Our daughter Pepper will turn four this year, and though she's not your average four-year-old, she'll start kindergarten in the fall.
When Pepper's older brother entered school two years ago I was nowhere near as nervous as I am now. But then Pepper is a special-needs child. And these last few months have been a traumatic roller-coaster for me.
The Ontario Ministry of Education lays out specific guidelines for inclusion, diversity and rights for all children to attend school regardless of ability, social or economic background. You may recall hundreds of parents converging to protest the Ministry’s “new” sex-ed curriculum which provides context for children of same-sex couples as well as introducing the concept of consent.
My daughter will likely never be able to express consent or lack of consent. She may not be able to scream, run, or fend off an attacker. To these parents I say: How do you think this makes me feel, that you don’t think this piece of education is important? No, I certainly don’t trust that you are going to teach this to your children at home. I simply do not. But I digress.
Most parents take for granted that once they've registered their child for junior kindergarten and met the teacher, the only stumbling block is their own anxiety. When my son entered the school system, it was seamless. Effortless.
Unfortunately, enrolling our daughter at the same school has been gruelling and heart-wrenching. There have been numerous meetings, appointments, doctors' notes and days off. Many hot tears later, we’re still unsure what September will bring for our little girl.
For starters, we await the arrival of her wheelchair, which she'll need in order to start her school year. Her educational support worker hasn't yet been chosen, and most egregious, she was rejected from the before-and-after school program at her school because of her special needs. Wait, what? Inclusive? Not so, it seems. As a result, we find ourselves in a state of limbo for her September start. Tears of uncertainty flow regularly for me, and the anxiety is relentless.
So what of the Ministry’s inclusion mission? Does it include children like my daughter, who has physical and medical needs in addition to her cognitive delay?
All of the equipment required in the classroom (minus the wheelchair, which is our responsibility) has been set in place, we are told. We have become acquainted with her special education caseworker, kindergarten teacher, principal, school board special education coordinator, physical medical coordinator, Community Care Access coordinator and the like.
Pepper's IEP is being worked on according to her abilities and the path we've carved for her with the support of her daycare educators.
Yet it's August and we still don’t have a before-and-after school plan for her, something essential to our ability to work (which for me includes an hour's commute each way).
And the rescue medication recommended for our dear daughter when she has a seizure, and taken under the tongue, has been rejected by the board as a safety issue for the person administering it. A nasal spray, which we need to be trained on, will be used instead.
What happens now? Advocacy, of course. My husband and I don our superhero capes and get our fight on. We fight for the right for our daughter to attend school with your child.
We hope and pray that she is safe, and included, and treated like an equal. We wait for the phone calls informing us of the seizures, of the accidents, of the loss of resources. We wait to see what impact a possible teacher’s strike might have on special-needs programming. And we get ready to fight.
See you in September.
Follow Stephanie on her blog at Pepperlepsy.