It sounds odd to say that an autism diagnosis could be a good thing, but that’s exactly how one mother feels about it. For her family, that diagnosis she received at Caravel Autism Health was the end of one difficult chapter and the beginning of another that has transformed her young son’s life.
Tara is a mother of four who describes the day her son Sjouke was diagnosed with autism as “one of the best days of our life.” Because after a two-year journey, she finally had an answer to so many questions. Like, why isn’t he learning to talk? Why is he dragging his hands along the wall to guide his way everywhere he goes? Why does he lean on me all the time? Why does he scream bloody murder when he rides an elevator?
When Sjouke was two, she and her family began consulting with specialists. They started with their pediatrician. They met with the special education team at their local school district. They met and worked with all sorts of specialists – speech therapists, audiologists, physical therapists and occupational therapists and more. The specialists were supportive and helpful and were clearly devoted to her son, Tara explains, but there still wasn’t a comprehensive therapy plan. It wasn’t until the family switched pediatricians and received a referral to Caravel Autism Health that things really started to change for her little boy and their family.
Here at Caravel Autism Health, we were deeply moved when we read Tara’s touching story about how Sjouke’s life has changed since his diagnosis two years ago at the age of five. She has graciously allowed us to share her story with our readers this holiday season.
In Tara’s Words:
Our son Sjouke barely spoke until he was five years old.
Single words, sometimes two when everything was going well. Gibberish when he was super excited. Nothing at all when he was upset.
Instead I learned to speak a different language. I knew from the flutter of his eyelashes when he felt shy, from the way he stepped closer to me when he was anxious, from the way his grip on my hand would loosen when he gained confidence. I learned to speak Sjouke.
And so it was no surprise to me when we received his autism diagnosis from Dr. Mike, a clinical psychologist at Caravel Autism Health. In my heart, I knew. And I wasn’t scared; I was relieved. Although looking back, I wasn’t fully aware of how it would flip our lives upside down to start on the path of full therapy.
Jamming 25 hours a week of Applied Behavior Analysis therapy into our already-busy lives was no easy feat. Three, four, sometimes five women (yes, they’re all women!) are in and out of our home regularly. They’ve gone from visitors to members of the family, which basically means I no longer clean the house for them and we text message on the regular.
But also, they are my heroes. They changed the course of our lives. They learned Sjouke’s language, too. And in the course of that translation, they taught him how to speak. No, more than just to speak. How to communicate. How to engage. How to be a part of the world around him. They are my co-parents and my friends and my teachers. They are my teammates on Team Sjouke.
Two-word sentences aren’t a victory anymore because now, man, this kid can’t STOP talking. He’s making up for lost time. On a recent trip to Walgreen’s, he amused an entire line of people when he shared with them how he was feeling when I declined his request to buy a toy. “I’m a bit sad. I’m a bit mad. I’m a bit frustrated. I’m FEELING ALL THE FEELINGS.”
I always struggle to adequately express the pure joy that courses through you when a child who barely spoke until he was five reads a book to you. It’s not a feeling I could have understood before Sjouke came into my life. My older kids seemed mostly to soar through life with the greatest of ease. I’m proud of them, of course, but now realize that I took so much for granted. Imagine you’ve lived your entire life in sunny Los Angeles. It’s hard for you to even fathom winter in Chicago.
Raising a child with autism is much like living through a Midwest winter. Winter can be beautiful in its own way. The quiet magic of the first snowfall. The beauty of an ice-covered forest. The feeling when you are snuggled in beside a fire while a snowstorm rages outside. It can also be a lot of labor, shoveling the sidewalk and gearing up for the bitter cold. You make friendships in the work of it. You hug the stranger who plowed your driveway that one day you thought you’d never get out. And you realize when driving in winter that it’s not about how fast you get there. You learn to slow down on icy roads and just get through it.
But, wow, the spring. That day the warm returns and the sun peeks through and the whole neighborhood is outside soaking it all in. The whole world feels new. The whole world IS new, because all of a sudden what you thought wasn’t possible, is.
Sjouke brings the spring. He brings it over and over again.
So anyway, happy autism anniversary to us! Go Team Sjouke! And a special, completely inadequate thank you to the people at Caravel Autism Health. I only wish we had found you earlier. You have changed our lives.
