Mud and Sparkles

Just in case you didn’t know, today is Autism Awareness Day! Look out for jigsawed ribbons and people wearing blue!!!

Our son Ethan (9) is blessed with a collection of letters after his name…ASD (Autism Spectrum Disorder) and ADHD (Attention Deficit Hyperactivity Disorder).  So, today, I am celebrating Autism and the beautiful things that it brings to our life as a family.

Autism is a neuro-developmental disorder. Ethan’s brain is wired differently to yours and mine and probably was so from birth. The exact cause of this is still being universally investigated, but probably a combination of genetic and environmental factors contribute to the disorder. More than half a million people in the UK have Autism, around 1 in 100. And Ethan has joined quite a hall of fame: Stephen Spielberg, Bill Gates, Einstein to name a few. (With his ADHD he will proudly tell you that he joins the same club as Leonardo da Vinci, Alexander Graham Bell and Will.i.am!!) There are a host of other famous names to add to both these lists.

All children with ASD share three main areas of difficulty although it affects each child in unique and different ways. These difficulties affect the child’s  thinking, talking and the way he interacts socially.

If you analyse a conversation with Ethan you will soon realise that first and foremost his conversation is about…..Ethan! Oh,  and Ethan’s interests! Match this up with another ASD trait, obsessions, and endless dialogue about Spongebob or Lego can ensue. The other day, he asked me what I was knitting. This was cause for celebration as he rarely verbalises an interest in what others are doing, just to make conversation. When he was 4, prior to diagnosis, he was referred to Speech Therapy because his speech was so unclear. Actually he was just speaking incredibly quickly because his brain has so much going on all the time and he was tripping over his words to get it all out there.

For Ethan, life is very literal. Everyday sayings that we take for granted have to be explained to him, otherwise he would be looking out the window for rainclouds spilling cats and dogs. This black and whiteness means he says it like it is. If you have a spot on your nose, Ethan will tell you about it, just in case you hadn’t noticed.  And he will be completely unaware of any effect his comments have on you!  Ethan has caused offence by commenting on people’s size and colour. He is not judging or being unkind,  or even rude, just telling it as it is. We are doing our best to teach him how these comments can make a person feel.

Living with Ethan is sometimes very challenging. He is the sweetest child and also in his frustration he is quite an aggressive child, full of deepest remorse after a hurtful outburst. To those who meet him out and about, in their home, at church, on the street, I think he probably comes across as a funny, friendly, slightly quirky young fella with a huge amount of energy. I’m not sure any more because we have just gotten so used to him being who he is. From strangers (and people we know)  we  see tuts and shaking of the heads brought about by his hyperactivity usually, but by those close to us who really know him, he is very loved and that love for him we truly appreciate. Thank you.

So, that’s the awareness bit over and done with. On to celebration!

Ethan is fun and funny. He is physically strong and energetic. He has an incredible memory and a super quick brain for learning stuff. He is able to learn concepts and put them into context while I’m trying to keep up with the initial explanation. He can construct a Lego set in no time at all and plays strategy and logic games annoyingly well. He loves stories and characters. He loves to snuggle with me and a good book at bed time and (because he lacks the sleep chemical melatonin) finds it incredibly difficult to go over to sleep on his own. But hey, what an excuse for longer snuggles! He brings noise to our home. Lots of it. Mostly laughter, singing and of course those endless movie dialogues. He has inspiring determination  and one of his favourite words is ‘perseverance’.  He has very few real friends  (because most ‘normal’ children think he’s weird) but to those few friends he has, he is intensely loyal and loving!

ASD does not make Ethan who he is. Neither does ADHD. He is unique and destined to be who he is, created by The Creator who knows every hair on Ethan’s head and every thought in his oh, so busy mind. In our church, we have a tradition that on the day a baby is dedicated, a candle is given to the family. We light Ethan’s candle every birthday to remind ourselves of that dedication day. Ethan’s candle is quite unusual. It’s like three plaited cords of wax, woven together in the colours blue, red and yellow. We, and Ethan’s Godmother who chose that candle, had no idea that those colours, in jigsaw pieces, would represent the very condition that he has. But our heavenly Father who gave us the honour and joy of being Ethan’s parents; He knew.