3 minute read
Shannon Griffiths: Current Westview Parent 2014-present
Alex’s journey is a bit different than his peers. At 34 weeks, an ultrasound picked up irregularities in his heart, indicators of a genetic disorder called Tuberous Sclerosis Complex. TSC causes tumors to grow in the body’s major organs and is the leading known genetic cause of epilepsy and autism, with almost half of all those affected on the spectrum. To say we were afraid is an understatement.
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Shannon Griffiths (continued)
Four short weeks later, Alex very smoothly entered the world. Our foremost questions were about his future. What would his quality of life be? Could he play with his brother? Go to school? Kick a soccer ball? Talk one day?
The answer was, “possibly,” along with a piece of advice: Alex’s quality of life was essentially up to us whether we chose to focus on what he can’t do or celebrate what he can do. Wise words that we keep close to our hearts.
For the next 18 months, Alex developed on target. Crawling, walking, getting into everything. We relaxed, and the worry subsided until our bubble was broken. The seizures appeared, and we were snapped back to reality. They were subtle at first but progressively became more intense, happening anytime and everywhere. It took months of trial and error to get things under control and stabilize him. In the meantime, the few words he learned were gone.
We started therapy right away. Speech. OT. PT. We all worked hard, but the reality began to sink in—the Big A. We had been mentally preparing for this, but it didn’t make things any easier or lessen the worry.
The hunt began for Alex’s place, where he would be safe, loved, challenged, and accepted while getting what he needed for his development and learning. We toured several different facilities, day programs, and full-time ABA. Our last stop was a place called The Westview School. We parked and walked in, and our lives changed.
We immediately felt that this was where Alex would be at home. It was a school, not a clinic, with teachers and staff who would push him but hold his hand along the way—a place where we wanted him to be and where he would like to be. We were so thrilled when he was accepted into the program. By the time Alex hit pre-K, he could still barely say a word, so his speech therapist had him using an iPad as a communication device. Alex didn’t need it for long because he finally found his voice. Once the words came, they never stopped, and a whole new world opened up.
Today Alex is eight and rocking First Grade. He is learning to read and write sentences. He loves math and earning his pennies to purchase trinkets on Friday afternoon. On Mom’s Day, I got to watch him type on the computer, which blew me away, and he did the parent-dreaded science fair project with a little help from mom and dad.
Most importantly, he has friends, kids he talks about in the car and likes to play with at recess and birthday parties. He takes karate at school, where they work as individuals or as sparring partners. They perform together during the Holiday Play, entertaining the audience with their talents and personalities. It’s truly amazing to watch and brings tears to your eyes.
There have been so many people at Westview who have worked to get Alex where he is today, a team effort that hasn’t stopped. It’s where people know Alex, appreciate him, and high-five him throughout his day. He jumps out of the car in the dropoff line each morning, happily giving everyone the daily traffic update. Alex loves his school, and we couldn’t imagine him anywhere else. At Westview, we found a group of professionals who truly understood us, not to mention the many parents who offered support and friendship. Having people walking the same mile with whom you can discuss and share experiences, tips, and tricks is truly invaluable. Westview is a place where you can get a hug on a rough day or a little dose of hope when it feels like there is none.
