by the Albert Einstein College of Medicine
In my family, as in many others, during the holiday season we volunteer at soup kitchens and purchase gifts to donate to children who might otherwise have none for Christmas. It’s our way of expressing our gratitude.
This got me thinking about gratitude in the face of developmental disability.
Daily life is often difficult for the families I work with as a developmental pediatrician at the Rose F. Kennedy Children’s Evaluation and Rehabilitation Center. There are more tears of sadness than of joy in my office. The frustrations, anxieties and questions—about “why,” “what if” and “if only”—are spoken of every day by parents.
But there is gratitude as well.
I remember that when we moved to our current office space, I expressed concern about the setup. There would be a single waiting room; adults with severe disabilities—some of whom were nonverbal, some of whom were in wheelchairs—would be side by side with parents bringing in their infants or toddlers who had been referred to us. I worried about how frightening it might be for the parents of young children, who would wonder: is this what is in store for my child? But I think some good has come from the arrangement.
Parents often come into my office with a sense of gratitude about what their children can do, instead of focusing only on what they cannot.
A family may come to see me with a toddler they fear has autism. The child may not speak, or may have behaviors or interests that are of concern to the parent or doctor or preschool. Often that concern is warranted, but other times, the child may be language delayed or have a shy temperament. The former often respond to intervention and the latter are within the wide range of typical personalities. Such a family tends to express gratitude for having dodged a life-changing diagnosis.
Then there are the children with developmental disabilities who do far better than expected. They respond well to interventions, continue to improve each year and over time become more capable academically and socially, with fewer behavioral problems, until they head off to high school, then to college—things the family never believed possible. Their parents speak of their gratitude for getting the children identified early, receiving appropriate intervention and even being lucky.
I follow many children with autism—some with syndromes associated with significant intellectual disability, who are nonverbal and often have behavioral challenges. Their parents have nearly lost all hope.
Recently, an 8-year-old with severe autism arrived with his mother, who was seeking advice on what more could be done for her child. He was expressing aggressive and self-injurious behaviors. The mother’s daily life was difficult. Any little thing could set off a severe tantrum in her son, resulting in his showing aggression toward others or hitting himself in the head.
He was getting bigger and harder to manage, and she feared taking him out alone. “Life shouldn’t be this hard,” she lamented.
After making sure that he had no acute medical problems or sources of discomfort (e.g., problems with his teeth, or constipation) and that he was in an appropriate school setting, I started him on a medication approved for the treatment of irritability in autism. He responded well. On a follow-up visit, his mom said he seemed much happier, with far fewer tantrums.
Next, he saw a speech therapist, who used an augmentative communication device to work with him. It became clear he was a good candidate for working with such a device: he understood cause and effect, and he was able to look at an array of pictures, understand what they represented and then make choices, thereby communicating his wants and preferences.
Although he still was nonverbal, his mother saw that he was more capable of communication than she had thought. She saw a path toward his achieving increased communication ability.
And at each visit, I saw his mother transformed a little. She smiled more; she seemed less stressed. Slowly, she began speaking more hopefully about her son’s future and her own. She expressed gratitude for the therapist, the medication and the guidance that were giving her son a voice—and giving her hope.
For all the tears in my office, I also see families who express gratitude that life with a child with a disability whom they love dearly has taught everyone in the family to slow down and appreciate the simple things in life.
Nearly everyone has things they wish were different—things that simply aren’t fair and don’t make sense. But in this holiday season, we seek to cultivate gratefulness for what we have. For families who have children with significant disabilities, this gratitude often is directed to the people who help their children learn, thrive, be safe and be well cared for, and who ultimately optimize their potential.
They also express thanks for the people and communities who support the families, helping them access resources, advocate to have unmet needs addressed or simply do regular things such as go to church, buy a candy bar at a store or go to the movies.
And then—often very gradually—the children and parents of children with disabilities reach the point where they can help others along the difficult paths they have already traversed, and become a source of gratitude for others.
Being involved with the families I see and being able to positively impact their life journeys in any small way is a privilege and inspiration every day. For this, I too am grateful.
Lisa Shulman, M.D. is a neurodevelopmental pediatrician and associate professor of pediatrics at Albert Einstein College of Medicine. She is also director of Infant and Toddler Services and the RELATE program at Montefiore's Children's Evaluation and Rehabilitation Center.