Back-to-school time may bring a sigh of relief to many parents, but for those living with chronic illness, it can bring a host of challenges. At times, schools, teachers and other parents are unaware parents are even struggling and, when they do know, often have no idea how to help. I want to change that. Using both my own struggles and speaking with other parents living with chronic illness, I’ve created a list of things that can help. Print it out and make sure your school has a copy – or 10.
1. Making School Events Available
One of the hardest things for parents is missing out on seeing their children in action, from plays to concerts to classroom visits. “My daughter had a play and I had to miss it,” one parent shared. “It broke my heart to not see her.”
a) Videotape buddy. “Schools could easily match parents up with a “videotape” buddy, either a parent in the same class or a school volunteer who could tape events or Skype parents in. The value in being able to see your child in action without having to go through the logistics and pressure of asking every time can’t be overstated.
b) Physical accommodations at events. For others, physical accommodations are the difference between being able to attend an event or not. Personally, while I’m usually able to make it school, I’m unable to stand through even a short event. Knowing there’s a guaranteed place to sit reduces emotional and physical tolls on my body. Some other accommodations include access to: parking spots, private bathrooms or a quiet space.
2. Alternatives to Parent/Teacher Conferences and Other Meetings
Similarly, conferences can be challenging on several fronts. The traditional format doesn’t always work.
a) Offering video conferences. Providing an option to have the conference via video is a game changer. As a former teacher myself, I hold the parent-teacher conference as sacred, but this year, on the day of my daughter’s, I was struggling to get out of bed and knew I’d never make it to school. When her teachers agreed to FaceTime instead I almost cried from relief, knowing I could participate without setting myself back.
b) Providing written notes for key points. For many parents, attending a conference is one thing, but due to brain fog, a cognitive impairment often present in chronic illness, retaining the information is another. “I’d love to have a write-up of main points, or follow-ups,” one mom said, “because I’m there, I’m trying to process, but often half of it’s gone.”
c) Offering video for other meetings. This same idea applies to other meetings, such as PTA or other committees. “I never can join parent meetings or social events,” one parent said. “I wish the meeting would be on Skype or they would at least write what happened.”
3. Drop-Off and Pick-Up
Almost every parent I spoke with mentioned the challenges of drop-off and pick-ups. One parent explained, “Sometimes we have to stand for 15 minutes while waiting. I can do it, but then that’s pretty much all I can do for the day,” adding that because she didn’t “look ill” no one understood.
a) Make parking available for parents either by opening up disability spots or the faculty lot, or reserving a temporary space.
b) Provide a designated adult to walk kids to the gate, car, etc. While schools usually let parents designate someone to do this, many parents don’t have someone they feel comfortable imposing on, on a day-to-day basis, so facilitating this would be remarkable.
4. Don’t Penalize Children for Fallout From Parents’ Illness
Many parents mentioned concerns that their children come under scrutiny for things ranging from having incomplete uniforms or “sub-par” lunches. “I just want the school to know, it’s not my child’s fault and I’m doing the best I can,” one mom said.
a) Make allowances for lateness. While no parent has an easy time getting out of the house in the morning, for parents with chronic illness it can be more challenging than launching a shuttle into space. From fibro fingers, struggling with buttons and bouts of vertigo to simply not being able to move as fast, the obstacles are endless. One single mom shared how upsetting it was that her son had marks against his attendance for lateness, suggesting, “There should be a commodity for parents with disabilities.”
5. Consider a School Liaison for Parents With Disabilities
If the above at first seems daunting to a school, realize that once a system’s in place, it can become quite simple. One parent shared that her school had a designated liaison for parents with disabilities and it made an amazing difference. That person was the designated contact between the parent and teachers and administration, facilitating much of the above and anything else that arose.
Implementing the simple steps above can create positive effects for a parent and child that will ripple through a lifetime. There is no price you can put on that.
This post originally appeared on Lupus Chick.
We want to hear your story. Become a Mighty contributor here.
Thinkstock photo via Dynamic Graphics.