Most mothers would tell you that they will do anything to protect their children, it is a natural instinct that arrives when they are born. You see this helpless little baby and you know that you will do whatever you can to make sure that it has the best care possible and nobody can get in the way of that protective instinct.
If that feeling applies to mothers of ‘normal’ children, just imagine how much stronger that feeling is when you are told that your baby is extra vulnerable, that he has brain damage and may not walk, talk, see or hear? You realise that ,at 4 days old, your son will need your protection for the rest of his, or your, life, whichever ends first. This mother/son relationship will not be like most others: Joshua will never leave home and live independently, he will never bring his new fiancee home to meet his parents or produce grandchildren and he will never be in a position to look after his elderly parents as they become more vulnerable too.
So, in that context, perhaps it is understandable just how hard we mothers fight for our children and it is , in my experience recently, a daily battle just so that Joshua can have his basic human rights. I should not have to fight to ensure that he is safe when transported to and from school, I should not have to complain to ensure that he gets the nappies that he needs to keep him comfortable overnight and I should not have to request that he experiences a full school day…….
I have often heard that a mother can turn ferocious, like a lioness, in defence of her offspring and I certainly recognise that determind, protective fight in myself. Joshua does not have the verbal ability to speak up for himself and so, as his Mum, it is my duty to be his voice and to try to understand what Joshua would ask for , if only he could.
Joshua will turn 18 next March and so then it is all change again, as he will be considered as an adult : so his current respite provision, which we love so dearly, will end abruptly from his 18th birthday and so we are looking for adult alternatives. So far,we have not been successful in our local area, so it seems likely that he will have to continue to travel some distance to access that decent provision. Thankfully he can stay at his current 6th form until he is 19, but once respite is resolved, we then need to start to review his day care options. My Husband and I are visiting a solicitor this afternoon to discuss Power of Attorney over Joshua as it will no longer be sufficient that we are his parents, once Joshua is 18. We will not be able to make any decisions for him, even though his cognitive ability is that of an 18 month old, the law recognises that it will be 18 years since he was born. He has already been asked by DWP to sign forms that he cannot read and had his bank account frozen until he can prove that he has capacity to make a withdrawal. Why, just because he is 18, will we , as his parents, suddenly stop making decisions in his best interests? It makes no common sense at all.
So we will have to learn some whole new words and processes for our adult son, now that we have finally got him into the best school and the best respite, it will be all change again. It seems that there is little continuity from Children’s to Adult services, so we are having to tell professionals all about our son, as though he will change from the 17 year old that lives with us today to another man on his 18th birthday. Fortunately this lioness is ready to roar and pounce.