Wednesday, 02 May 2012
Obi-Won Kenobi, Return of the Jedi, LucasFilm,Ltd
OK, so what kind of blog about autism spectrum disorders would this be if every once in awhile I didn’t channel Star Wars, Star Trek, BattleStar Galactica and a few animes and mangas. Truth be told only the anime and mangas are the boy’s obsessions. Everything sci-fi belongs to me and me alone. While collegeman will allow himself to be pulled into a Star Wars movie especially during the lightsabre duels, Highschoolboy will regale you with anomalies, impossibilities and things he generally considers annoying about the entire genre. He is oh so not fun at these times and I end up throwing him out of the room.
But the point of the quote is an important one for this post. April was autism awareness month. Much has been made about neurodiversity, the cruelty of society and their lack of compassion for our children in just these short few weeks. In fact as many people reading this know, there is that one particular blogger who unwittingly started a chain of posts in which she did not come off too well, until she apologized. But I think something even more important may have happened during those days of autism-mom ire. It is recognition that many of us do have our own perceptions and perspectives and how everything we do colors our every waking moment. Now I am letting no one off the hook. If you read my post about the incident you know that I was not and probably still not too enamored of the individual who wrote the original offending blog, but I think it’s important for us to take a look at what happened and see what we can do to minimize misperceptions within our society.
Listen we all come to the party with baggage. That baggage for many of us in the autism community is rather heavy. As the parent of two aspie boys I know what I deal with on a daily basis. But I also know that it is nothing to what so many in our community experience in trying to help their nonverbal, non-toilet trained, non-communicative children. As I have mentioned before I also am a volunteer advocate in my town, so I sit in on a lot of CSE meetings. I have helped people whose children range from mere speech impediments, to clinical depression, suicidal tendencies, anorexia, bi-polar and cancer. I have helped people set up out of district placements and residential placements for their children. I have seen joy when a child is undesignated because they can hold their own, and I have seen anguish when a parent has to admit they are helpless to help their child. Being a moderator on @thecoffeeklatch has opened up another world of information for me. I have found out about medical conditions that I never even knew existed. And yet, with everything that I have seen over these past 15 years it doesn’t even cut through the surface of what people face and the strength to which they deal with soul sucking trauma.
I don’t know, does that offend someone when I speak of it that way? How else would you put it? I guess this is my perspective. Sometimes you just feel like your soul is being ripped out and you are fighting with all your might to hold on so tight. Many of my friends have turned very adamantly towards God. They reach out to him and his wonders, asking for his guidance and his care. Others, like me, have turned away from their belief in God’s wonder and just know that he is there in some form whether we are angry at him today or not, is something I can’t answer for everyone but myself. That of course would really depend on the incident and the moment I suppose. But that is my perspective.
I think perspective, as with the truths we hold dear, depends greatly upon our day to day lives. But more than even that, we want the world to see us, our families but most importantly, our children, as people. We want the world’s perception of our children to be one of respect and care and kindness. We don’t want them to be pre-judged because they have a disability, but we also don’t want them to be ignored because they have a disability either. We want the perception of society to be one of openness and an out stretched hand. One that says here we are, you are welcome in our world, you are welcome in our society. Come with us and together we will brave the future.
But the question for us is how to we get people to change their perspectives so that our children are seen as the people they are but with an acknowledgement of their issues? How do we get society to think outside of their own perceptions and acknowledge that not everyone’s life is like the one they lead? I don’t really know. Hubby once said that if the boys had not had autism, he might have been one of those parents upset that children with these disabilities were going to be included in school instead of in special classrooms. He was never angry at the parents in town who tried to stop the inclusion program. Of course, he also fought tooth and nail to make sure it happened for his sons, but he was able to understand the other side as well. It was a matter of education that is all. Truthfully after a few years of inclusion, there is no more hullaballoo. It is the way things are done here. Special education alongside regular education all together in one big societal mishmash. Well as much as this suburban county can be called a societal mishmash.
I think hubby has an amazing unique voice in this world. He has an uncanny ability to see the other side (except when he is arguing with me of course) I always wonder if that is from his daily legal experience. Life for him is being able to see every perspective before you fight for your client. Or perhaps, because he has this uncanny ability to see the world through other people’s eyes is what makes law a perfect profession for him. Don’t know, but what I do know is that he can keep you grounded and allow you to take stock of reality. Everything is never one side or the other, ok unless you are picking on a four year old child and thinking it’s funny. The reality is, is that gray covers more of life than what we would like to admit. Is it easy? Not really. Is it worth the effort to make society see our children? We have no choice if we are to secure for them a future. They also have the right to a future like anyone else in this world. Just how do we do that is the question? How do we make society see our perspective? How do we get society to perceive life the way we do? How do we get society to see us and not see through us?
The truth is that we must stand up and be counted. We must open our voices and shout. We must make those in power hear us. We must make society acknowledge that our children and we exist. Not until all in society are welcomed by society; not until all in society are helped by society; not until all in society are loved by society; not until all in society are viewed as part of the company of humankind, will we all truly be free.
Until next time,