Nerodivergent Children and Grief

Navigating the serious illness and eventual loss of a family member is incredibly difficult for any family. This handout is designed to support you, the co-parents, as you guide your elementary school-aged children through this challenging time. By working together, you can provide a stable and loving environment for your children, even while navigating separate households. Some children, particularly those with ADHD and autism, may experience and express grief in unique ways. This article includes specific considerations to support their needs.

The Role of a Parenting Coordinator

As your Parenting Coordinator (PC), my primary role is to help you collaborate effectively and make decisions that consistently prioritize your children's best interests. During times of significant emotional challenge, like the impending loss of a grandparent, this role becomes even more crucial. I'm here to facilitate communication, help resolve disputes, and refer you to appropriate resources and strategies to support your children's emotional well-being and grief process. My aim is to ensure that, despite the family's pain, the children receive consistent, thoughtful, and sensitive care.

Understanding Your Child's Grief

Elementary school children (roughly ages 5-10) are just beginning to grasp the concept of death. They may:

• Feel a mix of emotions like aadness, anger, confusion, fear, or even guilt. These feelings can shift quickly.
• Ask practical questions like, "Will Grandma feel pain?" "Where will Grandpa go?" "Will I get sick too?" It's best to answer these questions honestly and simply.
• Show changes in behavior such as increased clinginess, irritability, sleep difficulties, changes in appetite, or a return to earlier behaviors like bedwetting.
• Use "magical thinking" meaning they believe their thoughts or actions caused the illness or could cure it. Reassure them it's not their fault.
• Grieve in "puddles" meaning they grieve in short bursts, moving in and out of sadness. Being sad one moment and playing the next is completely normal.
   
  Special Considerations for Children with ADHD and Autism

Children with ADHD and autism experience and express grief in unique ways. Understanding these differences can help you provide more effective support.

Children with ADHD may:

• Struggle with emotional regulation. Grief can intensify emotions, leading to more frequent meltdowns, increased impulsivity, or difficulty managing frustration.
• Have trouble with attention and focus. Processing difficult information about the illness and loss can be challenging. They might seem disengaged because they're struggling to focus on overwhelming emotions or conversations.
• Show increased restlessness or hyperactivity. Grief can manifest as physical agitation.
• Find abstract concepts difficult. The finality of death can be particularly hard for them to grasp.

Children with Autism may:

• Prefer concrete information. Abstract phrases like "passed away" or "gone to a better place" can be confusing. Literal explanations are usually more helpful.
• Experience heightened sensory sensitivities. Changes in routine, new environments (like hospitals or funeral homes), and intense emotional atmospheres can be overwhelming.
• Have difficulty understanding and expressing emotions. They might not express grief in expected ways, but this doesn't mean they aren't feeling it deeply. Distress might show through behavioral changes, increased stimming, or withdrawal.
• Thrive on routine and predictability. Disruptions caused by illness and loss can be especially distressing.
• Form intense attachments. The loss of a beloved grandparent can be profoundly felt, even if not expressed outwardly.
• Face challenges with social communication. Understanding social cues related to grief and offering or receiving comfort can be difficult.
   
  Guidance for Co-Parents: Working Together Across Households
  

This challenging time is an opportunity to show strong co-parenting, providing consistency and security for your children, even with separate households.

1. Communicate Openly and Respectfully (Between Co-Parents)

• Share information consistently. Discuss how you'll talk to the children about their grandparent's health, ensuring you present a unified message.
• Coordinate across distances. Plan visits and interactions with the grandparent, considering travel time between homes. Be flexible and understanding of each other's schedules and emotional needs, especially regarding travel and logistics.
• Support each other's emotional well-being and acknowledge the grief. Offer empathy and understanding as your co-parent navigates their own feelings and supports the children.
  Share specific observations. Follow the Communication Agreement to discuss important observations of how each child is reacting, noting any sensory sensitivities, changes in routines, or communication patterns, especially considering their time in both households.
• Collaborate on tailored explanations. Work together to find the most effective and understandable language for each child, ensuring consistency regardless of which parent is present.

2. Talking to Your Children About Illness and Loss

• Be honest, gentle, and age-appropriate.Use clear, simple language. Avoid euphemisms like "passed away" or "gone to sleep," which can be confusing and frightening. Use direct words like "dying" and "dead."
• Prepare your children for changes. Explain that their grandparent may look different, feel weaker, or be less active. Prepare them for medical equipment (e.g., oxygen tanks) if they will see it.
• Allow for questions and emotions. Create a safe space for them to ask anything, no matter how difficult. Validate their feelings by saying things like, "It's okay to be sad/angry/scared."
• Reassure your children about their own safety and health. Emphasize that the illness is not contagious and they are safe.
• Focus on love and memories. Talk about happy memories with their grandparent. This helps keep their spirit alive and provides comfort.
• Be concrete and visual. Use social stories, visual schedules, or timelines to explain the illness and what to expect. For example, a simple picture timeline showing, "Grandma is sick," "Doctors are helping Grandma," and then "Grandma's body stopped working" can be helpful.
• Break down information into smaller chunks. Present information in manageable pieces, allowing for frequent breaks or changes in activity.
  Provide opportunities for questions at their own pace. Some children may need time to process information before asking questions. Don't pressure them.

3. Supporting Your Children Through the Process

• Maintain routines as much as possible, in both homes: Predictable routines provide comfort and a sense of normalcy during a chaotic time. Strive for consistency across both households as much as feasible.
• Provide outlets for them to express their feelings – drawing, playing, talking, or writing.
  Offer comfort and physical affection: Hugs, cuddles, and just being present can be incredibly soothing.
• Allow your children to participate in goodbyes (if appropriate). If the grandparent is open to it, allowing children a chance to say goodbye can be helpful. This could be a visit, a video call, or a special message. Do not force them if they are unwilling.
• Prepare them for the funeral/memorial service (if they attend). Explain what will happen, what they might see, and that it's okay to cry or feel sad. Give them a choice about attending.
• Remember the grandparent after the loss. Continue to talk about the grandparent, look at photos, and share stories. This helps normalize grief and keeps their memory alive.
• Maintain visual schedules and predictable routines.This provides security during a time of change.
• Prepare your children in advance for any deviations from the usual routine, especially during transitions between homes.
• Create a safe and quiet space. Allow your children to retreat if they feel overwhelmed by emotions or sensory input, ensuring they have such spaces in both homes.
• Offer sensory supports. Provide access to preferred sensory items (e.g., fidget toys, weighted blankets) that can help them self-regulate. These should be available in both homes if possible.
• Use timers or visual cues for transitions. Prepare them for changes in activity or location, such as the end of a visit or the start of a conversation, particularly when transitioning between parents.
• Allow for movement and breaks. If attending a gathering, ensure opportunities for physical movement.
• Connect emotions to concrete examples. Help them understand emotions by linking them to specific situations or facial expressions, using visual aids if helpful.
• Practice expected behaviors. If your children will be attending a funeral or memorial, talk about what will happen and what behaviors are expected in a calm, supportive way. Social stories can be particularly useful here.
• Focus on what your children can understand and participate in. They might want to draw a picture, choose a song, or light a candle. Offer concrete ways to remember their grandparent.
  

Self-Care for Co-Parents

• Acknowledge your own grief. You are experiencing a profound loss. This is a unique and incredibly painful time.
• Be kind to yourself. There's no "right" way to grieve. Allow yourselves space to feel your emotions.
• Model healthy coping. Your children learn from watching you. Showing them how you cope with sadness, seek support, and find moments of joy is valuable.
• Schedule brief, regular check-ins to discuss how each child is coping and adjust strategies as needed.
• Acknowledge different coping styles. Understand that you and your co-parent may also grieve differently. Respect these differences while maintaining a united front for your children.
  

Leveraging Existing Supports and Seeking Further Professional Guidance

Continue to work closely with your children’s counsellor. The counsellor is familiar with your children's individual needs and can provide tailored strategies and ongoing emotional support.

Additionally, if you have a Speech-Language Pathologist (SLP), reach out to him or her. SLPs often work on social communication, emotional regulation, and communication strategies, which are all crucial areas for children with ADHD and autism when coping with grief. They can also help facilitate conversations and understanding of complex topics like death.

Remember, there is no one-size-fits-all approach to grief. Be patient with yourselves and your children. Your love and consistent support are the most important gifts you can give them during this challenging time. Leveraging existing support networks and coordinating closely with your co-parent will be vital in helping your children navigate this difficult journey.

Written by Cori L. McGuire, a Parenting Coordinator with 28 years of family law experience in British Columbia. Cori has 28 years of experience with parenting children who are affected by ADHD and autism spectrum disorder. Read more about unique considerations when introducing Smartphones or Smartphones and NeuroDiversity other reading in our extensive Resource Library.