Milestones of children with developmental disabilities should be celebrated

One of my favorite aspects of my developmental pediatrics practice at the  Children’s Evaluation and Rehabilitation Center (CERC) at Einstein 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 on the unit where they were first seen. So the typical children I see entered CERC in the birth-to-3 age group, and then I have continued to see them afterward no matter how old they have grown. So it is that 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 many of my patients who stick with me the longest are those children 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 of our patients 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 if”s 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 and whose development has been marked by severe global delays. Doctors had told her mother that the 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 little girl walked independently into the center at age 7. She had no stroller, no wheelchair, no walker. She slowly walked down the hall to my room with a giant smile of accomplishment on her face. But truly, I think her mother’s smile was even wider.

Another long-term patient of mine 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. He learned to use it to make requests. As the literature has suggested often occurs, the device 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 holiday meal after years of being exclusively gastrostomy fed, having the attention span to sit through a movie with the family, spending a week at sleep-away camp: these are all achievements to be celebrated — whenever they occur.

Even when progress is slow, children physically mature; time marches on. Maturational milestones are often bittersweet. I remember a particular parent watching her daughter mature and voicing concern about what would happen when she got her period, because she was not able to be independent for all of her self-care skills. Not long thereafter, the mother called me to report that her daughter had gotten her period during school that day. The mother said that I was the first person she was calling to tell. She elaborated with pride that the teacher told her that 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 nine months pregnant and delivered my son soon thereafter. 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 dressed in beautiful outfits, with her hair done just so. Her mother tells me about her daughter’s bedroom and how it is decorated, and about what she likes to watch on TV. The mother is grateful that after years of seizures, her daughter is physically healthy. But her daughter did not start college this fall as my son did. This mother has clearly been thinking about this as yet another milestone that her daughter would not achieve. Yet she can celebrate this milestone in my family life with me.

Despite our emphasis on the development of the child, I am reminded often that the journey of parenthood — whether of a child with a developmental disability or not — involves quite a bit of parental development along the way as well.

Lisa Shulman is a neurodevelopmental pediatrician and director, infant and toddler services, Children’s Evaluation and Rehabilitation Center (CERC), Albert Einstein College of Medicine. She blogs at The Doctor’s Tablet.

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  • Ron Smith

    Hi, Lisa.

    This post meant so much to me. I’ve mentioned my youngest daughter before (sometimes maybe too much), but I remember when Laura fist laughed. She was three.

    Laura had fetal isotretinion embryopathy and was severely effected. She was tiny, but strong. She was so strong that by the time she was about 13, it was all I could to hold her and spoon feed her. I had done that every meal for many years until her choking was so bad, the only thing left to do was have a feeding button placed and paint the walls. It was a regressive milestone, but at least didn’t choke anymore.

    Stacy was also not a night person. So she would care for Laura during the day and I would take over when I got home from work. She and I slept in our king size bed, with a loyal dog named Ellie always at her feet.

    There were negative milestones and events of course. I remember the time that she woke me up seizing. Another time she somehow kicked and kicked till she kicked right out of bed onto the floor, all thirty pounds of her. She got a bloody nose out of that and I felt like the worst father ever, not to mention a lousy Pediatrician.

    Laura got sicker over the years and I seemed to lose any and all ground that Stacy and I had clawed out.

    She eventually stopped laughing and not I think because she couldn’t. You see when I would play with her and tap her hands repetitively and rapidly it would tickle her into laughter, something she really liked to do, it began triggering seizures also.

    But I did record that laugh though late one night when we were both up. You can hear it (I think I’ve got it done right) in the upper right hand column of my web site at the link in my signature.

    Laura passed away on April 24, 2012 at Scottish Rite Children’s Hospital in Atlanta. Her mother and I cared for her ourselves all of her life.

    And though there are all the sad times and tearful setbacks, there was always her laugh along with the smiles that she had briefly in her life. They are banners of our victory that can never be taken from us, though she has passed on.

    Again, Lisa, thanks for sharing. It was hard holding back the tears.

    Warmest regards,

    Ron Smith, MD
    www (adot) ronsmithmd (adot) com

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