Raising children with special needs can be both a rewarding and exhausting experience. Special needs children often require high amounts of daily care, which may necessitate that parents cut back on work or other activities. At the same time, their children’s needs and behaviors may exclude them from community events and supportive networks, leaving families isolated. Coordinating with service providers also takes times and effort, adding to parental stress.
Studies indicate that parents of children with disabilities are more likely to suffer from anxiety, depression, and marital problems than the general population (McConell, Savage, & Breitkreuz, 2014; Tint & Weiss, 2016). The 2009/10 National Survey of Children with Special Health Care Needs reports that 22 percent of families claim that their child’s health conditions create financial problems and 25 percent indicate that family members need to cut back hours or stop working to care for an ill child. When the number and severity of their children’s impairments rise, so do financial and work-related difficulties.
Parents can access various supports and services to ease their burdens, but the service system offers help as well as hassles. As sociologist Linda Blum documents in her study of mothers raising children with invisible disorders like attention deficit disorder (ADD) and attention deficit hyperactivity disorder (ADHD), parents encounter what she calls “dense bureaucracies,” decentralized, fragmented, and underfunded systems that families find difficult to navigate.
“What is striking is how relentless it was,” Blum says of the mothers in her study, “how many different sources of expertise they sought. The mothers might find someone who is helpful, but they couldn’t stop, they had to keep going, had to keep thinking there is probably more, another piece, another kind of specialist, or a more accurate diagnosis. They continually wondered, ‘Is there more I could be doing? Is there something I am missing?’”
Parents and children generally receive services from multiple agencies and providers, making coordination difficult. They may also find that the services they want most are not available or have long waitlists.
Ruth Levy Guyer, a medical ethicist and author who studied the effects of prematurity on children and families, found systemic demands similarly strained the parents she surveyed. “These families are spending 100 percent of their time caring for the child,” she says, “and yet they also have to go out and find special schools, special equipment, and special medicine.
For instance, children need new wheelchairs every year because they grow. Every one of those requests involves paperwork and phone calls. You need a guide through this, but that’s rare. Agencies don’t have that, they ask you to show what you need. But you’re so busy with your child, how can you? That’s why it is so draining.”
Families who fare best in this environment are those with social supports and financial means (McConell, Savage, & Breitkreuz, 2014). Families without one or both require assistance building them. Studies on resiliency robustly show the important role social supports and adequate income play in reducing stress and enhancing well-being (Masten, 2018).
Psychotherapists, case managers, and other professionals are uniquely positioned to help. Here’s how:
Learn the Resources to Help Families
Children generally receive services based on their disability. They may qualify for specialized schooling, physical therapy, occupational therapy, speech and language services, psychotherapy, and/or psychiatry. In general, those services do not take into account a family’s need for support and income.
In fact, the coordination of numerous services may further deplete a family’s finances and time for other pursuits. Psychotherapists should thus view their role as not just helping to reduce a child’s mood and behavioral difficulties, but also as a resource for families to locate and access supports that will make life more manageable.
Besides programs that exist through insurance and state agencies such as the Department of Developmental Services (DDS), which have rigid funding streams for limited services, many local and national non-profits and foundations exist that provide support groups, recreational activities, and more flexible funds for families to use. Those who work with special needs children should take time to learn of those programs.
Help Parents Develop Support Systems and Be Supportive, Yourself
Parents appreciate when professionals ask not only about their children, but also about what they might need and feel. Acknowledge the genuine difficulties parents face. Ask about their stresses and support systems and work to decrease the former and increase the latter.
Work with parents to figure out who in their network might be available to provide assistance and how to approach them. Aside from family members, have them think through which neighbors, school counselors, other parents, or special needs advocacy groups might be available to help.
Encourage them to meet parents in similar circumstances at support groups and recreational and informational forums run for special needs parents. Often, other parents know of resources that are not well advertised.
Professionals Should Provide Advocacy
Accessing services and supports in a decentralized system is a strenuous undertaking. Parents must exert a lot of energy not only locating services, but applying for them, and making a case to support their need. In some cases, when resources are scarce or limited, parents may be denied a service they feel they need.
A professional who is well-versed in the services and the key words and formulas that qualify children and families can be a helpful advocate. Attend meetings with families and back up their requests with professional assessments. Professionals play an important role both in supporting parents during difficult meetings and in advocating for their needs.
Blum, L. (2015). Raising generation Rx: Mothering kids with invisible disabilities in an age of inequality. New York: New York University Press.
Masten, A. (2018). Resilience theory and research on children and families: Past, present, and promise. Journal of Family Theory & Review, 10, 12 – 31.
McConell, D., Savage, A., & Breitkreuz, R. (2014). Resilience in families raising children with disabilities and behavior problems. Research in Developmental Disabilities 35, 833–848.
Guyer, R. (2006). Baby at risk: The uncertain legacies of medical miracles for babies, families, and society. Herndon, Virginia: Capital Books, Inc.
Tint, A., & Weiss, J. (2016). Family wellbeing of individuals with autism spectrum disorder: A scoping review. Autism 20(3). 262 – 275.
U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Bureau. (2103). The National Survey of Children with Special Health Care Needs Chartbook 2009–2010. Rockville, Maryland: U.S. Department of Health and Human Services. Retrieved from https://mchb.hrsa.gov/cshcn0910/more/pdf/nscshcn0910.pdf.