Welcome to June, that in-between month. Outside it feels like summer much of the time, which makes the agony of desk-work even worse. The kids are restless; the countdown to summer holidays is on. With camps open for registration in early April, and some filled within minutes, many families have had at least part of July and August programmed for months.

Summer planning is another reminder for most of us with atypical kids that their road—and our road—is a little rockier. We’ve spent 10 months focused on inclusion in the classroom, and though we hope that summer is a reprieve, we quickly realize it isn’t. Our kids want to take part in summer programs, go to camp with their friends, but we can’t simply register and hope for the best.

Summer camp for my son, Angus, means a support worker, and this is not cheap. Consider adding an extra $20 an hour to a week at day camp, and that $200 camp becomes $900. That’s a hefty sum for some capture the flag games and a tie-dyed T-shirt. How many $900 weeks can one family afford?

Last summer our family managed one and a half. One that we planned months in advance, so Angus had the opportunity to attend a neighbourhood camp with a close friend, the “half” arranged the Tuesday afternoon of a camp advertised as inclusive, a camp where I was told Angus could attend without a support worker, but which proved to be an utter disaster for him to navigate on his own.

This was possible for us, because after a year and a half on the waitlist for respite funding, Angus’s special needs social worker advocated hard for our family to move to the top of the list. We get a small monthly cheque that we hoard until summer so that camps are a possibility. We are extremely lucky. Many other families are not.

Those were not the only day camps Angus attended last summer, though. He attended four. He spent a week at QA Camp—a truly inclusive camp on the grounds of Queen Alexandra Centre for Children’s Health. Because of the high ratio of (skilled and experienced) staff to campers, Angus could attend QA camp as a regular kid—no extra adult tagging along, as is the case at other camps, and at school. No reminders of his challenges and differences, but just a time for friendships and fun. The fourth camp Angus attended was with a trained and fully-funded support worker provided through Recreation Integration Victoria.

After years of providing camps for kids with developmental disabilities, QA Camp is not running this summer.

After 30 years of partnership, Saanich, Oak Bay and the CRD on behalf of Panorama have terminated their contracts with Recreation Integration, according to CBC News. This summer we’ve applied through RIV’s Summer Inclusion Service for a support worker at a full-day camp offered by Saanich Recreation. Next year that won’t be possible.

I’ve bemoaned this decision to Saanich Rec. That’s what parents of kids with special needs learn to do: question, complain, become the squeaky wheel, or—in more positive language—advocate. I’ve been told they are redesigning their model to meet growing and broadening needs. Their commitment to inclusion remains strong, I’ve been told, and they will look to provide a comparable level of support directly through the Recreation Department.

That’s hopeful, and I want to be hopeful. Unfortunately, another thing those of us with neuro-diverse kids learn: don’t be placated by promises; wait for action.

Sometimes parents of so-called typical kids ask what they can do to support kids with special needs and their families. “Don’t be afraid to ask questions,” and “Set an example for your children by being kind and welcoming” are a couple possibilities. But there’s more.

Parents of kids with special needs often talk about the “constant struggle.” We’re not talking about struggling with our children, but about struggling with a society that doesn’t accommodate them. We are talking about struggling to knock down barriers of inclusion only to have more erected right in front of us.

One thing that parents of “typical” kids could do is join this fight. Be an advocate. As uncomfortable as it can feel to always question and complain, to be “one of those parents”, it’s often a necessary way to achieve change. Examine every afterschool program and sports league and camp your kids attend. If there aren’t any kids with special needs, ask why. What can be done to accommodate them?

If there are kids with special needs, make sure those kids are truly included. If not, what needs to change? Ask for those changes. Demand them. Do it for our kids, and for your own. It’s exhausting, I guarantee it. But do it anyways. Do it until we finally live in a society where every child belongs, everywhere.

Laura Trunkey is the mother of the amazing Angus, and the author of the story collection Double Dutch (House of Anansi, 2016). Find her at lauratrunkey.com.