© 2015 Sensory Friends
Having a child with special needs isn’t the gloom and doom that some might imagine it to be. Yes, there was the initial shock, sadness, fear, and overwhelming stress that consumed me when I first learned of Richie’s life-long challenges, but there is also an unspeakable love and happiness that I don’t share with anyone else on this planet. My son and I have a unique language of our own, I understand him and he knows he can count on me.
When I had my daughter, Samantha, I was eighteen years old. I dropped out of high-school and we lived the paycheck-to-paycheck, hustle and bustle life-style for many years. I love and adore my daughter, but my New-Yorican, fast-paced life was all about work and no play. Regretfully, I missed many things. I wasn’t able to be actively involved at her school or community events. Of course, we have many beautiful memories together, as it was just the two of us for a very long time. But I admit, I was clueless about the world around us. My first greatest life-lesson learned from having my daughter, was that every move I made affected her life. As a single mom, I couldn’t afford to be careless, go on countless dates, or enjoy the nightlife of a teenager. Becoming a mother at eighteen-years-old made me an instant adult. I learned quickly that my life was now lived for her.
When I had Richie, I was thirty, Samantha was twelve. I was married and we had just moved into our first home. For the first time in my life, everything was going according to plan. When I first learned of Richie’s diagnosis of Autism, I did go through a period of depression, but in time, I realized that sometimes life presents us with subtle lessons that are crucial to the next steps in our lives, whether we know it or not. Some of us are quick learners, and some of us need harder lessons, since we don’t always see the connection to the bigger picture right away. Richie’s diagnosis taught me that being a scheduled individual with a road-map to the perfect life doesn’t guarantee your life will be exactly as you planned it to be. There are hundreds of actions or life happenings (no matter how minuscule they may seem) that can change the course of your life forever. My son’s diagnosis (although not minuscule) was one of them. And I’m a better person for it.
I absolutely love my son. Let me rephrase this, there is no known literature that can accurately capture the emotional attachment I have this this young man. I actually had something to do with the creation of this wonderful person who has brought such meaning and joy to my life. This young teen who, every day is learning new things about the world around him. I get to witness his many discoveries, milestones, and accomplishments. I think to myself, what a privilege it is to know him, be close to him, and learn alongside him.
There are so many things I learned from Richie in his young life of thirteen years. I learned how to slow down and appreciate the tiny miracles that so many of us have the luxury of taking for granted. Things like learning how to eat with a spoon, getting dressed, or learning how to go to the bathroom, are among the many milestones listed under the natural rule of child-raising order. I applauded Samantha the first time she went to the bathroom independently, but I don’t recall getting excited about her getting dressed or eating with a spoon for the first time. However, with Richie, each new task mastered was like winning the lottery. I’ve won many times already. I remember the day Richie’s teacher called me at work to tell me they recorded him riding a two-wheel bike at 11 years old. I was sitting at my desk at work getting ready to have lunch. I was so surprised and overwhelmed with emotion that I couldn’t talk. The teacher, in her infinite wisdom, understood my silent-tearful happiness and promised she would email me the video before hanging up. Nothing went wrong that day.
I learned about research and outreach. Being a parent of a child with special needs makes you a bona-fide researcher and scientist! I learned new terminology, connected with other parents and agencies, and I learned how to navigate my way around the internet. Being able to network with other families and professionals provided me with insightful information and much needed perspectives. When the opportunity came for me to become a paid advocate for families, I jumped on it! I changed career paths and never looked back. To this day, I maintain sustained knowledge on special education processes and systemic change with the expectation of paying it forward. I want all parents to be informed advocates for their children. Parents should be at the table as partners in all decision making processes when it comes to their child’s education and overall quality of life.
Richie taught me patience and acceptance. Before my son, I admit I wouldn’t have thought twice about the disability community. I had always believed in equality, and was always kind to anyone I came across both personally and publicly. But I didn’t know anyone with a disability personally. I had no real connection to this wonderful community of people I would come to know and love. I had no idea of the disparities in treatment, access, service, and transportation. The number of issues are staggering. I learned how to be patient with others. Just as I had once been clueless, I know that others understand little about the many issues faced by members of the disability community (these are my teachable moments). All good change comes in good time (I know it’s tortoise-like). I learned how to be patient about not being able to change the world tomorrow. These days, I have to pace myself by prioritizing the issues I wish to work on first.
Richie taught me about humanity. All my life I will never know what a day in my son’s life is like. Not being able to express my thoughts, needs, desires, fears, pain felt or help needed, is unimaginable to me. My son can say a few words, and he’s learning new ones all the time, but he still struggles. During the growing years, Richie had many bouts of serious behavioral issues. There was a time I had no idea what I was going to do. Luckily, a robust Positive Behavior Supports plan coupled with time and maturity got us through those rough patches. Still, I know that every day he succumbs to annoying instances of discomfort, misunderstandings, and failed attempts at connecting with others. Richie handles these unusual circumstances with grace, patience, and sadly, acceptance. I learned that everyone has intrinsic value and leads a life of purpose. My son and other people like him, serve as constant reminders that we are supposed to care for and help one another. We are supposed to assist those in need of help. Could there be a more noble purpose? From the moment Richie was born, my life was completely changed and I wouldn't change a thing.
© 2015 Sensory Friends
Author: Christine Goulbourne