Why GO, GROW, BE
Being told your perfect bundle of goodness will suffer from a lifelong, complex disease that few truly understand is devastating. The thing is, I was used to challenges, and in many ways, reveled in those moments. I’ve spent my whole life exceeding expectations and beating odds. I knew how to respond to bad news and I’ve always been able to overcome. But that was me and the thought of my sweet boy who was so full of joy, struggling through life, left me at a loss.
Max is the youngest of our two boys— six years apart. We had unsuccessfully tried to conceive years before and had just moved past our baby wishes only to find that I was pregnant with Max, what a surprise blessing! Max was a bright-eyed, joyful baby who was curious and playful. He was very loving and smart and spent as much time laughing and playing as he did quietly taking in the world all around him. He was my wonder baby.
Although Max did not speak often in those early years, he was very expressive and communicated with us in other ways that were typical for a toddler. We knew he was different from other children but that caused us little concern. It was when Max started preschool at the age of 3 that everything changed. He was attending the same school his brother had attended years before and was full of energy and wonder. As he settled into his new environment, his teacher expressed concern. His quirks that we believed made him unique and the fact that little language emerged during their interactions was now a basis for further testing.
We quickly came to learn that his bouncing bird dance and nervous hand biting, coupled with his comfort being alone, oblivious to all were signs of a condition—autism. Yes, I had heard of autism, but knew next to nothing about it. In fact, when we received the diagnosis, I honestly assumed we would simply sign up for whatever cured it and our Max would be fine.
Those next several months were a whirlwind of researching, reading everything I could get my hands on, debates with my husband about the sources of information and treatment options, searching for therapy providers and support groups—for Max and for us. All the while, we were running two businesses, raising another pre-adolescent boy, and stressing about all that we surely had forgotten to do or simply couldn’t do because of the rapid and dramatic changes that seemed to be taking over our lives.
We needed something before we imploded. That something turned out to be community.
We found and connected with this community—other families, grandparents, caregivers, and therapists who understood our struggles and where we were emotionally. We all shared a common desire to solve this mystery, find solutions, and celebrate the victories no matter how small. This community pointed us in the right direction, helped us learn to move through disappointments, and accepted our own shortcomings. As a result, we were able to regain clarity around what really matters in life. We found patience and peace even when we remained unsure.
Max, now nearly 10 years old, has continued to make strides regardless of our efforts, and in some respects because of them. He has friends, relationships, perspective, a voice and words to share thoughts, beliefs, demands and questions. But most often he just has a smile and for that I am grateful.
Go, Grow & Be is about community, and helping families overcome feelings of isolation by connecting with others who share the same joys and challenges.
I hope you will join us in our efforts by referring a trusted source or provider or by sharing your ideas about how we can better support families and individuals with special needs. We also hope you will attend an event, make a donation and spread the word.