This will be the third time of personally going through this process and it scares me more than ever.
The first time I was blissfully unaware there was something different with my son until we got the Aspergers diagnosis for him at aged 5. I still remember it like yesterday, it’s an open wound that never seems to heal. It’s painful at times to think about it and it makes me feel that is when our life changed, in ways I can’t really explain. Parents that have had that diagnosis get it but no one really talks about it. Then the second time it happened to me getting my own diagnosis and it made me feel numb and it still does a bit. It’s when it all changed again and it hurts in a different way, again it is hard to explain. I joke and make fun about it and that helps but sometimes I just want to cry and say actually it’s bloody hard and I am struggling, please can someone just help me or just be there. Now this time it is for my daughter and this time I feel pain, guilt and hurt all at the same time as well as being angry.
I don’t want my daughter to go through this to feel how I do. I didn’t want my son going through it either, it breaks my heart to feel that they have been labelled and it defines them as a person it, shouldn’t but the reality is it does.
I hate the fact that this hidden disability is shaping our lives so much and that the support and help out there is non existence really. I know that if my daughter does get a diagnosis I will get an information pack with a leaflet, which says that she has it and contact numbers and then sent on our way to deal with it. No counselling or guidance, just a condolence card or sorry you have autism…but enjoy the lonely path with it!
I just dread the looks, the judgement and the speculations I just want understanding and tolerance. It can be so tough sometimes and I just wish people would understand and offer me time, time for them to listen. I feel stupid sometimes telling people I am finding it tough I feel a failure and really all I want is that reassurance that it will all be ok, and that they are there for me. I know I have people there but sometimes I don’t want to burden them, life is tough for us all in one way or another.
I feel bad feeling like that and I want to be able to just curl up and forget about things for a bit but I can’t, I have to face it all head on and it hurts, then I feel guilty for feeling like that because there is so much hurt in the world much more than my little worries over a little label!
But I do feel like that and I can’t change it but I wish I could….