Since becoming a parent,I find myself going down a hole of cynicism, jutting my chin out at the world. I am ready to fight. I expect bullying. I expect disagreements. I expect to be let down, to be overwhelmed, to be left standing alone in the midst of a battle. Most people would think this attitude change came from the fact that I am “doing too much” and “burning out”. I teach little ones with disabilities all day, and come home to two with unique needs at night. They may be silently shaking their head, whispering “I told you so” behind my back.
It’s not the kids.
This world is not designed to be supportive of children with disabilities and their families, I find. I suspected as much, from all my experiences teaching, but living it has been another story. The paperwork, the time, the meetings, the appointments… Advocating for my children at school alone is complicated and messy. I want to be a team player, to cheer on the amazing efforts of the teachers, therapists, and support staff that help my children achieve their goals. I work in schools. I know that teachers care. I know that teachers work their butts off every day. I want to be happy with my children’s education.
Meetings get scheduled at times that I’ve already said are inconvenient. Assessments are not completed on time, and parental opinion is not sought or is disregarded. Schools ask for release forms to speak to therapists, and then don’t — even 7-8 weeks later. Emails go unreturned. My daughter turns up with IEP goals that require her to be able to see and distinguish letters & numbers, though she is legally blind. My son has behavior plans implemented explicitly against our consent (and against his IEP). My daughter doesn’t get changed on the first day of summer school. My son is urged to attend “less than” programs that are more convenient.
Medical appointments are more of the same… Doctors disregard concerns, and say things are “probably” okay. They tend to make stuff up on the spot, or write me off as “that person” when I’ve done even a basic Google search of my child’s medical conditions. They absolutely do not speak to each other, even when they work in the same building. In some cases, they don’t even share files when they work across the hall from each other. My daughter’s heading to the neurosurgeon this week for a concern that we’ve brought up three separate times, to three separate doctors, all of whom wrote off our concerns with a quick glance. My son saw the geneticist this week, who informed us that in-home behavior therapy would solve all our woes. It was insulting, and showed that she had not read through any of the discharge papers she admitted to have.
Trust is broken. I burn out. I burn out, not because of Little Man, not because of Diva. I burn out because of the systems that support them are not so supportive at all. I burn out because there are simple changes to be made, some of which are already law. Yes, much of what I’ve had to fight is simply for people to respect the laws that are already in place. Case managing becomes a burden, and I turn into a negative person, seeing enemies to fight everywhere — because so often it seems that they are.
I don’t want to live like that. I want to be present with my kids, not gearing up for the next battle, always the next battle. I wish the world would change, but it won’t, not yet. So I can’t stop fighting the good fight. I can’t leave this world the way it is now, with my daughter demeaned and my family judged. I don’t want that for anyone else. We have to speak the truth, though. So often, it is not our children. Most of the time, it is not our children. It is this world, this world that is too small for them, that is too close-minded for them. It is this world of gate-keeping and penny-counting. This is what tires us — something so changeable.