Sunday, December 10, 2017


You have to understand
that nothing good comes after the words
“You have to understand,”
only a slap of somebody’s idea of reality
that you are woefully ignorant of
and must be made to comprehend.

You have to understand
that your child is limited
and resources are limited
and options are limited
and the system’s ability to do anything
other than what the system has always done
is limited
and tolerance for parents
who refuse to understand that
is limited too.

You have to understand
that the experts know everything
and you know nothing
and should sign the papers
and say thank you.

You have to understand
that you can only ask for appropriate, not best,
because best is not for children like yours
or parents like you.

You have to understand
what sitting in a room with strangers
and hearing your child reduced to numbers,
bad numbers,
hopeless numbers,
year after year after year
can do to a parent.

You have to understand
the way we are weaponized
by the endless well-meaning negativity
and that fighting is the only alternative to fear,
hassling to hopelessness,
adversariness to abdication,
strength to weakness.

You have to understand
that we can’t not advocate,
we can’t not react with anger and doubt and suspicion,
we can’t not take it personally,
we can’t not make it our issue,
our identity.

You have to understand
how it follows us home from school--
the defensiveness, the readiness to assume the worst,
the understanding that everything imperfect
is ours to find a fix for.
Mama Bears can’t hibernate.

You have to understand
how habits formed when our children are young,
instincts sharpened, reflexes honed,
live on well past their usefulness.
When we’re long-forgotten by the educators
who said those things that still burn in our brains,
who started those files that consumed our lives,
who made those judgments we still press against,
who set us on our road of second-guessing
every last decision and triumph and certainty,
we remember everything.

You have to understand
how advocacy denies us acceptance,
and appropriate will never seem best
ever, anywhere, even when maybe it is,
who knows?
We will not recognize it.
We will never let our guard down.
We will never quite trust.
We will never really relax.
We will never understand.

Monday, March 06, 2017

Are Your Child's Needs Part of Your School's Emergency Planning?

Back when my son was in school, and after lockdown drills became a thing, I remember getting notes complaining that he was not behaving with appropriate quiet stillness and asking that I talk to him about the seriousness of the drill and the need for everyone to practice laying low and praying not to get shot. And I appreciate the stressful situation school personnel are in. I'm sure they're freaked out by the implications of lockdown drills themselves. A kid talking and making noise and moving around and being disruptive could be a life-and-death issue. I get it.

But none of that changes the fact that disabilities don't come with an emergency off switch. If a student has a diagnosed disability that impairs the ability to sit still and be quiet — and that makes regulation in times of stress even less likely — that disability is still going to be present and still going to require support and accommodation no matter how many memos you put out stating the lockdown rules and how many notes you send home.

I've been looking around for a while for information on how exactly schools are supposed to manage this kind of challenge and didn't find much in the way of information. Finally, I saw an article from the journal Teaching Exceptional Children titled “Supporting Students With Disabilities During School Crises: A Teacher’s Guide,” written by two special-education professors who also have kids with disabilities and also wondered, “Why isn't anyone creating resources to handle this really obvious problem that is not going to go away no matter how much you may wish it so?”

I invited the authors, Dr. Dusty Columbia Embury and Dr. Laura Clarke, to Q&A with me about this on the Friendship Circle site, and that post is up now: “How to Keep Students with Disabilities Safe in Lockdowns, Evacuations, and Other School Crises.” Please, read both these articles and share them around. This is something we all have to put our heads together about.

Note that this is not just about kids with behavioral or sensory issues. Think about what happens when your kid is locked down in one room and the insulin she's scheduled to get right now is in another. Think about how your kid who has to be moved from a wheelchair to a chair and back is going to be evacuated quickly. If your child has a seizure or an allergic reaction at the worst possible time, would the staff they happen to be with know what to do?

No one knows when a real disaster is going to happen or how anyone will react when it does. But schools think it's important enough to practice and practice and practice for it. Those practices alone can be a disaster for kids with disabilities, if they don't include rehearsal for the accommodations that are their legitimate need and right. If your school's not on top of that, print out the two articles linked above, schedule an IEP meeting, and get some balls rolling.

Wednesday, January 18, 2017

If Back-to-School Night Speeches Were More Like IEP Meetings

[The recent Supreme Court case involving what constitutes a free and appropriate public education has brought this old post to my mind again. Imagine the court cases that would ensue if every parent had to deal with what parents of kids with special education experience constantly!]

One of my favorite items on my list of reasons to go to back-to-school night is the opportunity to listen to an administrator give an ambitious, promise-heavy speech about what a productive year it’s going to be, how much the school believes in the kids, how much potential the students have, and how the school is going to do everything to help each student perform to the peak of his or her ability. Not something you hear around your average IEP table, where we’re programmed to expect “appropriate” instead of “best,” modest progress toward measurable goals instead of grand achievements, and outcomes weighted with a heavy dose of reality.

What if the principal got up and gave that kind of speech at back-to-school night? It might sound something like this:
Assembled parents.

This speech may be a little hard for you to understand, because I and the large team of professionals behind me on this stage know all about education and you know so little, but I’ll try to talk in terms you will understand.

This school year, the teachers and staff will be dedicating themselves to giving your children the absolutely most appropriate education for their particular abilities. We have assessed each of your children, and frankly, most of them are never going to amount to anything. They’re going to wind up living in your basement and working fast-food. We’ll give them the education they’ll need to work a cash register or a mop, and save you the money you’d throw away trying to get them through five or six years of college they’ll never use. We’re realists here. We’re not legally required to deal in dreams.

Since it is our strong and considered belief that kids do best when they are educated with kids exactly like them, without anyone who deviates from their perceived potential for achievement to weigh them down, we’ve placed your children on a number of educational tracks, from gifted to reasonably bright to average to below average to barely hanging on to here because the law requires it. Your child will be spending the majority of his or her school day, including lunch and recess, with children on his or her precisely and professionally selected track. Perhaps we’ll let them mingle at gym. If the state insists.

Our school has state-of-the-art technology and classrooms carefully designed to maximize learning, and those of you who have children who have been assessed as having the potential to grow up to become taxpayers and politicians will certainly enjoy seeing those tonight. For the rest of you, we’ve cobbled together a collection of dark corners, library tables, converted closets, and windowless rooms in which to educate your children. It’s not like you need a SmartBoard to learn how to say, “Do you want fries with that?” We’re all about what’s appropriate, and what could be a more appropriate classroom for a future food-service employee than a table in the cafeteria? You’re welcome.

We hope you will appreciate the tremendous effort we have put into determining just how much effort your child deserves, and that you will celebrate with us the stone-cold appropriateness of all the educational opportunities you witness tonight. Just to be sure, we have some legal paperwork for you to sign on the way out of the auditorium signifying your approval of whatever the heck we decide that appropriateness entails. Please note that attorneys for the school district will be stationed in the lobby by the bake-sale table to quash any complaints.

Thank you, and have a pleasant evening.