There are an infinite number of reasons to tell a story. Some do it to send a moral message, others to create a form of escapism. Whatever the reason there is usually a core belief by the author that this story needs to be told. In this case, I have that belief, and this is why:
For the past five and a half years I have been a parent of child with Special Educational Needs. Over the course of that time our family has been, and continues to go through, a never-ending journey of learning and caring for someone that only people in a similar situation can empathise with. I look back now at all the things we did in our child’s earliest years and honestly think, ‘How on earth did we get through that?’ It’s a scenario that beggars belief, something I would wish on no other person on earth and, given the choice, something I don’t think I would ever be able to do again.
Hindsight is twenty-twenty however, and it’s through this I have now only begun to realise that this journey would not be possible without the help and hard work of a considerable number of people. There are a lot of times when you can feel lost and alone while raising a child with any kind of SEN. It’s easy to become isolated and you often end up isolating yourself to hide away from the problems you don’t want to face. When you feel like this it can help to know you are not alone, and I’m not just talking about having one or two close friends to help out now and then, I mean worldwide you are not alone! There are millions of families that go through these problems and perform miraculous work every day to do what is right for their children. It nearly always goes unnoticed though because who has the time to show off what amazing work they are doing to raise their child, when all you may be doing is trying to get them to eat with a knife and fork?
It is for this reason I want to tell you this story.
Every day on this earth, somebody new joins the party. It’s not one you thought you were invited to, in fact you may have been here a while and not noticed, perhaps even been in denial of it - I know I was. But as you start to realise that this party, raising a child with SEN is not the kind of party where you get to leave by choice then you start to feel trapped, like an asylum patient desperately searching for an exit screaming, “I DON’T BELONG HERE!”
If you feel like this, then I hope this story is of help to you. Because the best help anyone can offer when you are stuck at a party as seemingly bleak as this, is to show you that you are not alone. There are plenty of people at this party, making it the most prepared and accessible place to get to on earth, and the people at it, well they feel exactly the same as you do. We all do. If you are at the start of your journey wondering how things will change; what does this diagnosis mean for my child, for our family? Assuming you even have one yet; then this story, I hope, is a voice for you.
There is also another reason I want to write this story that is a bit more personal. It is for my son, Samuel. You see, Sam is who you will learn about in this story. He’s the one who got my wife, Catherine and I on the guest list for the party. One of Sam’s many issues is that he is what’s called ‘non-verbal’. He can communicate in other ways which we’ll get to, but talking, expressing his feelings through words, telling me what he wants, feels, needs, that just doesn’t happen. So it is for him I want to tell this story, because as you will learn, when your child has no voice of their own, yours will become ten time louder for them.
I hope you enjoy this story, and I hope that whatever journey you and your family are going through this can offer a little bit of help because we all need reassuring from time to time. And no matter what happens remember:
You are not perfect. You did not ask for this. It is okay to fail. The simple fact that you think you have probably means you’re doing something right.
Or, if you prefer something less soppy, as John McClane put it: