Our journey with Autism
When Brandon was born on August 15, 2007, he was perfect. He smiled and cooed, and our experience was everything we dreamed about and more. Our doctor raised Brandon up in the air and said, “You all have witnessed a miracle.” Brandon was--and still is--our miracle.
Every parent knows the challenges of having a newborn—they can’t tell you what’s wrong, so you’re left to follow the clues, you learn from your baby what to look for so that you know everything is okay. In the beginning, the needs are simple—feed, hold, change, bathe, and sleep, repeat. The program is pretty much the same except for when you need an expert—those seasoned professionals who have seen it all and can help you figure out the best solution for whatever ails your child. If you don’t know, than at least you know where to go to find the answers.
Eventually, everything falls into place—you get to know your child, and he or she gets to know you—they can relax because they understand you will be there for them, they study your movements, your routine, so that when you leave the room, they know you will be back. Their brain is built to process the external world, and to tell the body how it should react. With Autism, that process doesn’t work in quite the same way, and the answers are not so easy to find.
Your Baby Is Sick
Brandon was 4 months old when we discovered what we thought was, wasn’t. Diagnosed with a
Lymph/Vascular malformation, Brandon became sick with a staph infection, and at less than six months old, he received radiation treatments to reduce a tumor that had developed. In addition, Brandon could no longer eat without choking, vomited frequently, and had gastrointestinal issues. And so began our real journey to help Brandon.
Back On Track
In spite of Brandon’s major health issues, Brandon was still able to meet all of the expected milestones—rolling, crawling, walking, smiling, waving, pointing—Brandon was on track and we were okay. But before his second birthday rolled around, everything changed. In what seemed like a blink of an eye, Brandon started to show signs of Autism, and that’s when the real journey began.
Your Child Has Autism
July 20, 2009 was the date Brandon was officially given the diagnosis of Autism—and he wasn’t yet 2 years old. The first signs came in the form of sleep pattern disruption. Brandon had never slept more than 4 hours straight, but now he was barely able to sleep for 2 hours without waking up and screaming uncontrollably. At 15 months he started banging his head. At 16 months, he stopped saying “Mom.”
What We Know
Autism isn’t Brandon’s whole story. As Brandon got older, he developed GERD, asthma, hypotonia, and was later diagnosed with Epilepsy and PFAPPA. By the time his second birthday rolled around, Brandon had been sedated more than 20 times for testing, which has compounded his Autism. In fact, Brandon has gone through so much medically that his brain has a hard time switching out of survival mode—for Brandon’s Autistic Brain, the little things aren’t so little, for him, everyday events can be very scary. Imagine living in a world where you are in a constant state of panic, and you don’t have anyone to talk to who really understands, then imagine that you are small child—it’s like living in a bubble, where you can see but you can’t connect. Brandon’s Story is a story about how to get inside that bubble, and once inside, how to help Brandon and many other children just like him tell us how to help. It has been our experience that if we take the time to listen, Brandon will tell us how to help him.