Sunday, May 18, 2014

You don't know what it's like...

This past week has been a bit of a challenge for me. With IEP meetings, doctor appointments and trying to get housework finished, all done with very little sleep. So you will have to pardon me if my disposition is a little rough.

But this week nothing concreted the notion inside my head that everyday people have no idea just what its like to live my life. I don't ask for much. Common cutesy, respect and keep an open mind. All things that I do for other people. But are those three things too much to ask?

This week I couldn't even get through grocery shopping with my son without the stares and whispered comments. Yes we are the duo, that at least once or twice a week hang out that the cheese section because my son absolutely loves the train that goes around the cheese. It is one of the easiest pleasures I can give this child. Yes we sit there with our cart for a good 5-10 minutes just watching the train. There are times we get the honest smiles, but most of time, as soon as he lets out his excited screech, we get the "What is wrong with that Child" look. There is no warmth in that facial expression. No understanding or acceptance. Its the "lets continue to stare and pass judgement" face. Most of us ASD parents, sadly know that face all too well. And every time we see it, our heart hurts. As we know that our children are just being themselves. And if those people who are cold and unforgiving, can't see the love that our children have to offer the world, then that is a miss opportunity on their part. They are not going to know what it's like. The love of a child that is blessed with uniqueness is something they are never going to get. 

What is interesting is, I had the same thoughts when I was sitting at part one of my daughter's IEP meeting. I will state that I have respect for teachers out there that actually give a damn about their students. As a parent it is extremely frustrating when we are consistently reminded just how behind our child is. Most times we are acutely aware when smoke is being blown up our asses. When comments like " Oh your child is such a joy to have in class and I am just blessed to have her there" when you are looking at report card with failing marks and an IEP that is not supporting this child, the veins in our foreheads tend to twitch. Most of us know that our children are good kids. But what are we going to do about this child's academic future? But again, they do not know what it's like, to be a parent at these meetings. Unless they are parents of Special Needs themselves. As most parents out there will tell you that they will go to the four corners of this green earth to make sure their children are growing and prospering. They will never know what it's like to feel the frustration of trying to make sure the child understand 6 different concepts to do one thing. So when we are sitting there, at these meetings, understand that we are the ones that fighting for this child's right to good education, no matter how they learn. 

Most people are not going to know what it's like, unless they have lived your life. Most people are not going know what it's like being sleep deprived because your autistic son was spinning around the room at 4am, and then  have to sit at an IEP meeting for your other autistic child, while they try to bamboozle you. Most people are not going know what its like to do all of this, because you are the only person who can do it.  All I am saying is that, I wish people would get over themselves once in awhile and open their eyes to the world around them. We aren't going get the understanding or the acceptance until the world knows what it's like. 

I will note that I do have people, who don't have special needs loved ones they have to take care of or a deployed spouse, that understand when I have had a shit day and accept my children for who they are. I am very grateful. I honestly think that everyone deserves to have people like that in their lives.  People who might not know what it's like, but understand and accept you and your family.