My Kid Has Less Support Than Ever During This Pandemic

There’s a weird rhythm to the school year if you are a parent of a child with complex needs. It saunters in while you are enjoying summer. It weaves a small tendril of dread at the edges of sun-drenched days. The closer you get to fall, the louder the drumbeats. Time is running out. School is about to start. Transition time.

As aggravating as the drum is, it is still a rhythm and it is familiar.

In a normal school year, the drum beat eventually becomes a tune that every parent of a child with a disability knows well. In years gone by, that looked like this: calls to the school; transition plans; sometimes drives by the school; visits to the classroom; introduction to new teachers and a step by step plan. IEP (individual education plan) updates and instructions or protocols for how to access support, as well as when, where and what that looks like.

It is a rehearsal for the main event, the school year. It’s scaffolding basically providing vulnerable students with accommodations and supports needed to access the curriculum to succeed.

This year, we learned my daughter would be in Cohort B, less than a week before school began. What subject? Well, that came later and only after I emailed to ask. Wear a mask, schools will be cleaned and cohorts smaller. That was the message. We got 8-10 Cohort B reminders, emails and phone calls. But zero information about anything else.

Paula Schuck understands the power of self-advocacy, especially when a child has a diagnosis. Read about how she's raising a health care self-advocate here.

But What About Her Needs?

There was no mention of supports for weeks in and some still are unclear or absent.

Respectfully, we all get that this year is unlike any other and we were simply grateful to be able to return to school in any capacity. That’s a thing that many parents of kids with disabilities do — learn to make do with scraps of information, slivers of support. Sad, but true. It comes from years of fighting for any slight accommodation and advocating constantly for something many other families take for granted.

"That’s a thing that many parents of kids with disabilities do — learn to make do with scraps of information, slivers of support."

But it’s time to stop blaming everything on Coronavirus.

Where is the resource room and what does that look like? Has the first teacher read the IEP? How are we addressing withdrawal if she needs to leave the room at all for extra support and a quiet space, which is an accommodation in her IEP? How will the social worker support kids with safety in mind? What does the resource room look like? Is it the same? Does she need to make an appointment to visit resource or guidance or the school social worker? With movement in school restricted during COVID, my teen thinks she does have to make an appointment, which is a lot to expect of a youth with FASD.

One Constant

This year the only consistent has been patchy or nonexistent answers. When I have asked questions, I have heard: “I don’t know,” which is not exactly comforting. As a businessperson and entrepreneur if a client asks me a question and I don’t know the answer, I often say: “I am not sure, but I will find that out for you.” Even in a pandemic. No, make that especially in a pandemic.

We were understanding and then some, but many children I know across Ontario with unique learning challenges and various disabilities still haven’t gone back to school, despite being registered for in-person school. It has been months of this, and some schools have simply said: Send them. Or don’t. Or, we definitely do not have support for that this year. Period. When asked how accommodations are happening and what the transition plan is this year, they’ve met with radio silence.

Some parents in my immediate circle of friends were not able to send their children back at all even though they are supposed to be there. Why? Because none of the supports that are normally in place happened. On day one, everyone was basically expected to simply show up and trust blindly.

"It has been months of this, and some schools have simply said: Send them. Or don’t. Or, we definitely do not have support for that this year. Period."

Many scattered reports across the province have surfaced from parents and advocates indicating that the re-opening plan and the pandemic school year failed or is failing many students with disabilities.

Listen, we all get it. COVID changed everything abruptly, but at the end of the day students with disabilities have a right to education and they still have human rights.

Where's the Support?

Right now, in the second wave, with a student who has FASD (fetal alcohol spectrum disorder) and is on an IEP, I feel less supported by the education system than I have in years. While many parents are trying to be understanding during a pandemic, it’s clear that there’s little to no support for our kids even though it’s still legally supposed to be there, pandemic or no.

Transition meetings? Check-ins with social workers? IEP reviews? Extra support from school staff? All of that has been slow in coming this year so far. Now let’s also add in the Octomesters or Quadmesters, with each subject crammed into a much shorter timespan at the high school level in the system where my one daughter attends school.

Right now, my youngest daughter goes to school physically for two days one week and three days the next. She averages eight hours a week in school. It is one subject for five weeks and then they switch. The pace of learning is warp speed and almost impossibly fast at times.

Paula Schuck has learned to lean on a digital community of parents with kids who have special needs like hers. Read about that here.

So, we are the resource room, the people providing scribing when necessary, tech support and more.

The drumbeat is deafening and erratic this year, not unlike a Grade 5 instrumental music class. You know that one where your child brings home a clarinet or trumpet for the first time ever and proceeds to “play” it? In the near future, when we study the pandemic and look back at things that were done well, gaps and issues to address, I hope we take a hard look at pandemic schooling and how it failed some of our most vulnerable students and families.

And I know that this is not simply a school, teacher-level issue — it's a much larger one. Teachers are working their tails off. So support needs to come from the top, but where is it?