One of the first things we did when we learned of our daughter’s Friedreich’s ataxia (FA) diagnosis was to make sure she had all the accommodations she needed in all areas of her life. Since she is still in school, this included working with teachers and administrators to come up with a plan for her while she is under their care.
She had a 504 plan already in place because of a previously diagnosed heart condition. Her 504 gave her accommodations in school such as preferential seating and alternatives to PE classes. The school administrators and nurse oversaw the 504, which mostly covered the health concerns that her heart condition caused.
As we learned about FA and realized it was causing her some new struggles, we met with administrators to alter her plan, adding things like an extra set of schoolbooks that she keeps at home and making sure that she had a buddy to help her get from class to class. She began receiving occupational and physical therapy services through the school. Teachers were to give her additional time on assignments and help her with organization, as well.
Yet, even with these accommodations, she struggled more and more throughout the seventh grade. Her grades, which at the beginning of the year were A’s and B’s, started falling to C’s and D’s. She was having trouble keeping up with her work because FA caused fatigue that would zap her for days at a time, keeping her away from school.
She also missed numerous days for doctor’s appointments that required us to travel out of town. Communication with her teachers was sometimes sporadic, leaving it up to me to make sure that her work was made up and turned in on time.
The disease also began to take an emotional toll on her. I felt like she was barely holding it together, trying to keep up with her classmates socially. Academics became the least of her concerns — she certainly didn’t want to hear from me about homework or studying when she got home. She would immediately crash, and barely interacted with the family.
As seventh grade came to an end and we started looking forward to eighth grade, I decided that it was time we switched to an individualized education program (IEP). I had been told that she would not qualify for an IEP because she did not need specialized instruction or have learning issues. Her standardized testing scores showed that she is well within, or above average, in terms of intelligence for her grade level.
Upon doing further research and talking to special needs educators, however, I learned that she actually does qualify for an IEP because of a section of the Individuals with Disabilities Education Act dealing with other health impairment. We talked with her teachers and counselor and concluded that her health condition was indeed causing academic struggles.
My husband and I worked with her teachers and administrators to come up with a plan that we hoped would get her back on the right track. We had the expertise and support of my husband’s aunt, a retired special education teacher who knows the correct verbiage to use and the accommodations to ask for.
The IEP we came up with has all the accommodations of her 504 plan, but includes more comprehensive and specific goals for her academic success. A resource teacher will be helping her work toward reaching those goals.
Eighth grade is just beginning, and I already feel much better about the oversight and accommodations the IEP has allowed our daughter. She has a resource teacher who is committed to making sure this will be the best year possible. She even told me that she will be my daughter’s “momma at school.”
That is music to my ears. I know that my daughter will be cared for and looked after while she’s away from me. I am so grateful for wonderful teachers and a great school system that works to meet the individual needs of all children.
I would advise any parents whose child with FA is struggling with this same issue to fight for the IEP. It is well worth the time and energy that goes into the planning to be sure that your child is getting the support they need while in school.
Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
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