Prior to third grade, my son, Andy didn’t have any formal educational accommodations in place. Until then, I merely chatted with the teacher before each school year. As my husband and I became more informed, though, we decided there were too many variables – perhaps one teacher might not understand his illness or the upper grade teachers might view some suggestions as “babying” him. We wanted to lay a foundation now to avoid any trouble later on.
The process took much longer than we expected – four months despite our constant involvement. But we learned some valuable lessons, through trial and error, along the way.
In July, I got the ball rolling by sending an email to Andy’s principal, asking to discuss a possible 504 plan before the Michigan standardized tests started in October. She replied that a meeting would be no problem; she’d get the proper paperwork together the first day of school. I relaxed. But I had already made mistake number one. Nowhere in the email did I request a formal evaluation of Andy for 504 accommodations. That cost us valuable time later.
Once I received the evaluation forms, I forwarded them to Andy’s pediatric rheumatologist and the social worker at the clinic. I soon returned the paperwork to the principal, along with a list of doctor requested accommodations.
An informal meeting was scheduled for mid-September. Three people were present, including me. By the meeting’s end, I had reluctantly agreed to let the school follow the doctor-requested accommodations informally until January. That was mistake number two; now the standardized tests were only a month away.
I expressed my concern a few days later to the principal and she immediately connected me with the school social worker. Once the social worker took over, she asked me to email her a formal request to evaluate Andy for an IEP (Individualized Education Plan) or a 504 Plan. At this point, I also asked the Arthritis Foundation for help and they assisted with the wording. Via emails, the school and I communicated back and forth, but that led to mistake number three. Without face-to-face communication, we thought we weren’t being taken seriously. On their side, the emails created tension, especially when we discussed timelines set forth by law.
Over the next few weeks, Andy was evaluated in several areas, including speech, writing, physical strength/agility and stamina. He also underwent psychological testing. The results only became available the night before we met with school officials to discuss eligibility. Thus mistake number four: I should have insisted on more time to review the evaluations, much of which was written in medical terms we didn’t fully understand.
In the end, Andy didn’t qualify for an IEP, but did for a 504 plan. All of our requested accommodations were accepted and some added, including:
- Pencil grippers for writing assignments when his hands don’t hurt. A tape recorder, parent dictation or computer assistance when they do.
- Inside recess on very cold days.
- The option to use a pillow or a chair when the class meets on the carpet.
- Alternative gym activities, such as stretching or modifications, when his symptoms are active.
- An extra set of textbooks for home to decrease the weight carried to and from school.
- Additional time for written tests
- Less in-class work and homework when he’s mastered a specific concept (example: 10 math problems instead of 50).
As we wrapped up the meeting, thanking everyone, the speech therapist said, “And thank you for being such a great advocate for your son.”
Setting Up a 504 Plan: An Update
Andy Moy, now almost 14, will start high school in the fall. Thankfully, his 504 plan has made dealing with his disease a little easier in school, but it hasn’t always worked as smoothly as his mother, Jaime, had hoped.
“In the spring of fifth grade, we had a ‘move-up’ 504 plan meeting with his current teacher, principal, and social worker paired with the middle school principal and counselor,” she says.
“The meeting couldn’t have gone better. However, a few days before the start of sixth grade during orientation, we received Andy’s schedule and there were already red flags going up,” she says. “His first hour was on one side of the building while his locker was on the other side. For the first part of the day, Andy would be criss-crossing the school, which would make it difficult for him to get to class on time if he was moving slowly due to pain or stiffness.”
When Jamie questioned the schedule’s hardships, the counselor dismissed her, telling her that it was too difficult to change every schedule to accommodate every student who wasn’t happy, and that Andy would just have to “live with it.”
Later, after trying to get his scheduled changed with no luck, Jaime approached his elementary school principal to see if she could help. As it turned out, the 504 Plan was misfiled when getting transferred from the elementary school to the middle school and the middle school had no record of Andy’s plan.
Once his plan was found, Andy got back on track, but there were still issues that crept up throughout the year:
- Andy’s music teacher wouldn't allow him long enough breaks when learning to play the keyboard, even though his fingers were swollen and painful. Once Jamie alerted the teacher and counselor to the situation, the teacher did allow Andy longer breaks.
- Andy had to climb the stairs a few times daily to attend the computer lab with the rest of the class. Specifically in his 504 was not using the stairs. After falling down the stairs, he was able to use the counseling office to complete his computer assignments and Internet research.
- Andy missed school lunch more than once when he got in line to purchase a drink, but couldn’t make it to the lunch entrée line before it closed because he was in too much pain to get there quickly. After Jaime contacted the school about this, Andy got a pass to leave class five minutes early to get to lunch before the lines and crowded hallways. This was in his 504 from the start, but just not followed.
“Sixth grade definitely had a learning curve for the school with regards to Andy’s 504,” says Jaime. “In seventh grade, Andy was reassigned to a different counselor. This made a world of difference and we had no issues for his remaining two years of middle school.”
Jaime recently met informally with Andy’s middle school counselor and upcoming high school counselor to explore the high school and address issues like the distance between classes and lockers, where Tylenol would be stored and other 504 issues.
“I feel confident that all of us are working together to make the transition of middle school to high school smoother than elementary to middle school,” she says.