On-ramp for Anxiety

I am excited to start this blog. After almost 30 years as a teacher, and 5 years as the mother of a “special needs child”, I have a lot to say about education, box checking, and inclusion.

I hope that this blog will raise provocative questions that get its readers commenting, and I hope that it will restrain in air quotes terms we overuse and under-think. Yes, like “special needs.”

My genius writer friend Emily Rapp Black advised me to keep my blog “super focused” (those are wise quotes, not air quotes.) Its goal is the same as that of Builder Bees, which is why it is located on our website: to just-right-think inclusion – what it means, what stands in its way, how we can manifest it in our schools and communities, and how the Builder Bees hive can exemplify it. Any anecdotes shared will be anonymous, and in the service of our mission to examine and promote inclusion that is authentic rather than tokenistic.

Inclusion is one of those words that we toss around without unpacking it. “What is inclusion?” a young woman asked me, who herself has been excluded for much of her life. The complete sentence version of what I told her is: “It is making sure that our world works for everyone; it doesn’t just say ‘sure, come on in’.”

What do I mean by that? Let me put it this way:

We make buildings wheelchair-ready by installing ramps and elevators. What would the equivalent of a ramp be for people with a barrier to accessibility such as anxiety?

When I was a child, my anxiety was a grape in my throat, silencing me. Now I have a name for the phenomenon: selective mutism (SM), a form of social anxiety so severe that sufferers feel that they physically cannot speak in certain situations.

Anxiety. A word used to shame and (further) silence. I am told: “Orley. Orley. Calm down.” Or “Orley. Orley. Slow down.” Or “Orley. Orley. Breathe.” Did you feel more or less anxious reading those words? Me too. And the tone makes me feel like I am five years old.

Most of the time I don’t feel anxious before I hear these reprimands, and they feel unfair. Would a person in a wheelchair be told, “Just walk”? If a student in a wheelchair applied to a school, the administration would either say that the school is not wheelchair-accessible, or it would make the necessary adaptations.

Parents of out-of-the-box children are often told that a school is not accessible. “We can’t meet her needs,” they may say. Or “We won’t take children with an IEP.” The IEP blog is not far behind this one.

If a school accepts a child with selective mutism, it is making a commitment to become accessible to her. A ramp is tangible, familiar. The accommodations necessary for a child with anxiety to be included are more nebulous, and rely on an equal partnership between teachers, administrators and parents. Is the term equal partnership tautological? Not often enough in this context, unfortunately.

I know a child whose anxiety responds dramatically to one thing, and it is not medication. When she feels safe, she talks. When she has a friend who makes her feel safe, she talks and laughs and even gets in trouble.

If this child had anxiety medication that needed to be taken at school, a parent could send the accommodation in a ramp-like “must be taken at lunchtime with food” package. “Will shut down if she is removed from her friend” is not ramp-like. It relies on that elusive inclusion-inducing ingredient: trust.

The problem is that a request like “please don’t remove my child from her friend” sounds so Westside Private School Parent. Therefore, it has the opposite effect of the one hoped for. An administrator who doesn’t accept the premise that a bestie is a perk for all, but a ramp for this child may not understand the urgency of the request.

This child was taken away from her bestie, and other perks of being in her class such as a challenging curriculum, and privileges that came with being in the oldest class. She shut down. She shouldn’t have been taken off her medication. Progress was reversed.

This is far from an isolated case. Too many parents of children with anxiety have to take on the role of advocate, in addition to their other roles and professions. Too many children with anxiety have needs that schools are not willing to accommodate or prioritize.

The nature of inclusion and the question of what accessibility for anxiety should look like are issues deserving of robust discussion. And I want to have that discussion with you.

So please comment, or email me at Orley@builderbeesla.com. If you are here because you are the caregiver of a girl (and I include teachers in that category), please continue to insist that her needs come first.