Nick's Story
It was the eighth month of our pregnancy with Nick. I sat in the car on the way home from the clinic numbed by the news that had abruptly changed the course of our parenting dreams. In a shocking consultation, doctors had just told us that if Nick did not die shortly after birth, he would live with severe disabilities. Crazy with grief I tearfully bargained with God, telling him, "Take Nick, or heal him. I cannot raise a child with disabilities."
Shortly after, God gave us the child we needed when Nick was delivered by C-section at term weighing 4 lbs, 6oz. He spent 9 days in the NICU and another 9 days in a step-down nursery before coming home. The outcome was not as dire as doctors predicted before his birth. However, from then until now, no concrete reason has been found for his growth retardation at birth and accompanying medical maladies which include congenital cataracts, chronic anemia and skeletal abnormalities. This void of answers comes after consultations with three different geneticists, one of them nationally known.
During Nick’s infant and toddler years, developmental delays were obvious. With our focus on finding a cause related to a genetic disorder or a syndrome, the classic signs of autism were fuzzy at first. As Nick got older the symptoms sharpened: extreme hyperactivity to the extent of climing stair rails and other dangerous heights, loss of what little language he knew, poor eye contact and failure to imitate play of his peers. Initially he received a vague diagnosis of a cognitive developmental delay with a sensory integration disorder. An official diagnosis of autism came later, after an assessment by a team of specialists.
At the age of five, Nick self-diagnosed himself with epilepsy by crashing down the stairs and onto the dining room floor in a grand mal seizure. It was after this that we learned 50% of children with severe autism are seizure prone. After his first seizure, Nick had subsequent seizures once every two to three months. With trial and error and the right medication combination, his seizures are currently reduced to 3-4 times a year, usually triggered by a fever.
Treatments for Nick have included years of special education services, speech therapy, occupational therapy and behavioral therapy known as Applied Behavioral Analysis. From early childhood until now, Nick has progressed from not being able to sit in a chair longer than one minute, to focusing on a learning activity up to 25 minutes. Still nonverbal, Nick has moved from an assessment of being cognitively flat to demonstrating an ability to read, spell and utilize other skills. Though he may never talk, we believe he demonstrates the potential to communicate with us by keyboarding. Currently he is learning to talk to us with an augmentative communication device, which is a special computer for communication with pictures and words.
We believe that more potential lies within Nick. We are excited about the ways as service dog will facilitate achieving that potential. Learning 12 years ago that we’d have a child with a disability was one of the worst things we could’ve imagined. In the journey since, we’ve learned that while it has not always been easy, our lives have become richer as a result. It would be impossible to achieve this richness without Nick. It's God's unexpected way of answering my prayer on that horrible day of the eighth month of Nick's pregnancy.
A BOY WAITING FOR A SERVICE DOG
