Have you ever wished life was like a DVD that you could pause the good bits, rewind the funny bits but fast forward all the boring stuff?
My children are both fixated with DVDs to the point that I can name every character on Peppa Pig and every machine on Bob the builder! But being autistic they don’t just want to play the DVD from start to finish…they want the same episode repeated and rewound, the same few minutes fast forwarded every time and the DVD turned off at an exact point every time it is watched. The DVD is predictable, familiar and brings security. Unlike the reality of life.
As a parent I will need to help my children deal with that reality. Every child craves security, predictability and routine but children on the autistic spectrum cling to these things for dear life. And they need so much more patience and support to face change of any sort.
We are normally programmed to want to try new things, to challenge ourselves and master new skills. If we didn’t have this drive then new technology would never be discovered. We would never be able to learn a new language and we would never visit new and exciting places. No-one would ever learn to drive. We would all still be wearing nappies! But what do you do when your child seems to have no desire to learn new things, when the thought of even something a little different causes them so much distress and confusion and makes them scream? How do you get their life off of ‘pause’ and get them to ‘play’ again? How do you show them that there is more to life than their beloved DVD?
We are taking every day slowly. In fact we are taking life slowly. We are reaching milestones years after other children and celebrating achievements that other families thought nothing of. It is kind of like living life in slow motion. But then slow motion has to be better than pause!
Anything is better than pause!
So I have moved my daughter out of nappies and into pull ups. It’s a start. Slowly I will be introducing her to the concept of using a toilet. What some children achieve within a week is taking us years to master. But she is slowly becoming more aware. It isn’t going to be easy and yes I wish we could just fast forward this one to avoid the tears and the tantrums and the wet clothes but this is part of the programme and as long as we take things slowly one day we might just get there. We are just not going to settle for pause any more.
Slowly but surely things are changing around this house. New books are getting introduced at bedtime and new activities are going to be tried. I am pushing the boundaries by pressing the play button and holding onto the remote so that rewind can not be pressed any longer.
There’s going to be something new on their plates too. Just a little for now. A few grapes, a different flavour of yoghurt, a little bit of rice to try. It may only get touched or licked but hey that’s progress! It may get thrown on the ground or left on their plates but we have to start somewhere. They have lived on mashed potato, the skins of chicken nuggets and fish fingers and chocolate spread sandwiches for way too long now. I am even making them have a multi-vitamin. Oh what a cruel mother I have become! I am not popular but then I would not be good mother if I allowed them to remain where they are. They have to grow up and move on. They are not babies any more.
And the DVD’s are getting limited. For children who struggle with social interaction and especially for my son who can not speak at all, watching DVD’s is not helping at all. I appreciate we all need time to relax and unwind and that life is very overwhelming for these children but mum is going to become more interesting than your DVD. We’re going to play together somehow. We are going to learn together and have fun. We’re going outside to explore new things.
It isn’t that we haven’t done these things before. But life can so easily find you stuck in a rut. It became easy to settle them by putting on a DVD. It got too much trouble at mealtimes to face introducing new food again and the heartbreak and trauma of toilet training combined with constant appointments found me putting nappies back on my daughter too often that it became an everyday occurrence. And now I have realised that sometimes it has been me pressing ‘pause’ and not just the children.
We can’t allow the mundaneness of life to put our life’s on pause. We can’t allow ourselves the liberty of getting stuck in a rut. If we don’t try something different we will never experience the fullness of life. Yes my children have developmental delay and autism and find doing things differently a challenge. But life isn’t a DVD. It isn’t the same thing every day (even if they do everything they can to make it so). Today is a new day and I am determined my family is going to enjoy it and let go of the pause button. If you don’t hear from me it’s because I’m busy playing with my kids!