MitoAction Creates Back-to-School Checklist for Parents of Children with Mitochondrial Disease

Margarida Azevedo, MSc avatar

by Margarida Azevedo, MSc |

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Summer is over and school is back in session — and so are homework, quizzes, and projects for students. For some children and their parents, however, these are the small things to worry about when returning to school. Children with chronic conditions such as mitochondrial diseases often need to take extra precautions to ensure their time at school remains complication-free and conducive to learning and interacting with their peers.

MitoAction, a not-for-profit organization committed to improving quality of life for all who are affected by mitochondrial disorders through support, education and advocacy initiatives, recently published a Back-To-School checklist for these children’s parents. It was discussed online by guest speakers Annette Hines, JD of Special Needs Law Group of Massachusetts and Cristy Balcells, MitoAction’s Executive Director last August 26, 2015.

To ensure your child stays safe and looked after in his/her schooling environment, MitoAction recommends the following:

  • Review – or create — your child’s Individualized Health Care Plan.
    • Make sure it has the most up-to-date treatment information, medication list, and doctors.
    • If your child has changed schools or classrooms, does it need to be adapted for the new location or schedule?
    • Pack extra snacks and fluids that can be kept with the child at all times.
    • Use a backpack with wheels to lessen muscle fatigue, and a stroller or wheelchair between distances to conserve energy.
  • Schedule time to meet with your child’s school nurse and teacher to share any changes or new information.
    • The more comfortable they are with your child’s medical issues, the less conflict you are likely to have throughout the year.
    • Discuss new diagnoses, new reports, or evaluations.
    • Talk about how things went at summer camp or summer programs. Did anything go particularly well that you can integrate into the educational setting?
    • Give your child’s teachers and nurses a small card with all of your contact information, reminding them that you are only a phone call away if they have ANY questions or concerns during the day.
    • Bookmark and use the “Tools for School” section, which includes Sample IEP plans, letter templates, protocols, daily checklists, etc.
    • Some schools require a contract for liability with the home healthcare provider — make sure this is in order.
    • Set up a notebook or other form to report back and forth on healthcare issues between home and school.
  • Tour the school and see if there are any obstacles for your child.
    • Are there elevators and are the classrooms spaced well for him or her?
    • Are there medications or special food that need to be refrigerated?
    • What are the emergency procedures for your child?
    • Do you need to call a TEAM Meeting to discuss these issues in a more formal manner?
    • Advocate for your child’s schedule to be adjusted to suit “best times of the day.”
    • Request a free copy of MitoAction’s ENERGY 4 EDUCATION DVD – a great way to get teachers and therapists up to speed on mitochondrial disease in less than 10 minutes!
  • Plan ahead to minimize exposure to illness.
    • Buy the classroom teacher a giant bottle of antibacterial gel and request that it be kept by the door where students can use it every time they go in and out of the room.
    • Ask that your child’s teacher and school nurse let you know if there is a known contagious illness in the classroom.

Mitochondrial disease is an inherited chronic illness that can be present at birth or develop later in life. It causes debilitating physical, developmental, and cognitive disabilities with symptoms including poor growth; loss of muscle coordination; muscle weakness and pain; seizures; vision and/or hearing loss; gastrointestinal issues; learning disabilities; and organ failure. It is estimated that 1 in 4,000 people has Mito. The disease is progressive and there is no cure.

Given the burden of the disease on children, adopting a Back-To-School checklist like this one is invaluable in helping to make the transition back to school for children with mitochondrial diseases as easy as possible,