Living In The Wonderful World Of Autism: Part 3

Living In The Wonderful World Of Autism: Part 3

Following is a Guest Blog by Shelly Lewis, President of Jackson Autism Support Network.

 This is the third in a series of blogs by Shelly, detailing both her personal experiences dealing with autism and as President of Jackson Autism Support Network

What it must be like to be trapped in a nonverbal body

…As I watch my son, who is 11 years old and has never spoken a single word his entire life, get frustrated that he cannot make us understand what he wants. His frustration level goes up because his stupid parents don't know his nonverbal signs – we call it the Garrett language. Day in and day out he encounters people that just don't speak his language; those nonverbal cues, pushes and pulls that he has created to communicate his wants and needs.

Inside our home, he usually gets his point across, or so we thought until the other night. He learned something new with one of his toys shortly before going to bed.  We usually let him take a toy to bed for 15-20 minutes before lights out. He laid there playing with this toy and becoming frustrated that he could not make it do the new trick. Unable to call for help or cry out, he only became more frustrated with himself and by the time we went back to his room to get the toy, he was in a full-blown meltdown, exhibiting self-injurious behaviors. It took hours to get him calmed down and asleep. I have lived in this world of autism for 20+ years and it blows my mind how even when I think a behavior is a thing of the past, it can pop out and show its ugly self

Thankfully with all the hard work of Garrett’s therapists at Comprehensive Speech And Therapy Center, Garrett is now working with an ACC device. Over the last several weeks we have had a huge breakthrough with him and he it is at the early stages of understanding the real power of language. As I watch him push the buttons and hear it talk, and he gets what he asked for, it brings tears to my eyes, the gigantic smile that he has on his face. 

As we go through our day taking for granted all the things that we can do and not realizing how our kids with autism struggle so hard to make attempts to master a small skill and maybe, if we are lucky, it won’t take them years to master it and fall farther behind in their development. It makes me realize how important it is that we, as parents go out and help educate the public and let them see a glimpse of what we go through as a family every day. Living with two children at opposite ends of the autism spectrum has been quite the challenging journey, one I will continue to share.

lewisautismstory@gmail.com

www.lewisautismstory.com

www.jasn-mi.org/ 

leif.borreson@gmail.com
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