As a parent who has a child with disabilities, I have spent countless hours documenting and observing my child’s differences. I have sought evaluations, discussed his difficulties at length during school meetings and at times, I have had to demand support services due to these differences. I have never taken pleasure in listing these ways in which he “falls short” by society’s standards, but it has been my job to keep track. I am his advocate. His voice to be heard. It is one of the best and hardest roles I have the privilege to play.
I have taken this role seriously, as most parents of children with disabilities do. Over the years I have been the rule setter, the data collector, reinforcement giver and manager of meltdowns. I have talked to other parents, advocates and educators. I have read books detailing the complexities of his collective diagnoses and have fallen asleep during documentaries. I have lost friends and pissed off family. I have yelled, cried and sought my own therapy. All of this was done because of difference.
I became hyper-focused on my child’s differences to the point where I felt a constant flow of negativity and resentments course through my body. I had panic attacks because I was filled with fear about his future. I was consumed by behavior plans, therapeutic appointments and the lack of playdates my child was offered. I felt the sting of abandonment and the piercing silence of isolation. Would he ever be “normal?” Yes, I’m sorry to say that thought crossed my mind. In my darkest days, I wanted him to blend in, to not be impacted by the laundry list of diagnoses that trailed behind him. I was drowning in a sea of lack, unable to see the lush island beyond the white-capped waves pounding me in the face.
Somewhere, amid the thrashing sounds of trying to keep myself afloat, I realized I had to save myself. I was the only one who could flip my perspective around. I made a decision to come from his strengths and abilities rather than from his disabilities. I began to focus on his kindness. His courage. His resilience. His dedication. On the places where he found success. On the days, months and years he continued to make strides, building his tolerance for non-preferred tasks and sharpening his skills in both social and academic settings.
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Today, I carry a positive perspective with me. I no longer hyper-focus on his deficits. I still see and acknowledge areas of need, but recently I find myself eager with curiosity to witness how he will rise to meet any challenges presented. My son’s difficulties no longer own me or define him. In a world where differences matter, where labels and diagnoses provide access to services, he holds his head high. He knows he is more than these words placed upon him. May we all live by his example and rise above the language, the boxes, the ways in which we are defined and know we are innately good.