Raising a child with special needs can both brim with moments of joy and accomplishment, and at the same time, be loaded with moments of aggravations. Day to day struggles result both from the high level of care a child requires and the endless demands of the service systems.
The tasks falling to parents of special needs children far outweigh those with more typically developing offspring. Children with special needs can require high levels of supervision and care. They also tend to participate in an array of services, which are often time-consuming: specialized schooling, psychotherapy, psychiatry, occupational therapy, physical therapy, sensory integration, social skills training, and/or medical treatments. Even when providers provide helpful care, they may introduce hassles alongside the help.
Accessing and coordinating services is an arduous process. Navigating bureaucratic mazes requires jumping through numerous administrative hoops. As educational advocate Alison Greene explained about obtaining an Individualized Education Plan (IEP), “The IEP language is difficult, the process is not transparent, the rules are many, and they change all the time. It is unbelievably hard for a parent to know the existing resources, what specific interventions a child needs, and how to fight for them.” If a family lives in a school district that lacks sufficient funding and is overwhelmed by a large, high needs population, procuring services can be especially hard. Similar difficulties can also accrue with the host of other services a child may require. As a consequence, parents are forced to become experts both on their children’s needs and on the availability and procurement of services.
When the requirements of researching, advocating, and pushing for services become multiplied many times over, the result is exhaustion. “It’s like Wonder Woman deflecting blows,” a single mother of a daughter with cerebral palsy, learning disabilities, anxiety, and ADHD told me. “There are days when on the outside I may appear calm. But I am frazzled. Just trying to get through daily life and bring her to all her appointments is a toll. And the school keeps asking me to do more. ‘What are you doing at home?’ her teacher asks. ‘Why aren’t you doing her homework with her?’ It is hard to keep a sane, level head.”
Parents of special needs children also tend to suffer from isolation. Their children’s needs or behavior may exclude them from activities. At the same time, parental workloads can leave little time for socializing or developing friendships. The combination of a high burden of care with few social supports exacts a particularly arduous toll. Results of numerous studies indicate that parents of special needs children experience higher rates of anxiety, depression, and marital conflict than the general population. They suffer financially and often need to cut back on work to meet demands.
A few strategies can help:
- Develop a supportive network
The results of studies on families undergoing adversity robustly show the importance of social supports to parents’ wellbeing. While often parents feel too busy or weary to put energy into developing a supportive network, the effort pays off. Clarify with family members how they can best help. Those whose family are not able to help can instead cultivate the assistance of neighbors, school counselors, and special needs advocacy groups. Some agencies provide recreational and informational forums where parents can meet other parents facing similar circumstances who can offer both support and crucial information.
- Find a professional who is knowledgeable and you can trust
The care of children with special needs inevitably brings a number of professionals and services into family life. The quality of providers varies. Sometimes families find knowledgeable professionals who offer sound advice. At other times, a family might be assigned a worker who is too inexperienced to be helpful. Search for professionals who not only understand your child, but who can help navigate the labyrinth of bureaucracies and guide you towards other helpful services and supports.
- Stick up for yourself and your child
When the school district denied her daughter with important cerebral palsy services, her mother at first felt tentative and apologetic about pushing back. But she eventually found her voice. “I am so tired of seeing my wonderful daughter and myself treated like less than,” she said. When school personnel blamed her for her daughter’s difficulties by saying, “It doesn’t make a difference what we do at school, if it’s not being followed up at home,” she replied, “You have no idea what I do at home, and I shouldn’t have to sit here and defend myself.” She marched to the superintendent’s office to voice her complaints. Not only must parents stick up for their family’s needs, it is also the role of the trusted professionals they engage. Parents should not field difficult meetings without support.
- Take care of yourself and the other members of your family
The stresses of caring for a child with special needs and coordinating providers takes a toll on families. The demands can swallow all available time and energy. But when parents get depleted, difficulties cascade. Marriages burst, siblings develop difficulties, and parents’ physical and mental health declines. Find ways to take care of yourself and the other members of the family. Use your support system to give yourself respite breaks. Schedule at least a little time each week for an activity you enjoy. Your special needs child needs a lot of care, but parents do not need to be the only ones providing it, especially at the expense of other important and replenishing endeavors.