Brain Injury Care Provider

Children and Motor Neurone Disease: Helping them understand

Motor neurone disease (MND) is a life-altering diagnosis that not only affects the person with the condition, but also their loved ones.

For families with young children, explaining the challenges associated with MND can be particularly daunting.

It’s vital to ensure that children are equipped with the right information and support to comprehend the situation and cope with its implications.

Explaining what MND is

The first step in explaining MND to a child involves breaking down the medical jargon into child-friendly language.

For instance, instead of explaining MND as a progressive disease that affects motor neurons, consider likening the neurons to little messengers in our body that help our muscles move.

When these messengers aren’t working correctly, our muscles don’t get the right instructions, making it difficult for the person with MND to move or speak as they usually would.

Once the foundation is laid, the conversation can be tailored depending on the child’s age, maturity, and emotional readiness.

  1. For younger children: Use visual aids such as storybooks or dolls to illustrate the situation. Be patient and repeat explanations if necessary. Use simple, concrete sentences to explain what they might notice, for example, “Grandma might find it hard to walk or talk because her muscles aren’t getting the right messages.”
  2. For older children and teenagers: They may be able to grasp a more detailed explanation. However, ensure that you’re also addressing their emotional concerns, giving them space to express their feelings, and answering their questions honestly yet sensitively. They might ask about life expectancy or the hereditary nature of the disease, so be prepared for such discussions.

Encouraging an open conversation

Reassurance plays a crucial role in these conversations. Children need to understand that it’s okay to feel a range of emotions – from fear to sadness, and even anger. Make sure they know that their feelings are normal and valid.

Remember, it’s not a one-time conversation. It’s a dialogue that should evolve as the disease progresses and as the child grows and develops a better understanding. Encourage them to keep asking questions and express their feelings throughout the journey.

Finally, it’s crucial to remember that every child is different. What works for one might not necessarily work for another. The key is to provide a supportive, loving environment where they feel safe to explore their feelings and ask questions. It’s a tough journey, but with understanding, patience, and open communication, children can navigate their way through this challenging situation.

At Almond Care, we take a holistic approach to ensure our clients’, and their families, needs are met and the care adapts as their needs change.

For a free, no-obligation discussion about our complex care in the home please click here or call 024 7610 2333.


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For a free, no-obligation discussion about our UK complex care in the home for brain injury, spinal cord injury, long-term ventilation, cerebral palsy, multiple sclerosis, muscular dystrophy and other neurological conditions, please click here or call 024 7610 2333.