As I sit here tonight I feel like I have been dragged through today backwards by one disabled child. You will know if you read my blog that I love him to bits. Unfortunately he has bought big low points to our lives which have caused our lives to change forever.
Personally I don't know what is harder. A high medical need, being cognitively impaired or significant behavioural issues. In our house all are challenging disabilities to deal with in their own right but together they are really difficult to deal with a lot of the time.
At these times I sit and wonder just how much longer we can manage all of these issues. I wonder what can be done to help us out some more because what will happen when we get to the point of not coping due to his ever increasing strength and aggression, the never ending medication routine, the forever broken sleep and even the sadness that I have because my other children have to put up with this and they had to do things that they never should have to do and the way that this impacts on my Husband and I.
I don't want people to feel sorry for us. I just need people around me to support us. I need help when I need it, not just when some outside person thinks I need need it. I need the help for the reasons I need it and not to be put into a pigeon hole along with others who have no idea what it is like to like with this rare medical condition topped up by the other things going on. Don't get me wrong, I have the support of a fabulous family but I need something more.
Well enough of my rant. Fingers crossed that things get better and people start listening more to me.