“Where is it?” I wondered as I flipped through some of my old posts.
I was looking for the post where I spoke of Catelyn’s problems playing on our street for my last post. Catelyn had many failed attempts at social play on the street while Declan’s version of street play involved running up and down the street trying to knock over decorative flags or kick over plants (and yes, he was totally the child on the beach whose sole purpose was to knock down every sand castle in sight). Anyway, playgrounds – areas of designated play fit our family better.
I couldn’t find the post, but in my review of old posts I found a lot that I still enjoyed, and their stories still ring true. I decided to repost this piece I found. The story is still relevant even if the events occurred three years ago. Riding the autism wave:
“I hate you! I hate you!” Declan yelled as loud as he could in the middle of the store.
I knew he didn’t hate me. He was using his angry words. He had been using his angry words for a few days.
The trip was an overall disaster. He brought 3 toys and threw them repeatedly. He pulled things off shelves. He stared at the lights and shook his head back and forth repeatedly. He clawed my hands holding the cart. He grit his teeth.
The following day, we decided to go out to eat as a family. The screaming ensued. His body was tensing in weird pretzel formations. He was grinding his teeth. He moved from his chair to under the table frequently, he knocked over drinks.
When Declan got home, he was still having a hard time. He ended up in time out and resorted to a behavior we have not seen in some time. He got on all fours and banged his head against the ground as hard as he could. Again, and again.
What was going on?
We have come so far; it is so hard to see these behaviors of autism. To have to handle these behaviors as frustrating and hurtful as they are. But it always makes me realize something else, too. How hard it must be on Declan to have to experience what he is experiencing.
His body will tense, his teeth will grind. His head will go back, his shoulders will go up, his eyes will squeeze shut. Sometimes it looks like someone is pinching him right between the shoulders. HARD. His head will shake back and forth. He will bite himself. He will hum.
There are times that things are going so well, I forget the possibility these behaviors will surface and take over. Declan is doing so well with all his supports and therapies. We have his trampoline, his sensory sock and his music always ready to help him calm down. We provide deep pressure to tensing muscles. Sometimes, Declan just runs and crashes into the couch when he feels the need.
And sometimes, no matter how hard we all try, these behaviors of autism will come take over for a bit.
I have felt like helping Declan with these behaviors is like riding a wave in the ocean. We ride the wave, high on its peak and are smiling, soaring through the water in success. The wave will stop and bring us down, sometimes crashing down. We take a moment and are pulled back a few steps while we wait for the next wave to surge. But then we are riding high again.
So, as we sit, and I block him from banging his head. Holding him tight, massaging his shoulders, singing quietly – frustrated and sad for all that he is going through, I trust that this is just but a moment. And we will be riding high on the wave again, in just a little bit.
Sending you hugs. The good times are great but you earn them with the harder times. It frustrates me that some people will see this behaviour purely in terms of their accepted world and won’t try to see it from the equally valid autism world. Really hope your team is smiling soon.
Thank you! Declan is a happy camper today. Bouncing on his trampoline making his happy sounds while listening to his YouTube 🙂 But when I saw this post I thought of all the times through the years that everything was going well, and then some of those negative symptoms or behaviors took hold and he was hurting. So tough to see, and you’re right, have to explain.
With lots of practice, we all become better at surfing the wave… us and our kiddos. Even the best surfer occasionally has a wipeout though.
And some days the surf is just choppy and finding a decent wave is near impossible, so we sit it out.
It’s good to remember how many bad days there were. I think it helps us appreciate the good ones more. Surfs up🏄♀️🏄♂️🤙🏄♂️🏄♀️🏄♂️
That’s true! I know there are a ton of things that Declan just gravitates to now that are helpful to him.
That’s what I thought too! When I read that post I thought, oh man! That was a tough time. And there have been little snippets of time that we were helping him though some of those negative symptoms and behaviors. But, in general, we are on the high a lot and if we go down again, it’s good for me to remember will be back up again. Love it! Surfs up!! 🙂
I always enjoy reading your posts so much, they help me to understand more about something I admit to not knowing much about. Thank you for sharing pieces of your life with us. Much love to you and Declan
Thank you so much!
As I read this, I am shaking my head and thinking how true this is. Tyson’s behaviors are similar; you never know when the moment or day will b hard, and sometimes no matter how much we try to prepare ourselves, its easy to forget when things are going well. Hugs my friend.
Thank you so much, Carlene! I know many times when I read about Tyson he reminds me so much of Declan. So glad you can relate. Thinking of you! Hugs!
I really enjoyed reading this. Such a great heading and way to explain what you guys are going through. Trampolining is so good too. I understand what you are saying that when everything is going great and then all of a sudden it comes crashing down. I am glad that you express these times too.
Thank you! Yes, sometimes it’s so easy to forget the little hiccups or regressions when things are going so well. And I like to remind myself that we will soar again – the regressions aren’t permanent. Thanks again!