Sunday, September 25, 2016

Frustrations of a Spectrum

I have been thinking a lot lately on just how different every single person is with autism. Obviously, I know every person who lives on this planet we call Earth is different. But, seriously folks, autism is a disability where every single person is completely different and that plays a huge role of why it is so hard for people to understand. When we think about other disabilities, they are much more comparable to each other than individuals with autism. My two boys are just one fine example of how you can't compare two individuals with the same diagnosis.

I am involved right now on an autism acceptance committee and there is going to be an autism event in October in the town we live in. The event is going to consist of a lot of vendors for families, such as mine, to meet and get information on. A few of the vendors and sponsors of the event are planning games. GAMES?!?!? I'm glad there will be games for all the "typical" siblings there and for the kids with autism that can do that. But, it is not going to happen with Trenton but it may for Andrew. Trenton is unable to do anything like that. Andrew....he may be able to but he has a very hard time with following directions. If he gets it in his head that the game isn't going the right way, he is likely to go into a frenzy and cause quite the scene.  My mind can't fathom games. I know there are several kids with autism who have autism so high functioning that they can handle the games, especially if they are older. As of right now, anything that is close to what neurotypical children do....well....we can't even come close to doing it. That is one area why this disability is so beyond frustrating. BEYOND FRUSTRATING!!!!!!!!!!!!!!!!!!!!!!

With that said, being able to even take my child to an autism event is HARD work. I have every year since 2012 but he doesn't last long. While he is there, he will be pulling away to go home. He will make his upset noises. He will cry. He may go into a meltdown. He won't stand still, he will constantly pace...CONSTANTLY. He won't even look at anything. His body will be doing what we can't even fathom. So, why try?!?!? Why even put him through that?!?!? Well, I'm simply not. Life is going too good for our routine to put that stress on him. It might just be enough to get him out of his routine and yes it just takes one simple thing like that to totally mess up his sleep pattern, etc.
Yet again, this leads me to the questions, How do people take their child with severe autism to autism events?  I don't know. I am always involved in the events because I enjoy raising awareness for my boys disability but it is hard when your child can't even participate in the event.

I have came to the conclusion, that every person with autism at autism events are on the mild to moderate end of the spectrum. If they do have severe autism, they are not severe in their anxiety and/or sensory processing challenges. They simply can't be!!
Since I have been doing events the past fours years, last year was the first year that I saw an individual with autism pulling away from their parents, pacing, and doing exactly what Trenton does. This person was a grown man. I know this man and I wonder if that is the way Trenton will be when he is an adult?

I talk with a lot of parents of children with autism. I love it!! We learn from each other and share ideas, etc. Honestly, I have only met one family in the four years of talking to other autism parents that had a child with autism where they can't go places due to their child's severe anxiety and sensory challenges along with their autism.
I am very blessed in many ways. Both boys could be a lot worse. However, it doesn't make it better when your child falls into that very small place on the spectrum where you are literally stuck in your own house because their disability doesn't allow them to go places. It really stinks! I am sure if I challenged you to stay in your house every hour of the day except when you are at therapy and the grocery story for two weeks, you would get cabin fever! Guarantee! I am used to it, doesn't mean I like it but I am used to it. I have learned to accept it but it doesn't mean I don't hope for and pray for a huge breakthrough for Trenton one day where we can attend events and feel like a somewhat "normal" family even if it is just for one hour!
Every time I see a child or adult with autism that is out in public, my heart is so beyond happy for that family because there are many families who are forever stuck in their own little bubble because they can't go anywhere!




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