autism

Approach.

I went on a field trip with Casey’s entire fourth grade today. To save money, the school has parents drive the kids. I had three extra kids with me who engaged with me and each other the entire drive. The fourth, my son, scripted in the back seat and refused to engage with anyone else in the car but me. The kids tried. They really did. He was somewhere else. I explained to the kids what he was doing and how cool it is that Casey can memorize things verbatim so quickly.  They thought it was cool, too.  My heart ached a little as we continued to talk about everything else, with Casey’s quiet scripting filled the spaces in between.

We got to the farm and went about doing scavenger hunts, talking about animals and nature, and playing games. Casey clung to me the entire time. When kids tried to engage him, he didn’t respond, even though he’s fully able. When no one picked him to be their partner time and time again, my heart broke.  My frustration boiled up as teachers repeatedly tried to get him to make eye contact, and he would  not.  All of this time, I watched as the other adults chaperoning the trip talked and laughed with each other. My opportunity to make friends was being lost to having to be no more than five feet away from my son. My soul felt as though it was taking a beating over and over and over again.

With all of this building inside of me we went to do an egg relay. The rules were simple: carry an egg on a spoon to the other half of your team and hand it off. If your team broke two eggs, you would lose. The first one to get through all of the people on their team won. The teacher counted off numbers and one kid quickly turned a little red in the face as he said, “I don’t want to be on Casey’s team! There’s no way we’ll win. He’ll get all crazy and drop the eggs even before we get a turn. We’re going to lose.”  I had to swallow a couple of times so I didn’t yell. Firm but calmly, I said, “That’s not very nice to say. How do you know that he’ll drop it? Give him a chance.”  I was thinking, “You’re a jerk, kid. The minute I get a chance, I’m going to trip you.”  We assembled the kids in their lines where I could see that the jerk kid was on the verge of tears. It only made me more mad. I dug what is left of my fingernails into my palms. A kid who had missed the instructions asked us what we were supposed to do. A couple of the kids piped up, and a thought came to me. I asked the jerk, “So, what’s the secret to this game? How do you win?” The kid’s eyes lit up as he explained to all of us how if you go slow rather than trying to run, you’ll win because you won’t drop the egg and have to go back. He said, “Casey, did you hear that? It’s easy. Let me show you.”

The kid really wanted to win and was justifiably worried that Casey was going to get all crazy. Casey does get all crazy. While what the kid had said wasn’t nice, it also wasn’t wrong.   My anger towards him didn’t help Casey at all.  In fact, had I unleashed on the kid, it would have only harmed any hope of a relationship with Casey. I would have been yelling at the kid for me. Not for Casey. Casey didn’t care. The key was to help the kid see that there was a better approach.  In it, I saw that there was a better approach to what had held me on the verge of tears most of the day.

On our way home from school, Casey leaned back and sighed, “This was the best day ever! I love you, Mom!” …Wait, what?  It was? The entire time I thought Casey had just been trying to make it through. Trying to deal with the absolute sensory assault a farm full of fourth graders can be. Clinging to me because he was feeling the rejection of the other kids who had tired of trying to engage him.  He didn’t look like he was enjoying it the way I had looked when I was feigning happiness throughout the day. He just was happy.  The things that had chipped away at my insides were about me. My pain. He didn’t care to be with the kids. He was excited to just be with me. The entire time while I was worrying about how not socially-appropriate it was for him to want to hold my hand and hug me the entire time, he was just showing me how his insides were feeling. He was just being himself.

Casey doesn’t act like other kids. It makes me sad that he has such a hard time making friends. Most of the time though, it doesn’t bother Casey at all. He doesn’t need friends like I think he should. His self esteem and happiness isn’t wrapped up in what others think. His best day was one that was really hard for me. I was projecting on him what I was feeling, and failed to truly understand that he doesn’t think the way I do. I was approaching Casey’s autism through my own lens, and not seeing the world as he does. He’s made up from different stuff.  Not better. Not worse. Just different. I complicate things that don’t need complication. My approach has been off.

It doesn’t mean that I’m not allowed to feel emotions of all kinds in relation to his autism. That is my reality.  I do need to learn not to complicate things that don’t need to be complicated in his world. There are social skills that matter and that he needs to learn to the best of his ability. Being able to engage with other kids is one of those things, maintaining eye contact is not. But all of it needs to be approached in a way that benefits him, and doesn’t just make me feel better. My feelings, my reality, is mine only.  His reality is his. He’s happy most of the time, and I don’t need to complicate that with things that will only frustrate him in the end.

I’m really pontificating here, aren’t I? I have these resolutions and no real way of getting there. I don’t know how to not feel sad when I see him rejected by his peers. I don’t know how to not be angry when kids are assholes to him, even if he doesn’t understand it. And I don’t know how to approach this in a way that works for him, because it seems like just when I have a handle on his autism, I’m opening the wrong damn door.  I need to stop trying to rewrite the script for our lives that I should have just thrown the hell away when he was diagnosed.  I don’t know how.

I need to let Casey lead a little. I need to observe instead of worry. Go with him to where he wants to go and just let him be who he wants to be. While we were counting the different types of dahlias, Casey popped out of the bushes like this (recreated) and said, “Look! I’m a flower!”

Approach to autismYou want to be a flower Casey? You can be a flower.

 

17 thoughts on “Approach.

  1. Thank you for the post. I totally understand. My son Cam is 8 and scripts a lot. He also sings and dances. Cam especially loves The Wiggles. So we can be shopping and he will break out in song at the top of his lungs. But he is extremely happy! He doesn’t always engage children but is more happy to sing his own song. Different from others yes but again he is happy!

  2. Thank you!!!! I am crying! I am crying bc this is so relatable! Every day I unleash on kids for treating Liam wrong. You’re so right bc half the time he cares and the other half he is oblivious… When they ditch him one day and want to play the next I tell him no, they aren’t nice to play with. But in the end, Liam suffers bc he just wants to play. He doesn’t care how or with who. He just wants to be a kid. Thanks for this post. It meant a lot to me!

  3. My heart ached for you and I could feel the lump in my throat grow as I read and pushed back my own tears! For every place that you wrote “Casey” I could have replaced my own son’s name.

    Thank you for sharing 🙂

  4. Thank you thank you thank you! I am a teacher for preschoolers with autism, and I am constantly struggling to find the balance between what I’m “supposed” to be teaching them vs. what would be most meaningful to them…and some days, I just let them take the lead. So what if all my lesson plans for the day get thrown out the window if they feel listened to and loved?

    Great reminders.

  5. Wow. What a day. My Drew scripts a lot too. And he doesn’t care what other kids say. He doesn’t see the stares. He is just a happy boy. 98% of the time. Those situations hurt me way more than him.

  6. I love this. I love how you told us what you wanted to do to that kid, I find myself feeling like tripping people too. Although my reality is just starting Highschool. I got mad at someone after school today and the only thing I could think of to say was “that’s a poop thing you did, so and so.” Putting anger into words is hard. Anyways, love this so hard.

  7. I can relate to this even as an adult… for me this kind of thing happens when I invited to go to a party or go out to some sort of bar or something (I don’t really have many friends, so usually it would be my brother or somebody inviting me) I will often be seen just sitting quietly somewhere, not dancing and not making efforts to mingle and maybe not even drinking. Then the people will try to get me to do these things, and eventually they may even say they shouldn’t have brought me because I am not having fun… but I AM having fun, just watching everyone, and listening to music, and even talking to a few people (usually outside since when I’m inside noisy places I have no idea what anyone is saying!) Sometimes I don’t have fun in typical ways, and sometimes I don’t look like I’m having fun, but I am fine!

  8. Thank you for this. My son is highly sensitive and I often find myself in situations like this. He’s perfectly content, but I pick up on the rejection from his peers and then project. “My feelings, my reality, is mine only. His reality is his.” I need to try keeping this in mind.

  9. Wow…I’ve been reading you for a long time and don’t think I’ve ever commented but something about this just struck home and tears are rolling down my face. Thank you – I needed this too. Let him lead. He is happy – it’s not about me.I think you’re a very real and wonderful mom.

  10. Love this. I have no autistic kids,but this really hit home. This story is so relevant to so many types of kids and moms. Thanks.

  11. Yep. Been there, over and over again. Learning this lesson comes in small pieces, and some days I get it and some days my needs overshadow his and I forget. It is hard to get myself and my expectations and disappointment and worry and fears out of the way and truly see an experience through my son’s eyes. It is fantastic that Casey can express to you that he enjoyed the day. I am still guessing about that with my kiddo. Thanks for the reminder that his behaviors and ability in the moment don’t always (or really, rarely) reflect what he may be feeling on the inside. Damn, this parenting thing is tough, huh?

    But what I really want to know is, did the jerk drop his egg?

  12. I love Casey. I love how he always makes ME feel. If ever I have felt genuinely loved by a nephew, it’s been from him. I love how he loved to jump in bed with me every morning, and how he cried when we left. It would break my heart to see kids not be nice to him. But I’m glad to hear that, at least for that day, it didn’t phase him. I’m glad he can find beauty in his love for his mom and in the flowers. I wish we lived closer. We would have a huge egg race in the backyard and I’d beg him to be my partner.

  13. Beautiful & well said. How do we live it? Perfect way to engage the concerned, competitive kid! We need those approaches with teachers & administrators.

    Some great revelations there; likely others have had them. Hanging out with older families is good and likely leading you to these changing perspectives earlier than say if you hadn’t attended the field trip.

    Thanks for sharing!!

  14. Forgive me if I’ve told this story before…
    Sometime shortly after my son was diagnosed with PDD-NOS, my husband & I went together with him to his parent-child Little Gym class. I usually took him myself & at that time, my husband hadn’t been to one (ironically, our job positions changed & we switched roles, but whatevs).
    It was a Saturday morning class. We usually went on a weekday morning, with a very small class. The Saturday class was BIG. Different teachers. Loud. A bit chaotic. My son did not want to do circle activities. He didn’t want to try any of the one-on-one stuff with the teachers. He basically wanted to hang out in one small section of the gym & chill. I kept trying & trying to get him to follow along like all the other 2 & 3 year olds. I was short-tempered & had to leave the room twice in tears. My husband was calm & collected, reminding me that our son was having fun & that’s what mattered. And this is the way I felt for the vast majority of the time we attended these classes, but that day, it was too much. Every now & then, it just creeps up, that awful feeling – and it’s just in our own heads – our child is fine, happy. It’s just a matter of getting past those moments & if you’re lucky, your kid will show you how happy they really are – or pretend to be a flower. Whatever works.

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