I’m going to be a bragging Gabba and just say Raymond is brilliant!
Carly used to sing him ABCs as a lullaby, and he learned to write his letters by the time he was 2. At 3, he was reading fluently. Now, some people think we’re exaggerating and maybe he just knew sight words. No. We would hand the kid a menu, magazine, brochure, whatever, and he would read it. He needed help with some of the harder words, but the kid was good! We were worried about what he would do in kindergarten. How much of the day would he be expected to sit quietly and wait to be taught something he didn’t already know?
His favorite show was “Letters.” The rest of us know it as Wheel of Fortune. He would clap and cheer when the wheel spun, then go around the room, shake everyone’s hand and say ‘gratulations at the end of every round. Carly discovered a show called “Signing Time,” and soon Raymond using the signs he knew while he spoke. Once he learned how to change the language setting on Carly’s phone or his tablet, he was following directions in Spanish, French, German, we’re not even sure of all the languages he uses. Of course, the directions are the same regardless of the language, but it was still crazy the he would change the language and know it was saying the same thing.
He loves spelling so much, it’s all he would do on the soccer field. While the other kids were chasing the ball, he would be standing in the field, writing words in the air with his finger. Ball, sky, bird, grass…all the things he saw were words he could write. As far as soccer went, Raymond enjoyed the pre-game practice, and the team cheer – “1-2-3 PeeWee Pumpkins!” – but didn’t like being on the field to play. Carly and Joe spent the games trying to head off meltdowns, hoping he would take to it as he became familiar with the game. That didn’t happen.
As much as Raymond wasn’t crazy about soccer, he LOVES his family. Reta Jean is his best friend. Miss Riley isn’t much fun yet, but he likes to make her giggle and laugh. Joe recently signed him up for jiu jitsu, so the two of them get to roll around on the mats. His favorite family game to play, when he was younger, was going around the table and asking everybody, “What’s you favorite color (animal, food)?” If we answered incorrectly, he’d shake his head and give us the right answer. When the cousins come visit he enjoys playing with them and showing them around the farm. He likes his down time, though, so sometimes he likes to go to a quiet room and read or play with his tablet.
He likes cooking, art projects, playing outside, and feeding the pacas. He DOESN’T like the “hoosters.” We’ve tried to tell him most of the chickens are hens, and he really wants to be friends with them, but they scare him so badly, he can’t stand it.
He also loves movies and superheroes. I’m Batman, Papa is Iron Man, Reta Jean is AntMan, and Raymond is Captain America, Wolverine, or Hulk, depending on his mood. Papa calls Raymond Santa Claus, and they discuss where the reindeer are parked when he comes over. If we aren’t superheroes, we’re Minions. I especially like to be King Kevin. More often than not, when Raymond is having a conversation, his end of it is movie quotes. The rest of us, with Carly’s help, figure out which movie he’s on so we can be part of what’s going on in his head.
Not only is Raymond AMAZING, we recently learned he has autism. As he’s gotten older, some of his behavior patterns started raising little red flags. Carly saw it way before the rest of us. It was so hard for her because how do you know if your child is struggling with something, or if you just need to be a better parent? Even Raymond’s pediatrician said he just had “some anxiety,” but it was not really anything to worry about. When a 3 year old has a meltdown when they’re told it’s time to stop doing something they’re having fun with, it’s seen as maybe being a little bratty. But, when I finally took 4-year-old Raymond to Reta Jean’s dance class, and he was SO excited to get to go, but had a total meltdown as soon as we walked into the studio, that was more concerning.
None of us immediately thought of autism as we watched Raymond having a harder and harder time. He is very verbal and loves interacting with people. I think, as most of us understand autism, those two things alone would eliminate a diagnosis of autism. Here’s where the diagnosis came from: In hindsight, the accelerated reading skills could have been a sign, but who ever thinks, “My kid is too smart, there must be a problem.” We also learned about “scripting.” Children with autism often work from scripts. Playing “Letters,” asking questions he knows the answers to, and speaking in movie quotes are all forms of scripting. When you really start paying attention, Raymond will answer questions, let you know if he wants or needs anything, but really doesn’t have a spontaneous conversation. I mean, it’s cute when your grandson comes to your house and says, “Hi, Gabba! I’m so glad you’re here. Thank you for stopping by.” (Think about that one for a minute.) He can tell you anything about any of the superheroes, as is very typical in autism. He has his facts down and loves to share them with everyone. And then there’s the meltdowns and becoming totally overwhelmed when there is too much going on.
With Carly’s guidance we’ve all learned how to best help Raymond. It’s a whole thought-shift, understanding his behavior is caused by his autism, and is not him acting out deliberately. If he’s going to be doing something new, we make sure we tell him everything we possibly can about what’s going to happen. We’ll even practice a script with him, so he knows how he’s supposed to interact. We make sure we don’t switch activities without giving him a warning. Usually, we can tell him we’re going to do something different in 5 minutes and he does pretty well. When Raymond says, “I don’t feel well. It’s time to go home. I need to go home now,” we have learned he’s warning us a meltdown is highly likely. He’s had enough. By giving him a book or his tablet and letting him take a rest, away from everybody, a meltdown can often be avoided. Joe is great when it comes to meltdown duty. He can take Raymond into his room, sit down with him, and get him breathing and calm.
One show that has been a HUGE help is “Daniel Tiger’s Neighborhood.” It’s a cartoon, based on Mr. Rogers, and deals with all sorts of social situations. For a kid who depends on scripts, a script with the wisdom of Mr. Rogers is a really good thing. We’ve all learned phrases like, “That was fun, but now it’s done,” or “choose one more thing.” My personal favorite is, “When you’re angry and want to roar, take a deep breath and count to 4.”
I got permission from Carly before writing this because a diagnosis of autism isn’t one a lot of people are comfortable sharing. Because Raymond’s autism comes across as very different from what many people would recognize, we hope to help and educate others. Carly and Joe took Ray to school for evaluation before being able to get him in to see a behavioral specialist. We know he will need a very specialized program in school, and the teachers have told us they’re up to the task. The diagnosis will allow Raymond to learn how to do school, without getting in trouble for the occasional meltdown. It will also allow the school to learn how Raymond communicates, without assuming he’s being a stinker when he answers all questions with a quote. For reading, he will need to be in a 1st or even 2nd grade class. His math scores put him right at grade level.
Every professional who has met with Raymond has the highest praise for Carly, and so do we. Without any professional input, she taught Raymond how to self-regulate and control his anxiety. She made sure the rest of us understood what we could do to help Raymond navigate his world. She has been willing to learn, try new things, adapt, and pave the way for Raymond to be successful. We’ve all done our best to step up, but she has been the driving force.
We’re so excited to see what Raymond will accomplish. He’s such a sweet, smart, cool little kid. Autism is something all of us will need to learn more about, in order to assist and advocate for Raymond. As he gets older he’ll understand we’re all with him on his journey, and I have all the confidence in the world that Carly will keep us on the right path.