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.

Friday, October 07, 2016

10 Things I’d Like to See Maya DiMeo Take On

So we’ve now got three weeks of ABC’s Speechless to judge from, and I’m still loving it pretty hard. It’s fulfilling my hopes that it would be both in-jokingly true to the experience of raising kids with special needs and flat-out funny by anyone’s sitcom standards. I’m happy that J.J. is allowed to be an actual teenager, with teenage-boy interests and concerns, and that his mom sometimes makes mistakes that are all too recognizable to me.

There are some roads the show has chosen not to go down — by making a big point of the fact that J.J. is NOT in special ed, oh no no no, and having the principal and staff be hyper-cooperative rather than actively obstructionist. This means I will not get my dream of watching Mama Bear Maya take apart an IEP team (she could still be an advocate for a friend at an IEP meeting, right? right?) or fight an administration that doesn’t want any part of inclusion or her kid at all. That might not be so funny, I get it. I’ve been there, and it’s not funny at all. But I bet there are parents who were wishing they could jot down some script-written zingers for future use.

Fortunately, there are plenty of high-pressure special-needs-related situations still available for Maya to be righteously indignant at, and I look forward to watching her scorch some earth dealing with the following:
  1. An insurance company denying a claim.
  2. A doctor’s office keeping her and J.J. waiting for a couple of hours.
  3. A doctor acting like a know-it-all.
  4. Extended family members who snipe and second-guess.
  5. Gatekeepers who stand between her and equipment J.J. needs.
  6. Speech therapists who have opinions about J.J.’s communication options.
  7. A random visit from Child Protective Services.
  8. Employers who refuse to give J.J. a summer job.
  9. Online commenters.
  10. Crushing doubt and guilt that maybe every decision she’s ever made for her son has been wrong, driving her to hide in her room weeping while her family tiptoes lightly around.
Wait, maybe #10’s not that funny? I was hoping Speechless could find a way to make me laugh about it. What would you add to this list?

Thursday, August 11, 2016

Back-to-School Checklist for Parents of Kids With Special Needs

You may have barely made it through the transition from school into summer, and guess what? It’s time to start the long and traumatic transition from summer back to school. For y’all, anyway. I am gloriously free of kids going to school at the moment, and I can use all the psychic energy I’d have put toward getting their programs in order to find them a job, please a job, any job. But that’s another post. When my kids were of school age, I remember well how I spent the last sweet weeks of summer: calling the special education department day after day after day, bellowing Where is that stuff you promised? Swear to me that it will be in place on the first day! Swear it! (Spoiler: It wasn't.)

Based on those years of sad experience, I can tell you that there’s lots more to back to school for parents of kids with special needs than just picking up some notebooks and outfits. Add these 27 items to your to-do list. And don’t ever assume that because you made sure it was in the IEP, you never have to check it again. Ha! Wouldn’t that be nice?
  1. If your child needs a one-on-one paraprofessional, make sure the school remembers that and isn’t just planning to hit the pause button on your child's disabilities for a few weeks while they figure their staffing out.
  2. If your child needs special equipment, or people with special training, or ramps, or elevators, or therapists, or specialists, call and make sure they will be in place. Call again. Call daily.
  3. Just because your child has always taken the bus does not mean that this year the bus will show up. Call the transportation department and make sure.
  4. And that car seat your child is supposed to have for said bus? Make sure they have that too.
  5. Make sure the school nurse knows about your child's medical special needs.
  6. Make sure there’s a school nurse.
  7. Make copies of your child’s IEP to distribute to all those people you’d just assume would have been given it. Like the teacher.
  8. Put together a “greatest hits” version of the IEP for the people who do need to know about specific things, do not need to know everything, and would never ever read that whole humongous gob of paper anyway. Like the gym teacher. The specials teachers. The lunch lady. The paraprofessionals. The bus driver. The bus aide. And basically everybody whose misinterpreting of your child could cause problems. So, basically everybody.
  9. Examine your child’s potential school clothes for problems. Collar too easy to chew? Shoes too easy to kick off? Seams too crazy-making? Shop again.
  10. If you’ve received assurances about your child having a particular teacher, a particular classroom, a particular school, call the special-education office to make sure. And keep calling. Changes happen right up until (and right on past) the last minute.
  11. Stock up on special supplies: the huge binder that keeps your kid from having to go to her locker; the spiral notebook with the spiral covered so your kid can’t pick it apart; the notebooks color-coded for different subjects and purposes.
  12. Condense your philosophy on the best way to handle your child into a persuasive ten-page intro to get the teacher off to a good start. Then cut it down to five pages. Then two. Then one. Brevity is important.
  13. Make copies of twenty or thirty Web articles and book pages to go along with your one-page intro. Backup is important.
  14. Worry that you’re giving the teacher too much to read right at the hectic start of the year.
  15. Worry about everything you left out of your intro for the teacher. Worry that the teacher will be offended by it, or ignore it entirely. Worry that you have a reputation for making excuses for your child and telling teachers how to do their job.
  16. Worry that the school supplies you got won’t work this year, or will make your child look different, or will go into a locker or desk and never come out.
  17. Worry that no matter how many times you call, your child will be in the wrong class, with the wrong teacher, in the wrong school. With that one kid who sets your kid off.
  18. Worry that your child’s clothes are all wrong, will make him/her look odd, will be uncomfortable, will be against some new dress-code rule.
  19. Worry that the need-to-know IEP cheat sheet info you’ve given to all those school people will either be ignored or get you in trouble.
  20. Worry that you’ve forgotten someone who should have your child’s IEP but won’t unless you provide it yourself, and your child will suffer for it.
  21. Worry that just because there was a school nurse when you called doesn’t mean there will be a school nurse on the first day of school. Or the second, or the third, or …
  22. Worry that the nurse will forget your child’s special needs, or not care, or overreact, or underreact, or farm that part of the job out to an untrained paraprofessional.
  23. Worry that the car seat that comes on the bus will be the wrong size, or the wrong brand, or broken.
  24. Worry that no matter how many times you call, the bus still won’t come. Or will come too early. Or too late.
  25. Worry that all the equipment and trained personnel and building features your child needs just to, you know, be in a classroom and function will seem like silly little details to the people responsible for them.
  26. Worry that if there is a paraprofessional in place for your child, he/she will be awful, or untrained, or inappropriate in some way. Or, you know, missing.
  27. You know what? Just lie in a dark room from now until next June with a wet rag over your eyes, worrying. That’s a full-time job right there.

Friday, August 05, 2016

Learning to Say, “That Sucks”

A scene on an episode of Parks and Recreation I watched the other week as part of our Parenting Roundabout marathon has stuck in my head lately and got me thinking of the general unsatisfactoriness of trying to fix another person’s problems. On the show, the situation involved a man trying to cater to every complaint of his pregnant girlfriend, and being schooled by some friends that all she really wants is for him to listen to her problems and say, “That sucks.” It’s posited that this is all women really want, and I don’t know about that, but ... maybe. Sometimes. Some days.

But what’s struck me about it more this time around is how applicable it is to parenting. Even with typical kids, it’s often better to just step back and offer sympathy without judgment and without jumping in to make everything better. With our kids with special needs, it’s often impossible to jump in and make everything better, since it’s not always easy to know what exactly the problem even is. When your kid’s having a tantrum or a meltdown or any of so many sorts of discombobulation, trying to fix things so very often makes everything worse. Ditto problems at school and with friends. Certainly there are times you have to intervene, but I bet there are more times when “Yeah, that sucks” and a sympathetic presence would be at least as helpful.

I’m at a point of parenting young adults, and the “jump in and help!” strategy is getting less and less successful. As hard as it is to turn over the advocacy reins to amateurs who haven’t been training at the School of Hard IEP Meeting Knocks for years and years, it’s a necessary step ... and over and above that, parental fixing just stops working at some point. It’s hard to get complete information about what's going on in any given situation (oh, how I miss my days of being able to get the scoop from cooperative paras and therapists). Advice given often turns out to be the absolutely wrong thing to do. Young people become frustrated by the lack of respect and empowerment, or else they learn helplessness, and then you’re all out of luck.

It is so, so hard as a parent to sit back and say, “That sucks.” It is so, so hard not to jump in and fix things. It is so, so hard to not KNOW how to fix things, or even what needs to be fixed. I’m going to give this stepping back and sympathizing a little try, though, and see how far things fall apart without me holding them together with both hands. They can’t fall too far apart, right? Nothing too bad could happen? Because if I’m wrong about this and I really do have to figure every dang thing out myself and fix every problem and anticipate every outcome ... that would suck.

Monday, June 06, 2016

Why You Really Don't Want Cameras in Your Kid's Classroom

There’s been a lot of talk lately about cameras in the classroom, and I know a lot of parents of kids with special needs think this is a great way to prevent and identify abuse by teachers of our kids who are unable come home and tell us what happened. I get how appealing that is. There were plenty of times I longed to be a fly on the wall in my child's classroom. Yet the idea of an undeniable, video-preserved record of my child's day at school terrifies me, and I'm pretty sure it will cause way more trouble than it will  prevent. Consider these unintended consequences:

Classroom stress goes up. Even great teachers who would never be abusive are going to feel tense about having a camera trained on them throughout their work day. Would you do a better job under those circumstances? For a lot of kids with special needs, more stress in the classroom = more behavior issues. You're making it worse.

Your child's right to privacy is violated. Does every wrong answer, every social faux pas, every bit of misbehavior, every nose pick really have to be preserved forever on video? Have mercy.

That video's going to turn up at your IEP meeting. Oh my gosh, you better believe it. And it's going to be a greatest-hits compilation of every instance when your child confirmed the need for everything the school is claiming and recommending. Will you even have access to the raw footage to make your own mix? Wouldn't that be a violation of every other kid's confidentiality?

No more rules broken in our favor. You know how you talk to your kid's teacher and ask for special consideration, maybe a little variation from the IEP, a little leniency, a little something extra that nobody needs to know about? Yeah, kiss that goodbye.

The money comes from somewhere. How many better solutions and opportunities are going to get thrown on the scrap heap to pay for those cameras and all that monitoring?

Instead of hurling money and technology at this problem, might there be better, cheaper, and more effective ways to deal with classroom abuse? Can we at least try the following first?

Train all teachers and aides for the kids they will be working with. This should be the most obvious thing in the world, and yet parents would be shocked to know how little it's done. Not saying this is an excuse for abuse or a reason for it in all cases, but it surely, surely does not help.

Stop sticking all the behavior problems in one classroom. If you're honest with yourself as a parent, you know how out-of-control extreme behaviors from your child can make you feel. Imagine having a classroom full of them. It is a recipe for disaster, and yet schools regularly dump all those kids on one teacher.

Get serious about behavior intervention. No more allowing months to go by between identifying a problem in a classroom and getting a specialist in to strategize it. There's no pause button on this stuff. Address it immediately.

Create a way for personnel to report abuse without repercussions. Other adults in the classroom are already recording this stuff in their brains. Figure out why they're not saying something and fix that.

Show respect for kids with special needs all around the school. Abuse is easier when "those kids" are in some classroom away from everybody else and no one ever sees them at recess or lunch or in the hallways or feels the right to question. Even self-contained classes can be included in the school community.