Even when progress for your child is slow, there are things to celebrate; it’s important to honor small victories. Seemingly commonplace accomplishments are all the sweeter because of what could have been: the “what ifs” that thankfully never came to be—because of intervention.
One of my favorite aspects of my developmental pediatrics practice at the Children’s Evaluation and Rehabilitation Center at Albert Einstein College of Medicine is that I have the opportunity to follow children and their families in the clinic over the long term—often for many years. Because I am the director of the infant and toddler team, that may sound like an odd statement. But the way our center works, children often continue to be followed in the unit where they were first seen. So the children I see entered CERC in the birth-to-3 age group, I have continued to see them afterward no matter how old they have grown. So that is why I have 13-, 18- and even 22-year-olds whom I see in my practice.
Colleagues from other disciplines have been known to jest that it seems I’ve “had trouble curing” my patients. In many cases that is so. The care and advice I dole out, and the interventions we provide or help families access, are often unable to cure children of their developmental disabilities. That said, once the diagnosis has been given and intervention initiated, gains are seen in most of my patients over time. The years typically bring developmental accomplishments, along with acceptance of limitations. There are causes for celebration and milestones to mark—even if they don’t follow the timeline set forth in What to Expect When You’re Expecting.
It is true that often the patients who stick with me the longest are those with the most severe problems, who make limited progress despite receiving appropriate intervention. Many of those who do well gradually wean themselves from our care—but often, they stay in touch. During holiday seasons, some parents send cards showing their children growing bigger. A handwritten note will often give an update of an accomplishment: “on the honor roll,” “star of the class play,” “graduating from middle school.” Gratitude flows through their words. These seemingly commonplace accomplishments are all the sweeter because of what could have been: the “what ifs” that thankfully never came to be—because of intervention—for their 26-week premie or their toddler with signs of autism who didn’t speak until age 3.
Even for those children whose development is significantly delayed, there are things to celebrate. I follow a child who experienced prolonged seizures at birth, whose development has been marked by severe global delays. Doctors told the mother her child would likely never walk. Her mother was determined that she would. I am convinced that this mother’s single-minded devotion to this goal made it a reality. I will never forget the day the girl walked independently into the center at age 7. She had no stroller, no wheelchair, no walker. She slowly walked down the hall with a giant smile of accomplishment on her face. I think her mother’s smile was even wider.
Another long-term patient with autism spoke his first words at age 16. His mother had long before given up hope that he would ever speak. Then, with the help of a talented speech therapist on our staff, he was introduced to an augmentative communication device, which eventually prompted the boy to say his first words. They were “cheese doodle,” later followed by “Dorito” and “juice.” Hearing his voice after all those years was cause for celebration, not only for his patient mother but for all the staff who knew him well. (His vocabulary is nutritionally more well-rounded these days.)
Going to the corner store alone with money for a snack, joining the extended family for a meal after years of being gastrostomy-fed, having the attention span to sit through a movie with family, spending a week at sleepaway camp: These are all achievements to be celebrated—whenever they occur.
Even when progress is slow, children physically mature; time marches on. Milestones are often bittersweet. I remember a particular parent voicing concern about what would happen when her daughter got her period, because she was not able to be independent for all of her self-care skills. Not long thereafter, the mom called me to report that her daughter had gotten her period during school that day. I was the first person she called, elaborating with pride that the teacher said her daughter had obviously been quite well prepared for this milestone, since she seemed to know just what to do.
Then there was the parent of a teen with Down syndrome who mentioned to me that her son had been talking about going on a date with a girl in his class. The mother later recounted how she and the girl’s mother planned the details of the date and accompanied the teens, sitting at a nearby table. The first date apparently was a silent affair. But the boy has all sorts of topics of discussion planned for the second date.
Over the years, many of these long-term relationships with families have taken on a reciprocal quality. Pictures of my children adorn the shelves of my office. Over time, families or the patients themselves may ask about my children. One parent surprised me recently with a comment that my son must have started college this year. That is true. It was a milestone for my own family—but why was she so conscious of it?
She reminded me that when she came to see me for the first time with her infant premie, I was 9 months pregnant. Her own due date had been right around the time my son was born. This parent’s child has not been able to be “cured”; indeed, her progress has been quite limited. She does not walk or talk. Her mother loves her dearly. The girl comes to appointments dressed in beautiful outfits, her hair done just so. Her mom tells me about how her daughter’s bedroom is decorated, about what she likes to watch on TV. The mother is grateful that after years of seizures, her daughter is physically healthy. But her girl did not start college this fall as my son did. This mother has been thinking about this as yet another milestone her daughter would not achieve. Yet she can celebrate this milestone in my family life with me.
Despite our emphasis on the child’s development, I am reminded often that the journey of parenthood involves quite a bit of parental development along the way as well.
