Grief is a universal human experience, yet it often feels deeply personal and isolating. Every family will encounter loss at some point, whether through the death of a loved one, the loss of a relationship, a serious medical diagnosis, a change in abilities, or another significant life transition. For families of children and youth with disabilities and special healthcare needs, grief can affect not only individuals, but the entire family.
Understanding grief can help parents and caregivers create a supportive environment where healing is possible. Although grief cannot be rushed or taken away, responding with knowledge, compassion, and meaningful connection can make the journey feel less overwhelming and help families navigate it with greater resilience.
Understanding Grief
Grief is the emotional, mental, physical, and social response to loss. Some people experience sadness, while others may feel anger, confusion, guilt, anxiety, numbness, or even relief. Physical symptoms such as fatigue, sleep disturbances, changes in appetite, headaches, and difficulty concentrating are also common.
There is no “right” way to grieve. Cultural traditions, family beliefs, personal experiences, age, developmental level, and the nature of the loss all influence how grief is expressed. One family member may want to talk openly about the loss, while another may process emotions privately. Both responses can be healthy.
A common misconception is that grief follows a predictable sequence of stages. In reality, grief is rarely linear. People often move back and forth between emotions, and anniversaries, birthdays, or other meaningful events may bring renewed feelings of loss long after the initial event.
Parent Tip: Avoid comparing your grief—or your child’s grief—to anyone else’s. Different reactions and timelines are normal.
How Grief Affects Children
Children experience grief differently than adults. Their understanding of loss depends on their age, developmental level, and life experiences.
- Younger children may not fully understand the permanence of death and may repeatedly ask questions.
- School-age children may experience sadness, fear, anger, or concerns about their own safety.
- Teenagers may appear withdrawn, irritable, or reluctant to discuss their emotions.
Children often process grief in smaller doses than adults. A child may cry one moment and play happily the next. This does not mean they are unaffected by the loss. Rather, children naturally move in and out of grieving as they process information at a pace their developing minds can handle.
For children with disabilities, communication differences, sensory needs, or cognitive delays may affect how grief is expressed. Some children may show behavioral changes rather than verbalizing emotions. Parents and caregivers should pay attention to changes in sleep patterns, appetite, school performance, social interactions, or emotional regulation.
According to the Substance Abuse and Mental Health Services Administration (SAMHSA), children benefit when trusted adults provide honest, age-appropriate information, maintain routines whenever possible, and create opportunities to ask questions and express feelings.
Parent Tip: If your child has difficulty expressing emotions verbally, look for changes in behavior, sleep, appetite, or daily routines.
Grief Is Not Only About Death
When people think about grief, they often think about death. However, families may grieve many different types of losses.
Parents of children with disabilities sometimes experience grief related to changing expectations, missed milestones, or uncertainty about the future. Children may grieve the loss of abilities following illness or injury. Families may also experience grief after divorce, relocation, loss of employment, changes in health, or disruptions in support systems.
These losses are real and deserve acknowledgment. Grief does not require a death to be valid. Recognizing and validating feelings allows individuals to process emotions rather than suppress them.
Parent Tip: Give yourself permission to acknowledge losses that others may not immediately recognize. Your feelings are still valid.
Healthy Ways to Cope with Grief
Although grief is painful, there are healthy strategies that can support healing over time.
Lean on Supportive People
The Centers for Disease Control and Prevention (CDC) recommends leaning on trusted friends, family members, faith communities, and support networks during times of loss. Social connection helps reduce isolation and reminds people that they do not have to navigate grief alone.
Maintain Routines
Regular mealtimes, bedtime schedules, school attendance, and family activities can provide comfort and stability, especially for children. Even small routines can offer reassurance when life feels overwhelming.
Parent Tip: When life feels uncertain, focus on keeping one or two familiar routines in place each day.
Remember and Honor What Was Lost
Many families find healing through remembrance activities. Creating memory books, sharing stories, celebrating anniversaries, planting a tree, or participating in cultural and religious traditions can help preserve meaningful connections. Remembering a loved one does not prevent healing; rather, it can help families integrate the loss into their lives in healthy ways.
Care for Physical Health
Adequate sleep, nutritious meals, movement, and time outdoors can support emotional well-being. While these strategies do not eliminate grief, they strengthen resilience and improve the body’s ability to cope with stress.
Use Creative Expression
Writing, drawing, music, crafts, and journaling can help both children and adults express emotions that may be difficult to put into words.
Parent Tip: Some children find it easier to draw, build, or play out their feelings rather than talk about them directly.
When Grief Becomes More Complicated
Most people gradually adjust to loss over time, even though feelings of sadness may continue. However, some individuals experience grief that remains intense and significantly interferes with daily life for an extended period.
SAMHSA notes that Prolonged Grief Disorder was added to the DSM-5-TR in 2022. Symptoms may include persistent yearning for the deceased, significant emotional distress, difficulty functioning, and grief responses that continue well beyond what is typically expected.
Families should consider seeking professional support when grief leads to:
- Persistent depression
- Severe anxiety
- Prolonged withdrawal from daily activities
- Significant behavioral changes
- Declining school performance
- Concerns about safety and well-being
It is especially important to seek help when grief follows a traumatic event, such as an accident, violence, abuse, or sudden loss.
Parent Tip: Seeking professional support is not a sign of failure. It is another way to care for yourself and your child.
Supporting Someone Who Is Grieving
Many people want to help grieving friends and family members but worry about saying the wrong thing. Often, the most meaningful support comes from simply being present.
Listening without judgment, acknowledging the loss, offering practical assistance, and checking in regularly can make a significant difference. Grief does not disappear after a funeral or memorial service. Support is often needed for months and even years afterward.
When supporting children, adults should encourage open conversations and answer questions honestly. Avoiding discussions about loss may unintentionally increase fear or confusion. Children need reassurance that their feelings are normal and that trusted adults are available to help them navigate difficult emotions.
Hope and Healing
Grief changes us. It can challenge our sense of security, alter family dynamics, and affect how we see the future. Yet grief is also evidence of connection, love, and meaningful relationships.
Healing does not mean forgetting. It means learning to carry the loss while continuing to move forward. Over time, many people discover that the sharpest edges of grief soften. Memories can become sources of comfort alongside sadness, and new routines can emerge as life gradually expands around the loss.
For families, patience and compassion are essential. Every person’s grief journey is unique, and there is no timeline for healing. By increasing awareness, reducing stigma, and encouraging support, we can help grieving individuals and families find hope, connection, and resilience.
Helpful Resources for Families
Utah Parent Center
National Resources
- SAMHSA: https://www.samhsa.gov/
- CDC Coping with Stress and Grief: https://www.cdc.gov/
- The Dougy Center (grief support for children and families): https://www.dougy.org/
- National Child Traumatic Stress Network: https://www.nctsn.org/
- Child Mind Institute: https://childmind.org/
- The Compassionate Friends: https://www.compassionatefriends.org/
Immediate Support
If you or someone you know is experiencing a mental health crisis or thoughts of suicide, call or text 988 to reach the Suicide & Crisis Lifeline, available 24/7.
Resources
- Substance Abuse and Mental Health Services Administration (SAMHSA). Coping with Bereavement and Grief.
- Centers for Disease Control and Prevention (CDC). How Right Now: Grief.
- National Child Traumatic Stress Network / SAMHSA. Childhood Traumatic Grief: Information for Parents and Caregivers.
- Grief Journal: LEFA
