Sunday, April 19, 2015

Autism Awareness Event

It has been a terrible 24 hours. Our Saturday started off great. We got up and headed to Flora for another autism awareness event. I am so proud of my hometown for everything that they offer in April in honor of autism. My small hometown does so much more than a lot of big towns.
Anyway, I wish I could say that I enjoyed this beautiful event. However, I was not able to relax and enjoy it. The only time Trenton was happy and not crying...and not having a meltdown was when he was in the bouncy house and doing the art tent. It was simply WAY too much for Trenton and he could not handle all the extra stimuli.

When we arrived I took him straight to the bouncy house. He enjoyed it. He tried to run off several times. He would not hold my hand. He was hitting at me and making his frustrated noises. I knew at this point it was going to get ugly.

He went to the art tent next. He enjoyed the paint. It was the perfect tactile sensory need that he needed at this point. After a few short minutes, we couldn't control him with the paint. All he wanted to do was dump all of the paint everywhere. He started to hit again. His frustrated noises were getting worse. He was making a huge mess and causing a scene.

I had to pull him away from the tent with him kicking, screaming, crying and hitting. At this time the music started on stage. Trenton went crazy. He got on stage and would not leave anything alone. He went crazy and I could not control him. Everyone at the event was watching the musical performance and I was right in the middle of the performers trying to control Trenton and get him off stage. All of the other families were able to watch with their child with autism except me. It is very sad and depressing when I am the only one who had an uncontrollable child there. This is where the difference in severe and milder forms of autism come into play.  Andrew was able to participate and enjoy the entire event including the walk, music, and other activities and especially playing with Lincoln and the other kids there.

I had to carry him off the stage kicking, crying, hitting, and screaming. When I put him down he took off on a dead run to the road and pond. I have never seen Pops run so fast to help me try to catch him. When we caught him, Pops took him back to their house. Trenton was in a full blown autistic meltdown at this point and I was unable to control him. Poor Pops dealt with Trenton's meltdown for the next two hours. I stayed at the park with Andrew and Nana and the rest of the people who came to show us support.

Later in the evening, Trenton had more meltdowns. I haven't seen meltdowns like this from Trenton that lasted hours in a year. Unfortunately, Trenton didn't sleep and has been up for the majority of the night.

I know there is no way these words can make a person understand the life that Trenton lives and the life that I live taking care of him. The past 24 hours have been HELL!  It is sad that some people just simply don't believe me. I, in no way, exaggerate any of this. I have many witnesses to what happened yesterday. In fact, I had a local photographer ask if she could take pictures and make a documentary of my life to let people know what I go through. She saw it and understood.

On days like this I can't help but worry what life is going to be like in a few more years when he is bigger and stronger. So many families have to send their child to a special place or home when they get too strong for their parents to handle. This is one of  my fears for Trenton.

For now, this is just another lesson of why we are prisoners in our own home.....why we can't go anywhere!

Art tent!





Walking the walk with Mason, our old neighbor.
Just a small portion of our family, friends, neighbors, and church family who came.
Andrew enjoying some music time!

2 comments:

  1. what a very tough time! I completely relate, and I know how hugely frustrating something like that is, especially because it's an event for kids with autism, and you see kids all around seeming like they are enjoying it and just fine, and it just makes you feel even more alone. I wish I could be there so Janey and Trenton could melt down together and you and I could have some coffee together!

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  2. Suzanne - I am Angie's mother. She has told me about your blog and I think she has read it many times. I can hardly bring myself to even read hers, but I decided to check your blog out. Just let me say this......I didn't just shed tears....I sobbed......You are living the exact life my daughter is. It is more than this Nana can take most days! My heart, as well as my prayers, go out to you!!! I also wish you were here to share a cup of coffee together!! God speed!!!

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