“The day in 2006 that I found out that I was pregnant, I was excited and nervous at the same time. I really wanted a girl, as I knew there would be the possibility for major genetic defects if I had a boy. You see, many of my relatives, including my own father had some form of Muscular Dystrophy. My pregnancy was mostly normal. However, at about 30 weeks, my OB’s office called me. ‘We need you to come in. Something has showed up in your blood work,’ they said. My heart dropped. A few days later the doctor came in and said, ‘Your labs show there is a possibility of Spina Bifida. We need to do a 4D ultrasound.’ Luckily, the ultrasound did not show any signs of Spina Bifida. However, this same day, I found out that I was having a boy.
On December 1st, 2006, my life changed forever. I went to our local hospital for a weekly stress test. The doctor was called after a few hours, and I was told to be prepared to be induced. My baby’s heart rate was unable to sustain itself and there was a possibility of an emergency C-Section. Later that day, I had to be rushed for an emergency C-Section. My beautiful boy, William, was born that night weighing in at 4 lbs. 11 oz. Yet the first time I held him, I knew something was off; I just couldn’t place it. He had difficulty feeding and was having stomach issues. I tried to tell the doctors and nurses that something was wrong, but no one would listen to me.
I fought with different local doctors to help try to figure out the cause of his problems. My precious baby boy did not hit any milestones during any of the key developmental stages. Finally, after 1.5 years, I found a doctor that listened to me. He was referred to Riley Hospital Children to see a Developmental Pediatrician in February 2008. At that first appointment, he was immediately sent over to Neurology because he had zero muscle tone or head control. Later that year in August, it was discovered he was aspirating, and he had his first surgery to place a G-Tube. A muscle biopsy was performed but unfortunately came back inconclusive.
At the age of 3, his neurologist began questioning whether he had autism. The biggest sign of this was the delayed developmental progress and his fixation on objects that were round. At the age of 5, he was officially diagnosed with autism and our journey began. However, for many years, he saw doctor after doctor to try to figure out what was causing his extensive medical issues. All of his doctors kept saying, ‘He’s a medical enigma. We’ve never seen a case like him before.’
Then, in December 2018, our lives changed forever. William became gravely ill. I had called every doctor at Riley Hospital begging for him to be seen. Only his GI specialist had an opening. We rushed up to IU North Hospital but was told we would have to wait for a bed to be available at the main Riley Hospital which could be 1-2 days. I knew he could not wait that long. We went back home that afternoon. The next day, after school let out, I could not tolerate it any longer. I scooped up William, loaded him up and drove two and a half hours to Riley Hospital prepared to sit in the Emergency Room until a bed opened. When I pulled into the parking lot, the nursed called and said a bed was open.
William was rushed to a bed, an IV was started, and he was placed on oxygen. Not long after, doctors from every department came rushing in to see us. It was then we were introduced to a Geneticist who said, ‘William’s Ammonia levels were dangerously high due to the amount of Depakote he was on.’ They also wanted to do some genetic testing. We spent the entire week of Christmas 2018 at the hospital. After six grueling months of waiting, the Genetic Counselor called. William has two extremely rare X Chromosome mutations that are so rare research is still being done to find others who have the STARD9 and SLC9A7 mutations. As William grew, so did his needs and wants. His feeding tube is now permanent.
Fast forward to now. The one dream he has had since about 4th grade has been to be in a marching band so he could march in our local parades throughout the year. In 7th grade, when he entered Junior High, his band director, teacher, and school nurse made sure that his band dreams came true. Even though he was the size of an 8-year-old with limited mobility, he was proudly fitted his own triangle that had a special grip at the top. His teacher, the amazing Ms. Inman, would sit with him at the 7th and 8th grade concerts and tap him on the shoulder to let him know it was his time to play.
This year, William started his freshman year of High School. He was finally old enough to be in the marching band. His new band director, Mr. Burris, was completely new to the area. Him and his family had just moved from Michigan. Sadly, Ms. Inman moved on to a new school, but we still had his amazing school nurse Jo. Mr. Burris make sure William’s needs would be properly met in and out of class, and everyone welcomed him with open arms. Jo fitted him with his official Golden Pride uniform that is black and gold.
At rehearsals, the kids in percussion are ‘his crew.’ They answer the millions of questions he has and let him play their instruments. However, the entire band and everyone in our tiny Washington community has opened their arms and hearts to him. On September 3rd, 2021, they had their first halftime performance at the football game. William was anxious and wanted something to wear so that he could be a part of the crew. Mr. Burris quickly went into action. He retrieved a drum harness and an old PVC pipe and made him his own drum to carry. The man is a talented genius. I had a happy child the entire night who gleamed from ear to ear as his bandmates bragged on him all night as to how well he was doing.
Our journey has been long and difficult, but it has been one that has made an entire community come together over a special little boy. Autism or any disability does not define who a person is. It is simply a different way of learning. A different view of the world. The world is such a huge place to explore with so many uncertainties through the eyes of an Autistic person.
To other parents and caregivers who are new to this, do not give up. Keep pushing. Keep that momentum going. In the end, it is worth every tear, smile, hug, and struggle. Anything is possible when you have the perfect support group behind you.
His teachers pushed to help make him as included as possible in every dream he’s had. In a world where, you can be anything, always, always, always be kind. Inclusivity for a differently abled person is having an open heart and mind that makes them part of a greater whole. It is making them part of a family that they need to succeed.”
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