Special Ed parents: protecting democracy in our schools
The winter holidays are upon us. It’s school concert time. Last night, I watched proudly as my son held up the entire baritone section of his school’s choir and played violin with the orchestra. Charlie is nearly sixteen and very sweetly, still believes in Santa Claus. He loves school and his teachers, his high school music teacher most of all. Charlie has one foot in his school’s special education programs and the other in the arts and athletics. These courses and activities are the lifeline that keeps my son thriving. He has no idea that all three are under constant threat.
In June, the Toronto District School Board, under extreme pressure from the provincial government, voted to cancel the itinerant music programs. Swimming pools were also on chopping block. Lumped into the proclamation was the predictable news that more cuts to special education loomed.
The pushback from parents to preserve music instruction was swift and impressive. School trustees were bombarded with complaints from parents demanding the decision be reversed. A few weeks ago, the board’s provincially appointed supervisor rescinded the decision to cut the music program’s 74 instructors.
As a mom with a kid in special education, news like this hits a raw nerve. It was a relief to know that Charlie’s music program was safe, but also fatiguing to see once again, that the advocacy of some parents is received so differently than that of others. Governments and school boards are afraid of mainstream parents. Not so with special ed parents. Politicians aren’t afraid of us. We’re the annoying mosquitos on a camping trip while parents of kids in the mainstream are the bears you’ll be careful never to wake from hibernation.
Inclusion isn’t a given for a kid like mine. Diagnosed with autism before turning 4, his journey through the education system has been atypical. Unlike so many in our province, he has been fortunate. I think of him as a little rubber ducky bobbing along a raging rapid river. I have a recurring dream of Charlie being just out of my reach. Rising and falling, flipping over boulders, and occasionally being sucked water under only to reappear farther downstream. Meanwhile, I scramble along the shore with knees bloodied, trying to avoid getting whipped in the face by thorny branches in a desperate effort to keep up.
A lot had to happen so Charlie could fully experience being in a school concert just like any other kid. He’s had boatloads of therapeutic and family supports. Charlie was routinely excluded from extra-curricular activities in schools. When schools claimed that he could not participate due to safety concerns, we turned to the private sector to provide opportunities to try new sports and get involved with music programs. Out in the community, there was nary a peep about anything that might be considered a risk to him or others. I can only conclude that it never occurred to his school that Charlie could join in the fun.
When I vociferously advocated that Charlie be permitted to take music in high school, I had no idea that he would be in the hands of such a wonderful teacher. The Performing Arts Honours Program (PAHP) is a non-audition program that mentors beginners into capable musicians. Charlie’s teacher is a generous person with a PhD in music who modestly deflects much credit for this program. He reminds us each year that he’s the product of a public school education. He jokes that when he started studying music, he didn’t know where middle C was on the piano. Last night, he had students conduct while he filled in, playing the double bass. His inclusive and collaborative approach is so refreshing to behold.
Charlie’s a unicorn in the program. To the best of my knowledge, he’s the only special education student in the PAHP. This isn’t because he has more musical ability than other kids. The doors leading to full participation at school were closed long ago for his peers. For some, it started in kindergarten when they had to bus far from home to school, or were left to drown in local classrooms of 30+ kids “misbehaving” and misunderstood. Many had not yet been identified as autistic.
In the past, our province’s solution was to pull a portion of Autism Spectum Disorder (ASD) kids from school and move them over to the Ministry of Children, Community and Social Services for Applied Behabvior Analysis therapy. Charlie was among the last group of children to receive full-time intensive therapeutic interventions before the Ford government’s cuts to the program. For his peers, early intervention programs were not provided, were short-lived, or were second rate. His friends drifted their way through education, never being part of their school’s larger community. Principals couldn’t or wouldn’t find ways to include them. Many parents become so down-trodden that they, themselves, give up on imagining ways for their kids to join in.
Can you blame them? You can’t be too passive or too pushy as a special ed parent. You need allies. Finding someone willing to work with you is very difficult. It takes a lot of energy to forge the relationships that make collaborations possible. It takes constant work and time and practice. You need to integrate yourself to advocate for your child. In my case, I became a lunchtime supervisor at my son’s elementary school and volunteered with the school council. I learned to strategically use Charlie’s strengths at school, like his fabulous relationships with staff, to advantage. The school librarian who kept him in a book club and the office administrator who was a grandparent to a child on the spectrum became watchful chums. Eventually, the principal, the hardest working woman that I have ever seen, turned out to be an ally and a confidant.
When I had concerns, I came in peace. That was not as easy as it might seem. You have to be clear, concise, and specific to be an effective advocate. Never reach out in dismay or appear mystified by how to address a learning challenge. If you approach with rage, grief, or uncertainty, you’re sunk. Teachers have fewer and fewer resources, no training in working with kids with disabilities, and administrators are caught in the middle between the province and parents. Principals are set up to take the blame for systemic problems. No one has the time or the energy to take care of you and try to support your child. Staff are exhausted and just as fed up as we are.
From my vantage point as a lunchtime supervisor in my son’s elementary school, I had to mind my P’s and Q’s as I watched Charlie’s ASD peers wander the hallways daily. Few people know how chaotic our elementary schools are today. One little girl, who I had seen the week before melting down at the top of the stairs with her teacher’s arms looped under her armpits. He was trying to keep them both from toppling down the steps as she kicked her legs wildly in the air at his shins and knees. Breathing hard with complete frustration the teacher shouted out, “Tell Ms. P_____ that I am trying to dismiss my CLASS!” If it wasn’t so dangerous, I’d have laughed out loud at the irrationality and the fruitlessness of the teacher’s attempts to gain the upper hand.
The following week that little girl spent an entire week on the naugahyde sofa in front of the office. Her teacher would not or could not allow her back in the classroom. Either that, or she flat out refused to go. On several occasions I saw the principal and this child’s mother on their knees pleading with this little girl to listen to her teacher. This child clearly needed another setting. I know enough about how school placements work to suspect that there just wasn’t one for her.
There were many times working with the school council when I had held back tears of frustration listening to what seemed to me to be mild complaints from parents of neurotypical kids. I’d listen quietly at meetings and pizza lunches, go back to my car and weep. Parents from the special ed programs do not have the time, confidence, or inclination to jump into the fray. I don’t blame them, it’s exhausting. Advocating for kids with special needs in those settings can be received as pitting yourself against parents of mainstream kids. Thus far, I am the only special ed mom I know of who was able to integrate myself into the school community.
When doors close at local schools and relationships turn toxic, plucky parents like myself, move up the ladder to meet with our school trustee. It’s a slow process for the already over stressed parent, but sometimes it yields results. Trustees can log parents’ concerns, elevate their advocacy, and sometimes can help them crack through to the powers that be, as happened with the 7,000 parents who signed the Coalition for Music Education petition against the Itinerant Music program cut. The province backed off.
Ontario’s Education Minister Paul Calandra has been on a mission to remove school board trustees altogether, even entire school boards, and to cut parents off from being heard. Kate Dudley-Logue, vice-president of community outreach from the Ontario Autism Coalition, says school board trustees are “…getting louder about the fact that schools are being underfunded …and it seems pretty clear that the government doesn’t like those voices being loud.”
The Ontario Autism Coalition’s 2025 Community Survey Report “exposes a system in freefall, one that continues to abandon over 61,000 children and youth waitlisted for core clinical support.” Everyone is set up to fail, and it’s only getting worse. As children age, the Ford government continues to systematically to make access to services nearly impossible for families to receive.
There is even less support once they age out of the school system, are handed a participation certificate and sent on their way. What’s out there for adults you might ask? Not much. If the education system isn’t working out for your child, just wait until they age out of it. This is the future for so many children who I have come to care for. Many parents don’t even know to apply to Developmental Services Ontario (DSO) immediately on their child’s 16th birthday so that, when the child turns 21, they can transition from school services to government services. The waiting list is five years long.
For our boy, being part of arts and sports programs is a pathway towards inclusion. I see these activities as part of the whole. The academic side is incredibly demanding for him with only some classes offered through special ed, and others requiring him to try to keep pace with the mainstream curriculum. If schoolwork is hard, why keep only banging away at what is difficult? We don’t ask neurotypical kids to work as hard as the special ed kids have to everyday. Find other ways for our kids to feel successful and feel like they’re part of the community too. Shouldn’t we all have opportunities to shine and be celebrated? Wouldn’t that make life more fun and create a willingness for any individual to forge ahead with what is more challenging?
I wonder who parents will turn to the next time cherished programs are on the chopping block. It looks like it won’t be locally elected school trustees. I wonder if parents of neurotypical kids realize what is at risk if trustees are eliminated. The pathways they were able to use to help rescue the music and swimming programs from elimination will be gone. Few are aware that the most consistent advocacy from parents who diligently move up the school board chain of command to discuss grievances is from the parents of disabled children. In most cases, teachers and admins, quietly cracking from the lack of resources they have to offer, are silently cheering us on from the sidelines. What will happen for not only disabled kids but for all kids when trustees are gone entirely?
For all that has gone well for Charlie, we’re still in it. There are more barriers to overcome and somehow, we have to continue to surf ahead of the tsunami that’s right on our heels. Who will stand beside us? When will other parents realize how bad this is? As long as we elect leaders who have no respect for education in all its forms, kids like mine will continue to be jettisoned onto the beach and then sucked back into the abyss.
Yesterday, my son went to school at 8 am to sing in a choir, attended 2 classes, went to a swim meet with his high school’s team and, that evening, performed in a lovely concert. A full day for any kid. So why do I feel a little melancholy? Because all special ed kids should have these opportunities and experiences. My son should not be the rare exception.
Karen Bojte is a parent and activist.