“Your child has cerebral palsy.” Those words are devastating. Your world is forever changed. How do I know? I heard those words myself 24 years ago and not a day goes by that it does not affect my life or the life of my family.
I am the mother of a son with cerebral palsy. I remember those first days, weeks, months and years after receiving the diagnosis and how I felt. I wanted information and help but I did not know where to go. I am not a medical expert. I am a mom who has a child with cerebral palsy. It is my hope to share our experiences, our successes, and our failures from the perspective of a mother so that others may gain some insight.
Getting Michael’s Diagnosis
My son was diagnosed with cerebral palsy, known as cp for short, at the age of 10 months. During pregnancy, I went to my seven month check-up with a backache. The doctor said that it was normal at this stage. I went home not feeling well. Early the next morning I went to the hospital and delivered less than 30 minutes later. Michael cried out once and quit breathing. My son was rushed out of the room and put in an incubator and given oxygen. A team of specialists rushed Michael to the nearest metropolitan hospital, Grand Rapids, 45 minutes away. They took some Polaroid pictures of Michael and told me he had a 50/50 chance of making it through the night. Michael persevered and two weeks later he came home. All seemed well.
As the months went by I noticed some odd behavior. He was not holding his head up straight. He wasn’t crawling when other babies were crawling. It was very difficult to change his diaper – his legs were very tight and they “scissor” when lifting him, changing him, or placing him in a bath. I spoke to my doctor, but he said it was normal for a preemie baby to have developmental delays.
By the time Michael was nine months old I had switched doctors for the third time. I felt like my concerns were overlooked and I was being treated like an overly protective mother.
One day I received a notice from our public school system. Because my son was a preemie baby, he qualified for early intervention through the school system. I gave the school a call and scheduled an in-home visit.
A school therapist arrived at my home and evaluated Michael. I told her my concerns that at his age he was commando crawling (at this point I had not heard of this terminology, I just knew it looked different). His body moved in awkward movements and he could not sit yet. His legs were extremely tight and he was unable to play with his feet like most babies can.
The therapist was quiet during her evaluation. When she had completed her paperwork, I asked her if she thought there was something wrong with my son and she stated to me that she was not a doctor. I told her that she had 20 years of experience as a therapist and asked her opinion. She said, “I think he has cerebral palsy”.
I had no idea what that was. I knew it couldn’t be good. I felt suddenly sick to my stomach. Then the therapist said something to me that I never forgot. She said, “He is still the same Michael he was before I walked through that door, he hasn’t changed.” She was right. Her no nonsense attitude has continued to guided me.
That very day I made an appointment with a neurologist and received the diagnosis of spastic diplegic cerebral palsy.