Mary Ellen Stolecki, RN, MSN, CPNP
Mary Ellen Stolecki, RN, MSN, CPNP
Pediatric Nurse Practitioner
Comprehensive Care Program, Boston Medical Center
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Special Needs Parents: Unsung Heroes

As parents, we never imagine our child will have special healthcare needs. We might ask ourselves what if questions from time to time, but, quite naturally, most of us spend our days envisioning milestones—our child’s first words, first birthday parties, and even their first day of kindergarten and, later, high school. Yet an estimated 9.4 million (or 18 percent) of children in the United States end up with special healthcare needs, many of them facing chronic, complex medical, neurologic, or developmental conditions. Most of these difficulties manifest in the form of sensory, movement, cognitive, or emotional and behavioral functioning—ranging from mild to profoundly impaired.

Parents of children with special healthcare needs are the unsung heroes of our country—I know from my more than 25 years as a pediatric nurse practitioner. With support from extended family, healthcare providers, and community and government agencies, parents can garner natural and professional resources to care for their children—and help them reach their potential. But the road is complex and far from easy.

In my attempts as a primary care provider to enhance the health and educational outcomes of my patients, my support begins the minute I meet the parents. Why? Parents are natural educators—and, most importantly, their child’s first teacher. At that initial meeting, however fraught or busy I am that day, I find and highlight at least one positive connection between the parent and child. Even some of the most delayed children, for example, perk up and dance with some music. It is joyful to behold. Together, we acknowledge it, praise it, and foster it.

Parenting is one of the hardest jobs out there—and parenting a child with special needs comes with many added challenges. From my years of caring for children with special needs, I make every effort to help families navigate the intricacies of our healthcare and education systems. Here are some key take-aways.

For Children Ages 0-3

  • Access to routine preventative and periodic well-child visits during the crucial 0-3 years is imperative to a child’s health. Monitoring growth and development parameters, obtaining full vision and hearing evaluations, and providing scheduled immunizations can keep a high-risk infant’s general health on track.
  • Concurrent screenings for associated health issues, such as feeding difficulties, failure to thrive, and genetic or congenital disorders, enables caregivers to make a prompt referral to a specialist’s care. Often, early detection can prevent or mitigate problems later on.
  • Prescribed medications, as well as mobility or durable medical equipment, may be necessary adjuncts for optimal health and functioning.
  • Timely referral to an Early Intervention (EI) or Early Childhood Education (ECE) program is paramount. Physical therapy (PT), occupational therapy (OT), and speech-language therapy (SLP) services foster the infant’s (and family’s) development. Several studies support the results of improved cognitive outcomes, greater school achievement, and less grade retention and special education in children enrolled in these programs.

For Children Ages 4 and Up (School-Aged Children)

  • Advocating for continued special education to maintain or enhance gains made in the early years is essential during the child’s transition HGH to a structured school setting. Support services such as PT, OT, or SLP, plus classroom accommodations, are a child’s right under the Individuals with Disabilities Education Act (IDEA).
  • Mental health screenings, including screening for bullying. are standard of care. As recently reported in U.S. News and World Report, nearly half of U.S. children with an autism spectrum disorder are victims of bullying.
  • Adolescents and teenagers with special healthcare needs should be supported in terms of their own development. Young adults’ sense of independence and daily living skills can be supported by appropriate and supervised activities, that may in turn provide respite time for the family.
  • Pediatric healthcare providers need to facilitate transition to the workplace—and work with adult healthcare providers to create a seamless transition along the health continuum as an adolescent grows up and enters adulthood.

Often overlooked in the scramble to meet the needs of children with special needs are the parents. Isolation, stress, fear, guilt, and grief are common to both single and married parents. And too often, financial hardship, stress, physical health, and divorce can overwhelm a family—and lead to less vigilant care for all. First and foremost, parents need to prioritize self-care. What can help? I advise parents to schedule regular check-ins with their doctors, whether they’re sick or not; to seek out a family-centered, integrated model of care, in which teams of practitioners work with and get to know the whole family; and to connect regularly with their peers.

Even on a good day, the U.S. healthcare system can be daunting. Consider the powerful visual image rendered in the “care map” (pictured below) by Cristin Lind, the mom of a child with special needs who runs the parenting blog Durga’s Toolbox. Her image represents graphically the complexity of her child’s care—and the many players involved. Rightly, the child and family figure prominently at center space!

Too often, parents face the challenge of putting together this complex puzzle alone, with little guidance or outside help. My hope is that special needs parents feel supported, not isolated, and that a village of caregivers, relatives, friends, healthcare providers, educators, even strangers step forward to guide these unsung heroes to the right resources and care.

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Learn More

“My Care Map, or a Picture that Tells a Thousand Words,” Cristin Lind, Durga’s Toolbox, 2012

“Gabe’s Care Map: Cristin Lind, Mom, Illustrates What it Takes to Raise One Boy with Special Needs,” Lisa Belkin, The Huffington Post, 2012 and 2013

“Seven Things You Don’t Know About Special Needs Parents,” Maria Lin, The Huffington Post, 2012

“Nine Ways You Can Help a Special Needs Parent,” Maria Lin, The Huffington Post, 2012

“When Families Fail Parents of Children with Special Needs,” Maureen Wallace, SheKnows Parenting, 2013

“Editor’s Picks: My Child’s Special Needs,” U.S. Department of Education (a compilation of recommended resources and information)

 

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