Autism is Hard

He doesn’t sleep. He comes in at all hours of the night and tries to get in bed with us. When Lance has been banished to the couch because of his snoring, Casey sneaks in his spot. He’s like a hermit crab. But then he doesn’t go back to sleep. He’ll just lay there, his face right up to mine and when I open my eyes because I can feel him staring at me, he says, “Hey Mom, how’s it goin’?”. I answer, “good Casey, how’s it going with you?” but he doesn’t answer. He doesn’t understand. Though his verbal skills are right up there with kids his age, his receptive language skills are still at about a 3 year old level.

I hate when I write about the sucky part of autism, I feel like I should in stead be talking about how grateful I am for the strides he’s made, for the miracles that happen for all of the good. There is so much good. But right now, I’m sad.

I try not to let myself think about how things could have been. The thought works it’s way in sometimes though. Like at Casey and Carter’s last basketball game where Casey all of the sudden, and for reasons I don’t know, just freaked out. We spent the rest of the game in the car. I don’t know why it hit me so hard then, but I cried until the game was over when Lance and Carter got in the car. What would it be like to have them play on the same team? Really play? Would Casey love Star Wars as much as Carter does? Who would he be?

These questions are silly, and aren’t good for much more than sadness. What I have is an amazing little autistic boy who’s taught me, his dad and his brothers how to treat people. He’s taught us patience. He’s taught me especially to be more sensitive. Since his diagnosis the word “retard” in any form makes my skin crawl. The dumb “short bus” comments we made beforehand seem so terrible to me now. Putting him on that bus when he turned three was so hard. I cried every day after he got on the bus for weeks. There are some days where it’s still so hard. I send Carter to the regular bus with his friends and Casey and I wait for the special bus to come. I would give anything to just be able to have Casey and Carter walk to the same bus stop, get on the same bus, go to the same school, play on the same playground- all the things I thought about when we had them less than 13 months apart.

Casey isn’t as hard as he used to be. He used to cry for several hours every day. He had tantrums where he threw chairs, shoes, punched and kicked. He doesn’t do that a whole lot any more. He’s pretty happy all of the time, and he’s so loving. I thought as things got easier with him, it’d be easier on me. It’s not. The Mommy guilt every mom harbors is a whole different beast when you have a child with special needs. I never feel like I’m doing enough for him. I feel guilty about the extra attention that is taken away from his brothers because Casey needs it. Even as I write this, and it’s cathartic for me, I feel guilty that I’m putting these words down.

Casey is one of the four (almost five) best things that has ever happened to me. I would not and could not love him more if he didn’t have autism. I love him so much. I love that when I tell him I love him, he never says “I love you” back- he simply says “so much.” I’m grateful for the blessing he is in my life, even when his autism gets a little bigger than I can handle.

This isn’t a wall I usually let down. I used to think that parents of children with special needs had some sort of super power. That the rules of frustration, anger and sadness didn’t really apply. It’s not true. I try to make it seem like I take it all in stride, like it’s always okay, but there are times when it’s just not. So there you have it. Autism is hard.

13 thoughts on “Autism is Hard

  1. I believe you. And though you may not have super powers, you do have a direct line to Someone who always understands and who has suffered for our sorrows as well as our sins. (And your husband holds the one true super power on earth!)

  2. What great, honest insight into your life. My favorite thing is that Casey says "so much" when you tell him you love him. I think that says it all about the relationship you have with him and the wonderful job you're doing as his mommma. Dang that mother's guilt!

  3. Okay – you made me cry. I obviously don't know exactly how you feel, but I get it to some extent! Don't feel guilty for writing it because no matter how much we love them, their conditions are still hard and we will always wish that there was something more we could have done, or could still do to just "fix" it all! Hang in there! We all love him, and you!

  4. I love you more than words, sis. Sometimes writing heals. I completely understand that. I have been feeling the same way, in other circumstances lately myself. Keep writing….it's beautiful.Miss your guts.

  5. I love you Lexi, your post was so beautiful, very real and so powerful. Thank you for sharing a piece of your heart with us. Don't worry about writing it down, honesty can be very healing for the soul. I love you and I'm giving you a big hug right now.

  6. Lexi you don't know me but I'm Natalie's sister (Logan's fiance). Man you rock!!!! I read this and thought so true. I try to live in the real world too and somethings are hard. Our Bella has Downs and there are days like this but more and more I find the the "different" normal has taught me the most. She has reminded me everyday that our bodies are just a vehicle to get to the real stuff. Everything is a little harder for them and for us but what a reward. I can tell you are an awesome mom! Thanks for sharing.

  7. you're allowed to be human. promise. it makes the rest of us love you more:).you have all taught me to be more careful about what i say. every time one of those hateful words pop out of my mouth, my first thought is of casey's sweet face. and i kick myself.i don't understand. i hope i never do. but i hurt for you lots of times. i'm so so sorry. i know there's good, but the bad is hard. does it help if i tell you i want to be just like you when i grow up and get over myself???

  8. Oh Lexi, so well said.Only you knows your path, but we all know your heart. I just love you so much! Your swears, your mommyness, your honesty. We all bow down to you.

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