I had a great time yesterday being interviewed live on BBC Radio Wales about life with Tommy (my son with autism) and re-telling the story of his diagnosis 6 years ago to where we are today.  What really struck me as I was talking about our life was that it didn’t faze me in any way.  Others seem naturally shocked, concerned and empathetic, yet to me it’s just how life is.

When we go on any journey and stop to look back on where we’ve come from, it’s always astonishing to see how far we’ve travelled.  What was considered a normal life before has been completely redefined, and we have a new ‘normal’ now.

Tommy was an IVF baby born in December 2004. He developed ‘to plan’ hitting all his developmental milestones, and was crawling, walking and starting to talk. Then at 15 months it all stopped and he regressed. He stopped saying the words he had learnt and went into a world of his own.  We began to have difficulty communicating with him and understanding his wants and needs.

Being very concerned we went to the Drs and we were referred to CAMHS (child and adolescent mental health service). At this appointment, just 15 minutes in we had the diagnosis of autism. Knowing now how long it can take to get a diagnosis for a child, it must have been so obvious and Tommy has remained at the more ‘severe’ end of the spectrum since.

As any parent would we then asked the question why? What caused it and more importantly what do we do now to cure it. Shocked by the response of “don’t know” to both, we were sent home with an appointment in 6 months-time to see how we were doing. And that was all the support, help and advice we received.

The days, weeks and months that followed were pretty hazy. Looking back now if I had understood what was to come I think I might have just given up. Not knowing what lies ahead was definitely a good thing in this situation. As it was I thought we were up against something we could research, find a way through and make Tommy better very soon. Then we could get on with our life as usual, as it was meant to be, life as other families can live.

We aren’t given anything we can’t handle. I do believe that. Whatever is thrown at us, we are also given a way to find the resources we need to help us too.

One of my life mentors is Tony Robbins ( a guru in personal development) and a quote of his really spoke to me; “You never know how far you can go from the point where you thought it was the end”  I wrote this on a post-it note and it’s been up on my wall for a few years now. It still inspires me.

It really isn’t about what happens to you in life. We all experience pretty bad situations and some extreme stuff that really challenges us. It’s how we approach those times and situations, and how we deal with what has been thrown at us that will define the outcome and how we grow as a result of that experience.

Being interviewed about the 6 years since Tommy was diagnosed we touched on the fact that he is at the moment still non-verbal. He can say a few words if he needs to like ‘chocolate’ and ‘bath’ (things he likes) yet he is unable to communicate any pain he is feeling, or even point to a part of his body that hurts. With no prior warning he can meltdown to the point of head-banging the walls, floor or windows with such a force that is bound to hurt. He hits himself in the face and if I am in the vicinity he will hit, bite and head-bang me too.  All we can do is attempt to keep him safe while this is happening. Any mother will go towards their child who is suffering without concern for their own safety at times, and when I do I usually come off worse.

This makes life very hard and unbearable at times, yet I do not seek any sympathy. I would just appreciate those that support us to understand. Tommy is slowly making progress in that these meltdowns are becoming less frequent since we changed his diet a few months ago to take out gluten and dairy. We are hopeful that this progress will continue.

Would I change anything? Yes I would like to be able to help Tommy with whatever is preventing him communicate verbally, and to stop these meltdowns completely. Saying that, there is always something in life we would like to change, and that’s just part of the journey we are all on.  Given all this, I still live and love my life.

With love and gratitude,

Nadine.