Thanks for letting me rant, and for taking the time to respond to me when I'm being less than graceful about my life. I would never ever want anyone to think that I don't love my child or smother (not literally) him with kisses each and every day. I love and appreciate every breath my child takes. He is the most amazing, wonderful thing to ever happen to me. I want to rant a little more though, so skip this one if you need to I won't mind.
I wish there were more kids in our community like Skyler. I don't just mean, cute playful and loving. I mean blind too. Don't get me wrong, it's not that I want people to suffer, and it's not that I'm jealous of others and I wish something bad on them.. I just wish that it was easier to find people in the community to relate to. There are blind children born all the time, but not a lot. Not enough for people to see them as normal. Not enough for me to be able to go out into the community and find someone else like me, someone who can relate. I find it's even hard on here to find other parents with blind children in the blog world. People don't talk about it enough, typical people aren't exposed to blind children enough. And who will my child relate to when he gets older and realizes/learns that most people can see. I'm hoping we will have some friends with blind kids, but I'm worried the only time he may meet up with other blind kids is at CNIB parties.
So when I say I have the desire to feel like I fit in, to feel like I belong, I don't mean that I wish my experiences were more like theirs. I don't wish that I had things easier, I don't wish that I could relate to their typical children, I wish there were more people who could relate me. I wish there were more kids like Skyler so he doesn't have to grow up feeling alone, feeling different than everyone else. We are all different in our own ways, but it helps us feel like we belong when we can find someone who is different in the same way that we are. I suppose that's what I want. To feel that there are more people out there who just get it. Less people who ask "What's wrong with his eyes?" less people who ask "Why is he so small?" and more people who can say "My child is tiny too, my child has nystagmus/strabismus as well."
And not just that, but I want people, even typical people to normalize blindness. Not to see it as something they should pity or look down on. I want to educate them, I want them to know that my child's life is no less wonderful or beautiful than theirs. I want them to understand that he experiences the world in his own way and it is in no way less meaningful. He has the same wants and desires as any kid, he wants to be accepted for who he is, to be loved, to be friends with others and not to be judged or gasped at or pointed and laughed at. In fact I'd say I want that for all children with special needs regardless of what it is.
I think the problem is that most "typical" people assume that most others are "typical" as well, without giving a thought to the possibility that maybe they are hurting someone else's feelings when asking why they don't seem to be the same as everyone else. And to go even further, some people don't realize that they need to educate their children on the importance of accepting others regardless of their differences. Some do, but a lot do not. It's not often a problem with the little ones they are exploring the world and finding differences and "sameness" everywhere. It's more when they get to the teenage stage and they don't think about anyone but themselves. A lot of teenagers are cruel to kids with special needs. I know this because my high school had a large program for special needs students. It was not uncommon to at times see kids laughing and pointing.
I'm hoping that maybe by being open about Skyler's conditions with everyone we meet, that someday we will pull others out of the woodwork. Maybe we will find others who have had similar experiences but didn't know where to go or who to talk to about it. I'd love to set up a play group for parents with blind kids, somewhere safe they could play for a while as the parents have time to talk, but I don't think there are many people in the city with blind kids who would have the time. Even a playgroup for parents of special needs children would be wonderful, but it's hard to find those other people. I have been trying for months to find any play group in the city (typical ones) and I've only found one so far. However, it's worth a try. I don't see why I shouldn't give it a shot.