autism

The Stars.

Autism can be overwhelming in the most amazing ways. It’s not always terrible, it’s not always amazing and sometimes even, it’s both all at once. A night sky full of stars.

Last night Casey came home to find that Abby had accidentally erased the Angry Birds Star Wars ap off of our Ipad, losing all of information saved there. Every level he had passed had been lost along with every award he’d received. He freaked out and I didn’t blame him. Lance and I took turns trying to calm him, but really, when it gets to that point, we are only there to keep him safe. We don’t stop him from screaming and from letting the emotions out. We do try to help talk him back, to empathize with the loss and anger he was feeling, and to tell him we’re sorry. These storms never take a predictable path. I never know what will work to help him find peace. Yesterday it went from him hugging me tight and shaking as he cried to him screaming and biting the pillow and saying over and over again, “I just want to have control over all of the babies!”

Forty-five minutes into it,  Lance came in, a feverish Abby in his arms. As he went to lay her next to Casey in bed with us, I protested. “Not a good plan, Lance, he’s really upset with her.” Lance, without saying anything just knowingly smiled and put Abby down on the bed.  Abby, snotty and sick, gently cuddled up next to Casey, resting her head on his shoulder. Within a minute, the anger that had filled the room was gone, within five, my two beautiful children were asleep, cuddled close together and breathing in time.

….

This morning was the mess of madness that accompanies getting my kids out the door to the bus. I had made the mistake of getting in the shower before I got the kids out the door and it threw off my groove. The kids were screaming by the time I was out so I threw on some pajama bottoms and a top as fast as I could and got back to the business of getting my kids out the door.  As Casey ran out the door, Peyton yelled, “Where’s your backpack, dude?” I turned around to find the entire contents of Casey’s backpack on the floor…but no backpack. I had JUST packed that thing! I ran through the whole house and could not find it. Finally, I shoved his notebooks and folder into another backpack and sent him out the door.

Yeah, big mistake. Casey took to throwing the backpack up against trees and slamming it over and over on the ground in a fit of “This isn’t my backpack, this isn’t my routine, this isn’t how I had planned this day to go!” I yelled at him from the door to come back, that we’d fix it. Instead, he took off for the bus. I continued to yell as I ran out the door after him. I ran up the street in my pajamas; shoeless, braless, my hair in a half dried mess, begging him to come back. I ran past my neighbors, out with their dogs, or sitting in their cars at the bus stop and straight onto the bus. The sweet bus driver was doing his best to calm Casey down. As I walked up the stairs the first thing I noticed, and it’s an image I will never forget, is the scared look on the faces of the children as they watched Casey scream and yell. They were afraid of him.

Except one.

Our sweet little neighbor, who is in Casey’s class. Who GETS Casey and loves him for him. While the other kids stared in fear, she sat next to him and tried to calm him. My heart almost fell out of my chest with love for that little girl. Casey would not be calmed, so I got him off the bus, dragged him past the neighbors as they nodded at me in silent support, dragged him down the road and back into our home. I was relieved to find Abby waiting for us at the door, her pajamas half taken off and her hair a crusty snotty mess.

Usually, if Casey doesn’t get on the bus, his routine is too upset and he can’t make it through the school day. I still wanted to try, wanted to hope that his day would not be lost to this upset. I grabbed Casey a can of Diet Dr. Pepper to sip on (it calms him) while I got ready to take him to school.  I found his backpack on the floor of my bathroom (not sure why he took it up there…) and reloaded it.

We got to school and I could tell Casey was off. He was still battling the rage he had felt minutes before.  His breath was still a little shaky from the sobs. Abby in tow, I walked with him slowly up to his school, where his amazing principal met us. She’s out there every morning to greet the children. As we came up, she knew immediately things were not good. She knows that Casey has to ride the bus. I hugged Casey and said, “Are you going to have a great day today?” He did not answer. The principal did not miss a beat, she THREW her arms around Casey and said, “I am going to have THE BEST DAY because you’re here Casey! Let me walk you to class.” And with aAutism Stars sly smile, Casey took her hand and they walked away.

Autism can make the world seem so dark at times. It’s in those times, though, that the stars shine their brightest. The shining moments where anger melts away because of the sweetness of a 2 year old, where a friend is not afraid to be TRUE friend even when it’s hard, and where a principal takes the opportunity to change a boys day completely with one simple sentence.

They are the stars.

 

39 thoughts on “The Stars.

    1. I forget to alert people for the need of tissues. Mostly because I’m kind of a robot and don’t cry a whole lot. And when I do, I just use my sleeve. It’s covered with Abby’s snot anyways…

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    1. I cried as I left the parking lot, and I’m not a crier. Or, at least, I’d like to think I’m not. She’s sooooo good. She eats her own lunch with the kids. She’s always with them. I could not love her more.

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  1. Crying at my desk again. Happy tears, I get it tears, thank goodness for the kids who aren’t afraid to reach out tears.

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  2. Wow. Tearing up before I am even out of bed. Gotta be a record for me. Your words today gave me hope. Hope that Andrew will learn to love James and not just tolerate him. Hope that my boys will make friends as well as change others for the better.

    And a big sigh of relief knowing I am not the only one who has run down the street braless…. 🙂

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  3. Oh my dear, you’ve made me cry. I used to work with a little boy who was autistic, and I can picture everything you’ve written, and understand Casey’s actions so well. Thank you so much for sharing this! It brought back so many memories of Patrick and my amazing time being with him every day. I miss my Patrick, quirks and all, and find it hard to remember that now he has grown into a man. Love to you and your family! s

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  4. Of all the tears your blog has ever made me cry, this was the worst. The ugliest of ugly cries. And yet, this all makes me feel hopeful and happy as well.

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  5. OMG! You gave him Diet Dr Pepper?! What kind of parent are you?! I’M SOOOOO JOKING! I had to do SOMETHING to stop the tears! This was a beautiful piece. As always, you hit the nail right on the head. I ❤ you. I ❤ your kids.

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  6. That is too, too sweet! That’s like the nurse at the doctor’s office who watched Skeletor for me so I could go pee in a cup. For some reason, he refused to come in with me, even though this never bothers him at home.

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  7. Today my daughter ripped out her hair for the last time. I had enough. I took her down to the car and drove her to the salon. I told the ladies we needed it as short as possible. She looks a lot like a little boy now and I don’t care. I felt relived as I finally accepted that this was the only way to stop her from hurting herself like that.

    Its hard and I don’t really think there was a shining moment, but thank you for not letting me feel alone in it.

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    1. We ALL have those days, too. Where there aren’t any shining moments and it just is painful. I’m so so sorry that you had one of those days. But you’re doing the right thing. Keep on keeping on and know that no one will judge you here.

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  8. I am crying so hard right now. You children are all amazing- and have such loving, patient parents.
    I hope Abby is feeling better and I know Casey had a good day- what a great principal you have at your school!
    I cannot wait for LTYM tomorrow ❤

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  9. Oh Lexi thanks for this one. Crying as I sit here reading blogs when I should be doing my own homework..the diet Dr.Pepper is so interesting,Cullen also calms when he steals my husband’s diet Pepsi(you may have never heard of Pepsi as we Massholes(you are in Rhode Island,close enough) only drink Coke..anyway thank you,for assuring me that it’s not just my house that can be in complete chaos at times

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    1. My friend Alysia told me about the whole caffeine thing. It’s because it calms Casey’s ADHD. It helps so much. I wish I could force him to drink it every morning without serious ramifications.

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  10. Just beautiful! I love the image of Casey and Abby sleeping and breathing in unison all cuddled up. So refreshing to see the stars in this sometimes dark world Autism can put us in.

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  11. We’ve had some dark days here lately my friend. And had a similar “star” moment with our OT on Thursday. Sometimes this deal is so difficult, which ironically seems to make the really great days that much sweeter. Xoxo

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    1. It really does make those days sweeter. I wanted to draw the comparison with not being able to see the stars without it being dark, but that was borderline TOO cheesy for me.

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  12. I love how the principal handled that! At a lot of schools, a principal or teacher would take one look at a child who looks like he’s already having a rough morning, and start reminding him of all the possible consequences if he starts misbehaving. 😦 It sounds like Casey has a great school!

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  13. Wow, you are amazing! I just saw Jamie’s link on fb and decided to click it and I’m so glad I did. You are strong and a motivation to me as a mom. Thank you for your loving story!

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