Resources and Support Around Grief and Loss

Grief and loss are deeply personal and often difficult experiences — and yet they are universal. At the request of the community, the NFXF hosted a special webinar to explore this important topic with compassion and care.

The webinar opened by creating a shared definition of grief and loss. Panelists defined grief as the internal thoughts, feelings, and mind and body experiences associated with loss, while mourning is often the cultural, sometimes ritualized, or visual representation of grief and loss. It can be hard to ‘see’ grief, but mourning practices can help everyone- including individuals with Fragile X syndrome- understand that something significant has happened.

The panelists were compassionate and clear in explaining the complexities of grief, which are true for all of us navigating this tricky subject, and encouraged attendees not to make grief any more complicated or confusing than it already is. Using concrete language to describe the events- “Grandpa is dead, he died” — was one of their top recommendations. Panelists emphasized the importance of modeling grief — you are allowed to cry, express yourself, and feel your own grief — which helps to foster an open dialogue. Another helpful suggestion was to ritualize grief; panelists encouraged the audience to utilize their loved one with FXS’s strengths to determine a way to celebrate the person they are grieving. One example from the community was hosting an annual birthday celebration for their dad, who had died. This keeps his memory alive, celebrating his legacy, sharing memories, and encouraging the family to stay connected.

There are ways to support every individual at every level of need; consider adding the dead loved one to an AAC device so they can be brought up as needed, encourage art as a form of expression, and encourage opportunities for sharing feelings. Keep an eye out for behaviors and physical manifestations of grief. If their grief is not addressed or encouraged, it can be common for individuals with intellectual/developmental disabilities to have physical manifestations of grief, including new or worsening behavior problems or physical illnesses. Panelists noted, “behavior is a window,” and encouraged attendees to explore new or worsening behaviors after the loss of a loved one.

One of the most common questions the NFXF receives is, “What will happen when I am gone?”. While we don’t know, we are here to help. Our panelists suggested making death a topic of conversation in life as it comes up. For example, if you see a dead bird, describe that to the individual with FXS, help them understand what death is and what it means for the bird.

In Summary

• Acknowledge that grief is valid: Grief is not linear, there’s not “one right way,” and feeling many emotions (anger, regret, numbness) is normal.
• Reach out for help: Consider using both formal (therapist, bereavement counselor) and informal supports (friends/family, peer groups). Maintain connections but also permit yourself to step back when needed.
• Use rituals to commemorate loss: Rituals (even small ones) can help give shape to loss, mark meaningful transitions, and offer everyone something to hold on to.
• Set boundaries and self-care: Grief can be exhausting; knowing when to say no and taking time to rest is vital.
• Use creative expression: Journaling, art, and music can help people process what is inside. Sometimes it’s easier to express grief indirectly.
• Normalize grief’s aftermath: Talk about how grief often brings lasting change, and that there’s usually not “going back” to exactly how things were—but there is a way forward.
• Plan for particularly hard times: Holidays, anniversaries, birthdays may be especially hard, so plan how to manage those moments. Consider a grief ritual and include your loved ones in the planning process!

Most importantly, the panelists provided many great resources for the Fragile X community to explore:

Resources about Grief and Loss (The Boggs Center on Disability and Human Development)

• Helping People with Intellectual and Developmental Disabilities Process Grief (also available in Spanish)
• Responding to Grief Reactions of People with Intellectual and Developmental Disabilities (also available in Spanish)
• Ritualizing Grief with People with Intellectual and Developmental Disabilities (also available in Spanish)

Grief Resources for People with I/DD (The Arc, Illinois)

Grief & Developmental Disabilities (The Dougy Center)

Special Collaboration Program – Fernside (Fernside Center for Grieving Children)

I Have a Question about Death: Clear Answers for All Kids, including Children with Autism Spectrum Disorder (Amazon)

Our sincerest thanks to Suzanne, Caitlin, Arlen, and Margaret for their guidance on this topic. We appreciate knowing the Fragile X community has friends who are willing to tackle the tricky subjects with us!