January 27, 2016

Public School, Major Surgery, and Careful Planning

We knew about our daughter Sammi’s impending major cardiac surgery five months in advance. That gave us plenty of time to research, plan, discuss, and codify our plan for her recovery as it related to school. Not everyone is lucky enough to have this much time to prepare, and so I hope the information below can be helpful to someone else trying to put together a plan on shorter notice. Even if you have enough time to prepare, this checklist can help you ensure that you’ve thought of all the things that might affect your child’s recovery when s/he returns to school.

504 Plan

The very first step we took when preparing for our daughter’s surgery was to inquire with the school district about getting a 504 Plan. Shorthand for “Section 504 of the Rehabilitation Act of 1973,” a 504 Plan makes official any accommodations a child needs in order to participate in normal classroom activities. In the state of Illinois, where we live, the board of education has provided an excellent, comprehensive article about how to apply Section 504 to shorter-term, temporary conditions (though the law also applies to longer-term and permanent disabilities). Creating a 504 Plan forces the school to work with you to accommodate your child’s health needs in a way that gives them the best possible access to their classroom and school activities.

Because we had been through the process of developing a 504 Plan before to accommodate Sammi’s food restrictions, this was relatively straightforward for us, but we also knew the importance of getting the information we put into writing in this plan into the hands of every teacher who would encounter our daughter in the course of her school day. In the end, we decided together with the school to have a meeting that included her classroom teacher, the district health coordinator, the school health clerk, the school social worker, and the school principal, as well as my husband and I. It gave us the opportunity to explain the surgery in detail to the whole team in person, allow them to ask questions, and to brainstorm accommodations together.

Schoolwork

Sammi was going to be missing, at minimum, three weeks of school. Though she was only in third grade at the time, we wanted to be sure that she didn’t fall so far behind in foundational subjects like math that she couldn’t easily catch up. We also knew that complications could occur that would keep her out of school longer than we anticipated, and so we wanted to be prepared for that.

Once again, being aware of the law in our home state was useful. In Illinois, if a student’s doctor determines that the student must be out of school for at least ten days, the district can be reimbursed by the state for providing tutoring services either at home or in the hospital. We were able to get our daughter’s surgeon to sign paperwork affirming that projected missed school before the surgery, and therefore we were also able to have the district find and hire a tutor in advance. Having the extra notice beforehand even allowed them to look for a tutor who spoke Spanish, since Sammi was enrolled in a Spanish immersion classroom.

Safety

We expected Sammi to return to school with two large incisions healing on her back, one across each shoulder blade. Under those incisions, scar tissue between her ribs would be healing slowly. She would not be allowed to carry a backpack, reach her arms up above her head, or move very quickly. Being jostled hard would likely be very painful, as even deep breaths would feel different to her with both sides of her ribs healing. In short: there would be many opportunities during the course of a normal school day for her to get hurt.

Working with the school health clerk, the principal, and her teacher, we began by developing a plan for the beginning and end of the day. In the morning, Sammi would arrive at school just before the bell rang that gathered students from the playground to line up near the door, and instead of waiting outside, would bring a friend to sit in the school office with her until the halls cleared. The reverse would happen at the end of the day, avoiding crowded hallways. During the school day, movements between classes would occur with friends flanking her on either side.

Activity Restriction

Sammi would not be allowed to return fully to her normal activities for at least six weeks after the surgery. That meant there would be no Physical Education class and no outdoor recess. The school’s initial suggestion that she simply sit on the sidelines for those activities was not an acceptable solution for us; we didn’t want her spending an hour a day watching her friends have fun while she sat and watched. Instead, we came up with a list of alternatives and a schedule for her to follow:

Reading to the kindergarten class
Helping tidy and organize the art classroom (the art teacher was a favorite)
Playing math and literacy games in the library
Helping me when I volunteered in the school bookstore

Each day, she picked a different classmate to join her during these twice-daily activity times.

Emotional Support

We knew that Sammi would feel overwhelmed, sad, angry, or simply frustrated at times. We also knew that her classmates — who had been together as an insular group for four years — would have questions, worries, and big feelings of their own before and after she returned to school. Including several emotional support components in the 504 Plan helped us set these expectations early on.

The first day of school following her surgery, the district health coordinator and the school social worker visited her classroom and told the students there about what had happened. In simple terms, they explained the surgery and told the students that she was doing well. They worked with the class to make cards and offered any students who needed it the opportunity to process the information privately with the social worker. Just before Sammi returned to school, they met with the class again to discuss her restrictions, how she’d likely feel, and to let the students ask more questions.

The social worker also checked in with Sammi several times once she returned to school and left her with an open invitation to visit her anytime.

Peace of Mind

In the end, though the highest priority for us was to keep Sammi safe, it was also important for us to feel proactive about the time after her surgery. There was nothing we could do for her during the surgery, and little we could do for her in the hospital. Once she was home, we would have to prepare her for her return to school, and we wanted to know that we could give her answers confidently about what it would be like for her there. That was very valuable for us in the months we spent preparing.

If you need help developing a 504 Plan for your child, here are some resources:

January 20, 2016

Checking In With You

Dear Reader,

I am writing to you from the window of a coffeeshop. I sip from my hot mocha, listen to my headphones, and look out at the cars going by. Where I live, there has just been snowfall, and the pedestrians are like me on my walk here: bundled, hunched against the cold, hurrying. Inside, people surround me, but I’m trying not to engage with them.

I’m thinking about you. Who are you? Why have you come?

For years, I spent countless intent hours searching for information that would help me solve the mystery of my daughter’s health issues. Even when we thought we had a solid diagnosis — laryngomalacia when she was an infant, repaired double aortic arch when she was a baby, reflux when she was a toddler, eosinophilic esophagitis when she was a little girl — I wanted to know how to handle it. I wanted to know how other parents made their children’s lives easier despite the diagnoses. I wanted to know how other parents made their own lives easier despite the diagnosis.

I was hungry for connection and knowledge. I was desperate for validation, advice, and other parents to either assuage my fears or tell me how they made their peace with the same ones. Continue Reading…

January 13, 2016

The Tools of Resilience

“It’s funny: I always imagined when I was a kid that adults had some kind of inner toolbox full of shiny tools: the saw of discernment, the hammer of wisdom, the sandpaper of patience. But then when I grew up I found that life handed you these rusty bent old tools – friendships, prayer, conscience, honesty – and said ‘do the best you can with these, they will have to do’. And mostly, against all odds, they do.” -Anne Lamott

Between December of 2013 and April of tools 2014, my husband and I method-acted our way through parenting. As we waited for what we hoped would be life-changing surgery for our eight-year-old daughter, Sammi, we knew that no good could come of either her or her eleven-year-old sister knowing what was ahead. We told our adult friends and our adult family members, but we let nothing slip through the age barriers we’d set.

For our children, those five months passed with an innocence we protected only slightly harder than we coveted it. Continue Reading…

January 5, 2016

Handouts for Doctors

Over and over in my head, I dissect what went wrong with my advocacy for my daughter.

When she was just six weeks old, we pushed to have her raspy, gurgling breathing evaluated by an otolaryngologist even though her pediatrician said it was nothing. It wasn’t nothing; we were justified in our followup.

When she was a year old, the sound of milk rattling in her throat got us another appointment with the otolaryngologist, and even though the pediatrician didn’t think it was strange that our one-year-old would not eat solid food yet, the otolaryngologist took note. The fact that she would hold one-fourth of a blueberry in her cheek for hours rather than swallow it was a sign that her esophagus was so narrow that even that sliver of food was too irritating to pass through. It was a clue. Somehow, I’d known to tell someone, and it was part of the path to diagnosing her vascular ring.

When she was four, we’d dutifully tried to wean her from her reflux medications, then taken her to a gastroenterologist when she responded poorly. We’d said yes to the endoscopies, accepted the diagnosis of eosinophilic esophagitis, and diligently followed the six food elimination protocol. We read labels, scoured our kitchen, protected her from potential allergens like fierce animal parents. We did everything they asked, and advocated for her emotional well-being in school and with friends.

We did everything we could have done except tell her doctors to read her chart. If we had thought to ask them, hey, do you think this esophagus problem could have anything at all to do with her aortic arch?, that might have been all we needed. Continue Reading…

Swallow, My Sunshine

Feeding a Family in Medical Uncertainty

Monthly Archives: January 2016