How to Find Your Purpose as a Special-Needs Family
Building an identity and sense of meaning are important when your child has developmental differences.
By Danielle Hatchimonji, Maurice Elias, Paul LeBuffe
Parenting is a challenge under the best of circumstances. And if you’re raising an exceptional family—when your child has special needs, whether they be medical, cognitive, neurological, behavioral, sensory, or physical—the normal stress of parenting is compounded by an onslaught of additional stress, doubt, and questions.
Can I learn enough about my child’s needs to support their development? How can I keep myself going while helping my child reach their potential? Will caring for my child’s special needs strain my relationship with my partner or other family members? What will it take to make sure the rest of my family has what they need?
Parents may mourn the loss of the typically developing child they had dreamed of. Siblings may struggle with understanding why their sister or brother receives so much attention, as well as why they act differently. Parents may feel a sense of shame, sensing that some family members are judging their child or judging their parenting. And there are the stares from strangers when children are not behaving “up to expectations” in public places.
Fortunately, these stressors do not necessarily lead to negative outcomes for the child or the family. One way that exceptional families build resilience—the ability to bounce back from everyday or acute adversity—is to creatively redefine a sense of family identity that incorporates the child with special needs. Here are some specific ways to develop an inclusive family identity, meaning, and purpose to boost your family’s ability to handle stress and obstacles.
1. Build a positive family identity around (dis)ability
Who are you, as a family? What special characteristics does your family offer the world?
Making meaning of a disorder or disability is a key task of families facing the realization that a child will not be healthy or typically developing. However, families cannot define themselves by disabilities, by the “can’ts” of life. After all, everyone has differing abilities. Focusing on the strengths of a child with a disability is an essential component of resilience.
When exceptional families make meaning of disability and strengths and integrate these into a positive family identity, they are more capable of using family resources—financial, emotional, and practical—to manage their stressors. A positive family identity can protect against stressors for any family, but for an exceptional family, it is especially important.
Some examples of what this identity might include are:
Many families ultimately find opportunity, hope, compassion, and gratitude in their family identity. They build a cohesive family vision that incorporates disability but is not defined solely by the child with special needs. Each member of the family is valued for a unique contribution to the collective family identity, rather than over-focusing on the child with special needs or their caregivers.
Of course, this process of building a positive family identity around (dis)ability is not immediate. A 2007 study of parents of children with autism found that most families adjusted to the demands of autism and made new meaning of their children’s disorder; yet that process took about two years for many families, and even longer for others.
Even as families first make meaning out of being an exceptional family, everyone in the family is developing, relationships are changing, and special needs are evolving. A family identity must continually adapt to meet the challenges of each phase of family life.
2. Connect with your family’s positive purpose
What constructive impact can your family have on the world?
Meaning or identity alone do not create a resilient family. Although they offer a new perspective and understanding, they don’t necessarily lead to goals and actions or provide connections to others outside of the family.
The next step is to develop a positive purpose: a meaningful goal to make a constructive contribution to the world. Purpose can provide a direction, the motivation to give to others, and the impetus to develop social connections beyond the family. Young people and adults with purpose tend to have greater health and well-being.
In the exceptional family, a family positive purpose could look like:
Committing to a family positive purpose is one of the most important ways to avoid becoming defined and dismayed by a child’s disability, and the benefits can be long-lasting.
3. Draw on cultural strengths to bolster positive identity and purpose
What beliefs, values, or traditions support your family’s positive identity and purpose?
Parents pass on aspects of culture, including religious practices, values and beliefs, and family and cultural traditions. Cultural beliefs and practices can provide meaning and positive identity, particularly in times of adversity and stress. Values and traditions regarding familial relationships may help family members feel supported and connected, which is critical for resilience.
Specifically, cultural strengths can support resilience and bolster positive identity and purpose. These might include:
For example, a family may believe that God would only provide challenges to them that they can handle. This belief may support the family in considering their child’s developmental disability to be God’s way of teaching family members and the wider congregation love, acceptance, and compassion.
As another example, a respect for nature is integral to many Native American communities. Families who view this belief as a cultural strength and incorporate these values into their family identity will likely feel connected to the broader community who shares these values. Involving all family members in traditions that communicate respect for nature, such as telling stories or creating art, would be a way to strengthen overall positive family identity and purpose.
The content of the belief is less important than the support for positive purpose and family identity that a religious or cultural belief can provide.
4. Co-regulate emotions to cope and stay connected to family positive purpose
How do you regulate your own emotions to cope with stressors?
The stressors that exceptional families face are not constant. Stress changes over different phases of the child’s disability and the family life cycle. As stress and adversity ebb and flow, parents must regulate their own stress and emotions—which will allow their children to regulate effectively, too. Research suggests that when mothers have greater coping skills, their children have fewer behavior problems. Improving foster parents’ abilities to respond to their children’s distress, helping to co-regulate children’s emotions, can even buffer against the biological consequences of stress in traumatized children.
Parents can think of themselves as emotion coaches who model the appropriate coping behaviors and coach their children to use the same strategies when they are under stress. Parents can model healthy emotion regulation by:
Together, these strategies can help strengthen a family’s relationships, well-being, and motivation to engage in constructive activities.
In her book Strengthening Family Resilience, Froma Walsh explains that resilience is about struggling well. Resilience is not about avoiding struggle. Although many definitions of resilience talk about resilience in spite of adversity, Walsh suggests it is more useful to think about becoming stronger together, as a family, because of adversity. The challenges we face as families can be sources of growth, strength, identity, and purpose, as long as we choose to use them this way.
By Danielle Hatchimonji, Maurice Elias, Paul LeBuffe
Parenting is a challenge under the best of circumstances. And if you’re raising an exceptional family—when your child has special needs, whether they be medical, cognitive, neurological, behavioral, sensory, or physical—the normal stress of parenting is compounded by an onslaught of additional stress, doubt, and questions.
Parents may mourn the loss of the typically developing child they had dreamed of. Siblings may struggle with understanding why their sister or brother receives so much attention, as well as why they act differently. Parents may feel a sense of shame, sensing that some family members are judging their child or judging their parenting. And there are the stares from strangers when children are not behaving “up to expectations” in public places.
Fortunately, these stressors do not necessarily lead to negative outcomes for the child or the family. One way that exceptional families build resilience—the ability to bounce back from everyday or acute adversity—is to creatively redefine a sense of family identity that incorporates the child with special needs. Here are some specific ways to develop an inclusive family identity, meaning, and purpose to boost your family’s ability to handle stress and obstacles.
1. Build a positive family identity around (dis)ability
Who are you, as a family? What special characteristics does your family offer the world?
Making meaning of a disorder or disability is a key task of families facing the realization that a child will not be healthy or typically developing. However, families cannot define themselves by disabilities, by the “can’ts” of life. After all, everyone has differing abilities. Focusing on the strengths of a child with a disability is an essential component of resilience.
When exceptional families make meaning of disability and strengths and integrate these into a positive family identity, they are more capable of using family resources—financial, emotional, and practical—to manage their stressors. A positive family identity can protect against stressors for any family, but for an exceptional family, it is especially important.
Some examples of what this identity might include are:
- As a family, we speak up for those who have difficulty expressing themselves.
- We are a family who includes people of all abilities in our activities.
- In this family, we see (dis)ability as a special part of our family that helps us slow down and feel gratitude toward simple moments.
- We spend time at a meal each day, or as often as possible, saying what we are grateful for that day or in our lives more generally.
Many families ultimately find opportunity, hope, compassion, and gratitude in their family identity. They build a cohesive family vision that incorporates disability but is not defined solely by the child with special needs. Each member of the family is valued for a unique contribution to the collective family identity, rather than over-focusing on the child with special needs or their caregivers.
Of course, this process of building a positive family identity around (dis)ability is not immediate. A 2007 study of parents of children with autism found that most families adjusted to the demands of autism and made new meaning of their children’s disorder; yet that process took about two years for many families, and even longer for others.
Even as families first make meaning out of being an exceptional family, everyone in the family is developing, relationships are changing, and special needs are evolving. A family identity must continually adapt to meet the challenges of each phase of family life.
2. Connect with your family’s positive purpose
What constructive impact can your family have on the world?
Meaning or identity alone do not create a resilient family. Although they offer a new perspective and understanding, they don’t necessarily lead to goals and actions or provide connections to others outside of the family.
The next step is to develop a positive purpose: a meaningful goal to make a constructive contribution to the world. Purpose can provide a direction, the motivation to give to others, and the impetus to develop social connections beyond the family. Young people and adults with purpose tend to have greater health and well-being.
In the exceptional family, a family positive purpose could look like:
- Parents who transition from careers-on-hold to careers in special needs.
- A family participating in organized activities to raise awareness about the specific diagnosis impacting the family.
- A family engaging with the community to integrate the child with special needs into settings that might otherwise be challenging or off-limits to children with special needs.
- Parents creating a support group for families with children having the same challenges.
Committing to a family positive purpose is one of the most important ways to avoid becoming defined and dismayed by a child’s disability, and the benefits can be long-lasting.
3. Draw on cultural strengths to bolster positive identity and purpose
What beliefs, values, or traditions support your family’s positive identity and purpose?
Parents pass on aspects of culture, including religious practices, values and beliefs, and family and cultural traditions. Cultural beliefs and practices can provide meaning and positive identity, particularly in times of adversity and stress. Values and traditions regarding familial relationships may help family members feel supported and connected, which is critical for resilience.
Specifically, cultural strengths can support resilience and bolster positive identity and purpose. These might include:
- Establishing cultural or religious rituals in your home, including ethnic foods, artwork, religious observances, and saying grace or otherwise giving thanks before or after meals.
- Participating in social groups—whether religious or formed around similar interests—that are inclusive and accepting of all family members.
- Being part of a community—whether based on racial background, national origin, or sexual orientation (to name a few examples)—that can serve as a source of social support.
- Balancing each family member’s need for autonomy as well as interdependence on the family unit, so that each family member feels included in the family identity. Some families will place more emphasis on autonomy and others more emphasis on interdependence, so finding balance that is appropriate to your family’s values and inclusive of all members is the key.
For example, a family may believe that God would only provide challenges to them that they can handle. This belief may support the family in considering their child’s developmental disability to be God’s way of teaching family members and the wider congregation love, acceptance, and compassion.
As another example, a respect for nature is integral to many Native American communities. Families who view this belief as a cultural strength and incorporate these values into their family identity will likely feel connected to the broader community who shares these values. Involving all family members in traditions that communicate respect for nature, such as telling stories or creating art, would be a way to strengthen overall positive family identity and purpose.
The content of the belief is less important than the support for positive purpose and family identity that a religious or cultural belief can provide.
4. Co-regulate emotions to cope and stay connected to family positive purpose
How do you regulate your own emotions to cope with stressors?
The stressors that exceptional families face are not constant. Stress changes over different phases of the child’s disability and the family life cycle. As stress and adversity ebb and flow, parents must regulate their own stress and emotions—which will allow their children to regulate effectively, too. Research suggests that when mothers have greater coping skills, their children have fewer behavior problems. Improving foster parents’ abilities to respond to their children’s distress, helping to co-regulate children’s emotions, can even buffer against the biological consequences of stress in traumatized children.
Parents can think of themselves as emotion coaches who model the appropriate coping behaviors and coach their children to use the same strategies when they are under stress. Parents can model healthy emotion regulation by:
- Prioritizing self-care. Parents can model caring for physical and mental health by sleeping well, eating well, and engaging in enjoyable and healthy activities.
- Labeling and describing emotions. Parents who name their own feelings and feelings in others can help children understand how to identify feelings. Being able to use words to describe an inner experience is an important skill for emotion regulation.
- Setting up a calming space or place. It helps everyone to have a place to go to in the home when they’re upset or just in need of some peace, where they know they will not be bothered, at least for a few precious minutes.
- Demonstrating healthy coping strategies. Parents do not need to be afraid of having feelings or showing their children that they have feelings. Within appropriate boundaries, it is helpful for parents to let children know how they are coping with stress using healthy strategies, such as distraction, positive self-talk, observing and challenging unhelpful thoughts, relaxation techniques, and talking with supportive friends or family. Be sure to say that you actually have a strategy and that you explicitly use it, thereby modeling this very useful approach for your children.
Together, these strategies can help strengthen a family’s relationships, well-being, and motivation to engage in constructive activities.
In her book Strengthening Family Resilience, Froma Walsh explains that resilience is about struggling well. Resilience is not about avoiding struggle. Although many definitions of resilience talk about resilience in spite of adversity, Walsh suggests it is more useful to think about becoming stronger together, as a family, because of adversity. The challenges we face as families can be sources of growth, strength, identity, and purpose, as long as we choose to use them this way.