Energy to Learn has been created especially for you – the educator

Energy to Learn offers practical strategies and resources to help students with mito succeed in the classroom. As a teacher, you play a vital role in enriching the lives of students with mito, and we hope this guide will make the journey smoother for both you and your students.

This guide will help you understand:

  • The effects of fluctuating mito symptoms on your student
  • How mito can influence health, behaviour and academic performance
  • Strategies to reduce the impact mito has on the student’s performance
  • Accommodations that can create a more positive school experience for students with mito.

Why Mitochondria Matter

Mitochondria are present in almost every cell in the human body. Creating more than 90% of our required energy, our mitochondria transform the food we eat and the oxygen we breathe into essential energy called ATP (adenosine triphosphate). This energy keeps our hearts beating, lungs breathing, brains thinking, and bodies moving; we simply cannot survive without our mitochondria. When mitochondria don’t function properly, they don’t produce the energy we need. Mitochondrial disease commonly affects energy-intensive systems such as the heart, liver, kidneys, brain, muscles, digestive tract, eyes and ears.

Mitochondrial disease (mito) refers to a group of disorders that result when mitochondria cannot produce enough energy, or an individual doesn’t have enough healthy mitochondria in their bodies.

Mito symptoms can be mild or severe, differ by individual, and depend on which cells of the body are affected. Mito affects different parts of the body, and individuals often have symptoms affecting multiple organ systems. Organs most commonly affected include the brain, nerves, heart, pancreas, liver, eyes, and kidneys. This is because each of these relies very heavily on energy production from the mitochondria to function properly.

Mito symptoms may include impaired hearing and vision, ataxia (challenges with balance, coordination and speech), seizures, learning disabilities, and poor growth. The two most common mito symptoms are muscle weakness and exercise intolerance, which leads to feelings of exhaustion.

Fatigue is a significant and debilitating symptom for children and teens with mito, affecting nearly every aspect of their lives. Since mito impairs the body’s ability to produce energy, children and teen’s often experience chronic and severe fatigue, which can:

  • Lower stamina and endurance
  • Lead to muscle weakness, twitching or pain
  • Affect vision
  • Delay physical development
  • Hinder concentration, sensory and information processing
  • Influence emotional well-being and behaviour

Students with mito may experience:

  • Abdominal pain, cramping
  • Nausea and vomiting, decreased appetite
  • Weight loss, malnutrition
  • Fatigue, drop in energy levels
  • Poor growth
  • Muscle pain or fatigue

Students with mito may miss school experiences due to:

  • Limited ability to participate in activities requiring strength or stamina, such as physical education or extracurricular sports.
  • Medication side effects that can affect concentration and overall well-being.
  • Regular clinic visits and potential hospitalizations.
  • Overall wellness challenges caused by mito.

When attending school, students with mito may face challenges such as:

  • Fatigue and reduced energy levels
  • Impaired focus
  • Impaired mood
  • Social discomfort or inhibition, emotional withdrawal, depression

Attendance:

  • Students with mito may need to take frequent absences from school.
  • You may need to offer accommodations such as an educational assistant (EA), as well as provide lesson notes, rest periods, extensions, and make-up exams.

Classroom Experience:

  • Fatigue or sudden drops in energy can occur at any time. Be prepared to allow frequent breaks as needed.
  • Students with mito may benefit from having a designated rest area.
  • In-home education may be necessary in some cases.

Physical Activity:

  • Students with mito may need to pace their activities to avoid overexertion.
  • Collaborating with the student and their parent(s) to identify appropriate exercises and support their strength-building efforts would be beneficial.
  • Low-impact activities, such as walking, can help improve muscle strength and stamina.
  • Ensure students with mito stay hydrated before, during and after physical activity.
  • Monitor for signs of fatigue or exhaustion, which may include:
  • Lightheadedness
  • Severe muscle soreness
  • Hearing loss
  • Blurred vision
  • Heart palpitations or chest pain
  • Being unable to talk

Mental Health:

  • Since students with mito may not know when a drop in energy or sudden fatigue will occur, the fear of not being near a comfortable place to rest may cause distress, making it difficult to relax and focus on tasks.
  • Students with mito may be at higher risk for depression or anxiety, which may show as irritability, frustration or low tolerance. Talk with the student and their parent(s) about how you can support them when these feelings arise in the classroom.
  • Collaborate with the student and their parent(s) on stress management strategies, and explore potential relaxation techniques. The following are a few stress management strategies to consider:
  1. Mindfulness
  • Mindfulness practices can be a valuable tool for managing stress. The following exercises may be helpful and are great options to share with students with mito and their parent(s).
  • Breathing Exercises: Simple breathing techniques, such as deep belly breathing or guided breath awareness, can help students with mito calm their nervous system, reduce anxiety, and manage pain.
    • Example: “5-4-3-2-1” breathing where students identify 5 things they can see, 4 they can touch, 3 they can hear, 2 they can smell, and 1 they can taste, while taking deep breaths in between.
  • Body Scanning is a mindfulness practice that involves paying attention to different parts of the body and noticing sensations. It can help students with mito build body awareness and manage discomfort or pain.
    • Example: A guided body scan that helps the student notice tension or discomfort without judgment, encouraging relaxation.
  • Mindful Movement: Gentle movement, such as stretching, chair yoga, or even adapted physical activities, can be used to help students with mito connect with their bodies in a positive way, even if they have limited mobility due to mitochondrial disease.
    • Example: Seated yoga or stretching exercises focusing on breathing and gentle movement.
  • Mindful Imagery: Encouraging students with mito to use their imagination to picture a place where they feel safe and calm, guiding them to mentally “visit” this space when they feel anxious or in pain.
    • Example: A “safe place” meditation where they visualize themselves in a peaceful environment.
  1. Socio-Emotional Practices
  • Emotional Check-ins: Regularly ask students with mito to express their feelings through drawings, journaling, or verbal expression. This helps them articulate emotions related to their illness, such as frustration, sadness, or fear.
    • Example: A “feelings thermometer” where they can rate how they feel emotionally or physically at different points in the day.
  • Peer Support Groups: Creating a supportive environment where MitoStudents can talk with peers experiencing similar challenges. This can help normalize their feelings and reduce isolation.
    • Example: A lunch group for students (living with health challenges) to talk about their experiences, share coping strategies, or simply bond over shared challenges.
  • Resilience Building Activities: Teaching students with mito strategies for coping with setbacks, frustration, or physical limitations can empower them to feel more in control of their situation.
    • Example: Storytelling exercises where they recount a time they overcame a challenge, helping them recognize their strengths.
  • Gratitude Journaling: Encouraging students with mito to keep a gratitude journal where they write or draw about positive experiences, even small ones. This can help shift focus from the negative aspects of their illness to positive moments.
    • Example: A “3 Good Things” journal where they write three things that went well that day.
  • Self-Compassion Practices: Teaching students with mito self-kindness practices can be particularly helpful, especially when dealing with the frustrations and limitations caused by chronic illness.
    • Example: A guided exercise where they practice talking to themselves as they would to a friend in a similar situation, with kindness and understanding.

     3. Classroom Integration:

  • Calming Corners: Creating a designated space in the classroom where students can go to practice mindfulness or self-soothing techniques when they feel overwhelmed.
  • Mindfulness Breaks: Incorporating short mindfulness breaks into the day for the whole class, which can help normalize these practices and benefit children with chronic illness (like mito) without singling them out.

Medications and Infections:

  • Medication side effects can impact both academic and/or social performance
  • Some medications may weaken a student’s immune system, so inform parent(s) about any infectious illnesses in the school and the classroom.
  • Students should avoid contact with classmates who have infections or contagious illnesses.
  • Promoting good hand hygiene and encouraging students to cover coughs and sneezes is an effective preventative measure.
  • Ask parents to keep you updated on any medical changes and share your observations of the student with their parent(s).

Dealing with Pain:

  • Children and teens may not always inform adults when they are in pain, and some may prefer privacy during such times. If you suspect your student with mito is in pain, discreetly ask them and offer the option to leave the classroom and rest in a predetermined rest location.

Motor Skills:

  • Fine motor training – Students with mito may struggle with developing coordination and strength in small muscles of their hands and fingers. Activities such as holding pencils, crayons or markers to write, draw, trace or colour can help. Cutting with scissors, building with small blocks and assembling a puzzle can be beneficial.
  • Motor skills may fluctuate, meaning a students with mito might successfully complete a task one day but find it difficult the next.

Certain school personnel, including you, the principal, and the resource teacher, should be part of an inner circle informed about your student’s mito. Other staff members should also be aware of the student’s needs. For instance, the student may require regular access to the nurse’s room for rest.

Decisions about disclosing mito to classmates are best left to the student with mito and their parent(s). Some children and teens are eager to share information about their condition, while others may prefer to keep it private or find themselves somewhere in between. Discussing the student’s preferences fosters trust and promotes their sense of autonomy.

Helping classmates understand

To help your class better understand mito, you can share some basic information – just be sure to first ask the student with mito for permission to ensure they are comfortable with this:

Here are some helpful facts:

  • Students with mito may need to take frequent rest breaks
  • Mito can be unpredictable. One day, the student might feel well and the next day, they might not.
  • Some people with mito may follow a special liquid diet and cannot eat regular food, while others need to eat multiple small meals throughout the day.
  • Staying hydrated is important for some with mito, so they may need access to fluids throughout the school day.
  • Students with mito can be very sensitive to temperature and may need the classroom to be cooler in the warmer months and warmer in the colder months.
  • Students with mito might miss school, sometimes for extended periods.

 

Field Trips and Extra-Curricular Activities

Students with mito should be able to participate in school excursions with appropriate accommodations when needed. Discuss upcoming field trips with the student’s parent(s) as early on as possible and collaborate with them to ensure the student has the necessary accommodations and modifications to take part in off-site activities.

If the school doesn’t offer suitable intramural or extracurricular sports for the student, explore the student’s interest and consider starting a team that accommodates their abilities.

Returning to School After Absence

While school can be challenging at times, attending helps students with mito stay connected to the school community, build and maintain friendships and engage in classroom learning and social interactions. Social adjustment is just as important as academic success. As a teacher, you can observe signs of social distress, such as difficulties with peers, avoiding social activities, or reluctance to attend school. In such cases, inform the student’s parent(s) and help establish an appropriate support system.

Based on the student’s academic needs and performance, the resource teacher may suggest scheduling an Individual Education Plan (IEP) meeting with faculty, administrators, special education staff, and parent(s).

Classroom accommodations are important for students with mito because this condition can significantly impact their physical, cognitive, and emotional well-being and affect their ability to participate fully in traditional school settings.

Accommodations help ensure that students with mito have equitable access to education and can engage in learning at the same level as their peers, maximize their educational potential, reduce stress, and improve their quality of life.

Consider the following accommodations for students with mito:

  • Allow for rest breaks throughout the student’s day to help conserve energy
  • Identify one or two rest locations the student can access when they feel fatigued. The nurse’s room could be used for naps, while the library could serve as a quiet space for rest when a nap is not needed.
  • Do not penalize a student for tardiness or absences related to managing their mito
  • When the student is unwell or fatigued, reduce the amount of classwork or homework required for that day or week.
  • Avoid scheduling more than one test or exam per day unless the student chooses to do so, as they understand their energy levels best.
  • Offer “stop-the-clock testing” without penalty, allowing the student to take breaks during exams, with the test duration extended by the time taken for those breaks.
  • Allow the student to use their educational assistant during tests or exams (i.e. scribing) if requested.
  • Provide accommodations for audio, writing and processing if needed
  • Ensure easy access to food and hydration during the day
  • Offer the student preferential seating, if preferred.
  • Assist the student in catching up on missed class time and work, including waiving, modifying, or substituting assignments as necessary.

The following resources have been curated to help you provide them with the best possible support for students with mito:

Resources to support mito students with:

 

Classroom Adjustments

The Nationally Consistent Collection of Data on School Students with Disability (NCCD) is an Australian initiative that collects data on students with disabilities and builds resources to support teachers and students. Discover over 20 different podcasts providing examples of common adjustments teachers can make in the classroom. Topics covered include hearing loss and visual impairments, autism and ADHD, developmental language disorder, epilepsy and more.

Energy to Learn was developed by MitoCanada through an education grant from Ultragenyx.

Disclaimer: The content in this education resource guide is for informational purposes only and should not be substituted for professional medical advice.