MGKids are usually stronger in the morning or after rest, but there are other things you can do to help ensure they stay strong.
Become familiar with Section 504 of the Rehabilitation Act and Individualized Education Plans (IEP) under Federal Law 108-446. You are allowed to alter P.E. requirements for modified or long-term exclusion, set later start times, and/or secure the use of elevators between floors for your MGKid. Request a second set of books to be left at home to prevent your MGKid from carrying heavy backpacks. You also have the right to change lunch time times to assist in proper nutrition to help benefit their education. Here are some resources to learn more about IEPs and Section 504.
A RIGHT TO PRIVACY
You have the right to protect the privacy of your MGKid. However, you should understand that there are many benefits to educating the people you see daily. If your MGKid were to develop double vision or suddenly start drooling, someone educated about myasthenia gravis and informed about your child’s needs would understand that these are symptoms that need to be addressed immediately to avoid a crisis. Someone who is not aware of the dangers of these symptoms might dismiss or diminish the importance of these indicators and delay their reaction, or not react at all.
CAREGIVERS & TEACHERS KNOW?
WHAT IS YOUR ROLE?
When a child with MG is in your primary care, you become their advocate. If you are a teacher and are absent from school, be sure to fully inform your replacement about myasthenia gravis and the care plan of the MGKid. If possible, notify the parents that you will not be in attendance.
It is your responsibility to ensure the child:
- Receives medication on time and in the right dosage
- Takes necessary rest breaks to avoid triggers that can cause a crisis
- Feels included in the daily activities with their peers
- Maintains a sense of privacy, especially during a crisis
WHAT DO PARENTS WANT YOU TO KNOW?
As the MGKid teacher or caregiver, you spend an extraordinary amount of time with this child during the daytime. As their advocate, please be sure to communicate any changes you see. It could help the MGKid and their family manage the condition better!
This information is useful to know:
- Myasthenia Gravis is not contagious
- Obtain a list of current medications and emergency contacts for the MGKid
- Call 911 first if the child is having issues breathing or swallowing
- Familiarize yourself with the child's alternate schedule—it's the best way to avoid crisis triggers
- Thank you for being an advocate for MGKids!
A BRIEF INTODUCTION TO INDIVIDUALIZED EDUCATION PLANS:
WHAT IS THE PURPOSE OF AN IEP?
The plan establishes reasonable learning goals for you child and determines the services the school district will provide in order to assist your child in attaining these goals.
WHO DEVELOPES THE IEP?
Key school staff members and parents collaborate to develop a mutually agreed upon plan. Your child can also be included in creating his or her IEP.
WHEN IS THE IEP DEVELOPED?
An IEP meeting must be held within 30 calendar days after an evaluation determines that a child with disability needs special education and accommodations. IEPs are planned and reviewed annually to determine if the goals are being achieved. If necessary, plans will be revised.
WHAT IS AN IEP?
An IEP is a plan created to manage, track, and achieve learning goals. It documents specific information which includes but is not limited to the following:
- An assessment of current achievement and performance. This assessment will describe the current status of your child’s ability and how MG affects his or her ability to progress with the general curriculum.
- Annual goals. Specific goals for your child are constructed and documented within the IEP.
- Special education and services are determined. Any reasonable accommodation that needs to be made to ensure your child can reasonably achieve the IEPs will be detailed in the plan. These services can include anything from additional time during testing to special communication devices. This will also detail any programmatic changes or special personnel assigned to your child. Specific information regarding the start date, frequency, location, and duration for modifications will be clearly stated.
- Exemptions. The IEP plan will specify the amount of time a child will be educated separately from nondisabled children, and it will determine if a child should be excused from extracurricular activities such as clubs or lunch. Additionally, your child’s IEP will determine if he or she will participate in state- and district-wide assessments, and if so, what accommodations will need to be made.
- Metrics. The method by which your child’s progress toward goals will be tracked, measured, and assessed will also be included in the IEP.