The Bereaved Child

Tonight I remember.
Your sparkling light,
Your voice and your laughter
as music.
The tender touch, a tiny tickle,
Which made me happy and let me giggle.
Your scent and your hugs,
Enveloped me with comfort and joy.
Fierce and brave.
No other has me known better.
With you –
I am safe.

BOS Awareness Day 2026

Bohring-Opitz syndrome (ASXL1) is a rare neurodevelopmental disorder caused by a genetic mutation in the ASXL1 gene. It often involves severe developmental delays and distinct facial features, and due to medical complications, infant mortality is high. Only a few reach adulthood. Aside from the difficulties of raising a child with so many challenges, the greatest fear is that we will lose our beloved children far too early.

But what happens when a parent dies? It is with great sadness that, in this 15th year of the parents’ support group’s existence, we must face the sudden loss of two moms, who were the center of the lives of two BOS children. The void they left is enormous and gives intense grief.

There are resources and support systems for children with special needs who have lost a parent, as well as organizations that specialize in this specific type of grief. Like any other child, our children need their grief to be recognized and understood. How does our child experience loss? How can we support them while dealing with our own grief? We learned that our children can have a far deeper understanding than they are able to express, and this is something we should all take on board.

Some children may not respond to the death of someone close to them in the same way as neurotypical children, due to difficulty expressing feelings and a dislike of changes to routines. However, this doesn’t mean they’re not grieving.

As with any child, how you support a child with Bohring-Opitz syndrome will depend on your understanding of their needs, as every child is different. Therefore, there is no set way in which a bereaved child will express their grief or one way in which we should support them.

Here we try to cover a range of things to consider when supporting a bereaved child with special needs and suggest ways in which you might be able to help.

Immediate Steps for Families

Maintain Routine: For children with special needs, predictability is a safety mechanism. Keeping daily schedules as consistent as possible can reduce anxiety.

Use Clear Language: Avoid euphemisms like “gone to sleep.” Use direct, simple terms (e.g., “Mom’s body stopped working”) to prevent confusion or fear of sleep.

Connect with Peer Groups: Finding other children with similar experiences (both in terms of disability and loss) can be incredibly validating. Many organizations offer online or in-person peer groups.

Types of Support

1. Therapeutic Play and Art Therapy:

Children with special needs often communicate better through non-verbal means. Specialized therapists use art, music, and play therapy to help them process emotions they cannot yet articulate.

2. Visual Aids and Social Stories:

Organizations like the Dougy Center provide “Social Stories” – short, illustrated narratives that explain what death is, what will happen after a funeral, and how feelings might change. This is crucial for children with autism or cognitive delays.

3. Respite Care and Family Support:

Losing a primary caregiver creates an immediate crisis. Many organizations offer temporary respite care to give the remaining parent or new guardians a break, ensuring the child’s routine remains stable.

4. Legal and Financial Planning:

For families with special needs children, losing a parent can disrupt long-term care plans. Non-profits like – The Arc (in the US) or local equivalent organizations can help navigate Special Needs Trusts and government benefits to ensure the child’s future care is funded. (Further read at Themfirm)

Specialized Support Organizations

The Dougy Center (USA): A leading non-profit providing grief support specifically for children and families. They have resources tailored for neurodivergent children, including visual guides and social stories to explain death.

Child Bereavement UK: Offers a wide range of services, including “Bereavement Support for Children with Disabilities,” recognizing that children with special needs may process grief differently. They provide one-on-one support and group sessions.