191. Do We Have Speech?

You know how the fact that people don’t usually feel that salaries can be discussed actually helps employers to maintain systems of power? I have been thinking what a great analogy that makes for parents whose kids are in special education. There are so many barriers to talking openly about what is said to us, or how our kids are talked about and dealt with, and when we do try to seek resolution, the outrage that we would dare, and the ways in which our speaking up comes back to be visited on our kids–well, they are not okay.

I’m reflecting on this issue at the moment because, after years of not having to encounter unprofessional people, thank goodness, we finally did again. Just like in the past, we did speak up, but this time, it was without so much reservation. Might it still come back to bite us? There is always that possibility. But this time, I dread it just a little less.

Maybe we all (educators and parents) have to unlearn the ways in which we anticipate the worst from one another. I am not inclined to sugarcoat how hard this is, from both sides of the table. I’m not even talking about formal communications like meetings. It’s more like running into a former member of the child study team and casually updating them on your kid, only to be told by a current member of said team that your chat was inappropriate and you should not have talked behind their back. Or trying to form friendships with other parents, but everyone being so traumatized and easily triggered by school related experiences that we cannot speak authentically to one another. Or having racism/different expectations on mom vs dad be such an ingrained part of dealing with school, but no one ever admitting it’s there, and because you brought it up once, school clammed up. Or you tried to resolve a bullying issue, and in response, the school stopped allowing you to walk unescorted to your child’s class, but other parents could do it.

It is not the fact of having children with different needs that is complicated; it is the fact of people making it so that we have to separate from the larger community to advocate for them. And then gaslighting us into operating as if it’s safer to keep our own counsel. This stuff plays such a big role that families can end up moving to different towns when it becomes clear that relations which were broken cannot be repaired, and their kids could potentially continue to pay the penalty till the clock runs out on their IEP services. Which could be years. And every single accommodation could be made into a fight for all those years.

I wish I could say Don’t let anyone tell you that you can’t talk about your special ed experiences. But the fact is, even in online support groups, we are cautioned against full sharing, because, should litigation occur, everything is fodder. I think that the fact of institutions and entities always being a part of A’s life is the most grueling part of being his parent. We need them, but we surrender so much agency, even the freedom to speak about how they affect us.

I remember once being taken to task by a school aide, who told me that because we had insisted on the district making a certain decision (which A was entitled to by law, but even when we invoke those rights, it can end up being a miserable victory), the aides had ended up being reassigned to different kids and classrooms, and they were angry with us. After I had recovered from the shock of being raked over the coals, because wow, I replied that what she hadn’t heard through the grapevine was the three offers to mitigate the impact which we had made, which the district had swiftly declined.

She looked clearly horrified that she had made an assumption, but I was left thinking about how many times stuff like this has happened. The phone calls we have received telling us we should not have sent a certain email or exchanged a piece of information. The ways in which school staff learned to see us as the enemy. The ways in which we stopped feeling free enough to be part of our children’s school lives because we felt the frosty winds of paranoia. That is a really unjust outcome for families–how we don’t get the big events, like concerts and sports and plays, and we also don’t get to be classroom volunteers and we don’t know that events are happening because our kids are rarely included in them. And other parents barely see us when we attend them because they don’t know us. Why would they. They are often inclined to see our children as resource grabbers, whose costly education drains the district of money for gifted programs and art enrichment.

We spent years thinking of special ed as some kind of shameful club whose one rule is that you can’t talk about the club. I do not know how to convey the trauma this causes. The ways in which the silence makes us strangers in our communities. The surface connections it renders us in towns we have lived in for years, paying the tax of eternal resident aliens.

But R got older, and the middle and high school staff are so much less harrowing to work with; and A left the district, and his current school is wonderful. Those two sets of factors helped immensely. It’s also….the pandemic. Or the related school closures, to be precise. Seeing how much R actually thrives away from the physical realities of being at school; and us being an actual part of A’s school day, even though that is not an easy task, and my husband is usually a frazzled shadow of his former self by mid day. But it’s the fact that school and home are not these mutually exclusive entities anymore, which allows us, for the first time, to see what the obstacles to engagement and learning are, and which periods in the day seem to trigger anxiety or fatigue. Those are clues we didn’t have earlier. We also get to interact meaningfully with other parents. Additionally, the whole experience has helped A have a reset about how to spend his time at home. This is not a small impact; it’s really character building and huge. While I don’t want to minimize the regression because of remote instruction, I can’t think of any other way we could have garnered the data of almost one year.

This is not to say we won’t be relieved if A can return to school at some point. The building has reopened, but we are not sending him back until Covid rates and deaths are actually better controlled statewide. It is not easy to hold to this decision, and as long as this mode of operating is in effect, we are caught in rote routines and have no access to external resources.

Nevertheless, I cannot reiterate enough that the fact of A’s needs is much less of an issue than the isolation which is a reality even without a pandemic. I think school districts and communities can do a lot better than look the other way in such matters.


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