This morning I sat in my sun room waiting for my boys to wake up and for the momentum of the day to carry me away. I heard the birds begging for my attention but my mind was busy thinking about Corbin’s first day with his new teacher.
Corbin is ten-years-old, diagnosed on the autism spectrum and he is nonspeaking, but uses a speech app, gestures and noises to communicate his wants and needs throughout the day.
For those of us who know him well, there are many days where we almost forget how different our lives are, and how differently Corbin communicates. I’ve become so accustomed to “Corbinese” as I call it, that I barely miss a beat in our conversations. His eyes get wide as he juts out his chin and I know that’s an emphatic “NO”. He smiles and spins in a circle and that’s a “YES!” with excitement. He is looking in purses, pockets, and random drawers and I respond “Daddy said no more gum.” He yells and hits his head repeatedly and I remind him “you can have a piece when we get in the car. Just go listen to some music until we go.” He grabs his Ipad and goes upstairs to his swing.
There are days, even weeks, where we live in the ease of this little world we’ve created here at home. The world where our two year old, Liam, runs the roost, stealing Corbin’s toys and food. Corbin mostly lets him, but occasionally looks at us to intervene. The world where our 12 year old Landon rolls his eyes over something Corbin does and sharply tells him “Don’t touch my stuff!” Corbin ignores him, like brothers do, and waits for the next moment to take his prized possession.
We’ve adjusted to the normalcy of our 2 year old taking naps in the car, where Corbin’s vocal stims won’t wake him, and where the extra bed in Corbin’s room is used for the on-call parent. We take two cars when we go to birthday parties/events and one parent stays the course, while the other leaves however early is necessary to call it a “success.” What may seem peculiar, inconvenient or even impossible to outsiders is just our normal, and sometimes our normal goes so smoothly that we don’t think much about how it may vary from any other home.
Although there’s upsets, and challenges that seemingly come out of left field and knock us out of our groove, for the most part we’re just living our typical atypical lives. It’s not until we’re bringing someone new into the fold that I become acutely aware, and sometimes overly anxious about how to integrate all of these differences into other settings, with other people.
I remember a time when Corbin was younger and we were beginning to recognize that his autistic tendencies were more extreme than others in his class, or the support community we engaged with. I remember going to autism community events thinking this was where we would fit in, but many of these children were able to speak, or mainstream into the general ed classrooms. I remember thinking that I wouldn’t give up hope for Corbin, and at the time hope meant believing he would mainstream in school, that he would talk, that he would one day live independently, fall in love, pursue a career. In many ways “hope” meant “normal.” I had accepted that he was atypical, but I hoped his life wouldn’t be.
I thought that accepting that he may not speak, or that he might not live independently meant that I was giving up on him, and I struggled to hold a vision of him that was so far from the boy who stood in front of me. I was so confused about how to support him, and how to hold him in his highest light, and believe in his full potential. I didn’t even know what that meant.
At this time I met a beautiful woman Aileen. She invited me to attend Able Buddies dance night and meet her son Randy. Randy was in his mid-20’s, nonspeaking and living at home with her. We met for lunch one afternoon and she spoke of him with so much love and admiration. I learned about how much he loved Oreos, and musical greeting cards. She shared about the challenges, and hardships. She talked about his great sense of humor, and the joy he brought to her daily. When I first met Randy at Able Buddies dance night, I saw him and Aileen dance together, and I saw a love I was just beginning to understand. It was deeper, heavier, more brilliant, and expansive than what most of us share. It was beautiful. I saw what a gift he was to her, but I knew it was a heavy gift. A gift I was struggling to carry.
Aileen and Randy had a huge impact on my life because they gave me a blueprint to follow. Aileen had surrendered her need for Randy to be anything other than who he truly was, and that allowed all of us to see him as completely whole. He didn’t make me sad. I never once felt bad for Aileen, in fact, just the opposite. I saw something I wanted more than anything. Not just with Corbin, but with all my boys. I want them to trust me like Randy trusted Aileen, and I want to exude such joy when I look at their faces, the way Aileen looked at Randy.
Two years ago Randy went to be with Jesus, and I had only ever met him once in his time on earth, but he gave me a gift that I will carry with me always. He showed the true measure of a man, and he gave me a new picture to embrace and find solace in. He allowed me to ease into the gratitude I had all along. I thought that as a parent I needed to fight against a future I couldn’t understand, when in fact I needed to surrender, and give myself to it.
Able Buddies of North Carolina is a place where we come together to be who we are. Not to accept, tolerate, or raise awareness, but instead a place where we harmonize as families and show each other, within our most vulnerable moments, that each and every one of us is loved, valued and whole.