Creating a positive grade school experience


The Information Point for Centronuclear and Myotubular Myopathy

Receiving the President's awardAs any family with a child with a myopathy knows, the daily routine for our kids can be a challenging. In addition to the regular routines of life, our kids have medical treatments added on. The medical challenges like fatigue or requiring extra time to complete tasks can make simple chores seem like a marathon to accomplish. Given these challenges that's one of the things that made our son's recent grade school graduation cause for true celebration.

Our 11 year old son, AJ, has centronuclear myopathy, genetic form unknown (suspected autosomal recessive). He recently completed his grade school, 5th grade education with high honors. He earned the President's Award for Educational Excellence for straight A's in 4th and 5th grade. We were thrilled. With all the daily challenges AJ faces we were so excited that he could achieve this academic success. We are happy that he has that proud feeling to hold in his heart to make him feel good when he cannot do everything that other kids can, like sports, etc.

This success was achieved inside of a whole community of support and the result of much teamwork. AJ attended his mainstream school like all the other children in our neighborhood. Over the years, we were able to establish a wonderful working relationship with his school team and we now look back on his grade school years with true affinity for his school and its staff.

One example of support included a school walkathon that raised $10,000 for centronuclear myopathy research. We had support from the parent teacher association (PTA) modifying activities to include AJ and financial support for adaptive playground equipment. PTA parents and leaders often reached out to us to make sure that AJ was included and necessary adaptations were made (e.g. transporting his nurse and wheelchair to the 5th grade class trip to Broadway in New York City, field day participation and much more).

We worked together with our child study team to create a supportive individual education plan (IEP). This often involved creating new paths together since a very bright child with a physical disability and high medical needs is not the typical special education student. We received tremendous support from our school principal and school nurse. We always felt that the principal and nurse were looking out for AJ's best interests and advocated for him with administration as needed. We had tremendous support from the teaching staff. They worked with us to create understanding and inclusion from the student body. If your principal, school, community peers are not supportive, try to make suggestions to build that support over time.

AJ's principal says 'the principal should know the needs of each student in his/her building, especially those requiring extra attention or having special needs. It is imperative that the principal works closely with the school nurse to learn about the student's needs and how to assist, making all accommodations necessary to provide a safe, healthy environment for the student(s).

Working with parents is essential as well. Most parents voice their needs through the school nurse, which in turn presents them to the principal. However, it is a team effort and the parents, school nurse, and principal need to make the decisions that are best for the student(s) together. At that point, the teachers and staff are educated on the health plan created. When and if appropriate, classmates are to be educated along with their parents.'

It is our wish that every child with myopathy have academic and social success within a supportive school environment. Below are a few tips that we learned along the way.

Educate yourself

Learn your rights. Start to learn what the rules are in your area regarding a child with a disability's right to a free, public education. You can request in writing a summary of your special education laws from your school. In the US, states are required to offer some kind of parents support groups. We found that we learned the most about our rights by meeting with other parents and attending local lectures on special education rights laws. Our town has an organization for parents of children with disabilities called Pathways for Exceptional Children. We we learned a lot from this organization and met many other parents. You can ask your school if they have a parent's support group. Your school district may also offer workshops outlining your rights. You can also go to the website for your state's special education department since they often outline the laws on their websites. Ours is the State of New Jersey Department of Education. Knowing what is available to help your child in the education system help you to be a better team member.


A child's educational plan is developed by a team. This team includes school employees but also includes parents and health care professionals. Private therapists and doctors can be key members to help making a safe and healthy education plan. Having prescriptions and/or letters from your doctors outlining your child's diagnosis and medical needs while in school help guide the team in making a good plan.

Encourage awareness and acceptance by peers

We worked with teachers, nurses and the guidance counselor to help children understand AJ's differences and accept him as a peer. The approach we took was being open with AJ about his condition, from a young age.

The President's awardStarting in kindergarten, we spoke openly with his classmates about his differences in a broader context of 'everybody's different'. We used books as resources and encouraged open class discussion. We found that kids were curious and wanted their questions answered openly so there was nothing to hide or to be ashamed of. We sent a note home to the parents explaining 's disability and encouraged them to discuss it with their children and to call us directly if they had any questions. AJ also gave his own talk to his class, which changed over the years. AJ formed many strong friendships throughout his grade school years.

Two of the books we found helpful were 'It's Okay to Be Different' by Todd Parr and Everybody's Different, Nobody's Perfect' by the MDA. We also were open with sharing information with the teachers about AJ's disability. The MDA has a resource for teachers entitled,'A Teacher's Guide to Neuromuscular Disease' that may also be a useful resource.

We hope these tips might be helpful and look forward to hearing about some of yours on our discussion boards. We hope that all our families can look back on their grade school experience with pride and affection.

To read more on this subject take a look at the MDA Quest magazine article Going to school: new year, new challenges.

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