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

Thursday, 26 December 2013

Christmas Engine Overheating.

Best. Christmas. Ever. I honestly don’t know who has a better time, the children who get to experience the mystery and wonder of Santa or the parents who soak in the smiles on their faces! The girls were thrilled were their gifts, no disappointment and I've got to say that hubby nailed it this year with gifts for me. What a thrill to open a gift and know that that off hand comment you made months ago was listened to. How spoilt am I?!  We remind our girls of the reason for the season, and for us it is much more about sharing space, time (and food!) with those you love and who love you.

We drove for more than 5 hours on Christmas day to spend time with my SIL’s family. Absolutely worth it. So much friendliness and warmth it was overwhelming. That’s the ‘magic’ of Christmas. For us it is always a little nerve wracking to go and spend time with people we don’t know and who don’t know us. There have been so many experiences in the past where strangers have treated our big girl or us in a way that was unsettling. Those moments stay with you and the ill feeling returns any time we put ourselves in a new situation with people we don’t know. How will they respond to her? What are their understandings of disability? What prior experiences and prejudices do they have? Do they say ‘Down syndrome person’, ‘Downsie’ or ‘person with Down syndrome’? Any encounter with new people is filled with trepidation.

I am so grateful that our day was spent in a small country town with people who weren’t filled with judgement, who didn’t have preconceived ideas about how little to expect of my big girl. I honestly can’t remember most of their names but the kindness they showed to my family and me won’t be easily forgotten.

Imagine my surprise when the bon bons are cracked and MY GIRL is the one reading the jokes out to everybody! Talk about functional literacy! How my heart swelled with admiration for her, know how hard she has worked to get here. Fast forward a few hours and she is the one in the pool coordinating everyone to play diving games when only that morning she had unwrapped her pool toys and told us she was too scared to go diving. What an amazing day – a gift that kept on giving.

And then there was Boxing Day.

As so often happens with our family, any adventure takes its toll. This is the reason we can’t do extra curricula activities after school, why we seldom go away for the weekend. Today my big girl is crashing and burning. Very similar to a sensory overload, Christmas Day was filled with so much for her to process that her mind and body have gone into shutdown mode. Not unlike a car struggling to go the distance in the Christmas Day heat. Eventually the hood needs to go up and the radiator pops its lid. Wait for it to cool down, refill and off you go again.

The heartbreaking thing is trying to explain to my middle girl why her sister is acting this way today. I have to tell her that we don’t excuse bad behaviour, but we need to understand why it happens. We need to be extra patient with her, and to help her the best we can. Telling my middle girl she needs to be a grown up and explaining that her sister’s mind and body is ‘different’ to other people is inevitable, but I don’t have to like it.