A perspective on the world of disability from a mother and an educator. Follow my blog!

Thursday, 16 January 2014

2014 in one word.....

The holidays are nearly over. I have enjoyed pretending to be a stay at home mum for weeks now and it has been bliss, pure bliss. Going back to a classroom and office is inevitable and approaching quickly. The spills on the carpet, the toilet training, trips to specialists, the occasional sibling bickering, the nagging, none of it outweighs the morning snuggles in our bed, the constant giggles and seeing our 3 amazing girls growing up TOGETHER. 

We have had so many projects on the go these holidays: new driveway, revamping the cottage garden out the front, trips away, and dinners with new friends and old. Despite all this keeping us busy, it has been a deliberate ‘go slow’ holiday for our family. We have taken a deep breath for 6 weeks now. We have lived in the moment. I think this practice of mindfulness has been something we all needed.  Perhaps we're spending some time in Holland…. together.

Our big girl introduced us to a world where ‘extra’ is the normal.  From the start there were extra doctors, extra therapy, extra worries…. Just extra. Personally I don’t know of any other way of parenting. In saying this though, we’ve never pushed her. We didn’t spend hours with the colour and shape flash cards, we don’t now spend every moment doing home readers. Even though we are both teachers, we don’t spend our home time with intensive intervention. 

I know other families who do and I understand why. Our kids do need extra. Their path is harder and they have to put so much more effort in just to achieve the same as others.  These parents work so hard for their kids. Every moment spent doing ‘extra’ when they are young will help minimize the ‘extra’ that is needed when they are adults. I have no intention whatsoever to criticize those parents who do work intensively TOGETHER when at home. I get it. I applaud them. In fact, we’ve been accused of it; despite the fact we know we are the opposite. I can’t judge those families as I am not a fly on their wall, I don’t know their context. I don’t know what brought them to make their decisions.

Thanks to the Graves our big girl tires so easily and everything in her body slows down. Everything becomes so much harder and more and more effort is required. While I know that she needs and deserves all the ‘extra’ we can give her and I know how this will impact on our life in 15-20 years time, giving her the space to be herself and to be a child first is part of the extra we are giving her. We want grow TOGETHER with our kids. To us it is more important that she loves and is loved by her sisters, that she gets the chance to find out who she is. That fits our staunch approach to the PC semantics of ‘child with’ rather than ‘disabled child’. It isn’t a motto, it’s a belief, a way of life. CHILD FIRST. DIAGNOSIS SECOND.

I'm sure we were judged as 'pushy' parents because those doing the judging didn't know us beyond a single context. They weren't together with us on this journey. This blog will never be able to encompass  all my beliefs or way of life. It won’t demonstrate how I am learning every day to be a better: wife, mother, and teacher. If all your beliefs can fit into an online post then you need to think harder. No one will ever ‘know’ me or my family because they read my ramblings. But, my ramblings help me to stop and think about having more empathy for how others act and react and maybe it will do the same for those who do read it.

If together is to be the single word that sums up our family and support network for 2014, then I will be delighted. I will put everything I have into living with my girls and my Bear rather than working hard for them. A small distinction, but an important one.

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