main reason for my lack of engagement is that I’m feeling tired and run down.
I’ve been fighting for my children for what feels like an eternity. In truth its only been
twelve years but that’s a long time and its eaten into my life to such a degree that I no longer feel like the person I once was. Perhaps that is a natural aspect of motherhood; people to look after and a new set of priorities which is bound to change me and my perspective on life. Nevertheless the ridiculous fight I have had to endure as a result of having special needs children has left me running on empty.
The number of hurdles we have had to overcome (and still to overcome) is mind-boggling crazy. We seem to lurch from one thing to another. Only recently another crisis happened with regards to my son’s school transport and I’ve had to write a letter of complaint to the local authority about the distress caused to our family. For those of you who don’t know what happened, my car broke down and I had no means of collecting my son from school. The school is in the sticks, at least a 30 minute drive away so I can’t even slip on my trainers and do a hearty walk to pick him up. I am reliant on wheels to get him there and back and of course when one set of wheels fails you have to look for another. As a result I asked his school if he could come back on the transport that my council provides for local children who attend the school. They said yes, the taxi company said yes and I felt relieved that everything would be OK. However, when the time came the taxi driver adamantly refused to take my son home as he was “not on the list”. They left him standing there while they tootled out of the school grounds. Fortunately the school looked after him and organised alternative transport but it took another two hours before he returned home. By then he was tired and stressed and angry that he had been dumped by our council. I was too.
As I’ve said I’ve written a letter in the hope that the authority can examine what happened but frankly I’m sceptical anything will be done. In my heart of hearts I know that my words will have little impact with the bureaucrats. They will look down on me as ‘just a mother’ and they will defend their sloppiness as they usually do, more interested in their jobs and budgets than the families they are supposed to support. They don’t really care about us. They may pretend that they do when they implement the latest gimmick, the soft stuff as I call it, but at the coal face of special needs parenting it doesn’t equate into anything tangible. Our lives are still challenging and exhausting. We still have to fight for a diagnosis, for a statement, for a school place, for health care even and as for respite – does that exist?
And so it is that I’ve had enough of this SEN and disability stuff. I don’t want to fight
anymore. I want to live an ordinary life, well as ordinary as it can be with two special needs kids, but the reality is that there are more challenges ahead. My son is on the brink of another major transition in his life – post 16, words that are soon going to dominate my thoughts as we decide what the hell to do. You see we have only just managed to help him return to school after a gruelling period of rehabilitation that has left me feeling worn out. And now, no sooner has he got back to the classroom that we have to think where he should go in eighteen months time. It worries me because we are not ready for this; my son is not ready for this. We need a period of stability and calm and a chance for my son to continue to rebuild his fragile confidence.
Unfortunately we are stuck in a system that is regimented and inflexible, a system that tells us our son should move into post-16 provision because that’s what you do when you’re 16. The inclusion guy whom I chatted to in another meeting about my daughter’s education (another looming crisis) said they like to bring them back to town, meaning the kids that are schooled out of borough are educated in borough once they reach 16. My first response on hearing this was where? There is nowhere for people like my son to go, unless he thinks that my son is up to managing the massive college complex that resides at the edge of town. Perhaps somewhere within this modern, light filled and angled structure is a quiet place that can accommodate my son. I doubt it. My instinct tells me my son is not (and may never be) ready for this. My instinct tells me that the council’s priorities will be to minimise cost. I sense another battle ahead.