Why do we talk about grief and loss when we talk about disabled children?

I recently attended a workshop on working effectively with parents. One activity involved listening to a mother’s morning routine and reflecting on how she might feel as tried to get her daughter to school who was finding it difficult due to sensory overwhelm linked to Autism and ADHD. During the discussion, the faciltitator spoke about how the mother may have felt grief and loss.

I took umbrage at this. As a parent of disabled children, I don’t feel grief or loss about my children or their disabilities. Why would I? They are here.

When Z was born, she required oxygen for seventy minutes. If the worst had happened, the grief and loss would have been immeasurable. But it didn’t. She is here. Because she is here, I feel joy and celebration for what she can do, not a sense of loss for what she can’t. She stood up on her own three weeks ago and has started walking at two years and one month old. Why would I grieve that?

I grieve for those who are no longer here. But not for my children, who surprise and delight me daily.

Working with Parents Effectively

Returning to the workshop and its central question; how can we work effectively with parents? When we ask this, we are usually talking about parents whose children find school challenging. These are often children who are marginalised for a variety of reasons, those with special educational needs, medical needs, or difficulties with impulsivity and attention. They are the children at risk of exclusion, not because of who they are, but because the structures around them struggle to be flexible to meet their needs.

Some parents may also carry their own difficult school experiences. My mother, for example, still recounts stories of having her mouth washed out with soap by teachers. Why would she automatically trust that educators had my best interests at heart?

To work effectively with parents, we need to step back and understand the bigger picture. Without making them relive every detail, we must be able to empathize quickly and remain curious about their child’s experience. The workshop activity, where we considered the reality of a mother trying to get her child to school while balancing family commitments, was a valuable exercise. And perhaps this is where the language of grief comes from: an attempt to acknowledge the emotional complexity of parenting a child who struggles in an inflexible system.

Practical Tips for Working with Parents

1. Listen without assumption – Parents have different perspectives on their child’s experiences. Perhaps some may feel grief; others may feel pride and resilience. Let them define their emotions.

2. Avoid pathologising parental emotions – Acknowledge that raising a disabled child comes with challenges, but don’t assume parents see their child through a lens of loss.

3. Consider the whole family – Understand the wider pressures families may face, including work, siblings, and access to support.

4. Foster trust and collaboration – Some parents have had negative experiences with school systems. Building trust takes time, consistency, and respect.

5. Be flexible in communication – Some parents may prefer face-to-face meetings, while others may find email or phone calls more accessible. Adapt to their needs.

6. Encourage strength-based conversations – Instead of focusing solely on difficulties, highlight what the child can do and how to build on their strengths.

7. Acknowledge systemic barriers – Recognise that it’s often the system, not the child, that needs to change. Work with parents to advocate for meaningful adaptations.

8. Be accountable – if you say you are going to do something, do it, if you can’t, then explain and be transparent about the challenges