This article originally appeared in the Huffington Post on July 26, 2016.
I can remember it like it happened yesterday. My wife was pregnant with triplets and was in the 24th week of pregnancy. She was in the hospital on bedrest when her placenta ruptured. I received a page with those three dreaded numbers – 911. I got to the hospital just after my wife went into surgery. Over the next few minutes, I saw three isolettes being wheeled from the surgical suite with my very tiny new babies to the Neonatal Intensive Care Unit (NICU). Soon, my wife was able to recover, but my life rapidly turned upside down.
I lost two babies within 10 days, and my youngest daughter was in grave condition and barely clinging to life. Over the next three months, her condition stabilized and gradually improved to where she could leave the hospital on oxygen. However, just prior to leaving, I found out that my daughter was deaf and had developmental difficulties (cerebral palsy).
After getting home, my wife and I went through what we like to call NICU withdrawal (no doctors or nurses around as a safety net to diagnose the slightest abnormality). We were on our own. After an episode where our daughter had to be rushed back to the hospital (she was straining too hard) and then another scare – an unplanned oxygen test (we forgot to change an oxygen tank), we slowly began to realize that she would be okay. We had a great pediatrician who assured us that with some lifestyle adjustments, there was no reason why she couldn’t live a fairly normal life.
My daughter will soon be 17, and I must say that everything that the pediatrician said came true. There were some rough patches, but along the way, however, I developed four leadership lessons that would help guide my daughter to become the best she could be.
Throw out all child development books
This lesson actually came from the pediatrician. These books would not apply to our daughter, and they would do nothing but frustrate us. Every child is unique and ours was more so. We needed to go by her schedule, not some arbitrary timelines. Our daughter reached all of the key milestones but on her own schedule. For example, she didn’t even learn to walk until she was almost three. It didn’t matter that she was “late”, the key is that she achieved them. That was all that mattered.
Recognize what is important
When she was born, our daughter became our number one priority. Since our daughter was going to require frequent medical appointments and had unique care requirements, we decided to change our career goals and aspirations so that we could care for her. At the time, my wife and I were both information technology consultants which required us to be away from home several days a week. No more! My wife took a sabbatical for the first 5 years of our daughter’s life, and I rearranged my schedule so that I would be away from home no more than one day a week. When that became impossible with my employer, I resigned and found other work. At times, it meant taking odd jobs, but my family took priority.
Be not afraid
Sometimes it can be tough to get the services that your child needs. You will encounter some who think that they know what is in your child’s best interest and then there are others who simply want to do as little as possible. This was our child, we were her advocates, and we were not going to let anyone push us around. We educated ourselves on medical terminology, Individualized Family Service Plans (IFSPs), Individual Education Plans (IEPs), and learned American Sign Language (ASL) so that we could directly communicate with our daughter. Above all, we did whatever was in her best interest. We fought with school districts to get the services that our daughter needed and also medical professionals who advocated various exploratory surgeries. We were our daughter’s parents and as long as she was a minor, we did our best to find and provide the best care possible.
Reach for the stars
My daughter’s challenges were mainly physical, not mental. Having said that, early on I adopted a phrase that has now become our family motto: “Find Another Way.” I never tell her that she can’t do something, but that sometimes she needs to find another way. As an example, she has limited use of her right hand so she learned to do everything with her left. Some people may be cruel to those with special needs, but as a parent, my job is to encourage my child to be the best that she can be.
Schools can be especially difficult. Some school districts simply believe that all kids with unique challenges should be labeled as “special needs” and confined to special classes. As a result, our family has moved several times in order to place her in an environment where she can reach her potential. In the end, we must have done something right. She just finished her sophmore year in high school and is carrying a 3.6 GPA. In addition, she participated in her high school’s drama production and next year will be on the cheerleading squad. She has high aspirations for her future. She has set a goal to attend Harvard University and to one day enroll in Law School.
If you are the parent of a child with special needs, your circumstances may be different than mine; however, by using these four simple lessons, you will lead them in the direction where they can be the best they can be.