Sunday, October 2, 2016

Walking around in a World that doesn't understand you.

I am watching my son play. He is in his own little world. He is spinning, laughing at something he found funny, talking to who ever is listening, most likely its his buds, Charlie Brown, Snoopy, Elmo and Thomas. He is happy. In his mind, life couldn't be better than this. Outside of his reality, however, it is a different story. Its cruel and harsh. Demanding and judgemental. Its a world that he only visits periods at a time,then goes back to his world of laughter, hugs and the characters who understand him the most. What he doesn't know is he is walking in a world that doesn't understand him.

Just as he is experiencing the world around him, the world experiences him. Some will be compassionate and some will not. Some will not understand and some will. To him, all those who have had the pleasure of meeting him, whether or not on a personal level, are just faces. Some he will know and they will get the gift of his smile, but most are just as random as the events of his day. Except for the people who know him, most people will not understand that. Rather than being compassionate, he will face ignorance his whole life.

Many people have this misconception that neurological disorders end when a child who has been diagnosed with one becomes an adult. My son will always have Fragile X. He will always have Autism. He will always have Sensory Processing Disorder. None of that will ever go away. As a parent, I can help him adapt. I can help him understand himself better, so he can function as best he can in the world that doesn't understand him.

Through services like ABA, Occupational Therapy, Speech and special education, he can learn more about himself and ways he can experience the world on his level and comfort, so it is enjoyable to him, not anyone else. People seem to think that the services that are provided for our children are designed to make them more socially accepted. No my friends, it is not. Those services are not for society's benefit. They are for the benefit of the person who needs them. It is for the person who needs to feel comfortable with the outside world. Not for you to cast your judgemental eyes towards them as they navigate through public. Nor are the services there to better equip them as they listen to the whispers said about them when they have no control over what is happening to their bodies.

Sadly, there isn't a day that doesn't go by where we don't get the ignorance. Whether it be while we are standing on the sidewalk waiting for the school bus to come or in the grocery store. Thanks to his innocence, he doesn't notice a lot of what is going on, in time that might change. Or it might not. I, as his parent, am fully aware of the possibility that I might have a child who will be a young man, who cognitively will be a little boy.

He will always be my little boy however old he is. As he grows, I will always be that little boy's champion. I will watch him walk in around in a world that doesn't understand him. As he walks, I will be right behind him, advocating his right  to walk around. Whether or not, the world understands him or not, he has a right to walk along side his brother and sister and with the rest of humanity.

Right now? He is content within his own mind to walk with people who respect him. Today, they are Elmo, Thomas, Charlie and Snoopy. Today he is walking around in a world that has love, laughter, dancing, hugs and smiles. I am ok with that. I will continue to make sure his path in the world that doesn't understand is full of laughter, dancing, hugs, smiles and most importantly, Love. One small step at a time.