By Theresa Sanders
My late August Facebook memories are full of posts about eagerly prepping for school and dreaming of the “yellow ball of sunshine” coming down my street (I’ve even written a song about the school bus…..). While every year brings some trepidation about transitioning, support, and scheduling due to my daughters high level of needs, there hasn’t been a year that didn’t also bring joy and relief knowing she was in a great place with fantastic staff getting all the care and education she needs to achieve her goals.
My kids are 17, twins Alexander and Jessica. This is supposed to be his last year, and we should be halfway on her secondary education in a well-established inclusive program with all the supports in place and a staff that is fully aware of her needs, and a school community that she frankly is a minor celebrity in. Everyone from office staff to classmates of all grades to administration to guidance to custodial staff joyfully welcomes Jessica & all are valued members in her day.
As a parent of a physically and intellectually non-verbal disabled child, knowing she has this community that we can rely on and have such faith in normally provides us with overwhelming relief and breathing room every fall.
This year obviously is very different. For context, our daughter was born developmentally delayed but was meeting milestones and growing at her own pace….it was just behind her brother but still we saw progress. Then we went on vacation when they were just two, and a routine virus suddenly turned our world upside down. When all was said and done after her illness, she was paralyzed, had epilepsy, lost all her abilities, and her brain was permanently damaged. Needless to say we don’t take any virus for granted in this house, we are incapable of downplaying repercussions, and we are always cognizant of how fleeting life can be, no matter how prepared you are.
One of the critical pieces of Jessica’s education is her access to medically necessary therapy. Why it’s delivered through our education system is an entirely different blog post, but that is the system we have here in Ontario. Therapy like physio, occupational, speech, augmentative communication, and more are almost exclusively offered publicly as consultations only and rely on delivery through the school systems. Usually this involves a Professional who is employed most often through local Children’s Treatment Centres (CTCs) or Local Health Integration Networks (LHINs). They’ll come into schools, travelling all over wide geographical areas with large clientele numbers across a variety of schools/boards, and offer usually impersonal programming in generic terms that is then personalized & delivered through school-based staff. For our daughter this is exclusively delivered through our Educational Assistants, monitored by Special Education Resource Teachers. We have been extremely active in advocating for strong school team members who can competently personalize this programming for Jessica and while the educators are not trained healthcare providers, it’s still better than no therapy at all and we’ve made it work so that it’s effective for us. We have very specific “education” goals that are tied directly to these Health Services – things like gym class every year where she can use her equipment within the context of playing sports with her peers, and using a stander during co-op for food preparation, attending art class with specific tools to help her use and manipulate her left side, and using her iPad for specific augmentative communication goals. This incorporated approach works for us because of our competent and dedicated school staff, and because of constant advocacy with service providers and educators alike to make sure programs are effective and followed. We are also lucky that Jessica responds to having health services be seamlessly introduced throughout her day, loves going to school, and cooperates fully in the programming that’s been designed for her through our cooperation with her educators. Obviously it would be better if we could do actual therapy with trained professionals, but that option is only open to us privately which is prohibitively expensive, so this delivery model becomes essential.
However, the massive gap in the system has now been exposed thanks to Covid. If we don’t attend brick and mortar school, we lose these educator delivered health services. That’s it. Full stop. In the spring, her education was completely dropped with no access to these services. The system just is incapable in its current format to provide these human resources unless the student is in school.
So where does that leave us now? Well it leaves us with no options at all. The Premier & the Minister of Education and other MPPs all like to speak about the wonderful choices we have. As parents, isn’t it great that we can simply opt into Remote Learning instead? Except… we can’t. Any family that has a child accessing these MEDICALLY NECESSARY HEALTH SERVICES through school have no choice at all. None. It’s either we send our kids to school, or we forego their access such as it is to these services.
Our daughter has no concept of this danger. She can’t wear a mask, she doesn’t understand hand washing, she has no concept of physical distancing, and in fact her personal needs require physical contact. We’ve mostly kept her completely isolated since March. We’ve been extra careful around her exposure for obvious reasons. But added to what illness has already taken from her, we are conscious of the fact that this thing has had neurological complication, neuro-muscular complications, and internal organ complications in others. We have no idea how it would affect her already vulnerable systems. But, and here’s the problem with this school year, not having access to any therapy since March, her physical health has already deteriorated. She’s lost muscle mass, leg strength, we’ve had digestive challenges, and she’s lost previously hard earned skills. If we don’t send her, this regression will absolutely continue. So we are literally gambling her physical health either way. That’s not a choice, it’s a nightmare. It’s our nightmare. And not one piece of communication either locally or provincially has addressed these very real concerns that family’s like ours are facing. Our most vulnerable students are being left out of the conversation entirely. Smaller class sizes are great, but the stripping of Educational and Health related Rights of these kids hasn’t been addressed or even acknowledged.
There will never be a moment in my life that I won’t be able to go back to that morning 15 years ago and relive the fear and panic of her not being responsive, barely breathing, near death. The Ontario Government is forcing me to choose between the very real chance of possibly having that again, or slowly watching my daughter’s physical health deteriorate in front of me instead. That’s not a choice any parent should have to make.
Picture: Jessica smiling on a sunny day outdoors on her bright blue adapted bike petting her brown and black dog.