In 2010, my son Darcy was diagnosed with three rare blood disorders. We were suddenly plunged into a confusing world of tests, wards and life-threatening (but ultimately, life-saving) treatments.
When you’re 10, missing a single day of school can feel like an entire lifetime. Friendship groups shift, new games are created and a confusing new concept is introduced in maths. Now imagine missing an entire month, an entire year or two whole years of school.
For 16 months, our entire family was forced to relocate from our home in north Canberra to Sydney Children’s Hospital. We didn’t give school a second thought—we were too focused on keeping our son, our brother, our Darcy alive.
Looking back now, I recognise that school is much more than a “good” or “nice” thing to do—it is essential for their future. It can help them create resilience around their illness which, alongside the actual medical treatment, could be life-saving.
Here are five things I learned from that difficult time.
1. Don’t underestimate the importance of school
It’s not just about academics. School is a place of friendship, it’s a place of learning, it’s a place of community. It’s not just about maths or English or science, it’s also about art, performance, chess club, school excursions and even relationships with other adults.
Even if the student isn’t up for long days of connection or even doing schoolwork, they could still connect into play, talk to their friends or even just hear and see what’s going on in the “workshop” or the music class.
It’s the ethos behind MissingSchool, which I launched with two other mums in 2012 to advocate for school connection for seriously sick or injured kids and their siblings. Because seriously ill children’s identities as students don’t simply stop as soon as they step foot in a hospital.
MissingSchool offers assistive telepresence as a solution for seriously sick children. The technology can be used by a child from hospital, home or wherever they happen to be, as long as they have internet access.
2. Learn to speak school
The Disability Standards for Education sets out requirements for the inclusion of kids with disability, physical and mental health needs, ensuring they can access and participate in education in the same way as their peers. However, it can be quite common for schools to feel that students are not their responsibility once they are out of school.
If the school remains unresponsive or uncooperative, parents can ask something along the lines of: “What other documentation can we provide you in order to have the disability standards provisions applied to secure required adjustments for our child to access school, including via assistive devices and special needs support?” (Fact: telepresence technology is an assistive device that provides access into the classroom, just like a wheelchair access ramp.)
To advocate for your sick child, the key is to speak the language of the school system. Teachers need to draw on practice frameworks in order to know what to do—that’s the language they speak. Maintaining openness, communication and respect with all parties will get more results than shaming or blaming—even though it might be incredibly challenging at times.
3. Get an individual learning plan
An Individual Education Plan (IEP) or Individual Learning Plan (ILP) is a set of adjustments, goals and strategies designed to help an individual student reach their full potential, regardless of their situation.
Asking the school for an IEP or ILP is a great way to ensure your child’s needs are met by having extra provisions put in place. For example, do they need to sit closer to the whiteboard when in class? Do they need extra time to complete tests or assignments? Do they need assistive devices? The IEP or ILP captures the agreed disability standards provisions.
Without a plan, sick students may be expected to do the exact same thing as the rest of the class, even though they may be experiencing the symptoms of their illness or side effects of treatment.
4. Returning to school is hard
Returning to school after a long illness or routinely transitioning in and out of school for treatment can be a huge challenge. Children with chronic illnesses experience bullying at a greater rate and frequency than kids who are well. Many children—especially those who are high achievers—also struggle with adjusting their expectations.
In some ways, they’re much more mature than their fellow students, but in other ways, their development has been interrupted. When they go back, sick kids have to bridge the gap between two completely different worlds.
They’re often above silly playground squabbles (nothing feels like life or death when you’ve faced your own mortality head-on), but at the same time, they might not have built the social skills to communicate their complex feelings with others.
We might logically understand that children will feel a bit lonely, but the reality is that their day-to-day struggle is real, hard and at times, terrifying. It’s critically important that everyone involved takes those feelings seriously, parents, siblings, peers and teachers alike. Siblings are a special group, too, facing many of the same complex feelings, but alone.
5. Set realistic expectations for their return
Before the onset of his illnesses, Darcy was a top-of-a-class student who was reading long books from the age of five.
During Darcy’s very first lesson back after his illness, he was overcome with anxiety when he met the reality of what he could no longer do. The teacher wasn’t trying to make things hard for Darcy, but didn’t think much about accommodating him. Physically back in the classroom, the effects of an ongoing illness are sadly often invisible.
Driving home from school that day, Darcy told me, “I used to get angry about school and the hospital school teachers. But now I know why you tried so hard—because I know I can’t do what I used to do.”
If your child is facing a similar situation, try your best to communicate that message loud and clear by saying something like, “You might not be able to do what you used to do right away, and that’s okay. Even just sitting in the classroom is a huge achievement, and we’re all so proud of you. We’ll get you more support and you can take it one step at a time.”
In February 2023, MissingSchool launched the Seen&Heard initiative that will help schools adopt “teach once” telepresence technology including school robots, train teachers, and support vulnerable students and their parents/carers in real-time.
