Here I am back at the blog again. For some reason, after 3 years of near silence about my children and their diagnoses, I now feel the urge to share what Dan and I have learned with the hope that it helps someone, anyone, maybe even provide me the reminders I desperately need for patience and understanding. At the least, the writing provides me an outlet. Typically, I am a speaker, not a writer. Anyone who knows me knows I love to talk.
Sam and Amy are very verbal, too. (The apple didn’t fall far from the tree). They are also masters of perseverance, defined by Merriam-Webster as “a continuation of something (as repetition of a word) usually to an exceptional degree or beyond a desired point.” Yes, well beyond a desired point. At times, we cannot stop Amy from talking and repeating and repeating and repeating and … Hence, the need to run away.
Tonight, Sam and I had dinner at Ruby’s Diner. My kids love this place. The diner is brightly lit with the sticky, red leather booth seats. There’s a train that circles overhead and around the restaurant. They give kids model cardboard cars and trucks to build while waiting for the food. Right now they have 3 different trucks to offer. When the manager asked what color Sam wanted, he quickly answered, “The pink truck, please. Well, actually, I can take whatever is the most easily accessible.” Easily accessible? Yes, “easily accessible,” coming from the mouth of a first grade child. This exchange reminded me of the day I first learned about expressive language delays. And, I smiled, beaming with pride, thinking about how far Sam has come.
Developmentally speaking, Sam began talking within an age-appropriate time frame. I don’t remember exactly how old he was, but as he grew older, his vocabulary improved dramatically. When he told a story, he used BIG words. And, he used the words appropriately.
As we began the Autism Spectrum Disorder (ASD) and ADHD evaluation process and testing for Sam, we were quick to point out his phenomenal vocabulary and incredible ability to express himself. Trust me when I say, after filling out one document after another, being forced to write every flaw, learning gap and deficiency you see in your child, it’s heartbreaking. You don’t know if you are being an awful, critical parent or if you are finally coming to terms that your child needs help, but regardless, you want to shout from the roof top EVERY STRENGTH you believe he has.
Imagine our surprise when the speech pathologist told us Sam had speech delays. Whhhhhat? Come again? Did she have Sam confused with another child? Did she not speak with him? “I am seeing clear signs, and our testing suggests, that Sam has pragmatic expressive language delays.” Huh? Rather than provide a clinical definition, our speech pathologist demonstrated for us. She explained “I am going to initiate a conversation with Sam. Watch him struggle to come up with the words to continue the dialogue. I am going to ask him to describe some items. Notice his use of the terms ‘this, that, there, here’ and observe how often he points to items.”
Over the course of the next half hour, we watched Sam listen to her, but ignore her questions and redirect to the topics he wanted to discuss. He used “the terms” no less than 20 times and he struggled to come up with the most basic words such as book and toys. “I want that,” as he pointed to the book. When she offered him a choice, “Do you want the book or the toy?” His response “This.” And, pointed to the toy. He couldn’t process the names of these simple objects. When he became overly frustrated, he grunted. However, when given the opportunity to discuss what he wanted, the words, the big words even, naturally flowed from his mouth. She explained there may be an association with his behaviors and his inability to communicate properly. It was eye-opening for us. Speech therapy began that day for Sam and continues to this day.
Sam is doing well and I am so proud of how far he has come. Sure, he calls everyone “Dude” because he cannot remember names very well, but he is participating in conversations. He is completely unaware of his volume, even with our constant reminders, but I don’t hear well out of my one ear, so it doesn’t bother me as often as others. He is learning how to say things using the correct tone and inflections. He is stern and sounds angry at times, “For Pete’s Sake, Mom, where is my book?” “Sam, it’s right in front of you on the chair.” “Oh, yeah, right. Thanks, Mom,” he says pleasantly, unaware that he was yelling and sarcastic with me the moment before. He struggles with what is funny, although bless his heart, he loves to make up his own jokes. Some are certainly better than others.
“What do you call a boy in a tree? A tree-boy! That’s funny, right?” Ummm, not so much.
“What do you call a cat on a boat? A cat-tain. Get it, Mom?” And just like that, there is laughter and hope!