So it begins.

Mr Hughes your son has blah blah blah. I’m not sure what the paediatrician said at that point my world was imploding; the circle of life I had planned for my family was gone in one sentence. You know the circle of life, when you find out you are having a baby and you know you shouldn’t, well what harm could it do? You start to plan this child’s life from the various schools and university they will attend and even the person that they will marry. Then in one sentence boom all of that is gone. You ask the doctor stupid questions like ‘what will he be like when he’s an adult’? None of this makes sense why is it happening to me, not me. Then there’s the grief you suffer, you grieve for that child that you planned for, the child that will not exist. Another dark secret no one tells you is that you will spend a lifetime grieving for that child. Don’t get me wrong you learn to love this new child but deep down right in the pit of your stomach you will always have an aching for the child that never was. Now when my son was diagnosed I was a typical bloke, deep down inside something said if you ignore the diagnosis I’m sure he will be fine, that’s it just ignore it. This battle with this voice lasted for a few years until one day I had to take my head out of the sand. The pain of loss was still there but rather than a raw nerve being touched it was more like a dull ache.

So you’re trying to build a relationship with your child and trying to learn about this label they have been given but you are also having to deal with your emotions, friends and family. Friends ha, that’s funny now I look back. To start off with they are very supportive and tell you that it must be hard for you and I’m sure they try to understand, but they can’t how could they. They now have children, beautiful neuro typical children and you look at them with longing and although you try to fight it green eyed monsters sometimes appear. The competition at gatherings is immense you watch all these children develop and play with each other they somehow just seem to get it and your child doesn’t and whilst the other children are playing team games your child is sifting grass by themselves or wondering alone in the garden. These relationships just fade over time, only true friends remain and these are few and far between. Then you have the family, they make out they care but they keep your child at arms length. They take all the other grandchildren on holiday but not your child, well they couldn’t cope they tell you and they give all the other children money to buy things, but not your child because he would buy something not suitable. The final straw is when they offer you disciplinary advice; they offer such gems as ‘All he needs is a good hiding’. Give him to me for an hour I’ll sort him out. When school starts you also have to compete with the gate crowd, these are people telling you how wonderful their Timmy is and how at the age of six he can read the Times and how Shakira is going to be an Olympic gymnast. You look up and your child is staring at his fingers, flapping them in awe or holding on to them for grim death because they are in full meltdown because you came a different route to school.

I know it all sounds so very grim,I mentioned grieving for the death of your child but it is also a rebirth, yes it’s a new child but it will also be a new you. You will make new amazing friends that accept you and accept your child. Family for me became the people that understood my child. Those that didn’t, I let  fade into the distance you learn that blood is not thicker than water. You will learn to see how your child see’s the world and they will teach you so much. You will become a stronger person and I’m not going to promise you it will be easy because it won’t but you will start to see the world differently. It just occurred to me that all this is a little bit like the film The Matrix. All the neuro typicals are plugged into the machine called society and when you have a child with a disability you become unplugged from the machine and see the world as it really is. Dam it I should have took the blue pill.