Monday, November 18, 2013

This is Autism (Christa and Jewell)

Written by Christa Staples (Jewell's Mommy), Drawing by Jewell

Last Monday, Autism Speaks used some choice words to tell the world what Autism is. They made Autism sound traumatic, hopeless, and scary. The words “national emergency” and “lost, helpless, burdensome children” were used. I want to let you know that Autism Speaks does not speak for my daughter. That is not at all how we see her.



She is not a burden, but a joy to be around. She is almost always smiling and her joy is contagious. Her happiness and excitement is so much that her whole being vibrates from it. She flaps. She bounces. She giggles and laughs.

She is creative, draws the best drawings, and makes up the most unique stories. She has the most amazing imagination. She loves music, and she sings and dances all day long. She is obsessed with Kirby and YouTube. And she is so incredibly smart.



Once I learned to try to see the world from her perspective and to let her guide me, things became easier. I learned how to play with her. I learned how to make sure she has understood something I have said. I learned how to slow down and enjoy the little things because that is what she does.

She has taught me patience. When she is being to hard on herself and gets frustrated, I can now calmly talk her through it. I stopped trying to rush her through everything, and instead let her set the pace. If she can't accomplish something in the traditional manner, we find another way.

This doesn't mean that it is always sunshine and rainbows for us. Every now and again we encounter a dark cloud and some rain, sometimes even some thunderstorms. Sure, we have to keep every external door in our house double-locked and alarmed so she doesn't wander off. We don't have the luxury of letting her go out and play without our supervision. We have to hear the same video/song over and over and over again. We spend our evenings at Occupational therapy, Speech therapy, and Music therapy. Sometimes her emotions are to big for the situation, and she can be pretty dramatic. She screams and cries, and she screams “She/He cried” or “Quiet” way to much for our liking.

But I don't blame Autism. I blame sensory issues. I blame her need to be perfect and her dislike of being wrong. I blame her impatience. I blame the world for wanting her to fit in with everyone else, instead of accepting her for who she is. I blame other people's lack of understanding or compassion. I blame myself for forgetting to give her that 5 minute warning before we transition to something else.



This is Jewell. And this is Autism. Different, not less.

6 comments:

  1. I love that you honed in on the specifics that make life hard and not the wiring of autism itself. My kids and I have a very tough time with sensory issues and trying to fit in and that is where problems arise. Like all the other posts on here this was beautiful and hopeful:)

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    1. Thank you! I didn't want to make it sound like it was all sunshine and rainbows, but I didn't want to make anyone think it was all doom and gloom either. People with Autism don't need pity. They should be recognized for all they overcome.

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  2. Christa you are a awesome mother to Jewel and Frankie keep up the great work. Jewel is a beautiful smart lil girl i read your Facebook post all the time. Keep getting your word out your doing a good job

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    1. Thank you Amanda! Being a parent is definitely the hardest job I've ever done yet.

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  3. Oh that last paragraph is beautiful. You are so aware of your girl. Thank you for writing this!

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