Stages

When you are a special needs parent you go through a lot of stages, at least I have.  Some are bad, some are good, and none of them show any signs of leaving.  One of the worst ones is when you start walking down the road of “Why my child?”  That’s a dangerous one and hard to find a way to turn around.  I could write forever about that hideous stage, but I’m not in the mood right now.  Then there is the stage of simply forgetting your child has special needs, that there is anything different about your family and you just live your life, enjoying your child and all the joy he, or she, brings you.  That’s the really good stage.  Unfortunately, something always happens to snap you out of that stage and brings you back to the reality of the situation.  This week has done that for me.  But I’m finding out that maybe being snapped back to reality isn’t all that bad. 

This week Jackson attended his very first summer day camp.  It is a special camp for children with special needs.  I was so excited for him to have this opportunity.  I know a lot of kids with special needs don’t get to go to camp.  What I really want most for Jackson is to simply have the same opportunities that other kids have.  That includes going off to camp in the summer.  I planned to stay with him all week simply because I didn't know anyone running the camp and to make sure that all his needs were met.  So off we went to camp!  When we got there I was instantly struck with how many kids were there, about 30.  I was also struck with the various severities of disabilities in the crowd.  Jackson was the youngest, most of them were teenagers.  As we stood there getting ready for the pool I was watching all the kids.  And it hit me.  This is my future.  Jackson could be any one of these kids.  Maybe he is the boy sitting in the grass rocking back and forth.  Maybe he is the girl who came up and smelled my hands.  Perhaps he is the boy flapping is his arms as the train goes by.  Or the teenage girl whose speech isn’t understandable.  The truth is, it made me kind of sad.  That first day was hard on me.  I was so excited for Jackson to go to camp, but it made me think of his future and what his future might look like.  I try not to think much about his future.  Maybe that is why it was hard for me.  With Jackson I just kind of need to live day to day.  I don’t know what that kid is going to do every day let alone 5 years from now.  Yet there I was faced with his possible future.  I didn’t really want to go back that second day but the camp wasn’t about me, it was about Jackson. 

The second day was much like the first but a little easier for me.  By the third day I found that I was really starting to enjoy the kids.  I kept noticing an underlying theme with all of them.  Loving.  They were all so loving.  Because Jackson was the youngest they all thought he was a baby.  He was quite popular, especially with the girls.  Every morning they would greet him with a “Good morning Jackson!”, they would rub his head, give him a kiss on the cheek, hold his hand, fight over who got to push his wheelchair, and they would sit in the shallow end of the pool and play with him.  It was so touching to watch.  I could see Jackson light up with a few of them and I knew he had some new friends.   By the time the week was over I was sad to leave the kids and sad for Jackson that his camp was over. 

This week made me realize how lucky Jackson’s fellow campers are.  Their disabilities may make them stand out from the norm and to some that may be a bad/weird/uncomfortable thing.  But I think they actually have an advantage over people without disabilities.  They see the world differently.  To them the world is about love and caring for each other.  Not about making fun of others, hurting people’s feelings, being a bully or acting better than anyone else.  Things many neurotypical children do.  In that regard, I want Jackson to grow up to be like his fellow campers, not a neurotypical child.  I want his friends to love and care about him, not make fun of him or make him feel he isn’t worthy.  I want my son to be someone who sees the good in all people and not focus on differences that set others apart.  After all, as Benjamin Disraeli said “We are all born for love…It is the principle of existence, and its only end."