I never look at River and think lifes unfair. I never look at him and wish he was different, and I never look at him and feel sorry for him. Down syndrome just doesn’t make me feel pity for him, as he has a wonderful life and other people have it so much worse. Having Down syndrome does not make his life bad, far from it.
But what is unfair for River is that from the moment he was born he has had to prove his worth. And that goes for any other child born with Down syndrome. From birth they are valued by their capabilities and how “normal” they are. By how similar to their peers they are, by how fast they reach their typical milestones, by how close they are to societies expectations of what a child should be like.
Any other child just gets to go to school, yet our children have to prove they’re capable.
Any other child just gets to go to swimming lessons, yet our children have to prove they can cope.
Any other child gets to go to dance class, yet our children have to prove that they can keep up.
Any other child gets to go to football club, yet our children have to prove that they are able.
And on it goes – for the rest of their lives.
If you don’t have a child with Down syndrome, just imagine how that feels for parents who do. To know that we can’t just decide to enrol our children in extra activities, we have to enquire whether they are welcome and fight for their place.
Imagine how it feels to know that our children’s worth, is based on how much they act like yours.
Any child can not be good at something and that is totally normal. Any child may want to be an amazing dancer, yet have no rhythm. Any child may want to be an amazing footballer, yet have two left feet. Any child may want to be an scientist, yet may not be academically gifted enough. Any child may want to be an artist, yet not be creative. That’s life. But the difference is that most children still get the chance to try, or work at it until they progress. Our children are written off immediately, often as soon as the words Down syndrome are mentioned. It is just assumed that our children can’t, when in fact the reality is that with a little encouragement and support they most definitely can.
Stand up for your friends who have children with additional needs. Welcome them and include them into any groups you may run or be a part of. Have their backs when they get knocked back and once again get told their is no place for their child. Put yourself in their shoes and be the friend that they deserve and very much need. We are all stronger when we have inclusion.
I am River 