Our Journey

Eight years ago, after a series of evaluations by our local school district, our then three-year-old was diagnosed with autism spectrum disorder (ASD). We were provided with a 30-page report of the diagnosis that included numbers, charts, and future recommendations. I had inklings of what this meant but nothing really concrete. I remember feeling numb after reading through it all. Numb and alone. Feelings of anxiety, fear, and confusion followed. Despite my experience in the classroom, I felt grossly unprepared as we began to enter this new stage of life. At that moment, I felt helpless. However, I would soon learn about the power of community and trusting the process.

Daycare helped make sense of the diagnosis and gave us the opportunity to have Phillip around other kids his age. We were lucky to find just the right place for Phillip. A place where he was nurtured, but was also held accountable for his actions. There were times when it seemed like every day I was given a behavior report. Despite this, his teachers were a source of encouragement and support. The teaching staff worked with us and helped us find resources to support Phillip. One day, after a particularly discouraging report, I asked out of frustration, “What can I do to help him?” His teacher responded, “Love him. Just, surround him with love.”  It would be several years until I fully understood what that meant for my family. 

Phillip’s first therapy was music therapy with Miss Meghan. Their initial sessions began immediately as we crossed the threshold into her space. There were stations of colorful toys and instruments on the floor, and Phillip would often make a beeline toward familiar objects and begin to play on his own. Miss Meghan would gently yet firmly redirect his attention and pull him with her guitar and voice, into her intended activity.  I watched as she gently set the parameters of their structured music-making time. Music Therapy absolutely blew me away, especially in how it helped him become aware of people around him. I definitely shed a few tears of joy in those early sessions. I wasn’t prepared to see him progress so quickly! Funny thing, Phillip caught on that in addition to music making, Miss Meghan was teaching him social rules. Language was still developing so his behavior communicated his intentions. One time, Phillip refused to leave the car to attend music therapy. Miss Meghan gathered her teaching tools and met us at the car. That day Phillip had his appointment right there in the car. Miss Meghan always modeled a strong gentle approach. Strong because she never backed down in her attempts to connect with him, regardless of the barriers he put in place. 

These days our after-school therapy sessions have been replaced by activities such as karate and music lessons. I changed our approach because as Phillip grew older, he began expressing frustration with direct therapy services (OT, Speech, etc.). I decided to take a chance and try different activities that could still be considered therapy.  Phillip chose the activities and my husband and I became his official cheering squad as we watched him grow through the learning process. 

Reflecting on the past eight years of solid work with all the ups and downs, I wish I could go back and tell myself not to be afraid. I learned early on that fear was not a positive force in our lives. Building a community filled with positive clinicians, friends, and caregivers around Phillip replaced the feelings of being alone on this journey. We now have a confident, smart, and creative pre-teen that has no problem sharing his opinions on how his parents can be wrong sometimes and how we favor the dog over him. Autism is no longer scary to me. Of course, setbacks happen, but my husband and I understand that what he needs more than anything is positive, loving parents that are not afraid to support him, even when he needs to “try again”. 

Coramae Neely

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