Have you ever been on a ride that you hated and screamed "Stop, I want to get off?" Lifes been a little like that over the past few weeks.
I always find it funny, in an obscure way, that when you go to see a health professional, and I have seen far too many over the last few months (to the point that random Dr's wave hello at our local hospital), they want to hear something positive. But is it for them, so they don't go home each day feeling truly depressed? Or to simply encourage us to try and see the positive in what sometimes seems an overwhelming number of negatives? But just how do we keep clinging to those positives, especially at times when they are far outweighed by so so many negatives?
The truth for me is, that if I don't it would be so easy to simply give up. Give up trying to fight what seems like a continually losing battle to get some support for Abigail, and ultimately for us all. I cling to the fact that underneath the anger, animosity and aggression I know that there is a lovely, loving little girl who is incredibly gifted trying to work out this confusing world. I need to keep fighting for her to give her the opportunity to be the best that she can be, but I have to do this whilst still learning to accept that she is different, she will always react to situations in a different way, she will always behave in a different way. At the moment I don't understand why and I feel that I am letting her down because I can't support her properly.
Of course the effects of Abi's behaviour don't just affect me, they are far reaching. Abi and Thomas both have sensory disorders, just one problem, they are not the same, they are polar opposites. That makes life challenging enough, but then throw an immune suppressed and physically fragile child into the mix and it becomes a whole different ball game. Someone said to me a couple of weeks ago that Abi was actually more concerning than Matthews current fragile emotional and physical state, I found this a little insensitive given the circumstances, but I also know its the truth.
So what am I going to do?
Truth is at the moment so many things are running through my head, some constructive, some not, such is my frustration. All the right professionals are involved, so thats positive, but unfortunately we're not all singing from the same hymn sheet. I don't want my daughter to have a "label" but I fear without one she will not get the help and support that she desperately needs in order to function properly. I fear for her future and what it may hold.
Therein lies my answer. I have a "multi-agency" meeting coming up in a couple of weeks to discuss "the best way forward". I am annoyed at how it has come about, and I am annoyed about how it has been arranged without any deference or respect to me as her Mum, but the fact remains this will be the best way forward. I need to take these couple of weeks to turn my anger and frustration into determination to succeed for her. Glimpses of the beautiful child within are simply not enough.