Key Points
- This resource provides tools to best help your child manage symptoms of mitochondrial disease (mito) at school.
- By working in tandem with teachers and educators you and your child can find a way to manage mito while at school.
- The Considerations for Starting School resource is for parents who are about to start their educational journey, or children who may be starting at a new school.
Download the Managing Mito at School Information Sheet.Â
The Advocating For Your Child at School Information Sheet provides information on how to advocate for your child and their needs at school.
Managing your child's fatigue at schoolÂ
Fatigue is a symptom that almost every child with mito will experience. You might find that, due to their illness, your child finds it difficult to finish their schoolwork or zones out during class.
Coordinating a plan for your child’s fatigue with their teacher is essential to help them get the most out of their school day. Organising an area in the classroom where they have the freedom to rest can help children have a break and go back to their work refreshed. This space could include some pillows or even a little tent so they are removed from sensory input and can rest and refresh.
Mito fatigue can present as muscle weakness. This muscle weakness/fatigue will affect muscle coordination, physical movement, talking and the ability to think, see and hear. There can also be changes in your child’s behaviour and mental health.
Schools can help children with mito manage their fatigue, by considering that they may need:
- change their position often
- have a chair up against a wall to help support the upper body
- ensure there is enough room to have a wheelchair next to their chair
- bean bags can be used in classrooms to help manage changing positions and can provide opportunities to stretch out and reduce energy expenditure.
Managing temperature variations
Children with mito can be sensitive to heat and cold. Extreme temperatures can cause worsening of symptoms. Schools can help manage challenges with temperature variations, by considering what your child may need.
This includes:
- being placed in classrooms with controlled temperatures
- considering the amount of time your child spends outside
- putting a plan in place to combat temperature sensitivities i.e., hats, clothing, and limited sun exposure.
Nutrition
Children with mito will benefit from being well-nourished. This often means more intake than the average child. Making sure they have regular snacks with good nutritional content can make a difference to how they manage their fatigue and workload.
Tips to help with nutrition at school
- Ensure regular eating, including snack times.
- Ensure your child eats nutritious foods at break times. More substantial snacks include full-fat yoghurt, cheese, milk, and snack-sized meats.
- Communicate with the teacher and your child the importance of nutritious snacks and how to recognise a decline in energy for the student.
- Consider the needs of your child when eating. They may take longer due to difficulty chewing. They need to be given the opportunity to be at rest when eating. They may also need supervision with eating or if older may require privacy when eating.
Event and PE options
Although most primary school-aged children are keen to keep up with their peers and attend after-school activities such as sports, it’s important to consider the effect that this will have on their health and energy levels. Extra support may be needed on those days to help manage your child’s energy expenditure.
Participation in sport
- Teachers can help children participate in activities and events or to be involved as a volunteer. Teachers are encouraged to plan with the family around school events.
- Sport may not be a daily occurrence for some children affected by mito.
- Understand that fatigue levels can change from day to day. This may present as differences in participation level and behavioural changes.
- If outside, a hat, water bottle, and sun protection needs to accompany your child.
Have a plan for excursions, PE classes and school events e.g., cross country. Children can still attend when a plan is in place. Inclusion is imperative.
Disclaimer: Resources provided by the Australian Mitochondrial Disease Foundation Limited (Mito Foundation), offers general information and is not a substitute for medical advice. It is essential to assess the suitability of the content for your individual circumstances and make decisions based on your medical condition. The information’s accuracy is subject to change, and we do not guarantee ongoing currency or availability. While efforts are made to ensure accuracy, Mito Foundation is not obligated to provide updated information. The copyright for this document and its content belongs to, or is licensed to, Mito Foundation, and reproduction without prior written consent is prohibited.
Author(s): Mito Foundation
Version: 1
Date published: 17 January 2024Â Â Â Â Â
