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Key points
- The parents of children with ASD have exceptionally high levels of stress.
- The parents of children with disabilities navigate a dense and maze-like set of institutions.
- We need to create a system in which the care of children does not pit families against schools.
- The Supermom/Good Advocate Mother is a myth that fosters unrealistic expectations.
At a neighborhood summer barbecue, a young boy who looked to be about four years old was picking up stray sticks from the lawn. With great deliberation, he arranged them in straight rows on the grass. After a few minutes, for no apparent reason, he flung himself to the ground, wailing loudly and tightly covering his ears. As a harried-looking woman holding a plate of food rushed over to tend to him, people quickly turned back to the festivities.
Later on, I spoke to the woman as she sat on a lawn chair, holding and rocking the now calm boy on her lap wearing large noise-blocking headphones. She introduced herself as Cara and her son as Ray. As we chatted, I told Cara I had an adult son with autism and intellectual disabilities. She revealed that Ray had been diagnosed with autism spectrum disorder or ASD, characterized by restricted, repetitive patterns of behavior, interests, or activities and persistent deficits in social communication and interaction.
Since the diagnosis, Cara’s days had been consumed with doctors, therapists and school authorities in charge of educational supports for Ray. Not surprisingly, she looked exhausted. “It’s a war,” she said grimly. “It’s a battle to get Ray the services he needs.”
I left the conversation with a sense of unease and anxiety about Cara and other mothers like her. After all, wars always incur costs, not only in dollars and cents but in human suffering and loss. I worry about the costs of the struggles Cara is going through, not only to her but also to her family, community and society at large.
We need to envision and create a system in which the care and support of persons with disabilities do not pit families against the bureaucracies and institutions that are supposed to be helping them.
The parents of children with ASD have exceptionally high levels of stress and mental and physical health issues. The work of advocacy, of negotiating for appropriate care and services for children, is a focal point of pressure. Along with the daily tasks of life, of making sure the rent is paid and food is on the table, the parents of children with disabilities are in a battle of advocacy—of navigating a dense and maze-like set of medical and educational institutions in order to access and coordinate appropriate services for their child.
A range of family members—fathers, grandparents, siblings and others—are involved in the care of children with disabilities. For mothers, though, the expectations and pressures are arguably especially sharp because of the special emphasis our culture places on the role of mothers. Think of the Supermom who does it all, with complete dedication and without a drop of sweat, from making sure the kids are wearing sunblock to working two jobs to pay the bills.
For those raising children with disabilities, Supermom merges with what I call the “Good Advocate Mother.” Like Cara at the neighborhood barbecue, the Good Advocate Mother is determined to do whatever it takes to ensure their child gets the best services, even if means going to war with powerful bureaucracies and people. Tireless and selfless, the Good Advocate Mother is a Warrior-Hero who monitors and manages treatment and services for the child with disability. She maintains a stance of hyper-vigilance through intensive and ongoing scrutiny and oversight over the child’s education, treatments, and progress. She works hard to develop expertise in the science of her child’s disability.
The Supermom/Good Advocate Mother is a myth that can inspire and empower mothers who are negotiating services for their child. At the same time, the myth fosters unrealistic expectations. If mothers in general are susceptible to guilt, the mothers of children with disabilities are especially prone to feeling like they are not advocating effectively enough for their child and that they are not measuring up to the ideal. The myth also sets the groundwork for blaming mothers for the unsatisfying progress of their child.
In addition to fostering conflicts between advocating families and institutions, the current system of care and services for persons with disabilities in the United States is one that reflects the entrenched inequalities in our society. Some families are simply more likely to succeed in their advocacy battles in comparison to others because of their social location and resources. For example, along with the benefits of living in well-funded school districts, families of greater economic means are better able to hire attorneys and pay for independent educational evaluations when trying to negotiating educational services for their child with disability. Middle and upper-middle class mothers also have access to cultural capital or class-based cultural knowledge which they can use to effectively interact with school personnel and authorities to reach their goals.
The families of children with disabilities have played and continue to play a critical role in disability rights movements and initiatives. Their contributions include the development of such organizations as Special Education Parent Advisory Councils (SEPAC) and Parent Training and Information Centers that are charged with helping the families of children with special needs. These are important sources of support.
Still, when I think of Cara, I know there is more that needs to be done to support mothers like her.
Bottom line, parenting a child with disabilities shouldn’t feel like a war.
