When I began writing this blog back in May, my goal was to write about the things that I wish someone had told me when Joshua was born, so that I did not have to learn everything from scratch. When we got Joshua’s diagnosis of ‘devastating brain damage’ when he was four days old, we were thrust into a world about which we knew nothing! In an ideal world we should have been allocated a social worker at that point, while we were still in Special Care, so that we would have left hospital with a support network in place and would immediately have had someone to consult in the early days, someone to back us up in that frighetning haze.
But sadly that was not the case, and so we struggled by on our own, supported by a brilliant Health Visitor, but without anyone in the social care system being aware of our family unit. When we had Annual Reviews at school we were asked if our Social Worker would attend but I would explain that we did not have one. It was only when Joshua was 9 years old, that my Mum suggested ‘ I think you should have a social worker too’ as she had been allocated one to assist with my Dad who had develped vascular dementia. I rejected her suggestion initially saying ‘ No mum, social workers are for families with problems!’ and she pointed out kindly, as only your mum could get away with : ‘ But you have a problem, my darling!’
So it was only when Joshua was nine years old that I sought out a social worker and it was indeed like someone turning a light on in a dark room: he was able to explain things to us and suddenly, instead of having to fight for everything we wanted myself, it felt as though I had an ally. He came along to all of our Annual Review meetings and he supported us brilliantly through our stressful appeal to change special schools and he was simply a sympathetic ear, even when his hands were tied as he could not change the world.
However I think that the system is flawed, it should not have been up to me to seek out a social worker, one should be automatically offered as soon as a diagnosis of disability is announced. It is at that lowest point that such decisions ought to be taken out of your hands, as it is not right that you should be expected to take the initiative, when just getting dressed and out of the door is a huge achievement! Every set of new parents are exhausted and shell shocked when their new baby arrives, their whole world is turned upside down. But if you add to that, the knowledge that your longed-for son is not going to develop normally, but has a lifelong disability and may well need to be cared for ,like a baby, for the rest of his life, then that can be overwhelming and such parents need all of the support that they can get.
I coped at the time by focussing on the here and now and by going into denial about the difficulties that Joshua might face, but who knows, if we had had a social worker at our side in those early months, we could all have been saved a lot of heartache in the future, as reality started to impose itself when Joshua entered the eduation system. If I come across someone helpful , who delivers what they say they will, then I make a note of their name and conatct details so that I can approach them in times of crisis. It is often a matter of having a database of helpful people and when some problem arises, then you have options as to who to approach to get support or answers. Even if a helpful soul does not know themselves, in my experience they will not leave you alone but will point in the direction os someone else that they know. You need to surround yourself in a trusted support network, otherwise being the parent of a child with special needs, can be a very lonely place.