Only One Thing You Need to Know

My Shaynanigans 3
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I wrote this almost a year ago. We had just found out about Finley being autistic. I don’t know that I would use the exact same words and phrasing when referring to autism now. At the time it felt separate from her somehow. I don’t see it that way anymore. While I don’t think she is defined by her autism, I do understand that it is her neurological filter. ASD isn’t episodic like depression, where one is depressed for a time and then not. I also have a far more objective and accepting view.

Autism just….is. When moments are hard, then autism is hard too. When things are fine, so is autism. It doesn’t hold any inherent quality in my mind. What matters to me most, and what this post is about, is that Finley’s struggles don’t dictate who she is. What defines my daughter is her ability to prevail in the face of adversity. 

My dear, sweet baby girl. What a rough few days. I want to scream at the top of my lungs, “Damn you autism, leave her alone tonight!” No one should have to struggle that hard to fall asleep. And I am so sorry. My mistakes made it worse. I had no idea that washing your sheets and blankets would be the new trigger. I didn’t know that the clean smell would take away your safety and comfort. And somehow I missed cutting a tag off of your shirt. Your huge sigh of relief said it all once I took it off. I hear you say that you need the striped pillow on the side of the bed, not the polka dot one. The sheet shouldn’t be there. And the pillow cases are all wrong. That the clean smell will keep you awake and you will never be able to sleep again. The changes and sensations are overwhelming you. They are too much. Yes, we can try all the other blankets in the closet to see if they smell right to you. No? They don’t work either? Ok. What about the sleeping bags we have? No? Ok. I’m proud of you for trying.

flowerScrew you autism for just a second please. Even if it isn’t right for me to be mad at you. I see that you keep trying to trip up my daughter. But I’d like to focus on how this time she is trying to use her words along with the kicking and screaming. Look at her work so hard to find a solution to the problem you handed her. She won’t be taken down by your ploy to make change impossible to endure. And neither will the fact that it took 3 hours to figure this out. My little girl has a lot of fight in her. She will always win. Sure, because things were slightly off, I had to hold her curled up tight on my lap while she cried herself into a frenzy. Yes, she stuttered and struggled to get the words out between sobs, all the while running around in circles with fists held tightly at her sides. But she found a way to tell me what was wrong. She overcame. She fought back and found one that smells right. Do you see that sweet face peacefully wrapped in my quilt?

What’s that little girl? My scrunched face looks mad? No, I am not mad at you love. Not one bit. My mind is focused on figuring this out. To help right a wrong I didn’t mean to make. My base instinct is to always save you. Protect you and fix it all. Then objectivity steps in. Reminding me to be patient because you are capable of finding a solution. And how else can you ever know that if I don’t give you the chance? So honey, mommy’s not angry. I am in awe of you. Your ability to work through this amazes me. I am blown away by your strength and perseverance. I don’t see someone struggling or misbehaving. I see success and progress. And when you need to tap out, I’m here. Always in your corner.

My sweet daughter, there is only one thing you need to know. You may have autism. But it will never have you.  

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Photo credit: Shayla Hearn

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About Jodi Murphy

I am the founder of Geek Club Books, autism storytelling through mobile apps for awareness, acceptance and understanding. My mission is to use the art of storytelling and technology to entertain and educate for the social good. I am a 'positive' autism advocate, mother of an awesome adult on the autism spectrum, lifestyle journalist, and marketing specialist.

Comments

  1. Jennifer says:

    Hi Shayla
    I just realized I hadn’t seen anything from you in awhile. Then I realized you hadnt ‘liked’ any of my photos in a while. Then I realized you weren’t on fb anymore. I hope everything is ok!
    Jennifer

    • Jennifer, Shayla’s ok…she’s just taking a break from social media. I’ll make sure that she sees this comment. – Jodi

    • Hey Jennifer – thank you so much for checking in 🙂 I thought a nice break from all the social hullabaloo was in order. Everything is going well – the usual crazy chaos. Hope all is well in your world.

      See you when I get back!

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