Monday, June 29, 2015

Please keep your Ignorance to yourself, Thank you very much.

It isn't a big secret among special needs parents, that we get presented with a lot truly asinine comments when we take our children out into society. It doesn't matter how mad it makes us that prefect strangers offer comments and "suggestions" to us. It doesn't matter how much we try and educate everyone on what it means to love and live with someone with special needs. There is always going to be that percentage of people who, have no filter, no empathy and no regard to our lives or the loved one in our care.

It doesn't matter that we have a full month dedicated to Autism Awareness and Acceptance. There isn't any amount of blue puzzle pieces that are going to change the opinions of others and how they see our loved ones. I have said this before that Autism and everything that is within that spectrum is a full time gig. 24/7, 365 days a year, lifetime kind of deal. Its not going to go away on it's own like a rash. It will be with this person for their lifetime. None of that stops people from saying cruel things to either the caregivers or the person themselves.

I have a child that has a genetic condition. One that includes Autism as one of it's many wonderful things that affects my child. There is nothing I can do, besides make sure this child gets the therapy and medication he needs to progress, grow and thrive. I can't do anything about his stimming or his sensory issues. I can help him the best I can, but those are things that will always be with him. They are part of what makes him, him. Y'know the stuff that he can't help. Stuff he was born with. So when people make the decision to open their mouths and say something to person living a life, with something the other person doesn't understand it is ignorance in it's purest form. To be honest, I really don't care if this comes across as sympathy searching. Its not. It just is becoming more clear to me that I can't walk out my front door without society looking at my son as some sort of reject of what is considered normal.

Now, before I start, this is not a bashing of religions. I don't give a fig about who you worship to or how or where you do it, as long as it doesn't infringe on my life, we are good to go. But if you go up to someone who has a child that is stimming in the grocery cart, not hurting himself or other people and you suggest to the parent of that child, that they need to have their child examined by a priest for a possible demon possession, then proceed to give that parent the name of a priest that performs exorcisms. Then when it is explained to you that the child has Autism, your response is "He is in God's hands now". You are indeed a person who needs to keep your mouth shut. I write this post after a exchange I had in the supermarket, with two god fearing women, who thought my son was possessed by the devil, because he was stimming verbally and flapping his hands. This, to be honest, was a first for me. Again, I have dwelt with some pretty fucked up things when it comes to my autistic children being out in the public. But this one, yeah this one was a first. The sad part is that there was going to be no amount of education about Autism that was going to shut these two women up.

Since my children were both diagnosed, I have never had anyone tell me that they were possessed or given the name of a priest who preforms exorcisms rites. To say that it shocked me, is a bit of an understatement. This only proves that it doesn't matter that there is month devoted to the education about Autism. It doesn't matter, really. People who don't want to learn about what diversity mean won't educate themselves.

So to the two ladies in the grocery store, pardon me if I will not take you up on your priest offer to exorcise my child. He is a child that is loved, taken care of and one that sadly has more of an understanding about the world around him, thanks in part to how he experiences it, than you both.

 Please keep your ignorance to yourself, thank you very much.

Tuesday, June 2, 2015

Do you really have any idea?

As I sit down to write this, I am coming from doing an over night EEG testing for my youngest son, so if my word are harsh or a bit brash, its because there was very little sleep to be had by either one of us.

A few days ago, I had some comments put on a couple of my posts that were very suggesting in nature that I, and like many other special need parents out there were doing it wrong. That we are parenting our children to make them be victims of society. That how could we, despite our best efforts to help our children grow and prosper. Now I normally don't pay much heed to the ramblings of trolls. By the grace of gods, I don't get that many, but when I do, they are of the epic persuasions. Maybe due to my worries about this up coming testing of my youngest ( thanks in part to the evidence of seizures), my mind started to go to that dark and very unhappy spot where I start to question, if I am truly a horrible parent. I know the answer is no, but a sleep depraved and worrisome mind can play those kind of tricks.

As I sat and watched the EEG tech put electrodes on my sleeping son's head, hoping to hell he won't wake up, my thoughts drift back to the comments made

"Its devastating that people like you are parents to those who are special needs. Clearly you don't love your children enough, as you are trying to hold them back"

People like me? Oh, you mean those people who would do anything just to make sure their children felt loved and supported. Those type of people who would not let anything get in their way, as they tried to provide for their children. Those people? The ones who have slept on shitty hospital chairs, just so when their children awaken from testing or a procedure, they saw a loving face? Or are the people you are talking about the ones who will battle insurance companies, shitty school systems or anyone else who stands in the way of their child's growth and development. If those are the type of people you are generalizing, then yes I, truly am one of those people.

They don't sit in the doctor's offices with me, nor do they sit in the IEP meetings with me either. They do not call the insurance company on my behalf in regards to testing that should be covered, but for some reason the Insurance is dragging their butts on authorizing it. These people who troll the blogs and the pages don't have one stinking clue, because if they did, just have one, they would not beat down a parent for doing what they think is best for their child(ren).

Its one thing to point out if a parent is abusive or harmful to their children, but for the most part everyone who loves their children and wants to see them live a life to it's fullest, are willing to go to the ends of the earth. If there is something that you tried and it failed, it doesn't mean it won't work for another.

When I write, I give just an inkling of what it is truly like in my house. Just as you all can't come and live with me to see my day to day, I can't do the same with all of you. I write because I feel that people need to know, that they are not alone. That if some of my stories are ones that people can relate to. I get that I am not everyone's cup of tea, to which I am not trying to be.

So many of us have our different stories. The diagnoses, the testings, the results and the battles we all face. Each and everyone of us has been there.

I drift back to Sunday night, when at precisely 2:30 am, half way through his EEG, he sits up and pulls half of the electrodes off his head. My thought was, he is 5 and doesn't understand why this test is important. As I start to sing him back to sleep, the tech comes in to try and figure out what do next, as we have only collected 4 hours of data out of a 10-12 hour study. I carefully cradle my son, in the hopes to get him back to slumber, I remind myself, a parent who doesn't love their child enough wouldn't be sitting here doing this.

 And for that, I ask those haters and nay sayers,

" Do you really have any idea?"

My answer to you is, No, you really don't. You don't live my life nor do I yours.