It was just a typical field: grass, two soccer goal posts, and children—34 of them, lined up along the edge of the grass and the blacktop, some talking, some laughing, all staring and waiting. And then there was me with CMT, desperately trying to stay upright on my pounding feet and shaking legs, hoping that my teacher would lose count of my laps or lose patience with me and finally call an end to my mile “run.” This was my school’s version of “modified” physical education (PE).
If your child with CMT is in school, chances are this scene has haunted you, whether or not it’s a reality. PE is an integral part of most school days; many teachers even use extra PE as a class reward. But for a child with CMT, PE and other times requiring physical movement (writing long assignments, for example) can be riddled with shame, embarrassment, and frustration. Information and collaboration are keys to ensure your child has the best possible experience in the classroom and with PE.
What can parents ask of the school?
As parents of a child with a disability, you have two main options for developing a plan for your child: a 504 Plan or an Individualized Education Plan (IEP). The goals of both these plans are to ensure all children receive Free and Appropriate Education (FAPE) in schools, and each requires a team of school professionals and parents to meet yearly to develop and review the plan. Here are the key differences, as they relate to children with CMT:
504 Plans are available to all individuals who have a documented disability; these plans fall under civil rights law. A child with CMT would absolutely qualify for a 504 plan, at the minimum.
504 Plans aim to “level the playing field” for all children, meaning they require teachers and staff to make accommodations and modifications to ensure children can access the general educational curriculum. For example, if CMT greatly impacts your child’s ability to use his/her hands to write, an accommodation could be receiving copies of the teacher’s notes (rather than writing them all herself) or the use of a helper for writing assignments.
In regard to PE, a 504 plan would require the teacher to modify or accommodate the PE activities for your child (i.e., fewer repetitions, breaks as needed, limited high-impact movements) but would not ask the teacher to individualize the PE program.
IEPs are available to children whose disabilities adversely affect their educational performance or ability to benefit from general education. IEPs are protected under the federal statute of the Individuals with Disabilities Education Act (IDEA). A child with CMT, which seriously impacts his or her ability to write or participate in PE, should be assessed by an IEP team to determine the services necessary to support the child.
Having an IEP affords a student the opportunity to have specialized (supplemental) support. He or she may receive support from a Physical Therapist (PT), Occupational Therapist (OT), Adaptive PE teacher (APE), Resource Specialist (RSP), or a counselor/psychologist. An IEP will also include individualized yearly goals generated from assessments of current levels and in support of the child’s progress toward grade-level standards. Many IEPs also outline accommodations and modifications similar to those in 504 Plans. Changes to IEPs may not be made without parental consent, and the parent must agree to, and sign, the IEP before services can begin/change. If you disagree with the school team’s assessment findings, you may request that private assessments be completed and financed by the school district.
Be aware that the services outlined in the IEP will most likely be provided during the school day; your child will, therefore, miss part of his or her class time to work with the specialist(s); however, many minutes per week are written into the IEP. Due to budget constraints, you may find some districts resistant to offering some services. Stick with it and continue to provide the team with information about CMT and how it affects your child. Even experts can be lured into assuming that, because a disability is mostly “invisible,” it does not present great needs.
Things to keep in mind
Advocacy and information are the keys. Ensure the professionals working with your child are well aware that your child is giving his or her best effort. “Try harder” is a damaging remark too commonly said to students with often invisible disabilities like CMT. Ensure that the school staff celebrates your child’s efforts and successes.
In addition, be sure that the modifications put in place do not socially isolate your child (i.e., having him or her practicing dribbling a ball alone while others play basketball). Many state standards for PE advocate the development of teamwork and social skills as they relate to games. Your child deserves this opportunity as well.
Beware of sidelining: watching peers play, picking up the cones on the field as others run, or keeping score are not acceptable modifications for your child. Your child should be offered low-impact games, played with others, that practice skills related to the PE games if/when he or she is unable to play the regular games.
Assessments for PE are changing, and the majority of states are transitioning to the Common Core Standards, which omit standards for Physical Education. (States currently have PE standards and yearly testing associated with them.) It’s still a good idea, however, to check in each spring with your school team to ensure the modifications and accommodations for assessment will be in place. You also have the right to request that your child be excused from the state testing for PE. Make this request in writing, and be sure to receive a response from the school.
This whole process is bound to be frustrating at times. You know and love your child best, yet you have to work as a team to plan for his or her success. The team members may not always agree with, or offer, what you would like, and you may feel trapped between working together and getting exactly what you want. The best advice is to trust your gut and listen to your child. Most professionals in the schools are there to promote success for all children, but they are human and may need further information to be able to relate to your perspective. This is your opportunity to inform others about CMT and create a more compassionate world.