He doesn't quite know what to do with himself as he feels pretty rotten with a runny nose, a sore throat and temperature but then he's never really had a cold before.
I was just thinking about the kids being sick and caught myself wondering again about Miranda and how having 2 siblings with special needs really effects her now, and how that will manifest itself later in life! I know she can find things exasperating. When Ned was having weekly counselling last year, Miranda asked when it would be her turn to see the counsellor. So I said when Ned had finished it would be her turn (bluffing madly as she was never actually going to see her). When Ned had finished I offered her the opportunity to go next.
"Do I have to miss school?" she asked. "Yes" I said "an hour on Thursday mornings."
"Hmm." she said, "maybe not right now, maybe when I'm older and have things to talk about."
Miranda is in quite a unique position in the family as she is close to both of her brothers. There is only 20 months between herself and Ned and they have tumbled and played together and kept each other company like a couple of puppies since they were toddlers. However, there is another side to Ned and his Asperger's which doesn't include her, in fact it doesn't include any of us. The part where Ned focuses to the point of near obsession on his interest, usually the computer game Minecraft or some fascinating facts on engineering concepts well beyond my capacities.
Miranda is a very typical girl who loves to dance and sing along to the theme tunes on ABCkids and most afternoons this is what she does with Charlie. She is teaching Charlie to dance (he kind of shuffles) and they both love singing, which they do at the top of their voices.
Miranda also invents games to play with Charlie outside, she on her scooter and him on his trike, and indoors, involving doonas and pillows and a lot of peek-a-boo. And Charlie adores her for her efforts. The beautiful thing about the two of them is that it is always play within Charlie's capabilities. Miranda choreographs little routines and they both have a go at the steps. Charlie seems quite convinced that he is just as good as she is - and to the experts the fact that he can even stand unaided let alone shuffle his feet is still a great medical miracle!
Every family that has a child with significant special needs deals with the daily balancing act of one of the children requiring more attention to do simple day-to-day things. And although as a parent you make every effort to not make the way attention is divvied out obvious, everyone is very aware of what is going on. Charlie requires extra attention to toileting and mobility and constant monitoring for his physical wellbeing in case of shunt problems. We dont make a big deal of any of this it is simply what has to be done and the other kids dont seem to mind. But it is very different when Charlie is in hospital as he was last year. The other children suffered significantly with the chaos of our lives during that awful 6 months and it changed the dynamics of our family. Ned slipped into the symptoms of his Asperger's, and Miranda came to believe she could do it alone- she was only 5 years-old. One year on and Miranda and I are still negotiating the terms of our relationship. She feels she knows what is best for her - what to wear, how to cross the road - and I have to convince her that she can rely on me to do things for her and let her be a child!
And as for Ned...living with Ned everyday is a constant test in mindfulness. When we forget ourselves and Ned becomes overwhelmed, then we all have to deal with it. When Ned 'breaks the rules' then sometimes we, as parents have to approach the situation in a different way than we do with Miranda. Sometimes Miranda sees this and understandably gets upset and angry - and it's not fair. But he does get disciplined in a way that has meaning to him, as do each of them.
When the new parents I have worked with comment to me that they wished their newborn had come with a manual, I wholeheartedly agree with them. We are all winging it, and every day we all have to make it up as we go along.
Sometimes you just have to pray and then parent!