Listen to Everyone

Two years ago I started running and in my usual obsessive manor I ate running I slept running, I read books on running. Now I stumbled across an ultra-runner called Dean Karnazes http://www.ultramarathonman.com/web/ and he used a quote which said ‘Listen to everyone and follow no one’ and what he was driving at is in the field of running you will get plenty of advice on what to do i.e. nutrition, stretching weight training and so on and by all means listen to this advice but what you have to do is cherry pick the stuff that works for you, there is no one approach

This got me thinking that this is exactly like in the world of autism. Everyone will be offering you advice, including this blog and what you have to do is sift through all the information given and find what works for you and your family. A clinical psychologist called Bo Hejlskov Elvén http://www.hejlskov.se/indexeng.html says that “with each child no matter what we do, we need to find the right tool. If we have the right tool we can do anything”.

By all means listen to professionals but understand that professionals are trapped within the boundaries of their own job, they are a tool (sometimes in more ways than one) and also have their own prejudices and approaches. The only person that can you truly rely on is yourself with regards to child's well-being. Remember that to everyone else your child is a mere number or statistic, you will meet some professionals who step up beyond this but these are few and far between. Remember you know best.

Welcome to Holland

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this…


When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.


After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."


"Holland?!" you say. "What do you mean, Holland?" I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy.


But there's been a change in the flight plan. They've landed in Holland and there you must stay.


The important thing is that they haven't taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.


So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.


It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.


But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, "Yes, that's where I was supposed to go. That's what I had planned."


The pain of that will never, ever, go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

Written by Emily Perl Kingsley

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.