01/25/14 - BEING An Autism Mom Has Defined ME

I know I just finished a blog post a little bit ago about this woman who abused and killed her 3 year old son, but I just came across another story and video that I feel the need to write about. 

Avonte Oquendo is... excuse me... WAS a 13 year old boy with autism, who was non-verbal. He had a history of wondering and about 3 months ago, he wondered away from his school in New York, never to be seen again. Just this past week, parts of his body were found in a river in New York, not far from where he was last seen. Water acts like a magnet to some kids with autism as they are drawn to it. Whether he entered the water on his own, not able to get out, or something even more unimaginable happened and he was placed in the water by someone else... the investigation is still ongoing. 

This video I am attaching to the end of this blog is a video of Holly Robinson-Pete as she explains how important Autism Awareness is. As she said, Avonte was non-verbal and was unable to advocate for himself. So when he did wonder, he was unable to tell anyone "hey I am lost" or was unable to tell anyone "hey I am scared, please help me". This made me think of Conor. It also made me think of a conversation I had with someone very close to me. (See conversation below.)

A LOVED ONE ASKED:

"I'm not being critical, honestly, honestly, I'm really, really really not. I just want to understand. You say "Autism will not define my son", yet you have it tattooed on you saying it, signs everywhere saying it, even signs in Conor's space to remind him of it. You DEFINE him every minute as a child with Autism. I just need to understand, I'm not being critical. I just don't understand the constant publication of a diagnosis which "defines" something, VS the constant encouragement of overcoming challenges. It's not something he understands now.. but later, not so much"

MY RESPONSE:

Because sooooooooooooo many parents say "oh my kid has autism, he CAN'T do that" or "he has autism he will never be able to do that". Or other people who see a kid with autism and think the same thing. HE CAN'T..... HE WILL NEVER.... Not Conor. He is going to have the same opportunities, and I am going to make sure of it. He will try everything (such as baseball and soccer) if he doesn't like it, so be it, but he will try. I am not going to let his "disability" (which I don't see as a disability) define who he is. CONOR will define who he is and who he will become. When he does get older and starts to understand it more, I will basically show him how far he has come and that he is just Conor and he can still do whatever he wants to do. How he goes about it may be a little different, but he can still do it. No matter what other people want to label him, he is still my son and that is all I see.... Unfortunately, the rest of the world may see something different.  FOR EXAMPLE: We went to Safeway to pick up little cups for therapy. I had an Ink4Autism shirt on. The checkout girl tried to talk to Conor, of course he didn't respond. I told her "he doesn't talk yet, but we work on it every day". After that, how she looked at my son TOTALLY CHANGED. It went from excited to talk to a little boy to what seemed to me like sympathy. Why do people need to act like that? It makes me sad and pisses me off at the same time. 

A LOVED ONE RESPONDED:
But you don't need to make excuses for him and again, there goes the labeling issue. You don't want people to feel sorry for him yet you label him and make sure everyone knows he has autism. Like you have to explain why he's not talking to them.

MY RESPONSE:

That is what I would LOVE to change. How OTHERS see my son. He is still a little boy, with feelings and desires and wants and needs. He just has a few more challenges than other "normal kids". I don’t want people to feel sorry for him. By me telling her he had autism, she is now more aware and maybe the next kid she approaches who is of talking age and can't talk, she will not be the same way to. I want to help people understand. I want to change perception. I don’t want people looking at my kid different. But if they have to look at him different UNTIL I can enlighten them of the disorder so be it. NOT TO MENTION........ Who's to say people who don’t know about it, ask "what are the signs" and I tell them the signs or tell them where to look for more info and all of a sudden something clicks and maybe their kid or someone they know has the same signs... Next thing they are getting services and help that they need. It’s all about education. Everyone keeps telling me "God gave me this child for a reason" maybe this is part of the reason.

 A LOVED ONE RESPONDED:

Yes, but education doesn't involve your own child.

This is pretty much when we agreed to disagree……………...

I still feel that it is all about awareness and education, and yes, it DOES involve my child. Everything I do involves my child. But, just like Holly Robinson-Pete says in this video “The stigma of autism is difficult to process. People just don’t know what it is and they are scared of what they don’t know. It has to be out there more and we have to talk about it more.” THINK ABOUT IT…….. IF more people were aware of what autism was and IF less people were afraid of what it meant to have autism, it is quite possible that someone would have been able to really SEE Avonte and someone would have SEEN and really NOTICED the signs of autism and contacted the local authorities. There were signs and posters and news casts and all kinds of stuff announcing this missing kid, if more people would have known to look for the signs…. This 13 year old boy just might be home with his parents right now, rather than his parents planning a public memorial.

Who’s to say that Conor, who ALSO has a tendency to wonder…. who ALSO is non-verbal…. won’t wonder from HIS school, or God-forbid from someone’s home? I sure as hell would want the community to know what autism was, signed to look for, so if they came across my son and Conor was unable to talk, they didn’t just assume he just didn’t want to talk or that he was fine, when in reality he was lost and had no idea where I was or how to find me. It’s all about education and awareness. Plain and simple……. THERE NEEDS TO BE MORE OF IT! If that means more shirts that say something about autism, then that means more shirts. If that means more posters, more tattoos, more vehicle stickers, then so be it. WHATEVER it takes to catch someone’s attention, to start a conversation and to ask a question.

 

Autism Will Not Define My Son…….. That is true. Conor’s diagnosis won’t define who he is, or who he becomes. But you know what? The more I think about it….. 

BEING An Autism Mom Has Defined ME!!!