Support groups help mothers raising kids with disabilities
There is no question that a child with disabilities affects a family. Parents of children with disabilities are at risk for increased levels of stress, social isolation and stigmatization, as well as decreased marital satisfaction and psychological well-being. These stressors require ongoing coping resources to help families communicate with one another and regain a sense of normalcy in their lives.
Through social support, these families can begin to reclaim control over their lives and enhance their day-to-day well being. Support groups provide a therapeutic and social resource for families in need—especially mothers. As the most common primary caregiver, it is the mother who must adapt her life to her child with disabilities and assume most of the responsibility for providing day-to-day care. The mother is typically tasked with the duties of managing numerous therapies, special education requirements, medical intervention and behavior management, in addition to the everyday duties “expected” of a mother. Moreover, she must struggle with her own personal thoughts and reactions to disability, including feelings of guilt, anger, resentment, despair and inadequacy.
A support group can have very positive effects on a mother's self-concept and healing process. Through this social support, moms benefit from the abundance of emotional support, valuable information and useful coping skills, as well as learning to successfully navigate the challenges of raising a nontypical child in a typical world.
Do
- understand the many benefits of support groups
- appreciate the positive functions of social support
- recognize the importance of developing alliances and friendships
- keep in mind that support groups provide a place of safety and understanding
- use the group as a means for advocacy and education
Don't
- assume you can't heal
- forget about your marriage
- overlook the need to manage stigma
- join a support group without doing research
- underestimate the importance of empowerment
Do understand the many benefits of support groups
Support groups are small, voluntary groups created to provide individuals with encouragement, interaction, support and a safe atmosphere in which to discuss painful experiences, as well as joys and triumphs. They function as an informal approach to therapy, allowing individuals–who share similar challenges–the ability to express their fears and concerns, and improve mental health.
The value of receiving social support when dealing with difficult issues is well-known and can lead to increased life satisfaction, health, happiness and a sense of well-being, as well as reduced stress and loneliness. Many individuals coping with a multitude of issue, such as bereavement, cancer, alcoholism, disability, Alzheimer’s and divorce, find this social support in the form of support groups.
Do appreciate the positive functions of social support
Support groups provide a number of functions. These include sharing information and resources; discussing topics considered to be taboo; experiencing mutual support and catharsis; sharing feelings in a nonjudgmental environment; engaging in problem solving; reducing stress, alienation, loneliness, and isolation; reinforcing effective coping techniques; becoming a helper to others; developing social networks and supportive relationships; finding inspiration and hope; and validating thoughts and feelings.
Do recognize the importance of developing alliances and friendships
Participating in support groups give mothers the feeling that they are not alone and isolated, but rather surrounded by other women who can empathize with their emotional ups and downs. At one time of another, all mothers raising kids with disabilities feel some kind of anger, happiness, embarrassment, joy and stigma. The support group setting allows mothers the opportunity to discuss these feelings freely without judgment—and in the company of friends.
Do keep in mind that support groups provide a place of safety and understanding
Many women in support groups describe having a place to go where they can feel safe and understood. Because many moms raising a child with disabilities frequently encounter individuals who lack an understanding of their situation, they tend to feel isolated. Attending support groups with other moms who can grasp their difficulties provides a deep level of comfort and ease. Belonging to a group can provide a safe and nurturing environment, full of strength, support and hope.
Do use the group as a means for advocacy and education
Because advocacy is vital for these mothers, they use the support group and the alliances within the group as a vehicle for advocacy, as well as for information gathering and education. For example, the support group setting is a useful way to learn about the ins and outs of a child’s Individualized Education Plan (IEP) and insurance coverage, as well as learning about the best therapies and the worst doctors, how to cope with unsupportive family members, how to manage potty training and discipline, and the best ways to raise a typical sibling.
Do not assume you can't heal
The support group is a positive vehicle for healing. A group can help make sense out of a chaotic situation and offers scenarios of improved self-image and reconstructed identities. Also it helps moms come to terms with what it means to mother a child considered “abnormal” by society. The group is less about each child’s disability and more about mothers and the way in which each mother has chosen to handle her own fate.
Do not forget about your marriage
For some, support groups are viewed by participants as a tool to strengthen their marriages. By attending a support group, mothers are able to receive the emotional and spiritual support they do not receive elsewhere, specifically from their spouses. Most understand and accept the fact that they can’t get everything they need from their husbands, so they look to the group for this support. Moms consider the group their outlet where they can go to decompress and vent. In turn, they feel calmer and more patient after they share and rid themselves of angst and “baggage.” This, in turn, allows them to feel closer and more connected to their spouse.
Do not overlook the need to manage stigma
Because health, beauty and independence are highly valued in our society, imperfection–such as physical or intellectual disability–does not fit this ideal. Consequently, individuals with disabilities are sometimes viewed as having negative characteristics and qualities. Faced with these negative traits, others sometimes feel awkward and apprehensive when interacting with those who bear them, and as a result, sometimes act inappropriately and uncomfortable.
It is this stigma that is difficult for mothers to grasp. Many mothers raising children with disabilities struggle with taking their children into public, community settings—such as parks and stores—since public attitudes, behaviors and reactions can be cruel and painful. Because the reactions of strangers in public places cause some moms to feel self-conscious and socially isolated, they tend to avoid these individuals and choose not to interact socially with those who do not understand their experience of disability. Support groups enable these moms to let go of their stigmatizing experiences and be with others who completely understand and empathize with their journey.
Do not join a support group without doing research
Before joining a support group, do some research and due diligence on the group's philosophy, history and members. Take the opportunity to meet with other members and learn about their personal perspectives and coping strategies. While parent-to-parent support can be extremely successful in reducing parental stress and anxiety, it is important to join a group that fits your specific needs.
For example, if you are a mother with a newly diagnosed child, it is not beneficial to spend time with other parents who are experiencing unresolved problems or overly negative feelings towards disability. This will not be helpful for you or the healing process. The goal of a support group is for mothers who are struggling to be able to connect with other mothers who have successfully created a high-quality life for themselves. This type of mentoring relationship within a group setting can be a useful tool for both mothers as they share their life experiences.
Do not underestimate the importance of empowerment
Mothers also gain control over their lives through the empowerment they receive from support groups. Empowerment is a social action that promotes the participation of people, organizations and communities in obtaining control over their lives. It provides an opportunity to achieve a greater sense of self-esteem and reduces feelings of guilt and self-blame.
At the same time, empowerment provides a strategy to address oppression by creating shared goals and objectives to shape public policy. Support groups that encourage the development of empowerment generate important dialogue and collaboration, education about disability issues, insight into personal difficulties, and an increased sense of hope for the future.
Summary
Being a member of a support group can provide moms with strength and help them feel less alone in the world. A support group gives them a much-needed outlet when they have difficulty communicating with and relating to their husbands, family members, friends and other mothers raising typical children.
Belonging to a support group can help mothers cope with their emotions, feel more confident in their role as mother and strive to be a better mother. The group can provide each woman with a sense of identity and a place to reconstruct this identity as their children grow and face new challenges.
