You Are Not Alone: Tip sheet provides guidance for parents who learn their newborn has a developmental disability
When parents learn their child has a developmental disability, the news can be unexpected and momentous. Then the questions start: What’s ahead for our child? For our family?
The information can be overwhelming. “Tips for Parents Who Learn Their Newborn Has Developmental Disability” provides information for both parents and various providers who work directly with parents and includes links to valuable resources. The tip sheet is authored by Lauren Clark, professor and Shapiro Family Endowed Chair in Developmental Disabilities Studies at the UCLA School of Nursing and a co-author from the UCEER Center of Excellence in ELSI research at the University of Utah. The National Resource Center for Healthy Marriage and Families commissioned the tip sheet and recently published it online.
“Knowing they have much to learn, many parents wonder how they will face the unexpected experience of parenting a child who is different from typical children,” said Clark. “We wanted to help parents see the positive and the potential.”
The tip sheet is intended to provide guidance and suggestions for expectant parents (prenatally) or parents who learn of their newborn’s developmental disability shortly after birth (neonatally). Among the topics covered are:
- Hearing the Diagnosis
- Remember: You Are Not Alone
- Creating a Hopeful Future
A developmental disability, according to the Developmental Disabilities Assistance and Bill of Rights Act, is defined as a severe, chronic disability that:
- originated at birth or during childhood,
- is expected to continue indefinitely, and
- substantially restricts the individual's functioning in several major life activities.
According to data from the National Health Interview Survey and published in Pediatrics in 2019, 17.8 percent of children ages 3-17 in the U.S. has a developmental disability. Among the most common disorders identified through prenatal screening and testing are Down syndrome, fragile X syndrome, spinal muscular atrophy, cystic fibrosis, Edwards’ syndrome, spina bifida, and neural tube defects like anencephaly.
Clark conducted interviews with 40 parents who had children with developmental disabilities. The parents were asked when they heard—prenatally or neonatally—and what kind of information they wanted.
“Parents were looking for balanced information about everyday life and what to expect,” Clark explained. “They get a lot of information and it can be overwhelming. And negative. Our goal was to provide a glimpse of what that life would look like from the best experts around: Parents who have been there.”
The tip sheet was presented to a group of parents and providers at a webinar hosted by the National Resource Center for Healthy Marriage and Families, and it is available for providers, therapists, counselors and parents on their website. Presenters shared tips on what parents can do to create a hopeful future for themselves and for their child. They discussed strategies parents can use after finding out that their newborn has a developmental disability and resources for helping later in their child’s transition to adulthood.
“What we found was that parents really wanted to hear was a message of hope. During the early days and months after hearing the diagnosis they were trying to cobble together messages of hope and they wished nurses and others would help them see the positive and the potential.”
For example, one mom shared a comment from her pediatrician who said, “I'm going to give you one piece of advice. It's the same advice I give every parent regardless of what kind of child they have: Don't compare him to anybody else. He'll do things at his own pace. He might not ride a bike at 5. But he's probably going to ride it at 8 or 10 or 11, but he will ride a bike. Let him develop and move at his own pace. And he'll get there. He'll do it.”
Another parent shared this comment from the social worker the morning after her baby was born: “She’ll make you a better person and your husband a better person and your entire family better people. So it’s just going to be wonderful.”
“We want parents to know they are not alone,” said Clark. “New parents want affirming, balanced glimpses of what to expect, and this resource helps them imagine a positive future ahead.”