Navigating resources for parents of children experiencing developmental difficulties
Bryndle Bottoms: Research Assistant Professor, University of South Carolina
The belief that parents or caregivers are a child’s first teacher is a founding principle of child development. Even in utero, the child and mother are growing attachments to one another, while also forming close bonds with the other parent and close family members. Once a child takes its first breath, they are anxious to be soothed by the people to whom they have bonded. I have often heard of infants growing quiet upon hearing their parents’ voice for the first time, suddenly putting an end to whatever may have upset them.
The infant then seems to meet new milestones every day. They begin to use their five senses to explore the world around them. They learn to recognize sounds and faces, understanding that when they cry, someone comes to cuddle, feed, or change them. They even learn that when they cry louder, someone comes even faster! With each new day, they reach developmental milestones, like holding up their head, playing ‘peek-a-boo’, and babbling. Then, they may start to roll over, crawl, scoot, and eventually, walk! The ability to eat solid foods including the socialization of mealtime begins to develop, and they start communicating their needs with words like no, yes, and mama/dada. The child is learning how to do all of these new things because of his or her own unique needs, on a unique timeline, sometimes regressing or in a non-linear pattern due to the continued engagement by family and caregivers.
The developmental milestones described briefly above are monitored by the parents, pediatricians, and caregivers to ensure that children are reaching the necessary goals and outcomes. Parents and experts can collaborate to ensure the child is growing and developing within their own timeline. Developmental milestones are often illustrated on a continuum, with an expected age range for each. Most children will experience development outside of those expected age ranges, but it may not be across all areas or may not be within all domains of learning. Some children exhibit patterns of developmental milestones that are outside the expected continuum range. When experts see this pattern, they often suggest various interventions and may encourage specialists or other interventions, like occupational therapy.
As a parent, it can be overwhelming for a child to begin to exhibit patterns of behavior that are outside the typical timeline. Often, the parent begins to see this behavior or pattern of behaviors even before the experts. It can be the parent that encourages the conversations and advocates for the child to receive additional supports. The reminder of the blog will focus on two takeaways for all parents, but particularly for parents whose child may be experiencing developmental differences.
You are NOT alone
Disabilities can affect any family: they are not limited to the social constructs of race or ethnicity (Turnbull et al., 2015). There are thousands of families around the United States living with and thriving as a family with a child with an exceptionality. The most recent statistics indicate 15% of the total public school population receives special education services (NCES, 2023). According to the CDC (2023a), 1 in 36 children are identified with autism spectrum disorder (ASD). In early childhood specifically, 1 in 6 children aged 2-8 years old have a diagnosed mental health condition. It is important that parents, pediatricians, caregivers, and other professionals have collaborative conversations regarding the best care for a child.
Resources are not just available, but abundant!
Disabilities are not limited due to the social constructs of race or ethnic group, disabilities can affect any family (Turnbull et al., 2015). There are thousands of families around the United States living with and thriving as a family with a child with an exceptionality. The most recent statistics indicate 15% of the total public school population receives special education services (NCES, 2023). According to the CDC (2023a), 1 in 36 children are identified with autism spectrum disorder (ASD). In early childhood specifically, 1 in 6 children aged 2-8 years old have a diagnosed mental health condition (figure). It is important that parents, pediatricians, caregivers, and other professionals have collaborative conversations regarding the best care for a child.
A common concern of supporting children with developmental differences is the burden of cost of care. This includes a fear that services may not accept insurance or may be too expensive and therefore not accessible. The truth is that resources for families of children with exceptionalities exist at both the federal and state levels, and at both non-profit and private level. While some non-profit and private level resources may have some cost, more and more providers across a variety of entities are providing little to no cost care. One federal initiative through the CDC is Learn the Signs, Act Early (CDC, 2023b) which provides developmental milestone trackers and can connect you with a local partnership for support.
Parents can use this resource, and if they have questions, can direct those to their pediatrician or child care provider. Individual states have their own policies, initiatives, and resources to help support families navigate services. In South Carolina, an Inclusion Collaborative supports the various child care providers across the state by providing trainings and technical assistance on collaboration and inclusion practices with families of children with developmental differences. You can find an abundance of both in person and online resources at their website, https://www.scinclusion.org. In order to identify other states and their resources, the CDC has a compiled list (CDC, 2023c).
Conclusion
As your child’s first teacher, you are modeling how to respond to the world around them. Beyond the early childhood years, as a parent, you will continue to teach and model how to interact with family members, co-workers, and friends, as your child becomes an adolescent and a teenager. Your child will need you at these different phases and at different times, in different ways and in different capacities. One constant is that you and your child have a connection that cannot be replicated. That connection is as unique as our fingerprints. Be encouraged that no matter where your child may or may not be developmentally, there are experts willing and wanting to support you.
References
Centers for Disease Control and Prevention. (2023a, March 8). Data and statistics on children’s mental health. Centers for Disease Control and Prevention. https://www.cdc.gov/childrensmentalhealth/data.html
Centers for Disease Control and Prevention. (2023b, June 6). “learn the signs. Act early.” Centers for Disease Control and Prevention. https://www.cdc.gov/ncbddd/actearly/index.html
Centers for Disease Control and Prevention. (2023c, June 6). What is “Early intervention”? Centers for Disease Control and Prevention. https://www.cdc.gov/ncbddd/actearly/parents/states.html
National Center for Education Statistics. (2023). Students With Disabilities. Condition of Education. U.S. Department of Education, Institute of Education Sciences. Retrieved Sept 15, 2023, from https://nces.ed.gov/programs/coe/indicator/cgg.
Turnbull, A. A., Turnbull, H. R., Erwin, E. J., Soodak, L. C., & Shogren, K.A. (2015). Families, professionals, and exceptionality: Positive outcomes through partnerships and trust. Pearson.