My Life with Cerebral Palsy
When I was born, there were no computers or Internet, so my parents couldn’t Google “Cerebral Palsy”. They had to research everything. Actually, when my parents found out that I had Cerebral Palsy (CP), my mom cried all the way home. My dad asked her why she was crying — he had never heard of CP so he didn’t know what all of this meant.
I have a cousin Brian who is three weeks younger than me. When Brian started to move around on his own and I still couldn’t keep my head up, my parents made a doctor’s appointment. The doctor did a check-up and told my parents to come back the next evening without me.
That was when they found out about Cerebral Palsy.
You may be wondering, how long did it take before my parents found out why I wasn’t developing like Brian? It was about six months to a year before we had a formal diagnosis.
As time went on, my mom took me to doctors, therapy and preschool. One well-known doctor took a look at my condition and said that I would not talk ever. My parents freaked out, but the doctor was right. I have never talked.
If you are a parent and your child has Cerebral Palsy, you have to remember that a CP diagnosis is not the end of the world. The best thing a parent can do is treat your child like any other child. That was what my parents did. They did everything with me. My dad made standers, benches, and many other things that helped me throughout my life.
The Gift of Education
School was really difficult — to say the least. My mom had to fight for my education. She had to get on the Board of Special Education to make sure I was getting the education that I deserved. I would say education is the most important thing that you can give your child, whether they have Cerebral Palsy or not. I lost two years in school, but I was on the honor roll all four years of high school.
After high school, I went on to college at the University of Illinois at Urbana-Champaign, where I stayed in a dorm for students with disabilities. This was actually the first dorm that was built specifically for students with disabilities in the United States. It was a pretty unique place.
Over the three summers in college, I received internships that paid me for my work. The first summer I helped a professor with a project. The next summer I worked for Unisys, which opened my eyes that I could truly do whatever I set out to do. My last internship was at Washington University in St. Louis. They had students from top universities across country. For me, it was both shocking and incredible that I was among very smart students who all accepted me for me.
When I told the people in the Rehabilitation Center what I wanted to study, they looked at me and said that I was nuts. I did it anyway.
College is where I met a lot of my best friends. If you’re a parent of a teenager who has the opportunity to go off to college, my piece of advice is: let them! They will learn so much outside of what they will gain in the classroom.
I graduated with a degree in computer science from the University of Illinois.
Taking On The Real World
During my last semester in college, I had about 70 interviews with companies who came to U of I to interview students. None of them gave me a chance. I came home from college and had a few more interviews, but still no luck.
One day I was at Easter Seal DuPage and a therapist asked me how the job hunting was going. I said terrible, and he asked that I give him my resume. The therapist’s wife took my resume to a head of IT and after a month or so, I was hired as a programmer analyst. I was with the company for fourteen years until 2009, when the corporation closed the subprime mortgage business and I was let go.
Finding Your Purpose
After being let go, I had to start planning for the future. My mom had Alzhiemer’s, my personal care assistant quit on me and my dad and I were butting heads about what to do. Long story short, I bought a condominium in Naperville, IL. The condo was originally built for people with disabilities, but it wasn’t in great shape. Two directors I knew from work had retired and they gave up their time to help fix-up the condo.
During the last few years, I started a diversity group for employees with disabilities and employees with disabled family members.
Looking back on my life, helping other people was a calling that I always had.
Around 2012, one of my childhood friend who has Cerebral Palsy asked me if I wanted to write a book about our lives. I said sure, why not? I was unemployed, so writing a book would keep me busy. We finished writing and editing our book a year ago. The title of our book is “They Said We Couldn’t” (available on Amazon).
After the first draft of our book was done, I realized I had more to say.
I started a YouTube channel about disability awareness, which has been going strong for about three years now. I created a website to provide information and support for people with disabilities. I also do talks around the country to promote our book and spread the message of acceptance.
My main focus for this year is to get our message out that people with disabilities are an essential part of society. A cerebral palsy diagnosis shouldn’t define your potential. My story is living proof that if someone tells you can’t, or that you’re crazy, you’re probably on the path to achieveing something incredible.
For more information on how to purchase my book, “They Said We Couldn’t”, visit: http://disabilityawareness.us.