My son was a micro-preemie. He was born at 24-weeks gestation. I learned to advocate for him from his 3rd day of life.
Picture this: I had a radical C-section. I was still on an IV and was holding on to the pole to stand up. And I was fussing at the neonatologist for not coming back to my room the night before to tell me if my son was alive. My pointing finger was aiming at the floor because I couldn’t stand up straight and look him in the eye. But we came to an understanding.
We became instant friends because he knew I was there for my son. That’s what he wanted—and we needed—to brave what was in front of us.
I learned to analyze the decisions we needed to make for Patrick. Some were daunting. Since there were so many unknowns, we decided to follow his lead. If he seemed to be leaning toward doing something, like walking, I did everything I could to help facilitate that.
I learned that making a decision doesn’t have to be permanent. In most cases, you can change your mind if the path you took is not the right one.
At age 3, Patrick was diagnosed with mild cerebral palsy (CP). There was little known about it and scarce information for parents. By that time, he was walking independently and could speak well enough for me to understand. But at 5, a new CP clinic opened. I jumped at the chance to have him assessed. They had a neurologist, orthopedist, and therapists in one place to do the assessment. It sounded perfect. I never felt quite capable of providing so many of the medical decisions for my son.
I learned a lesson. I made a new rule for myself. If someone suggests a surgery after seeing my son for 5 minutes, under the right circumstances, I can say "no." A second opinion may be needed. It is OK to say "no" to a physician, therapist, or teacher.
The neurologist told me that Patrick wrote left handed with his right hand. (Totally useless information in my opinion.) The orthopedist watched him walk for about 30 feet. Then he decided my son needed heel cord-lengthening surgery (because of toe walking). He proceeded to scare me to death about distorted feet and future bone surgery.
But the surgery scared me more. Patrick’s muscles atrophy quickly due to the CP. He would have to learn to walk again after being in casts for 6 weeks. I asked everyone I could about the surgery. Therapists, his primary care doctor, and other parents. I finally went to a new orthopedist who also happened to be a father of a girl with severe cerebral palsy.
He tested all Patrick’s muscles while talking with him and making him comfortable. He then watched him walk much further than 30 feet. (And when he wasn’t tense from being watched.) Then the doctor said if I would keep stretching his legs, he would be fine without the surgery. I should watch, make sure there were no changes to his feet.
I never took Patrick back to the clinic. And 27 years later, he still doesn’t need surgery on his feet.
Take a look at this video on talking with your doctor.
During the COVID-19 pandemic, we asked parents of children with disabilities and special health care needs to share their tips and stories about caring for their children during difficult times.