It's so awesome to see Reuben hanging out with a bunch of kids who all encourage each other and cheer each other on. There are no snide comments or double-edged "compliments". It's lovely to not have to worry about what other kids think or say or do and just let Reuben be Reuben.
It's hard hard hard to see a bunch of disabled kids and your kid is there. You say to yourself, my kid is going to be fine, he looks completely normal.... then the starter gun goes off and immediately he is one of them. They are all different but they are all the same. Your heart sinks as the dream of your child running quickly to the finish line and winning seeps out and instead you shout and cheer and encourage him to keep going, come this way, go Reuben, go honey, you can do it....
I am so proud he is going, it's an adventure for him, it's an achievement, it's exciting. I tell people he is going, their eyes glaze over and they ponder what disability means and what the labels are. You can see they are glad it's not them, it's a club none of us signed up for. I keep talking though, because I'm not ashamed of my son, I love him, I'm proud of his achievements.
With a lot of encouragement Reuben can keep his bedroom tidy, he has his own style and choses his own clothes. He can make his own breakfast and school lunch, and knows how to use the washing machine and the dishwasher. He will willingly walk the dog or feed the cats. (He hates feeding the chickens, the scraps are yuk!!) He can follow a recipe and bake a cake as long as there is only one recipe on the page (otherwise your cake is a bit of all the recipes on the page!!) He hates bad smells and loud noises and clothes that are uncomfortable.
He spends hours playing with the children in our street. He is mostly a gentle and imaginative friend. He creates whole worlds from his imagination and can get the other children to join in.
Reuben is a talented artist. He spends hours drawing and researching art. We can't wait to take him to an art Gallery in Melbourne when we go at Christmas. Christchurch Art Gallery is closed for another couple of years (sigh). He loves to read and stops often to say, I'm on page 16! a bit later, I'm on page 18!! He loves his family so much even though he struggles with all the noise and comings and goings of a family, he is fiercely protective of us all. He supports the underdog 100%.
Having someone like Reuben in your family changes who you are. All of us are different because of just who he is. We are challenged over and over and over. We must find reserves of patience and strength long after we feel we have run out of energy. We must be consistent, we must be brave. We are vulnerable, we are broken, we struggle, oh how we struggle.
Nothing can really prepare you for parenting a child with special needs. It challenges you beyond what you can imagine you will be challenged. You realise all your hopes and dreams are really just that, your dreams, and you let them go (over and over and over) and you hold on to what you have.
You learn to stand on the sideline and watch your child's talents unfold. The child has no problem with hopes and dreams, they have plenty. You realise that it's not about you, it's about them. It's all about them. You talk to your child and listen and encourage (and pray) and wonder what the future holds.