Written by Rima Muhsen, Psychotherapist, PhD candidate, LPC, NCC
In the United States, developmental disabilities in children are common and have increased in recent decades. A 2023 report from the Centers for Disease Control and Prevention (CDC) found that the prevalence of any diagnosed developmental disability, including autism spectrum disorder, intellectual disability, or other developmental delays – among children aged 3 to 17 years, increased from 7.4% to 8.6% between 2019 and 2021. These figures reflect a growing population of children with diverse needs, including physical, intellectual, behavioral, and developmental. (1)
Several studies show that parents, often mothers of children with disabilities, face significantly elevated risks of psychological distress, depression, anxiety, and chronic stress. A large longitudinal U.S. study using data spanning twenty years found that mothers whose children had developmental disabilities were nearly three times more likely to develop anxiety or depression compared to mothers of children without disabilities. Fathers and other family members also had an increased risk, albeit to a lesser magnitude. (2)
Furthermore, parents often face stigma, shame, or social isolation associated with their child’s special needs, which, over time, contributes to a declining overall level of health and well-being, including physical health and increased chronic illnesses. As a result of these combined factors, having a child with special needs imposes significant emotional, physical, and psychological burdens; these burdens are often greater for mothers, who remain the primary caregivers in many families. When a family discovers that their child has special needs, whether at birth, during early developmental stages, or later in life, it triggers a range of conflicting emotions, and the entire family enters a period of grief, with its various stages. (3)
On the other hand, the person who decides to be the primary caregiver, usually the mother, begins to dedicate her time, effort, and psychological, emotional, and physical energy to the child with special needs. In some cases, the mother does not have the opportunity to fully go through the stages of grief and acceptance herself. As the urgent needs of the child overwhelm her thoughts, she becomes caught in a cycle of providing care and dealing with the child’s ever-changing needs and any unexpected developments regarding their health.
Driven sometimes by genuine love or altruism, many mothers adopt a behavioral pattern in which they feel a strong urge to save, help, or protect their children, even if the child does not actually need that help. This behavioral pattern is called “White Knight Syndrome”. (4)
This syndrome can sometimes unconsciously control a caregiving parent’s behavior to the point where the rescuer neglects their physical and mental health. The situation can worsen when the rescuer does not receive appreciation from those around them, or when their efforts do not yield immediate results, leading to psychological stress, feelings of inadequacy, and guilt.
For mothers of children with disabilities, the maternal instinct to protect and nurture can transform into a rescue impulse, leading the mother to become determined to save her child medically, socially, and developmentally at all costs. This excessive protection, constant defense or intervention, and the belief that if the mother tries harder, solutions to the problem will be found, can often become exhausting and unrealistic.
Furthermore, these ideas associated with rescuing the child and finding solutions to their problems can hinder the acceptance process. Acceptance, one of the stages of grief, occurs after an individual has gradually dealt with their grief and navigated a range of conflicting emotions, such as denial or bargaining, ultimately reaching a point of emotional processing that leads to acceptance.
Unfortunately, this “white knight” rescue approach often overlooks the needs of the rescuer. Mothers may neglect their own self-care and their mental and physical health, making them more susceptible to burnout, depression, anxiety, sleep disorders, and chronic stress.
I was fortunate to be invited to participate in an event held in early December of this year, organized by the AMAANA organization (https://www.laamaana.com/), as part of the celebration of the International Day of Persons with Disabilities. The event brought together several mothers who are caregivers for their children with disabilities. A lively discussion took place about the importance of self-care for caregivers and its positive impact on both the caregiver and the entire family. Many of the attendees, with tears and deep emotion, shared their thoughts and feelings about self-care and their personal and family experiences in this regard during and after the meeting.
One mother wrote, “Rima (the speaker) awakened what I consciously learned to ignore. Emphasizing inner awareness, self-trust, validation, adjustment, and finding peace in the truth.” Another mother said, “what I learned from the self-care session is that when you become a parent, you naturally give everything to your children — your love, your energy, your time, until you slowly stop giving anything to yourself. I spent so many nights without sleep, endlessly doing housework and taking care of everyone else, that at some point I completely forgot about my own needs.”
Another mother shared her experience and commented, “there were days I didn’t even notice myself. I would walk past the mirror and suddenly realize — I’m here too. In that moment, I felt my own soul saying, I need attention. I need care as well.” One mother indicated that the workshop reminded her that she is just as important as her kids and said, “my worth doesn’t come second. If I want to raise them with love, peace, and strength, then I must first be healthy, whole, and loved myself. Because you truly cannot pour from an empty cup.”
One of the participants confirmed this by saying, “her words woke something inside me. I deserve happiness. I deserve love, and I deserve to take care of myself mentally and physically.” Another mother touched upon deeper issues, stating: “the self-care workshop helped me finally recognize the early signs of burnout, such as running on autopilot, feeling easily overwhelmed, and giving nonstop without resting. The facilitator explained how this emotional exhaustion doesn’t just affect us, but also impacts our children when we have less patience and energy to connect with them.” Another mother later shared her experience and explained, “since the workshop, I’ve started making small changes, like taking short breaks and paying more attention to my own needs. It reminded me that caring for myself isn’t selfish and will help me show up better for my family.”
Realistic thinking, which involves acknowledging limitations, accepting that some outcomes may not change, and setting achievable goals, helps reduce frequent disappointments and promote emotional stability for caregivers. Self-care, in various aspects such as sleep, rest, emotional support, and psychotherapy, acts as a protective barrier against burnout and depression. The risks of neglecting self-care are just as significant as those associated with a lack of social support, feelings of isolation, and social stigma.
These combined factors contribute to improved long-term mental and physical health. Combining practical care with emotional awareness enables parents to remain effective caregivers while also prioritizing their own well-being. By moving away from unrealistic expectations and embracing sustainable care practices, mothers and, subsequently, their families become better equipped to build stable, positive, and realistic lives.
References
- Centers for Disease Control and Prevention. (2023). Prevalence of diagnosed developmental disabilities among children aged 3–17 years: United States, 2019–2021. National Center for Health Statistics Data Brief, No. 473. https://www.cdc.gov/nchs/products/databriefs/db473.htm
- Hoyle, J. N., Laditka, S. B., Laditka, J. N., & colleagues. (2021). Mental health risks of parents of children with developmental disabilities: A nationally representative study in the United States. Disability and Health Journal, 14(2), 101020. https://doi.org/10.1016/j.dhjo.2020.101020
- Cavkaytar, A., Batu, S., & Beklan Çetin, O. (2017). Perspectives of Turkish mothers on having a child with developmental disabilities. (Journal of Graduate School of Educational Sciences), 7(2), 192–215.
- Psychology Today. (2009). The white knight syndrome. https://www.psychologytoday.com/us/blog/the-white-knight-syndrome/200905/white-knight-commonalities