As I wrote in a recent blog, I had to ask for a social worker initially as none had been allocated, despite Joshua having a devastating diagnosis before he even left hospital. It seems that the system is so busy and under-resourced that if a family is quietly trying their best, without support, then it will not be offered spontaneously. That does not feel right to me, as often we do not know what is available or what we need, until it is offered or spelt out for us and nobody knows what torment they are suffering quietly at home.
As I recently told another special needs mum, there is absolutely no shame in asking for and accepting external help. Us special needs parents are a strong and proud bunch, so it can be difficult to admit that we are struggling and that we need help. We feel as though we ought to be able to cope with our own children and you can look around and think, mistakenly, that everyone else is coping so much better than you. The social care system responds, it seems to me, to whoever shouts loudest, so if a family is quietly struggling, then they will not be visible. Sadly it can take a real crisis for that family to come to the authority’s attention and then suddenly, all of the stops are pulled out, but it is too little, too late.
I have always thought that every family should be awarded a social worker as soon as their child is identified as having a problem that is likely to impact their lives. We should have been given the name of a social worker before we left Special Care , by day 11 of Joshua’s life. That person would then have been able to help us to navigate this new world of disability that we were thrust into. They would have been able to advise us where we could access support and inform us on the benefits that we were entitled to. Instead we had to wait many years for that support and we certainly needed an ally in the early days.
My first bout of depression came about when Joshua started nursery school aged 4, as it was a very lonely time for several reasons :
- The health visitor and portage worker who had supported us so well from Joshua first coming home from hospital, both pulled away now that he was in the education system. I had come to rely heavily on these two amazing ladies, and they suddenly withdrew their support and disappeared out of our lives, leaving us to the school nurse
- While at home with my young son, I could fool myself into believing that Joshua had overcome the odds and was developing to be the same as his peers. On seeing him in a class full of other 4 year olds, it was obvious that he was different and this, weirdly, came as a shock to me. So a fear for his uncertain future suddenly took hold of me.
- Joshua’s epilepsy took a turn for the worst when he was four and we were introduced to a Children’s Epilepsy Nurse and soon he was on anti-epileptic medication. So this was another mysterious world that we were entering, blindly, into. Fortunately that nurse was a lovely lady who supported us until Joshua turned 18 and had to be transferred into the adult epilepsy service
Yet even at that difficult time, we were still not allocated to a social worker, that would not happen for several more years. If I had my time again, I would shout louder. I would fight for all of the help that I was entitled to, so that we would have felt more supported and protected. Perhaps if that had been the case, I might have avoided over 15 years of mental health problems. So let me advise any SEN parents who might be reading this, do yourself a favour and shout loudly, so that you cannot be ignored. It is not a sign of weakness to ask for help, it is actually a sign of strength and it is something that you are entitled to.